Untitled

The Ethics of Care
Beginning with a focus on the ethical foundations of caregiving in health and

expanding towards problems of ethics and justice implicated in a range of issues,
this book develops the notion of care itself and its connection to practice.
Organized around the themes of culture as a restraint on caregiving in different
social contexts and situations, innovative methods in healthcare, and the way in
which culture works to position care as part of a rhetorical approach to dependency,
responsibility, and justice, The Ethics of Care presents case studies examining
institutional responses to end-of-life issues, the notion of informed consent,
biomedicine, Indigenous rights, and postcolonialism in care and theoretical
approaches to the concept of care.
Offering discussions from a variety of disciplinary approaches, including
sociology, communication and social theory, as well as hermeneutics, phe-
nomenology and deconstruction, this book will appeal to scholars across the social
sciences with interests in healthcare, medicine, justice and in the question of how
we think about care as a notion and social form, and its relationship to practice.
Alan Blum is Executive Director of the Culture of Cities Centre and Senior
Professor of Sociology and Communication and Culture at York University,
Canada. He is the author of The Grey Zone in Health and Illness, Theorizing, The
Imaginative Structure of the City, and The Lived Experience of the Dying Body,
and co-author of On the Beginning of Social Inquiry and Self-Reflection in the
Arts and Sciences.
Stuart J. Murray is Professor and Canada Research Chair in Rhetoric and Ethics
in the Department of English Language and Literature and the Department of Health
Sciences at Carleton University, Canada. He is co-editor of Critical Interventions
in the Ethics of Healthcare: Challenging the Principle of Autonomy in Bioethics.
Routledge Studies in Health and Social Welfare
1 Researching Trust and Health

Edited by Julie Brownlie, Alexandra Greene, and Alexandra Howson
2 Health, Illness and Culture

Broken Narratives
Edited by Lars-Christer Hydén and Jens Brockmeier
3 Biopolitics and the “Obesity Epidemic”

Governing Bodies
Edited by Jan Wright and Valerie Harwood
4 Globalization and Health

Pathways, Evidence and Policy
Edited by Ronald Labonté, Ted Schrecker, Corinne Packer, and Vivien Runnels
5 Gender Equity in Health

The Shifting Frontiers of Evidence and Action
Edited by Gita Sen and Piroska Östlin
6 Perspectives on Care at Home for Older People

Edited by Christine Ceci, Kristín Björnsdóttir, and Mary Ellen Purkis
7 Transnational Social Support

Edited by Adrienne Chambon, Wolfgang Schröer, and Cornelia Schweppe
8 The Transformation of Contemporary Health Care

The Market, the Laboratory, and the Forum
Tiago Moreira
9 Children with Gender Identity Disorder

A Clinical, Ethical, and Legal Analysis
Simona Giordano
10 Social Housing in Transition Countries

Edited by József Hegedüs, Martin Lux, and Nóra Teller
11 Philosophies and Practices of Emancipatory Nursing

Social Justice as Praxis
Edited by Paula N. Kagan, Marlaine C. Smith, and Peggy L. Chinn
12 Comprehensive Care for HIV/AIDS

Community-Based Strategies
Teresa L. Scheid
13 The Ethics of Care

Moral Knowledge, Communication, and the Art of Caregiving
Edited by Alan Blum and Stuart J. Murray
The Ethics of Care
Moral knowledge, communication,
and the art of caregiving
Edited by
Alan Blum and
Stuart J. Murray
First published 2017
by Routledge
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© 2017 Alan Blum and Stuart J. Murray
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of the editorial material, and of the authors for their individual chapters, has
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British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging in Publication Data
Names: Blum, Alan, 1935–, editor. | Murray, Stuart J., editor.
Title: The ethics of care : moral knowledge, communication, and the art
of caregiving / edited by Alan Blum and Stuart J. Murray.
Other titles: Ethics of care (Blum)
Description: Abingdon, Oxon ; New York, NY : Routledge, 2016. |
Includes bibliographical references and index.
Identifiers: LCCN 2016004017| ISBN 9781472475596 (hardback) |
ISBN 9781315616162 (ebook)
Subjects: | MESH: Terminal Care – ethics | Caregivers | Communication |
Culture | Case Reports
Classification: LCC R726.8 | NLM WB 310 | DDC 179.7 – dc23
LC record available at http://lccn.loc.gov/2016004017
ISBN: 978-1-4724-7559-6 (hbk)

ISBN: 978-1-3156-1616-2 (ebk)
Typeset in Times New Roman

by Florence Production Ltd, Stoodleigh, Devon, UK
Contents
List of figures vii

Acknowledgments viii
Notes on contributors x
Introduction: the dialectic of care 1

Alan Blum
PART I
Institutional constraints, consent, and end-of-life 25
1 Informed consent and the social regulation of caregiver

involvement in end-of-life care 27
Diego Llovet
2 Judgment, care, and informed consent 63

Philip Walsh
3 End-of-life conflicts, the law, and Arendt’s political thinking 73

Kieran Bonner
PART II
Biomedicine, social services, and reparation in the postcolony 89
4 The time of a life: ethics and care in the case of a young

First Nations girl 91
Stuart J. Murray and Tad Lemieux
5 University–community collaboration with urban Aboriginal peoples:

case study of the Healing of the Seven Generations Canoe Project 109
Ginette Lafranière
vi Contents
6 Postcolonial negotiations: care, Aboriginal rights, and the
challenge of democracy 119
David Lynes
PART III
Communication, ethical collisions, and the realities of care 133
7 End-of-life as a symbolic order: age in an era of mechanical

reproduction 135
Alan Blum
8 Good patient–bad patient: the ethical imaginary of cancer 149

Deborah Lynn Steinberg
9 The clinical epistemology of Ludwig Binswanger (1881–1966):

psychiatry as a science of the singular 179
Elisabetta Basso
10 Critique of solution-focused brief therapy 195

Carlos Neves
11 Rethinking the concept of care 209

Han Zhang
Afterword: care, giving: an ethical critique 225

Stuart J. Murray
Index 243
Figures
8.1 Event flyer circulated via Facebook 152

8.2 “From Barbara” 159
8.3 Memorial Sloan-Kettering Cancer Center advertising campaign 160
Acknowledgments
Alan Blum and Stuart J. Murray

We would like to acknowledge the support of the Canadian Institutes of Health
Research (CIHR). This book project was made possible by a 2012–13 CIHR
Knowledge Dissemination grant, “Redefining Patient-Centred Care: New
Directions in Research on the Social and Ethical Foundations of Caregiving,” which
included a public symposium titled “Social Innovation in Health Care: Ethical
Foundations of Caregiving,” held at the Centre for Social Innovation in Toronto,
Canada on May 5, 2014. We would also like to thank Neil Jordan, at Ashgate,
for his support, as well as the anonymous reviewer of our manuscript proposal.
Finally, and not least, we offer our thanks to Nasiha Prcic and Han Zhang for
their invaluable editorial work on the manuscript, and Eni Mema for assistance.
Kieran Bonner
I would like to thank Alan Blum and his colleague, Stuart J. Murray, for inviting
me to present at the Symposium in Toronto held in May 2014 and for guiding my
paper through the publication process. As part of a panel addressing Diego
Llovet’s research, I especially thank Diego for making available his work in the
spirit of the shared tradition of critical collaborative analysis. I would also like to
thank my colleague at St. Jerome's University, Susan Brophy, who provided an
extensive and helpful commentary to my first draft of this paper.
Ginette Lafrenière
Heartfelt thanks are attributed to my colleague Donna Dubie, E.D. of the Healing
of the Seven Generations with whom I have journeyed since 2003. It has been
both an honor and privilege to work with you on this important project.
University–community collaboration cannot occur without the work executed
by my wonderful students, research assistants and staff for whom I have much
affection and admiration. Collectively, we honor the idea of being of service to
the larger community in ways that are mutually satisfying and authentic. I say
“thank you” for your hard work and dedication to my vision of community-based
research.
Acknowledgments ix
Special thanks are attributed to the United Way of Kitchener Waterloo for taking
a risk and funding the Canoe Project.
David Lynes
The intersections developed here between the issues of North American Aboriginal
rights and the arts of care and caregiving was energized in the first instance by
my attendance at a Symposium held in May, 2014 in Toronto entitled “Social
Innovation in Health Care: Ethical Foundations of Caregiving.” Many thanks
especially to Alan Blum who organized and inspired the event, for the invitation
to attend, and for the many conversations and helpful comments related to the
paper that followed. Thanks are also due to St. Francis Xavier University in
Antigonish, Nova Scotia, for its on-going support of my research and to the many
students of the Sociology of First Nations course that I teach there.
Carlos Neves
I would like to thank Dr. Alan Blum, Dr. Saeed Hydaralli, and Dr. Diego Llovett
for their encouragement, interest and analytical engagement with the piece and
the questions dwelling within it.
Han Zhang
I would like to express my sincere gratitude to my advisor Professor Alan Blum
for his critical and continuous support of my PhD study and related research. His
immense knowledge, inspiration, motivation and guidance helped shape the
thinking in this chapter. The research project referenced in this chapter, titled
“Understanding Tensions in Elder Care among Chinese Families in Toronto,” was
funded by the Community Investment Funding Program of the City of Toronto
and led by the Chinese Canadian National Council Toronto Chapter (CCNCTO).
I am deeply grateful to the co-investigators of the project, Weijia Tan and Shunxian
Ou, and members of the research team, Dr. Rick Sin, Lisa Watt, Ben Wang and
Cathy Zhao, for their generous support and engagement throughout the project.
Contributors
Elisabetta Basso is Postdoctoral Fellow at the Centro de Filosofia of the University

of Lisbon. She is also an Associate Researcher at the Centre d’Archives de
Philosophie et d’Édition des Sciences (CAPHES, CNRS-École Normale
Supérieure), Paris, and at the Innovationszentrum Wissensforschung (IZW)
of the TU Berlin, where she was an A. von Humboldt-Stiftung postdoctoral
fellow from 2012–14. Her research specializations are in contemporary French
philosophy, and history and epistemology of psychiatry. She is the author of
several publications on Michel Foucault, Ludwig Binswanger, and the history
of phenomenological psychiatry.
Alan Blum is Executive Director of the Culture of Cities Centre in Toronto; Senior
Professor in Sociology, Social and Political Thought, and Communication and
Culture at York University, Toronto; and Adjunct Professor at St. Jerome’s
University at the University of Waterloo. His current teaching and research is
informed by his work developed over the years on theorizing and methods for
the analysis of social forms, most recently in studies on the city, materialism,
and idealism in everyday life, on institutions such as law, medicine, and the
university, on the emotions, and particularly disease and suffering, and on voice,
humor, aesthetics and ethics as resources for inquiry. Professor Blum’s recent
work on birth, death and dying, the city, and mental disease and illness is
informed by this interpretive framework.
Kieran Bonner is Professor of Sociology, Chair of Sociology and Legal Studies,
and Director of the Human Sciences Initiative at St. Jerome’s University in the
University of Waterloo, Canada. He is author of two books, A Great Place to
Raise Kids: Interpretation, Science, and the Urban Rural Debate (McGill-
Queen’s University Press, 1997) and Power and Parenting: A Hermeneutic of
the Human Condition (Macmillan, 1998), guest editor of a special issue of the
Canadian Journal of Urban Research, guest co-editor of two issues of The
Canadian Journal of Irish Studies, and author of articles on theory (role theory,
symbolic interactionism, phenomenology, ethnomethodology, hermeneutics,
analysis), methodology (reflexivity, dialectic, interpretation, positivism),
Arendt, Blum and McHugh, Gadamer, Plato, citizenship, interdisciplinary
dialogue, alcohol and the grey zone of health and illness, and the culture of
cities (Dublin, Montreal, Toronto).
Contributors xi
Ginette Lafrenière is Associate Professor at the Lyle S. Hallman Faculty of
Social Work at Wilfrid Laurier University. She is the Director of the Social
Innovation Research Group and the Manulife Centre for Community Health
Research. The framework that guides and inspires Dr. Lafreniere’s work is
university–community collaboration. Dr. Lafreniere believes that public
intellectuals have a responsibility to avail their expertise and resources to the
communities in which they live and operate. To this end, she has trained, since
2002, over 60 Master’s, doctoral, and post-doctoral students in the art of mean-
ingful and authentic community-based research. Dr. Lafreniere collaborates with
dozens of health and social service providers in the province of Ontario on a
variety of projects relating to women, Newcomer, and Aboriginal issues.
Tad Lemieux is a PhD Candidate in the Department of English Language &
Literature at Carleton University in Ottawa, Canada. His dissertation research
is situated in the Canadian Arctic and investigates Inuit and Aboriginal claims
to sovereignty in the context of neoliberalism.
Diego Llovet is a sociologist of health and illness with an interest in issues of
cancer prevention and control. He is currently a Behavioral Scientist with the
Cancer Screening Unit at Cancer Care Ontario, where he conducts studies to
inform the design and improvement of province-wide cancer screening
programs and related health services. Previously, he was Qualitative Lead
Researcher at Sunnybrook Research Institute, where he led a large study to
promote colorectal cancer screening through persuasive communication, and
another one to inform the possible implementation of a lung cancer screening
program for heavy smokers. As a graduate student, he was a member of the
Culture of Cities Centre for 9 years, where he conducted research on the ethics
of caregiving in medical and public health contexts. He received his PhD (2012)
and MA from York University and his undergraduate degree from the
University of Buenos Aires in Argentina. He is a past holder of a Social Sciences
and Humanities Research Council of Canada (SSHRC) Doctoral Fellowship.
He thrives in multi-disciplinary teams and very much enjoys the experience of
effective collaboration.
David Lynes is Associate Professor of Sociology at St. Francis Xavier University
in Nova Scotia. He teaches and researches in the areas of postcolonial theory,
contemporary and classical social theory, and North America’s First Nations
and Aboriginal rights. He is also the co-coordinator of the Annual International
Conference on Analytic Social Theory held in Syros, Greece.
Stuart J. Murray is Professor and Canada Research Chair in Rhetoric and
Ethics, cross-appointed in the Departments of English Language and Literature
and Health Sciences at Carleton University in Ottawa, Canada. His work is
concerned with the constitution of human subjectivity and the links between
the rhetoric and ethics of “life,” in the multiple ways in which this term is
deployed. He has published numerous essays and book chapters, as well as a
collected volume edited with Dave Holmes, titled, Critical Interventions in the
xii Contributors
Ethics of Healthcare (Ashgate, 2009). He is working on a book-length project
on the rhetorical dimensions of biopolitics and bioethics after Foucault,
tentatively titled, The Living From The Dead: Disaffirming Biopolitics.
Carlos Neves holds a Master’s degree in Sociology and a Master’s degree in Social
Work with a clinical specialization in Children and Families. He provides
counseling/therapy services to children, youth, and families in his private
practice located in Guelph, Ontario. Carlos’s clinical work is informed by
solution-focused, cognitive behavioral, narrative, psychodynamic, and trauma-
focused approaches to therapy. His research interests include: the client–
therapist relationship, the social construction of mental illness, psychoanalysis,
moral and aesthetic representations of suicide and death, and the place of
hope in the lifeworld.
Deborah Lynn Steinberg is Professor of Gender, Culture and Media Studies in
the Department of Sociology at the University of Warwick, UK. Her research
interests include: cultures of science; gender and sexuality studies; media and
cultural theory, and mourning and politics. Her new book Genes and the
Bioimaginary: Science, Spectacle, Culture is published by Ashgate (2015).
Previous books include: Bodies in Glass: Genetics, Eugenics, Embryo Ethics
(Manchester University Press, 1997); Made to Order: The Myth of Reproductive
and Genetic Progress (Pergamon Press, 1987); Border Patrols: Policing the
Boundaries of Heterosexuality (Cassell, 1989); Mourning Diana: Nation,
Culture and the Performance of Grief (Routledge, 1999); and Blairism and the
War of Persuasion: Labour’s Passive Revolution (Lawrence & Wishart, 2004).
Deborah’s current projects include the co-authored book, Extremities: Cruelty,
Realism and Redemption in Film and Television (with Debbie Epstein), and a
longer range project with the working title: The Bad Patient: Spectacle and
Subjectivity in the Cancer Culture.
Philip Walsh is Associate Professor and Chair of the Department of Sociology
at York University in Toronto, Canada. His research interests include social
theory, the sociology of knowledge, and the philosophy of social science. He
is the author of Skepticism, Modernity and Critical Theory (Palgrave, 2003)
and Arendt Contra Sociology: Rethinking Theory, Society and its Science
(Ashgate, 2015).
Han Zhang is a PhD Candidate in the Department of Communication and Culture
at York University, Toronto, Canada. Her work is concerned with the notion
of care in the cross-cultural context and how culture influences an individual’s
subjectivity as a dialectical and topological process. Her research tries to
formulate a cultural discourse on care with influences from the humanities and
social theories that stress hermeneutic and psychoanalytical approaches to the
study of subjectivity and cultural differences. She has a BA in Studio Art and
Mathematics from Mount Holyoke College, Massachusetts, and an MA in
Communication from the Chinese University of Hong Kong. Han is a recipient
of the Ontario Trillium Scholarship and York Graduate Scholarship.
Introduction
The dialectic of care
Alan Blum
Introduction
Conceptions of care pervade not only the field of health and illness around the
problem of dealing properly with patients, the problem called healthcare, but enter
into all areas of collective life. If the primordial relation of care is often idealized
in the bond between mother and child as its sine qua non, the ruler in guises as
shepherd, guardian, or representative in political care is an important figure in the
line of descent from Plato’s Republic on. And there are great variations in modes
of institutionalizing the coexistence of authority and responsibility in relationships
such as teaching, professions, therapy, and many kinds of dissemination. In part,
I want to begin to investigate the usage of care as a point of departure for inquiry
under many similar conditions, an engagement that I hope shall begin to make
transparent structures of care and its dialectic as a situation that any wide-awake
subject must orient to as an environment of knowledge.
One way of grasping care is to understand it as the “real” object assumed in
clichés of knowledge transfer or applied knowledge insofar as care for the recipient
is the “bottom line” in all models of dissemination as the unspoken object of what
is disseminated, the value or use of the transmission for the one to whom it is
directed. In classical Greek philosophy such care was encapsulated in the notion
of life and the capacity of knowledge to “empower” life as part of the equation
of knowledge and power. Yet the empowerment of life as a worthy objective must
always work through a dialogue on the means or on the conditions for intervening
in such a way, making care for the conditions the fundamental topic of any approach
to caregiving. As Arendt (1977, 170–94) suggests, in the absence of care for such
conditions, of theorizing, we can only imagine the world as destined to be a ruin.
It is worth recovering this notion of the use value of knowledge, and so, of care,
modernized in Marx’s politics and Freud’s therapeutics, as a vision of the true
benefit of knowledge for its creator and recipient.
Ethics: care for the self

Part of this environment must include a sense of responsibility for vulnerability,
and so, what I have called a relationship to the “weaker party” (Blum 2011, 101).
Yet, there are two senses of the weaker party and of vulnerability that permit us
2 Alan Blum
not simply to approach this as a task for altruism, as if the weaker party were
inevitably a dependent other, but to recognize that the essential and primordial
vulnerability pertains to the self as implied in the question we can and should ask
of ourselves, what am I to do and what action am I to take? As Foucault suggests,
if care for the self is the fundamental task (and query) in self-knowledge, this means
that the identity of the weaker party as the other in an interaction always
misrecognizes it because the action of self-reference is first and foremost guided
by the need to work-through this problem in relation to the subject’s undeveloped
conception of the situation. Rancière (2009) recognizes this in his conception of
the ignorant schoolmaster, who must resist his sense of superiority that seems
to follow from the inequality that frames the relationship in order to come to
appreciate his own lack of command over the concept as a degree of weakness.
Thus, the leader must resist the hubris of expertise and pedantry that can
materialize in conceptions of customer care or service delivery. I begin to survey
such issues in developing a grammar of care and in this way need to concede my
own “weakness” with respect to the form of care that I seek to formulate in and
through an examination of usage that begins with the example of healthcare and
its provisioning and leads to considerations of justice.
Indeed, many have recognized in a Levinasian mood (Lévinas 1969) that
weakness or vulnerability is a parameter of the human condition correlative with
the notion of finitude, investing existence with its precarious dependency that
Thomas Dumm (2008) names loneliness and that makes responsiveness to grieving
tantamount to care. This would make care something like a requirement following
from this condition that could enjoin responsibility to anyone and everyone as in
Lévinas’s sense of accountability to the face of the other. Lévinas might say: the
main condition of care is an orientation, sensitivity, and accountability to and for
the face of the other (see what McHugh 2005 does with this conception).
We will then need to ask after the grounds of care or the situation in which it
might be said to emerge. The ontological tinge of this query has been buried in
the ever-present discourse on healthcare, which identifies as definitive some sign
of distress visited upon vulnerability, and so, the recognition of a basic asymmetry
between resourceful and resourceless with respect to some critical requirement
assumed to be shared and for which one or another is expected to initiate
responsibility. The Heideggerian conception of care as a universal parameter,
intrinsic to the existence of Dasein, can be differentiated from the model of
healthcare as delivering services to a recipient suffering an acute condition or some
chronic deficiency. Such an ontological view formulates care as following from
the basic accountability of humans assumed to be intrinsic to their mutually oriented
relations as a condition of intersubjectivity (Weber 1947).
Thus, the extreme positions in this usage seem to be the conception of care in
health as provisioning under conditions of scarcity and the ontological conception
of care as equivalent to self-awareness as two important but limited positions in
the discourse. The notion of care seems to be situated between an ontological notion
and a conception of service delivery, and to work this out we will proceed by
trying to demonstrate care for the idea of care itself and to disclose through this
procedure in advance another path into the inquiry, a path I call Impasse Analysis.
These are the rudiments intended to spell out the basic parameters of care as a
situation of action where the asymmetrical connection invites some initiative to
be taken either to relieve the distress, as in the conception of healthcare, or to
grasp the need to care as a condition of our common fate, as in ontology. Despite
my intellectual fellowship with Stuart J. Murray’s position in his Afterword to
this volume, I treat his fear that care might not yield to conceptualization as he
suggests, perhaps meaning that it is impossible to define with a sense of finality,
as something other than an obstacle but as an incentive for Impasse Analysis, for
it is precisely this ambiguity that can and does provide for the work in this volume.
Indeed, what Stuart calls “the fraught relation” between care and giving turns out
to be one way of framing the problem of this volume as discursively accessible
rather than an impediment.
As a discourse in collective life we constantly note the operation of such
assumptions in many areas when infringements are recognized, such as the
absence of responsibility in child support litigation, in tales of rejection and
abandonment, in failures to exercise responsibility for care in everyday life, or
for showing sensitivity to others who are led to expect such attention and
recognition, and in examples of fiction such as Lord Jim or The Fall when
characters suffer guilt for inaction in crucial situations. Though a Grey Zone, the
very force of the distinction between care and its absence confirms the
phenomenon as a social fact and as a perennial problem to negotiate. In this sense
the professions have emerged in specific ways as institutionalized mechanisms
for the organization of care, and institutions such as university, health, religion,
and even the family and its administration by amateurs have been identified as
significant situations in caring. The extremes of care assigned to political leadership
(and its corrupted shapes as domination, tyranny), or to the parental function (and
its corrupted shapes as paternalism, maternalism, abandonment, authoritarianism)
often risk glossing dialectical nuances more palpable in teaching, therapy, and
healthcare that could then be played back to permit us to better understand these
other social forms.
Care not only applies to the distress of another, but in its very development and
application to any other, must make visible the ambiguous course of action for
the one exercising care, positioning us in a triangulated relationship, subject
(giver of care), object (cared-for), and the notion of care itself as an enigmatic
relationship that connects all and yet exceeds their determinate interaction. In this
sense, the “third” of care must be the notion itself, the relationship to the
“whatever” of care. This serves to introduce the idea of form in the strongest sense.
Method of Impasse Analysis

My method of Impasse Analysis developed with colleagues over the years
formulates an interpretation as heuristic rather than algorithmic (see Swanson 1971,
150–5 on the difference), as provoking an impasse, and the impasse making possible
a conversation that in its turn demands a narrative as both unfinished and amenable
4 Alan Blum
to evaluation (just some examples over time: McHugh et al. 1974; Blum and
McHugh 1984; Bonner 1988; 1999; 2001; Blum 2003, 2013; 2014; McHugh 2005;
Raffel 2013). The narrative is guided by an ideal speaker modeling the ad hoc
flow of improvisational theatre and the contingencies of a trajectory of mutually
oriented interjections (Blum 2011). I provide some illustrations of this method in
the present example by recreating a discourse on care as a provocation that is
designed to open up reflection on the problem of justice.
In this sense I propose that a conception such as care is like an image, a beginning
always in need of development, and as such appears in social life as an “object”
that is oriented to in many ways (hence fertilizing usage and a discourse, probably
what Deleuze means by an assemblage), and that makes an interpretation, far from
a summary of such views, a method designed to open up (and hence provoke) a
conversation over the question of the signifier itself (the relationship of care in
this case)—what it is and what it is not—that will remain insoluble and irresolute.
Therefore, the signifier that is taken to open the analysis is exposed as a site of
ambiguity that becomes the locus of a conversation fated to be indeterminate and
yet accessible to thought and representation. The production of ambiguity is then
not the end of the provocative interpretation but a means of facilitating the
conversation by shaping it in terms of a narrative imaginary that is illustrated in
the analysis as a specific ethical collision.
So if the problem at first seems the question of what is a paradigmatic
relationship to care, whether ontological or the provisioning of caregiving, this
method is designed to expose the ambiguity inherent in this relationship as if a
mirror of collective anxiety over a problem and its possible “solutions,” not by
declaring a final judgment but by proposing a specific relationship, in this case,
the tendency of any supportive gesture to enforce dependency upon a recipient in
ways that complicate the gift of giving and its tenuous relationship to justice.
The scope of care

Therefore, even in its typical link to the conventions of caregiving, care has a
lineage that exceeds health as part of a discourse on responsibility. A feature of
the discourse is its attention to those deemed vulnerable in some sense, for
example, the poor, physically dependent, those who are casualties of social
section, or of irrational actions and violence, but it is also a category that can include
children and even employees. Thus, care can be seen as a requirement, even a
demand, calling upon those in certain positions to exercise responsibility for others,
but in ways that are always (or typically) contestable. Such expectations invariably
lead us to ask to whom care is directed (it could be anyone and everyone), on
what occasions, and often, why us and not someone else, where that “someone”
might even apply to the recipient as in the vitriolic response that claims we are
not obligated to care for those who should take care of themselves. Care then raises
questions about the borders of action and the lines separating one from the other.
As part of this interpretive terrain we can identify “objects” of care such as the
vulnerable, dependent, everyone, or no one if care is merely an abstract universal.
We might also identify as a subject only those in position or again everyone or
no one since care seems to many to be indefensible as an innate duty, but rather
a matter of discretion (for example, for political philosophers who have argued
that there is no necessity that binds people to care as a right or duty), in contrast
to others who treat the connection between the right to care and the duty to provide
it as an indubitable condition for being fully human. In playing off such a Grey
Zone concerning assumptions about who deserves what and how, when, where,
and why, we note that care connects decisively to a discourse on justice.
Then again, between object (recipient) and subject (caregiver) as a relationship,
how is care thought to get done, as provisioning or the doing of what is required,
or more, as in a generous attempt to give above and beyond the minimum, to offer
a degree of hospitality that Bataille (1985) used implicitly to distinguish general
from restricted economy? Here what comes to mind is the contrast of Simmel’s
miser and spendthrift, as if the doing of care can be desultory as in the provisioning
that is procedurally adequate and nothing more, or might reflect a degree of
voluptuousness that imparts to its doing an investment of affect that can range
from bedside manner to the dedication of absorbed conduct as an enjoyable end
in itself (Simmel 1971, 179–87). Yet at these extremes, frugality toward care can
be based upon an often justifiable reserve toward the suspicion of malingering
and masochism as manipulative tactics, while the enjoyment of care for itself might
evoke a whiff of martyrdom that seems to delight a bit too much in its sacrifice.
The relationship to care, to taking care of another, is a Grey Zone and never self-
evident. Further, if there is the sense of a craft of care or of care as motivated in
ways that orient to giving pleasure or even toward changing habits or values, such
a version often seems to acquire an aggressive aura that risks making it seem
presumptuous in trying to change others (especially today in terms of the fear of
disturbing the other to whom we speak). Typically, resistance to such inflections
affirms that care should keep to its requirements as maintenance and should try
to offer nothing more. The history of this discourse often shows reactions that
admonish care that seems to overstep its boundaries (in many different ways) to
stay in its place, sometimes taking shape even as legal reprisals.
That there are such conflicts in relation to care as notion and action is seen in
popular representations that reveal instances of infraction and dispute, cases
ranging from examples of indifference to abuse, from neglect, to doing no more
than the minimum, to euphemistic and formulaic attending that even robots or
teenagers are recruited to provide and are often praised as doing well, to the notion
of intimacy as the commitment to protect the solitude of the other that Rilke
described in his poetry as the condition of love as a will to be a guardian of the
other’s solitude. Further, every relationship discloses the possibility of a mosaic
of accusations about infractions of care that display such an infrastructure of
interpretations and in this shape, make available an omnipresent and evolving
corpus of materials for research and analysis. Friendship, marriage, and all
relationships are typically inundated by accusation and reprisal concerning such
infractions that range from offenses imagined to be what Goffman calls “slights”
to betrayal to perceptions of gross misconduct, all seeming to stimulate a rich region
6 Alan Blum
of interpretation around the problem of forgiveness and the conditions that make
it deserved, undeserved, or formulaic. Here, infractions against some vision of
care can range from revenge to feuds, reprisals, and war, or to amnesia as
necessary equipment for living. Care then causes us to ask of some infractions
against its name, is this unforgettable? And so, does it qualify for an archive of
the unforgiven bits of our histories that we need nurse and savor with relish at its
injustice forever, or can we put it to rest?
Constraints on care and the ideal speaker: getting and

giving the gift
These many concerns arise under conditions of the different settings in which care
is exercised, the different types of relationship ranging from the medical
practitioner–patient dyad we consider in healthcare, to the relationship of parent
to child, teacher to student, and of course leader to citizen. Again, in each case
we can ask, is care simply provisioning, the laissez-faire maintenance of survival,
or does it intervene to change habits, influence behavior, or to do a kind of re-
education? This tension exists and is contestable in each and every organizational
sphere as a struggle between giving extra and letting lie. We might suggest that
the craft of care involves the politesse or tact that can take time as in craftsmanship,
where care for the other (whether person or self or object) is developed as
a sustained focus on the quality, the particular, or the singular that takes shape
in the virtue of concentration. This concern for the craft of care as dedication to
quality even extends to the practice(s) of writing, reading, and representation
in ways that are significant but will not be taken up here. This begins to link care
to the hospitality we mention as an openness to the special character of things
that Balzac (2010) identified with an aesthetic element in what he called elegance
as a relationship to quality, an aliveness to the unspoken or intimate register of
words and deeds that escapes determination, leading to an orientation to silence
or to what is between the lines that is reflected in (real) generosity toward words
and deeds.
Could motivated care exemplify for its subject a commitment to emulate and
model such hospitality to quality by offering to mediate it in practice as a
demonstrable action? Constraints upon such generosity could range from
stereotypical expectations to boredom to linguistic pollution (Serres 2011).
Restrictions are exemplified in the idea of needing to contain or economize our
responses as reflected in obsessions over the scarcity of time (clock watching or
continuous “texting” or peeping at our messages), complaints over limited
resources as examples (as in the bureaucratic rejoinder to demand that our needs
exceed resources). Does care dare to change or confirm another, does it support
and/or give other spirit in this more active model of intervention? In this sense
many have compared Oedipus to Antigone as different relations to the exercise
of care, to its method of intervening, for the city or family (Butler 2000).
For example, Oedipus is reputed to have shown care for the living insofar as
the enigma of the plague made him think of his duty to the community, whereas
Antigone formulated care for the familial bond regardless of present effects. For
Oedipus everything was copasetic until the plague forced him to think about action
as if he was required by external conditions to reflect, whereas the plague could
have been an incentive to question its relation to the foundation of the community
and its possible legacy of crime, which he avoided examining. Oedipus was indif-
ferent to grounds, treating the plague as what medicine calls symptom removal
and not using the occasion to rethink influences of the past, his father Laius, and
its enigma, only being absorbed in short-term survival. In other words, Oedipus
seemed to lack an unconscious whereas he has been typically used as a figure to
personify the unconscious and its convoluted perturbations (see Benardete 2000,
71–83). For example, he is in a position to understand that just as Laius feared
losing his power through Oedipus, he Oedipus fears his loss of power and
recognition in the same way. In contrast to this relationship to time, Antigone
oriented to the family and perpetuity not by acting out of fear for her immediate
survival and from a desire for recognition, but through a drive to sustain the vitality
and life of a line. Whereas she made care orient to the dead both past and future
and so to perpetuity, Oedipus seemed to have a more restricted interest in his present
constituency (see Carson 2012 for a most creative translation and interpretation
of the play).
For institutional constraints, examples come to mind in law, for example, in
Canada the Tri-Council proposals on ethical regulations for research, in the typical
skepticism of police toward complaints, in medical views of the talky patient, in
professional codes such as Do Not Resuscitate Guidelines or Informed Consent
policies. In contrast, we might recover guidelines for the creation of jouissance
in the action of doing the right thing by framing such action in relation to the
classical convention of Plato’s representation of music, or Aristotle’s suggestion
that we must learn to take pleasure in doing what is right (as implied, Hobbes’s
conception of self-interest could make care a value for protecting the elite from
revolution or from being targets of violence). We also note here how guilt and
shame are typically used to motivate care by forcing reluctant offspring of decrepit
parents to do care out of respect for old ways. Care as what sociology calls
motivated compliance, or as organizing ourselves to meet the requirements of a
normative order in ways that are unquestioning, are discussed with great vigor in
Stuart J. Murray’s Afterword as examples of economic management and service
provisioning, and resonate with Weber’s and Foucault’s notion of self-management
as an institutional requirement (again, what sociology calls motivated compliance
and Lacan has formulated as the jouissance of administration).
How do institutions constrain our impulse to do motivated care or to do the
right thing (to invest care with affect, with something extra)? The scarcity of time,
space, and resources is often used to justify constraint, or as many have said, the
prevalence of self-interest (in much Anglo-American political theory) that treats
people as needing to see the consequences of gain through their action in order
to get pleasure, making it seem that doing what is right is dependent upon self-
interest as in the Hobbesian assumption that self-interest is needed to see care as
profitable because self-interest is what makes the world move. Thus, even the
8 Alan Blum
wholesome desire for self-knowledge can be seen as functional or instrumental
in this sense, and we must note here the psychoanalytic conception of knowledge
as a defense against uncertainty that represses desire in ways that make
functionalism omni-relevant (Phillips 2012, 148–68). Care becomes difficult in a
world imagined as ruled by self-interest because it is seen to require other kinds
of inducements and incentives in order to supply the giver of care with some
anticipation of gain.
If we speculate that one must move against one’s nature, it is because human
nature has been typically formulated as an incorrigible constraint on care through
its generic image as ruled by self-love in ways that make care inevitably into a
movement against the grain.
How escape the absolute of oneself? One would have to imagine a being
without instincts, without a name, and to whom his own image would be
unknown. But everything in the world gives us back our own features . . . To
present to ourselves, our non-existence before birth and after death, influences
us only as a notion and only for a few moments . . . The man who does not
adore himself is yet to be born. Everything that lives loves itself. If not, what
would be the source of the dread that breaks out in the depths and on the
surfaces of life? Each of us is, for himself, the one fixed point in the universe.
And if one dies for an idea, it is because it is his idea, and his idea is his life.
No critique of any kind will awaken man from his “dogmatic sleep.”
(Cioran 1975, 59)
The mischievous Cioran suggests that this constraint of the self always endows
the capacity for care with an aura of the miraculous, as if we need a special gift
to create a breakthrough in our thinking. In Simmel’s (2010) idiom, this concern
for something more, for some sense of quality that is intrinsic and undeveloped
in finite determinations, reflects the desire of humans for something “more than
life” but as an inclination that must emerge as part of life. The gift needed to
overcome self-interest is something akin to inspiration as the wonder often
assumed to inaugurate philosophy (Hyde 2007).
Peter McHugh formulated this feature of desire as our relationship to shared
being as part of the capacity and will to hear the call of the particular face of the
subject “to the infinity of the moral” by our learning to see and hear that summons
as “contained in every particular face” (2005, 129–56). This inspired relation to
our shared being as a means of rising above conditions is meant to capture
the living space between the infinite and the finite in Hegel (1975) and Lévinas
(1969), between the intimate and the thing in Bataille (1992, especially Part 1),
possibly between the ontic and the ontological in Heidegger (1962, especially
21–67), between the view and the gaze in Lacan (1981), between discourse and
the absolute, and between the unconditioned and sovereign in Derrida (1992), and
between rule and principle in work by myself and McHugh (1984), all of which
are partial objectifications of the Grey Zone. When we translate the surviving face
as the subject or as any “object” of care, we can begin to appreciate how a
relationship to the form of care remains one of cultivating conditions for such
hearing and seeing, for overcoming conditions that might constrain us, and so,
for cultivating the gift that might motivate our need to overstep boundaries.
Care as gift
We can strengthen these notions by reflecting upon care and its giving as in giving
the gift of care, giving voice to voicelessness. Giving the gift of care emerges
from a recognition of dependency and vulnerability because in filling in the gap
of ineptitude, propping up the unstable capacity for self-determination, we can
work to understand the form of intervention as both theory and strategy of
practical action. Here then we begin to think through the difference between the
exercise of such authority and acting out. The gift gives the gift of drive to life
as something extra, the extra touch of commitment, of jouissance, in ways that
reveal how it must satisfy needs for doing more and for moving beyond, as in
Simmel’s (2010) conception of a desire for more than life. In reflecting upon the
mundanity of teaching or doctoring we note how spending time, keeping an open
door for access, for office hours or advice, seeks to invest in time and space in
order to exemplify care as more than provisioning but as being principled (see
Blum and McHugh 1984.)
The gift, even of care, of course has a contractual base as sociology has long
noted, first in Durkheim’s (1938) conception of the unstated rules of the contract,
and in Garfinkel’s (1967) background expectancies. Judith Butler (2014) brings
out the implications of the economic model of the contract in her provocative review
of Derrida’s work on debt and Nietzsche’s discussion of the contract, but the focus
on the indebtedness to commerce leaves unspoken the richness of the sociological
legacy. Thus, in terms of care, if we explore its unstated contractual constraints,
we can turn to Simmel’s essay on faithfulness and gratitude as our principal
resource (1950, 379–96). In other words, the gift of care enjoins the recipient to
repay it with gratitude and faithfulness in ways that seem to imitate on the surface
the commercial transaction, and yet must exceed these conditions. For example,
note how we might say this of the gift of life to everyone (and about God as the
bankroller) and of birth, making any child indebted. The convenience of the
economic model of a commercial transaction as the sine qua non of the social
simply reflects its immediacy as an untheorized beginning for analysis, depriving
both gift and indebtedness of their specificity and arresting us in an impasse between
commerce and what seems like superstitious yearnings (note how Butler tries to
negotiate the exchange between two absolutisms over the death penalty). Seen as
a gift, care can always be oriented to as an imposition (as is often charged of
reparative and redemptive philosophies of rehabilitation, and extensions of human
rights and de jure citizenship) because it seems to impose upon the recipient an
obligation of faith and obedience or an acceptance of the status quo by concealing
how the equality offered is still not particular. Arguing over informed consent is
like arguing over the death penalty: Butler reveals by implication how opposing
the death penalty in a situation of judgment is as absolutistic as being for it, raising
10 Alan Blum
the question posed in the informed consent chapters of this volume, which pertain
to how we can be dialectical in a situation of judgment. In asking how to overcome
absolutistic exchange in a way that is not absolutistic, we can see that this question
makes transparent the political character of judgment per se and not simply the
death penalty. In ways similar to the example of the argument over the death
penalty, law can be seen to oppose violence and commit violence in this cause,
creating the problem of needing to overcome acting out in the absolutistic rejection
of absolutism, or of how to overcome mimetic contagion where the subject
imitates the adversary.
Indebtedness to the gift is dramatized as fundamental to the discourse on care
in discussions of postcolonialism, as David Lynes’s chapter shows so well. The
problem of the debt here comes alive in the topic of representation as re-presenting
as in the question of who is entitled to speak for whom? Lynes (Chapter 6, this
volume) asks, “But how does it follow that those secure in the knowledge of their
own rights are thereby either obliged or qualified to defend, restore or care for
the rights of others?” This usage raises the question for the discourse on care of
responsibility to the other and asks who is indebted to whom, the one cared for
as grateful for being taken care of, or the caregiver as dutiful and in a way showing
gratitude for being in such a position? This usage brings into the discourse the
problem of the unconscious, its divisions, and of the so-called guilty conscience.
The notion of the gift not only makes reference to the constraint of indebtedness
but reveals the essentially problematic conception of the debt, not only as an indica-
tion of the contract, but in its demonstration of the essential place of contractualism
in care and the fundamental ambiguity of the contract that this discloses. The
contract plays off the idea of oath, vow, and fealty as a primary bond or gesture
of allegiance, not only to another, say, a recipient of care, or in the primordial
usage, to a ruler or master, but to oneself. Indeed, it is the fundamental commitment
in care to oneself that grounds and makes possible the specific forms of allegiance
it authorizes. This discloses the primal form of indebtedness to reside in the
commitment to self and its participation in what Simmel (2010) calls the Ought.
Thus, in Judith Butler’s essay on the death penalty, it is her allegiance to the
idea of its inhumanity that must motivate her to search for alternatives such as an
overcoming of the impasse created by ideological extremes. Yet, such a position
that she develops after Angela Davis (Butler 2014, 33) would seem to apply to
anyone who claims allegiance to a doctrine and even, as she recognizes, to the
advocates who support the death penalty, creating the impasse of a sacrificial crisis
(Girard 1977) that can only be resolved stipulatively. In this way, even the
humanity or inhumanity of care must always depend upon gestures of loyalty to
notions of the Ought and specifically to some version of the self and its integrity
that is ambiguous.
Repaying the debt: theorizing the form of care

To study care, to think the being of care, because we assume a difference between
care and its absence or non-being, we can formulate the resistance to care instead
of speculating hypothetically on its absence or a world without care. This
difference between what care is and what it is not seems metaphysical, but it is a
difference created in life in practice that reflects an acceptance of or resistance to
care. The resistance to care is part of life itself and of the discourse, manifested
at that point where care can appear as unlike what is other to it (in Plato’s idiom).
We must treat resistance not as non-compliant and/or selfish but as oriented in its
way as part of its discourse or its significative chain and not limited to deviations.
How is the resistance to care possible not as simple opposition but in the
conception of its limit? I propose this first to be expressed in the idea of a
mechanical relation to the convention. So, for example, if technology reflected in
medical advances, distance education, therapy, and surgical techniques makes care
seem more powerful, on what grounds can this colonization of care by technology
be seen as a deprivation of freedom? Benevolence as killing with kindness or
sustaining servility are easy examples, also martyrdom, sadism, and the like,
but we should remember De Montaigne’s notion that the probability calculations
of medicine standardize the particular and ignore how (in a special sense) one
knows one’s own body better than an anonymous other does. So we can resist
care because of its impersonal standardization, or as in Parsons’s sick role, for its
attempt to rehabilitate us to be productive in a capitalist machine in order to get
us back to work. Even more fundamental is the resistance to the Schweitzerian
care of Christianity in “love thy neighbor,” on reasonable grounds that we can
only love what and who we know, and because anonymous care is either
patronizing as in paternalism, or an attempt to foster dependency as in tyrannical
populism or in examples of robotic, teenage altruism, or professional obligation.
The nurses are good, they are kind and cheery, but beneath their brisk
efficiency he can detect—he is not wrong, he has seen it too often in the past—
a fatal indifference to their fate, his and his companions. From young
Dr. Hansen he feels, beneath the kindly concern, the same indifference. It is
as though at some unconscious level these young people who have been
assigned to care for them know that they have nothing left to give to the tribe
and therefore do not count . . . How did I come to fall into their hands?
(Coetzee 2005, 12)
Yet it seems true that we need to exercise care toward those with whom we are
not intimate as an indication of the respect for our shared being that unites us all
(McHugh 2005). McHugh’s paper takes up a relatively undiscussed problem on
caregiving that challenges the distinction between care for an intimate attachment
and for any other, by raising the question of how we can ground care even for
our enemy as we must, that is, the question of how intimacy and anonymity
are mixed in a principled relationship to care. Elisabetta Basso’s chapter in this
volume (Chapter 9) shows how such a notion of principle can be discerned in
Binswanger’s existential psychiatry in its formulation of the imaginary of a
subject vis-à-vis a norm that embraces particular and systemic modes of expres-
sion, appearing in any conduct as a stylized sign of the self-organizing system of
12 Alan Blum
the psyche: in Binswanger’s words that Basso’s quotes,”The ability of the
psychiatrist consists therefore in going beyond the singular and contingent
psychopathological manifestations in order ‘to look for the principle which rules
the formation of the series’,” namely, the a priori structures of experience.
Implicitly in bringing out the relation of Binswanger’s work to impasse analysis,
she identifies the site of fundamental ambiguity in the relation of the singular to
the ontological framework it presupposes. In this way Binswanger’s notion of form
of life and its hold upon the subject allows us to appreciate what he calls “apriori
structures of experience” as an anticipation of Lacan’s conception of the imaginary.
Echoing the words of Roland Kuhn, Basso goes on to say that care then becomes
a way in practice to wonder about the style according to which subjects exist. To
teach care would then be to try to implement this sense of wonder in a caregiver.
A principled relationship: self-transcendence of care

This difference between rule and principle inhabits the space of Simmel’s
conception of the tension between the desire for life and for more than life as the
space of what he calls self-transcendence as a principled relationship, in our present
case, to care. That is, if the convention(s) identify caregiving as rule-governed
conduct, self-transcendence begins to intimate a desire for a robust relation to rules,
a principled relationship. Such self-transcendence not only influences care for the
other but toward one’s own relationship to the world by elevating us to look at
externals in a particular way, neither with contempt nor acceptance, but as
occasions to question the way a finite characterization makes reference to a degree
of infinite and irresolute perplexity, just as the definitive attribute masks a
relationship in which it is grounded and through which it emerges.
Certainly the category I call here “the reaching out of life beyond itself” is
thus meant only symbolically, only with an inclination that it can probably
be improved. Taken in its essence, I hold it at all events to be a primary one
. . . Insofar as life’s essence goes, transcendence is immanent to it (it is not
something that must be added to its being, but instead is constitutive of its
being). The simplest and most fundamental instance of what is meant here is
self-awareness, which is also the original phenomenon of the living human
spirit.
(Simmel 2010, 9)
Such self-transcendence necessarily produces objectification. For example,

representations of conventions such as care and the boundaries and partitioning
assumed to reflect its discourse, and the constant dissolution and revision of such
categories as part of the movement of life as “something that constantly reaches
beyond the bounds of its beyond and which finds its essence in this reaching
beyond” (Simmel 2010, 17). It is in this sense that self-transcendence and its
fundamental ambiguity in the tension between life and form reinstates the omni-
relevance of the Grey Zone in relation to the ambiguity of the “object” of care,
disclosing how the focus upon recipient might cover over the fundamental problem
of the self-affective nature of desire in care. That is, the “bottom line” in care
refers not to the one cared for and not to the caregiver, but to the notion of care
itself and how it is disseminated and engaged in collective life as a discourse that
reveals navigating the problem of justice and its fundamental ambiguity as our
common project. The subject is then an ideal speaker inspired by the notion of
self-transcendence to engage care and its conventions in ways that might challenge
the inevitable and incorrigible self-interest that Cioran identifies. In this way, the
self-transcendence that Simmel formulates as our desire for life and for more than
life, that is, for the power to exceed our conditions, discloses the self and its
malleability as a primary condition. In Simmel’s sense, self-transcendence as the
desire to overstep boundaries is itself a feature of the automated conduct of the
human in the way that the desire for a corrective is part of life itself. This desire
to overstep boundaries materializes in care as the desire to challenge, enhance,
elaborate, and remake the conventions of care as both part of life and for more
than life, in ways that seek to invest the convention with vitality that it seems to
require. Simmel says that any such desire (for example, in relation to conventions
such as care) participate in the aesthetic and erotic aspiration to endow the
convention with vitality, the desire to overstep boundaries that is fated to
materialize in the creation of revisable boundaries ad infinitum. According to
Simmel, this is the “real” tension between finite and infinite that we inhabit in the
space of life as social beings.
Chapters
Stuart J. Murray’s Afterword takes what we call neoliberalism seriously to task
because he rightly sees such a doctrine as saturating and governing our
relationships to care under contemporary conditions in ways that need to be
challenged. For Impasse Analysis, the challenge would overcome the tendency
to act out as in simple condemnations of the doctrine that Murray quotes from
those like Giroux, but would start to work through the doctrine as a system of
desire, an imaginary regime of thought and feeling, in order to grasp it as a system
rather than a symptom. This is said in the spirit of Wittgenstein’s advice not to
tell a person that they are in error but to show them the road from error to truth.
If we do and must begin with neoliberalism as a congeries of practices of symptom
management, just what problem is this symptomatic structure trying to work
through? This is the path we might follow.
So-called neoliberalism seems to make care a requirement with no escape, as
in the rule of the normative order (and its figures as “name of the father” or super-
ego) that commands us to care and to be accountable. This gives to its emphasis
on caregiving a totalitarian accent despite its best intentions insofar as it is often
accused of enforcing a generic conception of care that remains suspicious of any
gesture of negation, making care itself the kind of concept my colleague Peter
McHugh liked to call soft custard. Thus, Diego Llovet’s chapter (Chapter 1) opens
this discussion in the volume on how informed consent forces us to care about
14 Alan Blum
choice in a way that immediately displays the tension between the family and the
state, or between the person and the law, raising the question of whether we are
known better through the lens of anonymous technology than by intimates. What
seemed from Hegel on to be an argument over the State v. the Family (Creon v.
Antigone), now appears in the Informed Consent debate, in Stuart J. Murray and
Tad Lemieux’s chapter on the resistance of the child (Chapter 4), and in Kieran
Bonner’s chapter on the resistance of the family (Chapter 3), as the desire (as
expressed here) to defend the right “to be sick in my own way” and “to die in my
own way” (perhaps with technical relief and nothing else), that materializes in
this book as a version of Habermas’s legitimacy crisis as applied to the ques-
tion of knowledge. What comes to view as the “real” matter is the question of the
status of knowledge and its source as anonymous (technology) or as intimate,
raising questions about the trust upon which knowledge supposedly depends, a
trust making reference to more than “premises,” ordinary language, and the like,
but to the “Ought” that Simmel (2010) identified as Other.
In modern life the regime tries to transform itself from an anonymous apparatus
(a machine) into a more intimate resource (say, a tool) in ways that are modeled
by the objective of the computer to be “user friendly,” or in ways that pervade
automated usages in all areas of everyday life, supposedly making it easier to
navigate. The law such as embodied in the rule of Informed Consent is intended
to emancipate the patient from oppression by extending the rights to participate
in decision-making, but then can only annul such liberation with standardized
categories, expectations, and rules that aggressively undermine this very autonomy.
In this way, if Informed Consent stands for the promise of the extension of
empowerment to the subject in order to maximize autonomy and dignity, it ends
up by inflicting aggression upon that intimate relationship in the name of the
objectives of standardization as the sine qua non of the efficient format. A good
example is the way the forced choice imposed in requiring the signature to be
used in the Informed Consent ritual seems analogous to the debt signature that
was demanded of the debtor in accepting the debt bond, which was designed to
show one’s agency in one’s own bondage in the same way as the agreement
to the Informed Consent form functions like a confession of one’s willingness to
accept servitude in the procedure by giving the signature of acquiescence.
In Chapter 2, Philip Walsh exposes this tension between substantive and formal
rationality in the notion of means-ends calculation and how, especially in reading
Max Weber, we see the repression of (so-called) magical means returning as a
pervasive ground of any determination, revealing the impossibility of renouncing
the magic of value. This is the typical trajectory of all legal codes recognized
historically as the antidote to violence that necessarily must inflict violence in order
to curb it. The problem of the modern subject, both caregiver and one cared for, is
to manage this contradiction and its fundamental ambiguity without going mad (this
version of the so-called double standard). This tension summarizes the jouissance
of administration as a problem, raising the question of how the subject is formed
under such conditions to find pleasure in being law-abiding or rule-governed in ways
that must depend upon keeping in check temptations that also offer pleasure.
The administration of jouissance
In contrast to the jouissance of administration and the process of forcing the
adaptation of the subject to the demands of the normative order as the “judgmental
dope,” in Garfinkel’s (1967) idiom, who is required to exemplify motivated
compliance to the order, we must consider what paths are open to such a subject
for subverting and/or being innovative in relation to the code. In other words, we
must ask if there is a creative life above and beyond the automated character of
motivated compliance. At this point the discussion raises the problem of how to
administer care, and so, of the capacity for agency. In Carlos Neves’s study (Chapter
10), subjects demand that care be anonymous because technology allows them to
be treated by those who don’t know them, where this assumption that cure
depends upon impersonal care makes intimacy seem a disturbing and destructive
factor worth considering and typically evaded by such a subject. The same notion
pervades the Informed Consent debate, the idea that prejudice and partisanship
destroy medical impartiality. This example of the dilemma that technology inflicts
upon care seems, on the one hand, to free its delivery from restrictions by
removing space as a fetter, and yet, on the other hand, enforces in such gestures
an anonymous constraint upon the relationship. While the promise of technology
to enable us to administer care to those who we do not know might give solace
to some and to others either comic relief or disgust, what is always worth
considering is the frustration imagined in the face-to-face relationship.
That is, if coaching by telephone is assumed to free us for therapy in a faceless
encounter, what is the violence imagined in the face-to-face relation of care from
which the telephone exchange is expected to offer relief or escape and what does
this construal say about the subject and the culture? Carlos Neves suggests that
the message here is that coaching frees us from the therapeutic element in therapy
and thus gives us (as in Žižek’s examples) substitutes such as tobacco-free tobacco
or alcohol-free alcohol, the prospect of distance education that can provide
education-free education. Now we are promised therapy-free therapy, that is,
therapy without the transference and all of the burdens of the face-to-face. In this
shape the formula of globalization discloses how the mantra “love thy neighbor”
poses the question of what kind of knowledge of the other qualifies us to care for
them or gives us such an entitlement. If resistance affirms that you are not
qualified to care for me, this charge is not due to your lack of credentials, but to
your lacking intimacy and knowledge in our relationship. Under what grounds is
an entitlement possible?
In the Informed Consent debate, Diego Llovet suggests that the mandate of self-
determination and autonomy and the dignity of the patient is ignored in practice
as if family is biased and not knowledgeable. Thus, the Consent and Capacity Board
(CCB) decides whether the patient’s belief and will is being respected by the
substitute decision maker who is one reputed to have knowledge of the patient
that the Board lacks. If one side speculates contrafactually that the patient would
want to die to escape pain and suffering, the other side affirms that if there is still
an opportunity to live, they should live because they would want to go on (or that
they shouldn’t because of some economic notion of cost and futility). This tension
16 Alan Blum
between views of knowledge and its anonymity, and the intimacy of the sub-
ject’s phallocentric position, again reminds us of De Montaigne’s diatribe against
medicine’s presumptuous claim to know the patient better than the patient knows
him or herself (Starobinski 1985). Note also that if we question the pretense of
medicine to be unbiased (which we should), we also can note that intimacy guar-
antees nothing because when the value of partisanship resides in its commitment,
it is one that must always be developed (that is, intimacy can be a basis of any
and all unpalatable fundamentalisms, cronyism, ideologies, laissez-faire doctrines,
and many crazed positions.
Indeed, both the child’s hallucination of Jesus and angels in her room in Stuart
J. Murray and Tad Lemieux’s chapter and the family’s adherence to the cliché
“never give up” in Kieran Bonner’s chapter are treated by medicine as
hallucinations of people who are biased. Further, could the resistance to face-to-
face therapy that Carlos Neves notes, to neurology as I discuss, and the rejection
of medical treatment by the child, all be seen in the same way as hallucinatory
by medicine and by the society at large? For that matter, could not the entire way
of life of a people and of any minority be treated as special by being seen as an
hallucinatory kind of resistance to technology or to progress? Is resistance
superstitious or deluded, or does it begin to show a way of trying to solve a problem
of care for one who we know; disclosing their dependence upon us and our joint
vulnerability in relation to the law, our helplessness in trying to administer this
space? Yet as implied, it is also true that extremism of any and every sort is
committed in some sense and never deserves prizes because of this, often being
deranged and destructive in every way.
Care for the wounded is typically anonymous unless they self-select and ask
for help. Otherwise it results from searching out a population to identify vulnerable
categories. Identifying the wounded or those supposedly damaged and in need of
rehabilitation has been an aim of medicalization that was often distrusted and is
now of a reparative philosophy often considered with suspicion. A question raised
by many relates to the impersonality of such care if based on pity, “altruism,” or
obligation as if a demand. In Lacanian usage we might say that many reparative
versions of care and of the recipient as damaged goods see the subject as having
lost something basic, whereas it might very well be that it is the notion of loss
or lack here that is deficient, in other words, it is an avowal of deficiency that is
deficient for being without ground, and so lacking in this sense. Ginette
Lafrenière’s research with Aboriginals seems to exemplify this attempt to rebuild
a population’s creative resources by making a place for them under different
conditions.The question here asks how to make care something freely chosen rather
than simply forced and obligatory because any conception of care must find such
a voice in its practice in order to enjoy what it is doing.
This might invite innovative attempts to reinforce craftsmanship in care by
collaborating in returning its administration to the “wounded.” Much of what we
call the neoliberal discourse treats care as obligation, and so, inflicts a kind of
violence upon the caregiver. Han Zhang’s research hypothesizes the rise of
suicidal thoughts among older Chinese people as reflecting their recognition that
this might be forcing their families to accept the obligation to care for them, and
so, of often feeling as if they are a burden upon their family. Note too how all
children could interpret themselves as burdensome in the same way, making
suicidal thoughts a rich repertoire in this kind of symbolic order. Here the rule
of universal burdensomeness can certainly be recognized as an interference or
distraction in a society committed to productivity and the efficient allocation of
time. In China this is also said to be illustrated in the expectation that grandparents
will assist fundamentally in child raising in ways that offer relief for those leading
busy lives. Here then, the aged can escape being burdens by paying off their debt
through child care, or if denying this either/or choice, can do suicide.
Care as loan and indebtedness

We can now begin to appreciate how neoliberalism comes to see its world as in
need of what it can provide. Basically, neoliberalism also appreciates breaking
through the exchange relations with a gift of giving, but in ways that enable us
to raise the question of the impasse endemic to this very notion of the gift. It is
the status of the gift as a condition of giving, particularly as loan and indebtedness,
which the neoliberal discourse makes transparent. For example, the assumption
appears as the idea that the inefficiency of the normal run of humankind leads to
crises that need to be rectified through a philosophy that will give the gift of
technology (quantitative methods, big data, algorithmic calculations) to souls who
should be indebted for such a transfer of techniques to govern their inclinations
as if a dissemination of self-help advice, and for the transmission of a neutered
language in the shape of administrative forms and policies, and simpleminded
expositions: the loan of care is seen as enforcing indebtedness for the gift of
knowledge in the same way that the extension of human rights that are de jure
even for the best of causes destroy differences between those who are treated as
the same (age, gender, race) and resistance is treated as a sign of ingratitude.
Similarly, the offer of rehabilitation to those who are wounded, and the giving of
care to those in need, can be seen as loans that enforce a dependency upon recipients
who are expected to repay through faithfulness to productivity that repeats rather
than works through (Freud 1914) the curriculum transmitted. In this way,
neoliberalism seems not mean-spirited and malicious capitalism, seeing its good-
heartedness displayed in its bestowal of beneficence upon an inept and beleaguered
population who simply need to accept its gift and loan through the repayment Stuart
J. Murray mentions in his Afterword, by thinking of itself only and exclusively
as ruled by an entrepreneurial vision and, as I would add, as subject to market
value dedicated to working at life as an opportunity for a continuous trajectory
of “start-ups” and projects designed to make a pleasing environment. In the same
way the European Union was astonished by Greece’s debt, neoliberalism has
difficulty grasping how negation might lurk at the spine of resistance to the platitude
of well-being as an objective of care. As an opener, let us suggest that real care
must be alive to and not astonished by the heart of darkness in every human gesture
including happiness.
18 Alan Blum
Theorizing care (or any representation and action) in a decisive sense then,
always risks disturbing this environment. For example, of the models of care in
circulation, we reiterate that care is a universal sign of accountability that can always
disrupt the normal course of events by demanding time and concentration that
moves against the grain, challenging the ways we speak and act, and in specific
cases. Whether we accept our equal responsibility for the casualties of the
normative order in the sense (as Simmel1974, 150–78 says) that it is our order
that has created the poor and their poverty as well, or we accept the universality
of our need to be responsive to the grieving that Dumm describes for the loss of
the world each and all of us could experience, care makes it possible to challenge
the distinction between winners and losers by trying to represent a road for being
as good as possible, for best practices, in a world in which everyone is lost but
need not be conceived as a loser.
Care for the trauma as a neo-liberal impasse: triggers,

trolls, and the absent dialogue
At present, the public talk in societies such as ours, including the art and
entertainment of so-called neo liberalism, appears to depend upon its discovery
of the “fact” that every life conceals as part of its secret history a trauma that marks
it. Much literature and public discourse (see, for example, Medina, 2014) in this
vein represents characters struggling to understand their particular histories and
in such efforts, to situate themselves in their environments by acting upon
initiatives towards being mutually oriented. It is considered a responsibility to alert
everyone with “trigger warnings” on topics and writing that could hurt people’s
feelings or remind them of uncomfortable events (for example, it is claimed in
this article that photos of men in underwear could remind those who have suffered
sexual abuse of such atrocities). Warnings are urged for Mrs. Dalloway because
it includes reference to suicide, and of course the Merchant of Venice includes
references to anti-semitism.
In a related way the current fashion of narrative in much research and policy
shows no interest in analyzing the data collected, but simply in collecting it in the
form of self-reports to thematically reiterate, summarize, and to commiserate with
on the grounds that behind every life there is a story about a personal atrocity and
that gestures of support for its exposure and testimony is the criterion of any
analysis. Speech that engages such stories or talk with vigor, which is fervent,
perhaps excessive (passionate we might say) and oriented to read through the
surface as literary and intellectual gestures, and to explore resistances and
unspoken understandings (as all good interpretive work) always risks treading on
the personal feelings of hearers and recipients. For this reason, speakers and writers
are cautioned to treat their language as if it can incite triggers that might injure
the hearer because language is capable of eliciting “personal” responses. The
warning is to be careful because words trigger emotions and can hurt people who
suffer complicated traumatic pasts. Thus a tension is instituted formally between
the demand of qualitatively attuned speech and writing to be passionate and
personal (to engage the viewer, hearer, reader), and the fearful admonition not to
engage the recipient in this way, in a way that would move them. It seems that
the only refuge in such an environment is talk that can monitor itself on the model
of a quantitative economy.
We venture that sensitivity to the universality of the trauma upon persons, has
created a wariness among authors and speakers, encouraging them to respect the
volatility that a speech situation invariably rests upon in such a world. Neo-
liberalism considered this discovery and these institutionalized cautions to be an
advance over a situation in which prejudice and hate mongering was assumed to
rule, now supposedly furthering an increased sensitivity towards others (their rights,
feelings, sensitivities) that were at one time treated with indifference, whether in
deranged bigotry or casual stereotyping and loose, ribald characterizations. In
Canada, a good example of such sensitivity can be found in the Tri-Council ethical
regulations of research that inventory infractions assumed to poison and hurt a
subject. Such manifestos and policy documents are assumed to epitomize care for
a subject, for hearers, for communication itself. Research is made to include an
administrative conception of care as a safeguard legislated to be responsive to
triggers.
The offensiveness of representations of men in their underwear to victims of
sexual abuse reminds us of the history of grievances that seems our legacy of the
capitalist system of desire and its imaginary as expressed in Nietzsche’s conception
of resentment following from the differentiation of any social order, developed
by Max Scheler and Leon Festinger’s social psychological notion of relative
deprivation: here we account for Durkheim’s observation that suicide rates increase
during times of year when people are represented in festivities and moments of
high life because prospective isolates feel most deprived then. Indeed, alcoholics
might be warned about representations of drinking, just as many might want to
be warned about representations of inter-racial relations, Italians warned about
mafia, Chicagoans about gangsters, lonely people about sociable occasions coming
up in ads, Jews warned about Christmas celebrations, and gentiles could be
alerted to Jewish references and various vernacular gestures in the media. People
who are gay and people who are not gay, people of one race and not the other,
of one class and not the other, of one age and not the other, people who could be
offended by representations of one another even engaging in “normal” courses of
activities if their offensiveness offers some association to their history that they
deem horrific. Of course, everyone in the middle could claim to be offended by
portrayals of wealth and everyone certainly makes claims to be offended by the
very sight of poverty and triggers would need to be supplied if this is the case.
Carlos Neves’ chapter in this volume (Chapter 10) on the safety, security and
(profitability) of telephone therapy is relevant here: real therapy can hurt clients’
feelings and not only that but can reduce our capacity to contact more clients (here,
neo-liberalism does two things at once that it thinks is good, helps save people
from hurt and makes a profit).
The social construction of offensiveness is the environment for such tensions
that we now see surfacing under the rubric of neo-liberalism and I anticipated this
20 Alan Blum
impasse years ago by reflecting upon an exchange of cigarettes between Wilt
Chamberlain and Lennie Bruce during a Bruce performance in a Chicago nightclub
(Blum 1992). My attempt at playfulness then would not go over now. Indeed, what
was triggered then was this sense of offensiveness integral to the system of desire
of capitalism itself, a frustration that pervaded the classroom too as I recall having
to negotiate the anxiety of a Jehovah’s witness student over the transexualism
presented in the documentary Paris is Burning because of religious scruples (not
much different than the indignation over violated scruples of religious
fundamentalists in the US and Middle East).
We appreciate today through the presence and talkativeness in circulation that
the impasse does not die and is reincarnated as “backlash” in the bufoonery of
public figures who seem to express in their indignation what is typically
characterized as the return of the empire as if any response to hysterical triggering
and its alarm system can only be initiated as a form of acting-out by trolls. An
analysis of neo-liberalism would have to examine this impasse, essential to any
regime of care and its philosophy, as part of the collision occurring around
progress and its grey zone. What centers this collision today seems to be a
question of the best ways and means of caring for language and this volume offers
a path into such an exploration.
Caring about care

The chapters in this volume raise a number of issues that I mention here as most
salient. In different ways they reveal that doing care depends in the first instance
on how we think about care as a notion and social form and how specific
assumptions about care and how to care for it are unspoken registers of the relation
as a situation of action. The chapters then disclose how in the presence of whatever
great technological accomplishments that we might accept and praise, the need
to reflect upon their application and value reveals the force of thought in action
as the nucleus of a dialogical relationship to care. Throughout, the concern for
the point of view of a subject is made transparent whether as the recipient or giver
of care, and the ways medicine, social services, therapy, teaching, rehabilitation,
reparation, and whatever institutional agents are in play, can justify their
conception of the need and desire of this subject and of the legitimacy of their
own procedures. It is suggested that “real” care has to be exercised by this
problem of assumptions and interpretations of caregiving in order to begin to assess
effects and dimensions of interaction, in other words, that doing care assumes an
interpretive ground often unspoken and unthought. From this perspective, even
good-hearted attempts to protect or redeem the subject, to rehabilitate suffering
in the name of ostensibly high purposes, invariably protect assumptions that
often need to be challenged. Deborah Steinberg’s chapter (Chapter 8) shows
this in her exposure of the rhetorical context of the “war on cancer,” disclosing
how the struggle with this disease makes reference to ways in which the symbolic
order creates an heroic subject, often a celebrity, existing in time as a warrior
rather than a pathetic figure, embattled but emboldened to buy time in a present
military campaign that empties its “now” of anything other than fantastic hope
for future success.
These chapters affirm that among such assumptions is the conception of the
subject as being conditioned by a partisanship or “subjectivity” that makes
reflective assessments of evidence impossible. If we note such a thread in these
chapters on biomedicine, neurology, rights discourses, and the social services, we
also recognize that the point of view of a patient or of any recipient of care should
never be treated as unquestionably the final word on care, for the students who
prefer online education, or the patients who prefer telephone therapy, often unite
against the face-to-face encounter because its challenge seems disturbing and
discomforting. This Grey Zone is a necessary dimension in the situation of care.
We note the elements of a sacrificial crisis (Girard 1977) in any discussion of
care, exemplified here in the exchange over Informed Consent, over reparative
philosophy in the Rights discourse, and over the presumption of incontestable
evidence in the molecular idealism of biomedicine, because in all such cases the
impersonality of a body of information assembled by experts is pitted against the
testimony of a subject for whom the information is assumed relevant, maintaining
this age-old cleavage between the near and the far, the intimate and the anonymous,
and the (so-called) subjective and the (so-called) objective. Here, this volume raises
the question of the most adequate methods for approaching the study of care as
such a social phenomenon.
The suggestion that caring for care is expressed in an exemplary way in the
ontological recognition of how fundamental ambiguity makes being oriented
(concerned and circumspect in Heidegger’s idiom) a necessity in human action
still can only maintain itself as a beginning and an opening for more, that is, as
necessary but insufficient. Thus, caring for care as a concentration upon quality
can only remain abstract if it simply avows the superiority of country against city,
meaning against technology, quality against quantity, unless avowals such as this
that affirm their care for care are grounded in specific conceptions of form and
distinction. Indeed, the gift does not simply empower the commitment to care over
selfishness, but makes it possible to attempt to embody care in practice hic et nunc
in this situation and with reference to this specific configuration. Care does derive
its ontological character from the human condition insofar as the indebtedness of
humans conveyed in the figure of finitude is akin to a fundamental dependency,
which as Adam Phillips (2012) notes, seems part of our human inheritance, as the
psychoanalytic version of the debt. This is how care comes to be modeled on
paradigms of the shepherd, the parent, leader, professional, and all who are
supposed to exercise responsibility to and for dependents. Yet if we are all
dependent by virtue of our finitude, care also suggests that we are all in position
to be exercised by the dependency of one another as part of what Max Weber
called “mutually oriented action.” Whether or not we heed this call is an open
question, confirming the call as resting on an agreement that could be otherwise.
Care then cannot be responsive to dependency “in general,” but to the specific
configuration dependency assumes in particular situations and for particular types
of persons, always guided by a desire to listen to the relationship between the finite
22 Alan Blum
face and its infinite perplexities. Care then is not simply concerned and circumspect
but is engaged by the particularity and form of a situation.
Conclusion
The impasse I am suggesting is resident in the humanization of capitalism that
helped produce the recognition that human beings are not slaves and should be
treated humanely, but where humane treatment is best conceived as a profitable
art that can both help and confirm the customer, making the tension between helping
and confirming the unspoken impasse in care. Criteria of service and satisfaction
shape the environment of care in ways that can and do influence caregiving as a
practice, shaping the collision in care between its social and antisocial character
as the spine of the discourse we try to engage.
Care seems to epitomize social action that is in position to overcome private
interest in order to orient reflectively to self and others. In its particular way, then,
care takes shape as a manner of formulating oneself and the other as both parts
of the condition of the weaker party, as both sharing the common bond of need-
ing to participate in developing a principled relationship to the ambiguity of the
conduct or trouble at hand. Whether professional, caregiver in a health-related
situation, or teacher, what is weak (unformed) is the notion of care itself and its
implicit and abstract character that needs to be engaged by all as a text to develop,
explicate, and actualize in the relationship to the particular detail offered as a
challenge by another. Such a challenge is what Virilio means by the inevitable
interruption of the accident (contingency or externality) that compels us to regain
concentration (Lotringer and Virilio 2005). This “weakness” should be seen as
comparable to figures standing for the beginning as undeveloped in Hegel, as empty
speech in early Lacan, or in the unformed character of any result that always needs
to be worked through in Freud’s sense of durcharbeiten (1914).
The giver of care takes the lead in exemplifying an impersonal relation to the
situation as if both he/she and the other are equal with respect to the situation that
they must collaborate in translating. If the apartness of both is apparent and direct
for an immediate view, their togetherness is perhaps more imperceptible to an
untutored eye, because it needs to recognize such solidarity neither as essentialist
nor phallic, but as grounded in their mutual need and desire for a principled
relationship as imagined from the position of an ideal speaker engaged by the
jouissance of developing an impersonal relationship to the personal situation of
care. This is a replay of the necessary tension that Hegel memorialized in the
relation between the finite and the infinite and that is being revived as a concern
today. As action, care in the best sense must resist treating the situation in an
automated manner by instead viewing the symptom (trouble that is presented by
the other) as a text to be translated and not simply managed. If care then comes
alive in the Greek sense as a rational response to the irrational, the body and the
law are apt metonyms for the irrationality of the city, and the giver of care an apt
figure for the effort to dispense justice as a translation of the need and desire to
be just to the material conditions of speaking together.
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Part I
Institutional constraints,
consent, and end-of-life
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1 Informed consent and the
social regulation of caregiver
involvement in end-of-life
care1
Diego Llovet
Great expectations: the courts, informed consent and patient

self-governance
Over the last few decades, commentators in the social sciences have developed a
notion (which they have called “medicalization”) to describe the process through
which the medical profession2 comes to establish jurisdiction over objects
previously exempt from such interventions (Marshall 1998). Using examples like
birth (which becomes “hospitalized”) or sadness (which becomes “depression”
and an object for psychiatry), this type of literature emphasizes the growth and
expansion of medical authority and describes medicine as an increasingly influ-
ential force shaping modern culture. But the concept of medicalization is of limited
use in describing the transformations of medicine in relation to the broader culture,
for medicine shapes its environment (as stated by analysts of medicalization) as
much as it is shaped by it (a claim made less often, and one that I wish to explore
here). In other words, the medical profession may at times “colonize” the lifeworld,
but it is itself not immune to being colonized and transformed, as it were, from
the outside.
A clear case of this is the medical profession’s subjection to the world of law,
which regulates the practice of medicine in various ways, in particular in relation
to the doctor–patient relationship and the manner in which medical decisions are
required to be made. This process, which can be called “legalization,” brings
medical practice under the purview of law, forcefully classifies all medical
behavior as either “lawful” or “unlawful,” and socializes practitioners according
to ideas of rights and obligations, reshaping the way in which professional care
is delivered. A good example of this question of the lawfulness of medical prac-
tice is the requirement that professional caregivers seek permission from patients
before administering any treatments or procedures. This is an obligation for most
(if not all) licensed professional caregivers in the Western world. Echoing a
principle valid in many other jurisdictions, the Ontario Health Care Consent Act
(1996) clearly states: “no treatment without consent.”
28 Diego Llovet
According to Jay Katz (1984), the principle of consent has long been a legal
requirement in places like the United Kingdom and the United States, where courts
have over the last 200 years or so routinely enforced the notion that physicians
have an obligation to tell patients what procedures are going to be performed on
them and to seek consent before proceeding. In American jurisprudence, two cases
are often cited as landmarks firmly securing this principle: Pratt v. Davis, of 1905,
and Schloendorff v. The Society of New York Hospital, of 1914. In those cases,
two female patients had separately complained that doctors had through deception
performed surgical procedures without their knowledge or consent: in one case,
the patient’s uterus and ovaries were removed, while in the other, a tumor was
excised when only an examination under ether had been authorized by the patient.
In denouncing the actions of these physicians, each of the courts famously stated:
Under a free government at least, the free citizen’s first and greatest right
. . . the right to the inviolability of his [sic] person . . . is the subject of universal
acquiescence, and this right necessarily forbids a physician or surgeon . . . to
violate without permission the bodily integrity of his [sic] patient . . . and [to
operate] on him without his [sic] consent or knowledge.
(Pratt v. Davis; quoted in Katz 1984, 51)
Every human being of adult years and sound mind has a right to determine
what shall be done to his [sic] own body; and a surgeon who performs an
operation without his [sic] patient’s consent, commits an assault, for which
he [sic] is liable in damages.
(Schloendorff v. The Society of New York Hospital;
quoted in Katz 1984, 51)
The legal requirement of consent in medical practice thus reflects an under-

standing of the patient as the sovereign owner of his or her body and as a bearer
of the right to be free from offensive and uninvited contact. In this context, the
patient is defined as an agent with the ability to either grant or deny access to his
or her body. Caregivers found to have violated this prohibition can be found guilty
of assault, battery, or trespass, in the same manner that sex becomes rape and a
contract becomes null and void when the parties to the relation are found to have
been coerced or misled.3 The notion of consent, in its pure form, thus defines the
role of the patient in the medical encounter through the right of refusal, the right
to say “no.” It is a safeguard, a defensive mechanism against abuse.
But this is not all. The law of consent evolved over time and incorporated the
notion that patients have a right to know not only what procedure is going to be
performed on them, but also what risks are involved in accepting or rejecting the
proposed treatment. This new principle came to be known as “informed consent,”
precisely because it points to the fact that patients can only give legally valid
consent if they know what they are getting themselves into—that is, if they are
well-informed. In his historical reconstruction of the doctrine, Katz (1984) dates
the birth of informed consent in the United States on October 22, 1957, when
Informed consent and social regulation 29
California judges hearing the case of a man left paralyzed by a medical intervention
established the notion that physicians have an affirmative duty to disclose any
serious risks to proposed treatments. In their ruling, the judges said:
A physician violates his duty to his patient and subjects himself to liability
if he [sic] withholds any facts which are necessary to form the basis of an
intelligent consent by the patient to the proposed treatment.
(Salgo v. Lelan Stanford Jr. University Board of Trustees;
quoted in Katz 1984, 61; my emphasis)
In Canada, the introduction of the element of well-informedness as a requirement

for consent came about through a 1980 case heard by the Supreme Court: Reibl
v. Hughes. There, the judges describe the events relevant to the case. John Reibl,
44 years old at the time of the incident, had complained of headaches, which his
family doctor failed to treat successfully. A referral was made to Dr. Robert Hughes,
the defendant, who concluded that the headaches were caused by a narrowed artery,
which prevented the normal flow of blood to the brain. Dr. Hughes recommended
surgery, which he performed competently and with Reibl’s consent. However, as
a consequence of surgery, Reibl suffered a massive stroke that left him partially
paralyzed and impotent.
Unlike Schloendorff and Pratt, Reibl knew which procedure the doctor was going
to perform and he had consented to the treatment. He did not know, however, that
this particular procedure carried a certain risk of paralysis and even death. Reibl
claimed that the doctor had an obligation, which he had breached, to disclose these
risks before obtaining consent so as to allow him to consider his options and decide
whether or not he wanted to go ahead with the surgery. Further, he made the claim
that, had he known of these risks, he wouldn’t have gone ahead with the procedure,
since at the time he was only a short time away from retirement and becoming
paralyzed would threaten his ability to collect disability benefits from his employer.
By failing to disclose these risks, Reibl argued, Dr. Hughes had violated his right
to make a rational and well-informed decision that would have best served his
interests. In other words, Reibl argued that his injuries were not the product of ill
fortune or an accident, but of medical negligence. When questioning Dr. Hughes,
Reibl’s attorney formulated the disclosure of risks as a professional duty owed to
patients. The transcript reads:
Q: Did you tell [the patient] what his chances were of being paralyzed
immediately or within a day or two as a result of this surgery?
A: No . . . I told him that the chances of being paralyzed if he did not have
the operation were greater . . . than if he did have the operation.
Q: You attempted to compare risks of being paralyzed by having the surgery
or not having the surgery?
A: That is correct.
Q: I suggest to you, however, that what you did not do was specifically
tell your patient that he ran a specific risk of having a stroke and, in
30 Diego Llovet
effect, being paralyzed if he had this operation. Do you understand the
distinction?
A: Yes.
(Reibl v. Hughes 1980, 921–2)
The Supreme Court validated Reibl’s claims by saying that the explanation that
Dr. Hughes gave Reibl failed to adequately disclose the risks of surgery and that
it simply indicated that Reibl would be better off to have the operation than not
to have it. In other words, the court saw Dr. Hughes’s words to Reibl as simply
a recommendation to have surgery, an expert opinion guided by medical know-
ledge alone. Medical opinion alone, the court believed, is not enough to conclude
that a particular treatment best serves the interests of the patient. The judges wrote:
Merely because medical evidence established the reasonableness of a recom-

mended operation did not mean that a reasonable person in the patient’s
position would necessarily agree to it if proper disclosure had been made of
the risks attendant upon it, balanced by those against it.
(Reibl v. Hughes 1980, 882)
In the court’s view, the question of whether a particular treatment is beneficial to

a patient can only be settled by also taking other, non-medical elements into
account, such as the values, preferences, and context of the individual patient. In
Reibl’s case, these non-medical aspects included the patient’s employment
situation and the fact that he was not yet eligible for extended health coverage
and would be left unable to collect disability benefits through his employer should
he become paralyzed as a consequence of surgery. Additionally, he had strong
ideas regarding what he considered to be the life worth living, which would also
be relevant to making a rational (or “intelligent,” as the court put it in Salgo v.
Stanford) decision regarding treatment.
If I have to choose for a short life and live like a normal person or [live] the
rest of it like a cripple I would have chosen to live a short life and be a normal
person. I wouldn’t drag myself around the way I am doing now.
(Reibl v. Hughes 1980, 903)
With this decision, the court implicitly made the claim that health and well-being
are notions that can only be conceived in relation to the life that is lived by the
patient, and not just in relation to the profession’s expert understanding of the
body and its troubles. In this case, Dr. Hughes had defined Reibl’s problem as
one caused by the narrowing of an artery that prevented blood from flowing to
the brain, and acted on this definition without regard for how surgery might affect
Reibl’s life, therefore disconnecting the treatment from the person who it was sup-
posed to serve. In other words, health and well-being are not just technical states
of affairs (where an unclogged artery equals health). They are, fundamentally,
conditions that need to be conceptualized and evaluated in relation to the particular
person and his or her various contexts. This means that the question in Reibl’s
case should be not so much whether or not the artery is clogged, but rather whether
surgery is likely to make the patient “healthy” in the eyes of the person who needs
to live with the consequences of care.
At the level of the organization of the medical encounter, this idea of health
and well-being as more than a technical matter translates into a new ideal model
of care in which the patient is given a more active role that goes beyond either
obeying doctor’s orders or merely consenting to proposed treatments. Under
conditions of informed consent, the physician is re-imagined as being unable to
know or control in advance the non-medical (contextual) elements that are now
said to be key to establishing whether or not a particular treatment will be
beneficial to the patient. These contextual elements are, instead, part of the
patient’s biography and are, therefore, for him or her to define. This means that,
under such conditions, the patient is charged with the responsibility to think about
what is important to him or her (in Reibl’s case, to live well and risk early death
vs. to live longer and risk disability and poverty) and to use this self-knowledge
to decide what treatment better suits his or her interests (i.e. surgery or no surgery).
In other words, informed consent demands that the patient develop a self-reflexive
relation to whatever conditions he or she inherits and that he or she take
responsibility for making decisions and choosing4 the best means to whatever ends
are desired. In this manner, individual self-governance becomes a requirement of
healthcare and a condition for health and well-being.
Moreover, informed consent is thus imagined as a tool that serves to free the
patient from the tyranny of medical paternalism and its ugly habit of imposing
treatments that serve the interests of the physician more than those of the patient.
In Foucauldian speak, we could say that informed consent is a “technology of
freedom” in the sense that it is part of a moral order in which the patient figures
as a subject to be liberated and empowered vis-à-vis medical authoritarianism and
its demands that the always ignorant patient passively submit to the higher powers
of the experts. It purports to reverse relations of authority and to effect radical
change in the division of labor of care: doctor and patient abandon their tradi-
tional custodial roles and now become equal partners in a collaborative relation
where patients direct their care by choosing their goals and physicians assist
instrumentally by clarifying the best means to the achievement of those ends.
Beyond its status as a legal requirement for individual practitioners, informed
consent has also found a place in the institutional rhetoric of medicine, where it
appears as a mechanism to ensure respect for patient autonomy (see, for example,
the World Health Organization’s People at the Centre of Health Care:
Harmonizing Mind and Body, People and Systems 2007) and a necessity in a
context of healthcare systems that seek to become more “patient-centered” (OMA
2010)—that is, more attuned to the needs of individual patients. The Ontario
Medical Association, for example, says that
one of the basic tenets of patient-centered care is that patients participate in

the decision making process about their treatment options . . . The process
32 Diego Llovet
may be shared; the decision resides with the patient. Informed consent is a
basic premise in law.
(OMA 2010, 39)
As part of “patient-centered care.” informed consent fits today into an agenda of

healthcare reform that claims to promote the humanization of healthcare, dialogue
between patients and caregivers, as well as patient involvement in medical
decision-making.
Disenchantment: critique and the “real” world of informed

consent
However, this enthusiasm is hardly widespread, and a more critical view of
informed consent seems, in fact, to be the norm. Jay Katz, a prominent figure in
the field of medical ethics and a long-time advocate for patient rights, for example,
argued (1984; 1994) that while the introduction of informed consent by the courts
was a promising development, the medical profession had by and large failed to
change its view of the patient as a passive recipient of medical care whose
participation in decision-making is neither important nor necessary.
In an article tellingly titled “Informed Consent—Must it Remain a Fairy Tale?”
(1994), Katz claimed that the profession had formally bowed to the doctrine of
informed consent without really accepting it, and that in practice informed consent
does little more than require that doctors provide some information while keeping
decision-making authority to themselves (he notes, further, that physicians
typically frame this information in ways that are sure to get the patient’s consent).
He believes that informed consent was never translated into a model of meaningful
doctor–patient communication and it remained a legal requirement that merely
invited physicians to act defensively5 and to treat the patient as a potential liability
concern more than as a partner in healthcare. In sum, Katz proposes, informed
consent falsely appears to promote patient choice and is, to that extent, a “charade
which misleads patients into thinking that they are making decisions when indeed
they are not” (1994, 84).
This notion of informed consent as the “illusion of choice” finds support in
research that looks at how patients make decisions in clinical settings. In a 1997
article published in Social Science and Medicine, Press and Browner observed
that the state of California has one of the highest rates of uptake of MSAFP
(maternal serum alpha fetoprotein), a prenatal screening test, in the United States,
and wondered whether such a rate can simply be explained as the product of a
conscious choice made by women in favor of having the test. In order to answer
this question, the authors observed interactions between patients and staff at a clinic
and conducted interviews, which revealed that the clinic strategically presented
information to patients in order to encourage consent and to discourage careful
consideration of making such a choice. In presenting the test, for example, staff
would be sure to avoid mentioning the voluntary nature of the test, would suggest
that it was “routine” and “just a poke in the arm,” and would conceal as far as
possible the link between the test and abortion, which becomes a relevant option
given that the fetal problems that the test may diagnose cannot be treated. The
authors also argued that this bias in the presentation of information shaped how
women understood the test, given that most of them had trouble formulating their
reasons for consenting and that abortion was either not mentioned or rejected as
an option. Further, the authors found that the clinic had chosen to actively promote
the test (rather than leave it up to the patients) because it feared “wrongful birth”
liability and also a state law mandating that it be offered to every patient in the
relevant population. Here, we see that the practice of informed consent is far from
the ideal of the empowered patient making an autonomous choice and that, as
Press and Browner suggest, actual patient choice can be the product of strong but
sly institutional pressures and preferences.6
Other research suggests that actual medical practice is generally committed to
a model of care that is incompatible with the principles of informed consent. In
1999, for example, the Journal of the American Medical Association published a
study (Braddock et al. 1999) that showed that both surgeons and primary care
physicians typically fail to foster patient involvement in healthcare decisions. The
authors recorded over 1,000 medical encounters and analyzed their content to
establish the extent to which clinical decisions (a total of 3,552) had been fully
informed. They found that only 9 percent of all decisions met their criteria of full
information and, more importantly, that only 0.5 percent of complex decisions
(the ones regarding things like cancer screening, choice of anesthesia, and surgery)
had been fully informed: according to the authors, their definition of full
information was not strict and represented a minimal standard of communication.
Along the same lines, and more recently (Krag et al. 2004), a study of 450 Danish
general practitioners revealed that physicians tend to disclose side effects to
common treatments for strictly medical reasons (such as helping the patient cope
with side effects and ensuring compliance with the prescribed treatment), and not
for the sake of patient involvement. These two studies explicitly note the gap
between the “ethical ideal” of informed consent and actual clinical practices that
deny the patient any real involvement, and suggest the need to find ways to make
decision-making more participatory.
While part of the profession remains committed to making medical culture more
open to patient participation (see, for example, Sahin et al. 2010 on the need to
improve how much patients really understand of the informed consent process;
Pranati 2010 and Bridson et al. 2003 on what can be done to make informed consent
more “authentic”), many practitioners remain suspicious of the notion of patient
autonomy. Goldberger et al. (1997), for example, propose that full risk disclosure,
a requirement of informed consent, is bad for patients because it raises their anxiety
levels, which may in turn have adverse medical consequences. In order to
demonstrate this, they recruited 50 patients who were about to undergo an invasive
form of cardiac testing and gave them two different types of consent forms. One
of them had a detailed description of all possible risks and the other merely
mentioned “a very low risk of complications.” Researchers found that patients
receiving full disclosure had increased anxiety after the informed consent process
34 Diego Llovet
(almost three times that of patients receiving the less informed form) and had a
higher need for anxiolytic medication.
Along the same lines, Tobias and Souhami (1993) suggested in an opinion piece
in the British Medical Journal that fully informed consent can be “needlessly cruel,”
as the title of the article states. They argue that patients want reassurance and
direction from their physicians, instead of frankness or the opportunity to make
their own decisions, and that informed consent can be cruel to patients because
it adds to the plight of disease by causing them distress about having to make
decisions for which doctors are better suited. Atul Gawande, a surgeon and a prolific
writer of commentary on medical issues, voiced a similar position for the general
public in The New Yorker in an article (1999) in which he argued that patients
are typically in a poor position to make good choices and that it is every doctor’s
responsibility to persuade the patient to accept their recommendations. All three
articles share the idea that informed consent is bad for patients and their health,
and suggest that good physicians use their clinical judgment to decide whether
and how much information to share with them.7
While it is clear that informed consent is a divisive issue in the sense that it
seems to organize reactions around whether we are either for (e.g. Katz) or
against (e.g. Gawande) the idea of patient autonomy, these interventions all seem
to agree on one thing: namely, that the doctrine of informed consent has not
managed to change the fact that the doctor, and not the patient, is the one making
clinical decisions. In other words, all of these voices seem to agree with the notion
that informed consent is a “myth,” a “lie, a “charade,” or a “fairy story,”8 either
because, as critics claim, it is a bad idea that good doctors refuse to enact in practice,
or because, as advocates say, it is a good idea that the medical establishment has
failed to adopt due to bad old habits.
At any rate, it is clear that informed consent is seen as a fantasy more than as
a reality, as a theory not reflected in practice. But can informed consent be simply
dismissed as insubstantial? Can it reasonably be claimed that the introduction of
informed consent has made no difference whatsoever in the doctor–patient
relationship and that everything is “business as usual”? Does the fact that the doctor
is still the one calling the shots mean that the way in which medical decisions are
made under conditions of informed consent is the same as before informed
consent?
These are important questions that the standard critique of informed consent is
not prepared to answer because it tends to focus on what informed consent does
not do (i.e. “it does not promote real patient involvement and choice”), rather than
on what informed consent does do. Informed consent is, after all, a routine aspect
of modern clinical practice that shapes the roles of physicians, patients, and their
families, as well as the interactions among them. There is, furthermore, a whole
institutional edifice built around the notion of informed consent (e.g. the consent
form, the power of attorney and the advance directive, among others) that gets
mobilized every day and that has become an integral part of the process of clinical
decision-making. That is, informed consent is, in Max Weber’s terms, a “valid
order”:
The subjective meaning of a social relationship will be called an “order” only
if action is approximately or on the average oriented to certain determinate
“maxims” or rules. Furthermore, such an order will only be called “valid” if
the orientation to such maxims includes . . . the recognition that they are
binding on the actor or the corresponding action constitutes a desirable model
for him to imitate.
(1997, 124)
Given these facts, we may now pose the question: what does medical care look
like under conditions of informed consent, and what are its implications? This is
a question best answered by grounding the analysis in actual medical practices,
which can show how informed consent works “on the ground.” This is why we
now turn to the analysis of how informed consent has shaped medical care and
decision-making at the end of life.
Patient autonomy at the end of life

While there is in Canada and the United States a general recognition of a person’s
right to self-determination, the question of whether a person has a right to choose
to die has been answered only ambiguously. This ambiguity is seen in the legal
regulation of medical practice in situations when patients, due to extreme suffering,
express a desire to die. In Canada, for example, while suicide is not itself illegal,
helping a patient commit suicide is a criminal offence punishable with prison.9 In
other words, the criminal code keeps patients from lawfully receiving help to end
their lives because no one is “entitled to consent to have death inflicted on him
[sic], and such consent does not affect the criminal responsibility of any person
by whom death may be inflicted on the person by whom consent is given”
(Criminal Code of Canada 1985, c. C–46 s 14).
There are, however, situations in which doctors and patients are legally allowed
to treat death as a matter of patient choice and autonomy. Unlike the case of
physician-assisted suicide, which in Canada falls under the jurisdiction of the
Criminal Code, these other situations are framed by the common law on consent
and the right it grants individuals to refuse unwanted medical treatment, even in
cases where this refusal entails the withdrawal and/or withholding of life-sustaining
treatments and is likely to bring about death. In other words, certain patients may
legally choose to die by choosing to refuse medical treatment.
In the United States, this principle of individual self-determination in relation
to death was established by Cruzan by Cruzan v. Missouri Department of Health,
a landmark Supreme Court case decided in 1990. This case focused on the
situation of Nancy Cruzan, a young woman who lay unconscious in a Missouri
hospital as a consequence of a 1983 car accident, and the conflict that had emerged
between Cruzan’s family and the hospital where she was receiving care. Cruzan’s
parents had for many years tried to get the hospital to remove the feeding tube
that kept their daughter alive. They had argued that their daughter had no chance
of recovery and that she would not have wanted to live “like a vegetable.” The
36 Diego Llovet
decision to request the removal of the feeding tube (and their daughter’s ensuing
death) was, in the parents’ view, in accordance with Nancy’s personal values. In
their own words:
The decision to stop treatment and allow a loved one to die is one of the most
difficult decisions a family can face. However, because of our lifelong shared
love with Nancy and our understanding of her values, we concluded that we
had no choice but to try to set her free from this hopeless condition she is
trapped in. Not to do so would be to disregard the very meaning of Nancy’s
“lived” life.
(quoted in Belkin 1990)
The hospital had denied the parents’ initial request (given that it would result in
the patient’s death) and as a consequence the Cruzans sought and obtained a court
order directing the hospital to remove the tube. The hospital, with the backing of
the state’s Attorney General, appealed the ruling to the Missouri Supreme Court.
This court reversed the order, arguing that state law strongly favored the
preservation of life and therefore placed limits on the patient’s right to refuse
treatment, if such refusal is likely to cause death. Reporting on the decision, the
St. Louis Dispatch said:
Under the law, state residents may make a “living will” saying that they do
not want their lives prolonged by medical treatment if they have a fatal illness
and become incompetent. But in the opinion, the court differentiated between
treatment and feeding, saying “common sense tells us that food and water do
not treat an illness, they maintain a life.” Robertson [the Justice writing the
opinion of the court] wrote that neither the right to refuse treatment nor the
right of privacy was absolute and that each must be balanced with the state’s
interest in preserving life.
(1988, 1A)
The Cruzans appealed and the case landed before the US Supreme Court. The US
Supreme Court upheld the Missouri Supreme Court ruling, saying that the state
had a right to demand “clear and convincing evidence” of Nancy Cruzan’s wishes,
which the parents had failed to provide (according to the state’s Supreme Court).
However, the US Supreme Court disagreed with the Missouri court’s opinion that
a person’s right to refuse treatment is qualified by other interests—in this case,
the interest in the preservation of life. Citing the Fourteenth Amendment, which
states that a person may not be deprived of life, liberty, or property without due
process of law, the US Supreme Court argued that competent individuals have a
constitutionally protected right to liberty that allows them to refuse any unwanted
medical treatment, including lifesaving hydration and nutrition (Cruzan by Cruzan
1990, 278–80).
In Canada, the right to individual self-determination vis-à-vis the refusal of
unwanted life-saving treatments has also been secured by the courts. Only three
years after Cruzan, the Supreme Court of Canada stated that:
Canadian courts have recognized a common law right of patients to refuse
consent to medical treatment, or to demand that treatment, once commenced,
be withdrawn or discontinued. (Ciarlariello v. Schacter [1993] 2 S.C.R.
119). This right has been specifically recognized to exist even if the
withdrawal from or refusal of treatment may result in death [Nancy B. v. Hôtel-
Dieu de Québec (1992), 86 D.L.R. (4th) 385 (Que. S.C.); and Malette v.
Shulman (1990), 72 O.R. (2d) 417 (C.A.)].
(Rodriguez v. British Columbia (Attorney General) 1993, 94)
Moreover, both the American Medical Association (AMA) and the Canadian
Medical Association (CMA) have also recognized the rights of patients to reject
life-sustaining treatments. They do so in the official policies currently governing
medical practice in those two countries.
Our AMA believes that: (1) The principle of patient autonomy requires that
physicians must respect the decision to forgo life-sustaining treatment of a
patient who possesses decision-making capacity. Life-sustaining treatment is
any medical treatment that serves to prolong life without reversing the
underlying medical condition. Life-sustaining treatment includes, but is not
limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics,
and artificial nutrition and hydration.
(American Medical Association 2010)
A competent person has the right to refuse, or withdraw consent to, any
clinically indicated treatment, including life-saving or life-sustaining
treatment.
(Canadian Medical Association 1995, 2)
In this context, the patient is defined as an autonomous agent, whose decisions,

including the decision to be allowed to die, cannot be overridden by anyone else.
But, as the case of Cruzan (and earlier, that of Karen Quinlan10) shows, the patient
can be unconscious or otherwise incapable of deciding whether to accept or forego
life-saving and/or life-sustaining treatments. This condition, legally called
“incompetence,”11 is common among certain types of patients such as older
persons with dementia, persons with other terminal conditions, and persons in
intensive care units. How, then, can the incompetent patient make decisions for
him or herself? How can an incompetent patient be “autonomous”?
In the US, this question was raised in particular in relation to the use of medical
technologies (the feeding tube is but one example of this) that kept gravely ill
patients alive but unconscious for long periods of time. Starting in 1976 (Silveira,
Kim, and Langa 2010), many states in the US started passing legislation allowing
documents called “advance directives,” which patients could use to either designate
someone else to make decisions for them if they were to become incapable, or to
convey the wishes and decisions with respect to life-sustaining treatment that they
would like implemented should they themselves become unable to communicate
38 Diego Llovet
them in the future. And almost immediately after Cruzan, Congress passed a federal
law called the Patient Self-Determination Act, which further established advance
directives in the clinical setting by mandating, among other things, that all
federally-funded hospitals record a patient’s choice regarding life support
treatments upon admission (New York Times 1990). With the assistance of these
legal means,12 it was expected that patients would be able to regain control over
clinical decisions and to make their own choices regarding life and death in a
situation of incapacity.
In the Canadian province of Ontario, a similar principle applies, and patients
may also use advance directives to refuse unwanted life-saving treatments when
incompetent. In 1991, the Ontario Court of Appeal said:
A patient, in anticipation of circumstances wherein he or she may be

unconscious or otherwise incapacitated and thus unable to contemporaneously
express his or her wishes about a particular form of medical treatment, may
specify in advance his or her refusal to consent to the proposed treatment.
A doctor is not free to disregard such advance instructions, even in an
emergency. The patient’s right to forgo treatment, in absence of some
overriding societal interest, is paramount to the doctor’s obligation to provide
medical care. This right must be honored, even though the treatment may be
beneficial or necessary to preserve the patient’s life or health, and regardless
of how ill-advised the patient’s decision may appear to others.
(Fleming v. Reid 1991; quoted in the
End of Life Project’s website)
This court-established notion of the need to respect the autonomy of the

incompetent patient is affirmed in the Ontario Health Care Consent Act of 1996
in the figure of the “substitute decision maker.” These are persons designated to
make decisions for the incompetent patient, decisions that the physician is
obligated to follow. The law, which lays down the rules for appointing the
substitute decision maker, tends to reserve this role for relatives of the patient.13
Section 20(1) of the Act gives a list of persons who may give or refuse consent,
as follows:
1 The incapable person’s guardian of the person, if the guardian has

authority to give or refuse consent to the treatment.
2 The incapable person’s attorney for personal care, if the power of attorney
confers authority to give or refuse consent to the treatment.
3 The incapable person’s representative appointed by the Board under
section 33, if the representative has authority to give or refuse consent
to the treatment.
4 The incapable person’s spouse or partner.
5 A child or parent of the incapable person, or a children’s aid society or
other person who is lawfully entitled to give or refuse consent to the
treatment in the place of the parent. This paragraph does not include a
parent who has only a right of access. If a children’s aid society or other
person is lawfully entitled to give or refuse consent to the treatment in
the place of the parent, this paragraph does not include the parent.
6 A parent of the incapable person who has only a right of access.
7 A brother or sister of the incapable person.
8 Any other relative of the incapable person.
(Health Care Consent Act 1996, c. 2, Sched. A, s. 20(1))
While the substitute decision maker is given the authority to make healthcare
decisions on behalf of the incompetent patient, this authority does not give the
person the freedom to make just any decision he or she likes. Indeed, the law
establishes rules according to which decisions may be made on behalf of the patient.
The Health Care Consent Act says:
Principles for giving or refusing consent:

21. (1) A person who gives or refuses consent to a treatment on an incapable
person’s behalf shall do so in accordance with the following principles:
1 If the person knows of a wish applicable to the circumstances that the
incapable person expressed while capable and after attaining 16 years of
age, the person shall give or refuse consent in accordance with the wish.
2 If the person does not know of a wish applicable to the circumstances
that the incapable person expressed while capable and after attaining 16
years of age, or if it is impossible to comply with the wish, the person
shall act in the incapable person’s best interests.
(1996, c. 2, Sched. A, s. 21(1))
Best interests
(2) In deciding what the incapable person’s best interests are, the person who
gives or refuses consent on his or her behalf shall take into consideration,
(a) the values and beliefs that the person knows the incapable person
held when capable and believes he or she would still act on if
capable;
(b) any wishes expressed by the incapable person with respect to the
treatment that are not required to be followed under paragraph 1 of
subsection (1); and
(c) the following factors:
1 Whether the treatment is likely to,
i improve the incapable person’s condition or well-being,
ii prevent the incapable person’s condition or well-being from
deteriorating, or
iii reduce the extent to which, or the rate at which, the incap-
able person’s condition or well-being is likely to deteriorate.
40 Diego Llovet
2 Whether the incapable person’s condition or well-being is likely
to improve, remain the same or deteriorate without the treatment.
3 Whether the benefit the incapable person is expected to obtain
from the treatment outweighs the risk of harm to him or her.
4 Whether a less restrictive or less intrusive treatment would be
as beneficial as the treatment that is proposed.
(1996, c. 2, Sched. A, s. 21(2))
As it is clear from these rules, the law gives absolute precedence to patient self-
determination, as substitute decision makers are required to follow the wishes that
the patient declared to have when still competent. That is, the substitute decision
maker is required to “follow orders” and simply execute the will of the patient.
Whether substitute decisions makers or doctors think this is a good or a bad decision
is, from the point of view of the law, irrelevant. This is an example of how patients
may direct their substitute decision makers through a template of a Power of
Attorney for Personal Care offered by a local law firm:
The following are my instructions to my Attorney(s) and my wishes with

respect to the giving or refusing of consent to specified kinds of treatment
under specified circumstances: If at any time I should have an injury, disease
or illness which results in severe physical or mental disability from which
my physician considers there is no reasonable expectation of either a
substantial recovery or a substantial improvement in the quality of life from
that then being experienced by me as a result of such disability, I direct that
I be kept alive no longer than 90 days by medications, artificial means or
“heroic measures” and then be allowed to die, and I direct that any such
medications, means or measures that would keep me alive in those
circumstances be withheld or withdrawn.
(Campbell n.d., 8)
However, the literature (Perkins 2007; Fagerlin and Schneider 2004; Salmond
and David 2005) reports that many people, if not most, fail to leave instructions
before becoming incompetent. How is the substitute decision maker expected to
decide for the patient in such a situation? In those cases, the Health Care Consent
Act directs substitute decision makers to decide based on the patient’s “best
interests.” These are defined as the product of the combination of three elements:
the patient’s general values and beliefs, any relevant wishes expressed by the patient
when capable, and a consideration of whether or not the treatments being chosen
are likely to improve the “condition or well-being” of the patient.
Here, again, we see the law’s emphasis on patient self-determination: in the
absence of instructions by the patient, substitute decision makers are still compelled
to make a decision based on their understanding of the patient’s general philosophy
of life (his or her values and inclinations) and its relation to health and well-being.
Here, substitute decision makers are not merely executing an instruction given
beforehand; they are, instead, expected to use their imagination to figure out what
decision the patient him or herself would have made in this or that situation and
to base their decision on this hypothetical understanding. According to the law,
the substitute decision maker sees the situation through the eyes of the patient,
not his or her own, and so any decision made on behalf of the patient is the patient’s
will expressed by a third party. The substitute decision maker is in this context
nothing less (and nothing more) than the one who conveys to the medical team
the unadulterated will of the patient.
The consent and capacity board: in defense of patient

autonomy
The law thus manages to create conditions for patient autonomy, even under
conditions of incompetence and lack of instructions. But the law also knows that
this is a frail accomplishment, since it hinges on the substitute decision makers’
ability and desire to meet their obligation to make decisions that faithfully reflect
the will of the patient. In other words, the law anticipates that some decision makers
will, for whatever reason, fail to do “what the patient would have wanted.” It is
because of this that the Health Care Consent Act establishes that all decisions made
by proxies are subject to challenge, review, and correction by the Consent and
Capacity Board. This is an independent provincial tribunal14 composed of lawyers,
psychiatrists, and members of the public with a mandate to protect the “dignity
and autonomy of the individual” and his or her right to choose “whether to take
treatment” (Consent and Capacity Board 2010a, 2). Section 37 of the Act says:
Application to determine compliance with s. 21

37. (1) If consent to a treatment is given or refused on an incapable person’s
behalf by his or her substitute decision-maker, and if the health practitioner
who proposed the treatment is of the opinion that the substitute decision maker
did not comply with section 21, the health practitioner may apply to the Board
for a determination as to whether the substitute decision-maker complied with
section 21.
(1996, c. 2, Sched. A, s. 37(1))
[...]
Power of Board
(3) In determining whether the substitute decision-maker complied with
section 21, the Board may substitute its opinion for that of the substitute
decision-maker.
(1996, c. 2, Sched. A, s. 37(3))
Note here that the law relies on the physician to guard and protect the autonomy
of the patient, as doctors are given powers to police the actions of substitute decision
makers and to challenge those decisions that are thought to violate the patient’s
will. In cases where it is suspected that proxies are not complying with the law,
42 Diego Llovet
and where there is disagreement regarding treatment between proxies and
physicians, physicians can use a “Form G: Application to the Board to determine
compliance under subsection 37 (1), 54 (1), or 69 (1) of the Act” (2005a), which
leads to a review by the Consent and Capacity Board. By means of an information
sheet, the Board stresses the protective role of the professional caregiver in this
process:
[Substitute Decision Makers] are required to follow the principles set out in
the Health Care Consent Act. A health practitioner . . . may believe that an
SDM is not following these principles. If this happens, that person may apply
to the Board for a determination as to whether the principles have been
followed and for an order to the SDM to comply with the Act. Use of this
application is limited to the health care provider of the incapable person (e.g.
family members cannot apply to the Board).
(Consent and Capacity Board 2005a, 2;
emphasis in the original)
While Form G itself is brief and collects only basic information such as names
and addresses of the physician and the substitute decision maker, caregivers filing
an application to the Board may also use and attach a summary form (Consent
and Capacity Board, 2010b) where they can make their case with more detail.
This summary form includes things like diagnosis, prognosis, treatments proposed
by the physician, and position of the substitute regarding this treatment—which
is assumed to be one of disagreement, given that the application is being filed.
The summary form further enquires as to whether the patient has granted anyone
a power of attorney for personal care, whether the patient had any wishes that are
applicable to the circumstances, and if not, whether the treatment that the physician
proposes serves the “best interests” of the patient, as defined in the Act.
Once a Form G is filed and accepted, the case is referred for a hearing to the
Consent and Capacity Board, which acts as a forum where doctors and families
compete with each other to assert their right to represent the needs and interests
of the patient as an autonomous person. Hearings always begin with an assess-
ment of whether the patient is indeed incompetent, a ritual that confirms that
the representation of the patient is, in fact, up for grabs. Having established the
incompetence of the patient, family and physician are invited to present their cases
and a decision is made by the members of the Board based on this evidence. The
family is first invited to explain to the Board how it is that they came to refuse
the treatment proposed by the doctor, and how this refusal is in accordance with
the patient’s will. And subsequently, the physician making the application is asked
to explain to the Board why he or she believes that the family’s decision is, in
fact, contrary to the will of the patient, and to provide an alternative account of
“what the patient really wants.”
In order to track this contest between medicine and the family over who is best
suited to represent the will of the patient, we can turn to the transcripts of five
decisions by the Consent and Capacity Board. These five cases all happened in
Ontario and fell under the Consent and Capacity Board’s jurisdiction. Hearings
for these cases are fairly recent and were conducted between October, 2003 and
September, 2007. With one exception, they all involve older adults between the
ages of 78 and 90. The exception was an 8-month-old baby who had suffered
oxygen deprivation at birth and was left in a vegetative state. All patients had had
relatively lengthy hospital stays.
In all cases, doctors had proposed courses of treatment that reflected their
diagnosis that the patient had entered the dying process and that it was time to
“let them go.” These courses of treatment included, depending on the case, a refusal
to admit the patient to the intensive care unit in case of cardiac arrest or septic
shock; the implementation of “do not resuscitate” orders;15 the withdrawal of forced
ventilation; and the stopping of artificial nutrition and hydration. In all cases,
relatives of the patients (sons, daughters, and parents) rejected these recommenda-
tions made by doctors and demanded that everything be done to keep their loved
ones alive.16 In its decisions, the Board summarized the families’ reasons for
refusing consent:
Mrs. H.J.’s daughters, Mrs. C.M. and Ms. R.J., were her substitute decision-
makers. They disagreed with the doctors. They said their mother lived by the
slogan, “Where there’s life, there’s hope.” Mrs. C.M. and Ms. R.J. interpreted
that to mean that all available measures should be employed to keep Mrs.
H.J. alive. They would not authorize the doctors to do anything but continue
to save their mother.
(Consent and Capacity Board 2003, 2)
Mr. DeRose [the family’s lawyer] met Mr. G.A. [the patient] the evening
before the Hearing . . . [The lawyer asked the patient a few questions and]
concluded that Mr. G.A. wanted whatever was necessary to keep him alive,
wanted to go home and did not want to die.
(Consent and Capacity Board 2007a, 9)
The first consideration for the S.D.M was the values and beliefs that she knew
the patient held when capable. The family members all referred to their
mother’s statements over their life to not give up and to be a fighter. The S.D.M
appeared to take those general statements as a requirement that no action should
be spared in trying to preserve life.
(Consent and Capacity Board 2005c, 10)
Mrs. G and Mr. G did not dispute their son’s condition but said that God would
heal him. Mr. G cited many passages in the Bible from which he drew, not
only comfort, but also support for the prospect of divine intervention. Mr. G
also said that medical science would eventually find a cure for E.J.G.’s
condition so there was reason to keep him alive until that happened.
(Consent and Capacity Board 2007b, 11)
44 Diego Llovet
Mr. J.S. thought his mother would want nutrition and hydration continued
and based that upon his view of the family value system, which he described
as including the value to “live, struggle and do your best.”
The Board assessed these arguments in light of other evidence it had collected
and in each case it decided against the families, noting that their statements could
not reasonably be taken to represent the will of the patients on whose behalf they
were deciding. In two cases, patients had written living wills in which they had
requested the withholding or withdrawal of life-saving or life-sustaining measures
in the event that they became, in the opinion of their doctors, terminally ill. While
the families here claimed that these instructions were not valid or did not apply,
the Board upheld the wills and said that these documents faithfully reflected a
decision made by the patient and that it therefore needed to be honored. The Board
said of these living wills:
We are recognizing . . . the presumed validity of a legal document executed

in the presence of a lawyer and the importance of respecting clearly expressed
wishes made by a capable person in a document designed for exactly that
purpose . . . [N]one of Mr. G.A.’s three children who gave evidence ever talked
to Mr. G.A. about his treatment wishes. When they said, for example, “He
would want everything done,” they were at best making assumptions that flew
in the face of what Mr. G.A. expressed in writing [in his living will]. We also
observed that none of these three witnesses distinguished between what they
wanted and what they thought Mr. G.A. wanted.
In regard to these two cases, the Board suggested that the families were in denial
and that they had refused to honor the living wills because they had not been able
to come to terms with the fact that their loved one was dying.
Asked specifically . . . Dr. Dwosh [the physician] said he thought [the family
was] . . . making a wrong decision. He did not think they were unable to
understand relevant information or unable to appreciate likely consequences,
but rather refused to accept the seriousness of Mr. G.A.’s condition. In his
consultation report . . . Dr. Dwosh wrote [that it was] clear that [they were]
having a difficult time coping with (Mr. G.A.’s) acute illness.
(Consent and Capacity Board 2007a, 6–7)
While Mr. J.S. [the substitute decision maker] testified with great dignity,
it was clear to us that he was not ready to accept his mother’s condition.
Mr. J.S. could not reconcile his views of Mrs. K.M.S.’s broad life values,
as he described them, with what she directed in her Power of Attorney. He
conceded the obligation, as one of his mother’s Attorneys, to honour her
direction but searched for reasons to delay and deny.
In the other three cases, the patients had not declared any explicit wishes (in the
form of a living will or otherwise) and the arguments before the Board revolved
around the notion of how the values and beliefs of the patient would have
guided treatment decisions. In two of these cases, the Board rejected the rela-
tives’ representations of the patients by saying that those values and beliefs were
too general and should not be applied mechanically, without regard for the
patient’s condition. In the third of these cases, the Board rejected the family’s
argument by saying that the belief used to justify refusing consent was one
held by the family, not by the patient. This was so because the patient was an
8-month-old baby who was in a vegetative state and could therefore not have
formed any values.
There were no conversations between Mrs. H.J. and the substitute decision-
makers she appointed regarding end of life decisions beyond, “Where there’s
life there’s hope.” That phrase, noble by which to live, was in our view too
general . . . to be considered a directive applicable no matter what. Using the
words of . . . Conway v. Jacques, “prior capable wishes are not to be applied
mechanically or literally without regard [for] . . . circumstances. Even wishes
expressed in categorical or absolute terms must be interpreted in light of the
circumstances prevailing at the time the wish was expressed.”
(Consent and Capacity Board 2003, 16–17)
We accept that the patient told her children never to give up. Encouraging
perseverance and determination is something that most parents do. There was
never any discussion between the patient and her children as to what the general
admonition to not give up might mean in the context of the circumstances
that she was now in. Did Ms. P. believe that not to give up extended to
performing CPR on an unconscious person whose organs were shutting
down?
We were aware that instances of miraculous cures and divine intervention

have been reported throughout history. [However], we concluded that E.J.G.’s
treatment decisions ought not be based on the hope of another miracle.
Capable people, or people who lived long enough to formulate their own values
and beliefs before losing capacity, might make or have made on their behalf,
a treatment decision based on belief in the prospect of divine intervention.
However, that would be their decision directly or based upon their values and
beliefs, not a decision based upon the faith of their substitute decision-
makers.
In sum, the Board sees these families as a threat from which the patient needs to
be protected. In principle, the law believes that relatives make good substitute
decision makers because they are close to the patient and having this personal
46 Diego Llovet
knowledge allows them to more faithfully represent and protect the interests of
the sick. But at the same time, as the Board decisions show, the intimacy of the
relation is itself reason for suspicion: relatives can have their judgment “clouded”
by emotion or confusion, leading them to make the “wrong” decision and to infringe
upon the autonomy of the patient. Because of this, the Board believes these families
should not be permitted to speak for the patient.
Medicine’s representation of the patient’s desire to be

allowed to die
In such situations, the Board turns to the doctors for a more “reliable” account of
what the “true” interests of the patient are. Speaking as advocates for the ill,
physicians will explain to the Board why, contrary to the claims made by the
families, these patients would, if competent, choose to be allowed to die. In order
to prove this, physicians develop a narrative that connects the patient’s medical
situation with the desire to be allowed to die.
This narrative has distinct moments, the first of which is the presentation of the
patient as being in “bad shape.” Doctors enumerate a series of dire conditions.
Mrs. H.J.’s life expectancy was six months to a year, less if she suffered
another cardiac arrest or serious infection . . . [She] . . . was bedridden . . .
[and] suffered from Alzheimer’s Disease. . . . It destroys the brain and is
ultimately fatal one way or another. [This] was one of the most severe cases
[the doctor] had ever seen . . . Mrs. H.J. could not . . . communicate . . . [She
required] a “J” tube for feeding.
(Consent and Capacity Board 2003, 2, 4, 5)
Ms. P. had had a major stroke about three years ago and she had a major
cognitive deficit . . . Ms. P’s . . . organ systems were shutting down. She was
malnourished. Her platelet count was continuing to drop and she required
transfusions. She did not have muscle function. Her kidneys were operating
at 20 percent of normal. She was on a ventilator. She had had a tracheotomy.
She was being fed through a tube inserted into her stomach. Ms. P. was
unconscious . . . She required frequent rotation in her bed because of bed sores.
The narrative then continues with medicine’s reflection on the difference that
medical science can make in such extreme cases. Reflecting on the treatments
applied to their patients, doctors inevitably came to the conclusion that these
medical interventions were useless because they failed to produce adequate results.
Patient H.J., for example, had been treated with antibiotics for a series of infections,
which became increasingly resistant to drugs and therefore impossible to defeat.
Patients P. and K.M.S., for example, could not absorb the nutrients provided by
their feeding tubes and became debilitated. In all cases, doctors identified one
or more “irreversible” and “unbeatable” conditions in their patients and in 4 out
of 5 cases they reported that the patient’s overall health was quickly spiralling
down. In their view, medical interventions could only improve the patient’s
condition to a lower base point of health. These patients were terminally ill and
without hope of cure or improvement.
[The] Dr. testified there would be no good news . . . Mrs. H.J.’s prognosis
was certain. Timing was the only question. Certainly, there could always be
hope but for Mrs. H.J. it was sadly scant. Mrs. H.J. was inexorably
approaching death’s cold door and already within reach of knocking on it.
[The] Drs. were both adamant that E.J.G.’s brain condition was irreversible
and untreatable. He would not get better.
However, the argument was not that treatment was medically innocuous, given
the patients’ conditions. In other words, the argument was not that treatment did
not make any difference. To the contrary, a major point that doctors made
systematically and forcefully throughout their expert testimony before the Board
was that the treatment administered to patients to keep them alive was, in fact,
harmful. Doctors construct this notion of “harm to the patient” by talking in detail
about what they call “the burden of treatment,” that is, the pain, discomfort, and
undermining consequences associated with certain kinds of medical interventions.
Patient H.J.’s physician, for example, explained that the suctioning of lungs made
breathing harder, that the intravenous administration of drugs and other substances
opened avenues for new infections, and that forced ventilation radically debilitated
the patient. Patient G.A.’s doctor stated that applying cardio-pulmonary resus-
citation required breaking at least a few of the patient’s ribs and elaborated on the
problems associated with stays in the intensive care unit (ICU). In particular,
he mentioned “ICU delirium,” which is the patient’s inability to concentrate due
to ongoing interruptions of the sleep cycle caused by permanent medical activity
in the ward.17 Patient K.M.S.’s physician said that staying in bed, something
inevitable with these patients, favored the formation of bedsores and the outbreak
of infections. The same doctor explained how tube feeding damaged the patient’s
airways and could produce pneumonia. Patient E.J.G.’s doctor told of hospital-
borne infections and complications arising from the use of assisted ventilation.
Below is an example of this talk.
[The] Dr. said of chest compression for resuscitation, “At Mr. G.A.’s age, if
you’re not breaking ribs, you’re not pushing hard enough.”
[T]reating any of her symptoms resulted in additional symptoms and risks

. . . “cascading” health problems. Mrs. K.M.S. contracted pneumonia, but
the antibiotics used to treat it led to a bowel disruption as a result of which
48 Diego Llovet
Mrs. K.M.S. contracted C. difficile, which led to diarrhea, which led to the
breakdown of skin around her rectum, which was likely to result in bed sores.
This notion that the patient is being “harmed,” however, does not come from the
fact that the patient is, objectively speaking, in pain. After all, pain and suffering
are normal and necessary occurrences in medical practice (think, for example, of
surgery). Instead, the notion of patient harm is grounded, as these cases show, in
the assessment that treatment is “not beneficial” to the patient. The category of
“non-beneficial treatments,” it should be noted, is not limited to interventions that
bring absolutely no progress to the patient (such as performing CPR on a dead
person). Instead, it contains as well a range of measures that may have a direct
and favorable impact on the patient’s physiological state but that are declared to
be insufficient to warrant their application, according to some standard. Doctors
use the notion of “non-beneficial treatment” (also called “futile”) to distinguish
between interventions worth pursuing from those that are not. And this distinction
is made by taking into consideration the “costs” and the “returns” of particular
medical interventions. A recurrent example in these cases is the use of CPR and
ventilators on patients. The argument is often that these technologies, while
having the potential of saving or maintaining the patient’s life, also mean that the
patient’s survival will take place under conditions of intensive and chronic hospital
care, never free from discomfort and machines. “Harm” only happens if the pain
that medicine inflicts on the patient as part of treatment does not yield results that
doctors can deem satisfactory. Here, cost-benefit analysis in action.
“Benefit,” as used in this paragraph of the legislation, to us meant balancing

the good results with the bad results, what [the] Dr. referred to throughout
the Hearing as “the burdens of treatment.” The burdens of treatment included
pain, discomfort and loss of dignity, factors that went into the equation of
“benefit.” The good result was prolonging Mrs. H.J.’s life, although not
everyone might see that as a good result for her, given her overall condition.
To medicine, the fact that these patients’ cost-benefit equations yielded a

negative result (that is, the costs were higher than the benefits) meant not that
nothing could be done to save the patients’ lives. Instead, it meant that nothing
should be done to keep them alive. This conscious estimation made by doctors
is, in other words, a matter of value—not a matter of science. This inherently moral
estimation is grounded in medicine’s understanding of human dignity and the
profession’s duty to protect and preserve a dignified existence for its patients. While
certain treatments do involve a degree of patient suffering and humiliation (think
of a colonoscopy as a case of the latter), suffering and humiliation become ethical
infractions perpetrated by medicine when painful and humiliating procedures are
known to not have medically “acceptable” results. When a patient is labeled as
“dying,” medicine seeks to ban a series of treatments that are seen as an affront
to human dignity for their high costs and low returns, treatments that may give
patients a few more days of life but only at the expense of whatever “quality of
life” and “well-being” they have left. To let the patient die is to help the patient
preserve his or her dignity. That is, dignity is introduced as a justification to
intervene—it makes such an intervention a lawful and a necessary one.
[The doctor] said that the ICU staff felt that Ms. P. had a right to her dignity
such that if her heart failed she should be allowed to die.
(Consent and Capacity Board 2005c, 7).
[The physicians] said E.J.G. was suffering even if he could not feel pain or
discomfort . . . [The doctor] distinguished between pain, which E.J.G. could
not feel, and suffering, which she described as something E.J.G. might endure
in an existential sense in response to invasive but futile procedures . . . In
determining E.J.G.’s well-being, we were entitled to consider the constant
invasions and humiliations to which his inert body was subject. At some point
those factors overrode the presumption in favor of continuing life.
(Consent and Capacity Board 2007b, 11, 22)
The relevant subsection [in the law] is s.21 (2) (c) 1 ii. “Will the treatment
prevent the incapable person’s condition or well-being from deteriorating?
Clearly in the event of heart failure not resuscitating will lead to death so it
cannot be said that her condition will be prevented from deteriorating with a
DNR order. However, if well-being is interpreted broadly to mean the
patient’s dignity and quality of life then a DNR order could prevent a
deterioration.”
(Consent and Capacity Board 2005c, 11;
emphasis in the original)
In medicine’s view, failure to avoid non-beneficial treatments for “dying”

patients would lead the doctor to condemn the patient to a sort of living death, a
life not worth living. This type of existence consists of a reduction of the “full”
human being to “mere life” via the use of available medical technology—a
reduction to mere, meaningless biological life. The image is one of an inert,
unconscious body, bedridden, connected to machines that feed and breathe for
the patient. Medicine here makes a distinction between “mere” physiological
activity that corresponds to parts and organs of the body, on the one hand, and
the overall ability of the person to function in the world as a biological and social
entity, on the other. “The physician’s goal,” claim renowned critics of non-
beneficial treatment (Schneiderman, Jecker, and Jonsen 1996, 670), “is not merely
to affect some part of the body but to benefit the patient as a whole.” Medicine
is here distinguishing between the patient as a collection of bodily parts that
can be affected individually through treatment (a liver here, a heart there),
and the patient as a “whole person.” With this formulation, medical science
rejects the treatment of the person as “just a body” and seeks to ground its
50 Diego Llovet
relations with patients in humanism instead of technocracy and detailed anatomical
and physiological knowledge.
We thought “well-being” involved more than mere life itself. The phrase is
subjective as used [in the law] because it [is] used in conjunction with the
word “condition,” which connoted to us a more objective assessment of the
status of a person’s illnesses and physical situation. “Well-being” includes
considerations such as the person’s dignity and levels of pain.
However, the dignity and well-being of the patient is not the only reason used to
reject the families’ requests to continue life-saving and life-sustaining treatment.
In these cases, doctors argued that their own integrity and humanity was
jeopardized as well, given that they would be morally responsible for inflicting
unnecessary pain on the dying patient. A recent Canadian case (CTV News 2007
and 2008) reflects this anxiety of medicine regarding the infliction of pain. Samuel
Globchuck, 85, an Orthodox Jew living in Manitoba who was in an intensive care
unit, was at one point deemed by doctors to have no chance of recovery. Given
this prognosis, doctors suggested that he be disconnected from his ventilator, a
proposal that Globchuck’s family rejected due to religious reasons. The hospital
insisted and the family responded by going to court and winning a temporary
injunction, which the hospital then tried to appeal. Eventually, Globchuck died
without the hospital’s intervention, the way the family had wanted.
From medicine’s point of view, to preserve life in this situation was tantamount
to torture, an activity that doctors should never engage in. In fact, this is why
Globchuck’s “doctors resigned their privileges at the hospital’s intensive care unit”
(Lambert 2008). In a 1995 article published in the Journal of Contemporary Health
Law and Policy, law professor George Smith echoed this line of argument by saying
that obligating doctors to provide non-beneficial treatment to dying patients is
equivalent to “cruel and unusual punishment” of prisoners,18 prohibited by the US
Constitution. Non-beneficial treatment is then associated with the doctor’s
violation of the “do no harm” principle that is said to ground good medical
education.
Reporting on the Globchuck case, medical ethicist Peter Singer (2007) suggested
that so-called futile cases (of which the five cases analyzed in this chapter are
examples) can be difficult for healthcare teams because they feel that they are being
forced to act against their sense of professional values. Seeing the patient suffer
needlessly, doctors and nurses suffer, too. In this manner, the physician becomes,
along with the dying patient, a victim of the family’s unreasonable expectations.
The Board illustrates this point in its decision regarding Patient P.:
[The clinical manager] thought that the patient was experiencing pain. Her
ICU staff had had to go for counselling as they were upset that they would
be required to do CPR given the patient’s medical condition.
In all five cases, the Consent and Capacity Board accepted the doctors’ accounts
and it ordered families to consent to the treatments being proposed by the
physicians.19 The Board thus uses its legal powers to free patients from the
“tyranny” of familial misrepresentation and to grant medicine authority to lawfully
speak for the patient. In this manner, patients find in the medical expert their true,
“autonomous” voice.
Informed consent redux: implications for care

In the original informed consent cases, patients were presented as victims of medical
paternalism, and the doctrine of informed consent was introduced to allow patients
to make their own decisions while imposing limits on medicine’s ability to act
unilaterally. The conflict was then between patients and doctors, where doctors
were presented as enemies of patient autonomy. In these original conflicts, the
family acted as an ally of the patient (see Cruzan and Quinlan). Families brought
these cases forth and demanded that doctors step back. But even in these landmark
cases, the family’s status was ambiguous, since the courts recognized that the right
at stake was that of self-determination. This right belonged to the patient, not to
the family. The US Supreme Court indicated its suspicions in this regard when it
ruled that the Missouri Supreme Court was right to demand proof of Cruzan’s
wishes before allowing her parents to remove her feeding tube.
No doubt is engendered by anything in this record but that Nancy Cruzan’s

mother and father are loving and caring parents. If the State were required
by the United States Constitution to repose a right of “substituted judgment”
with anyone, the Cruzans would surely qualify. But we do not think the Due
Process Clause requires the State to repose judgment on these matters with
anyone but the patient herself. Close family members may have a strong
feeling—a feeling not at all ignoble or unworthy, but not entirely disinterested,
either—that they do not wish to witness the continuation of the life of a loved
one which they regard as hopeless, meaningless, and even degrading. But there
is no automatic assurance that the view of close family members will neces-
sarily be the same as the patient’s would have been had she been confronted
with the prospect of her situation while competent. All of the reasons
previously discussed for allowing Missouri to require clear and convincing
evidence of the patient’s wishes lead us to conclude that the State may
choose to defer only to those wishes, rather than confide the decision to close
family members.
(Cruzan by Cruzan 1990, 287–8)
This same ambivalence toward the family was transferred into Ontario’s Health
Care Consent Act of 1996, which makes room for family participation while setting
up mechanisms to evaluate, challenge, and even revoke the family’s representation
of the patient. The five cases show how this emphasis on patient autonomy and
the suspicious character of the family translate into an opportunity for medicine
52 Diego Llovet
to take over the representation of the patient and to accuse the family of infringing
on the patient’s right to self-determination. In this manner, the defense of patient
autonomy, a central goal of informed consent, serves under current conditions to
force a reassignment of roles in which medicine and family trade places, with
medicine now defending the patient’s right to self-determination against the
family. This represents a dramatic role reversal for medicine and the family, and
a particularly useful one for medicine since it can in this way control some of the
conflicts that affected its practice and that seemed to get out of hand. If at any
point informed consent complaints seemed to threaten medical authority, the full
incorporation of informed consent into clinical practice today appears only to
enhance it, albeit in a different guise.20
But how can medicine legitimately claim to speak for the patient? Medicine
here is up against the family and everything that makes it a preferred substitute
decision maker. And yet it defeats the family in the battle for representation. By
summoning up a kind of objective attitude, it claims to see the situation “through
the patient’s eyes,”21 instead of its own, and to evaluate whether certain types of
treatment are actually likely to restore the patient’s health and well-being, where
health and well-being are defined through non-medical issues such as the dignity
and quality of life, which the patient is supposed to desire.
This is, of course, similar to the argument made in just about every landmark
case in the history of informed consent, in which health and well-being are
conceived in relation to elements that pertain to the individuality of the patient.
But in the cases made by doctors before the Board, this connection to the patients’
individuality is lost. No traces are left of the biographies that are supposed to guide
treatment decisions. Instead, we see a series of formulas and generic definitions
that serve to calculate when a patient is “dying” and to identify those patients who,
from the point of view of expert medical knowledge, should be allowed to die. A
good example of this is Schneiderman et al.’s definition of medical futility, which
uses population statistics to decide individual cases.
[W]e propose that when physicians conclude (either through personal

experience, experiences shared with colleagues, or consideration of published
empiric data) that in the last 100 cases a medical treatment has been useless,
they should regard that treatment as futile. If a treatment merely preserves
permanent unconsciousness or cannot end dependence on intensive medical
care, the treatment should be considered futile.
(Schneiderman et al. 1990)
The irony here is quite clear: medicine appeals to a notion of humane care
by pointing to the dignity of the patient, but this love of humanism and rejection
of technocracy are expressed through impersonal and technical methods of
measurement and control that are used to decide “what any person in the patient’s
position would want.” But perhaps the most striking aspect of this irony is the
fact that medicine claims to allow a broader definition of health and well-being
by taking into consideration the patient’s life context while shutting out a key
element of this context: the family and its suffering. The patient is only allowed
the context of strictly medical discourse. The appeal to the dignity and autonomy
of the individual transforms the patient into an objective, detached being, thus
putting him/her back in the hand of medical science and its experts.
Medicine then fails to represent the individual patient, but this is no real failure.
The profession uses the inert body of the patient to present and enforce its own
normative definition of how it believes patients and their families should conduct
themselves in critical situations like the ones exemplified by the five Board cases.
Just as the medical profession once had its own normative concept of the need to
keep patients alive at all costs, as seen in Cruzan and Quinlan, the profession now
has a different self-imposed mandate. This new concept indicates that death is a
natural and acceptable part of any person’s biography and that allowing death can
sometimes be the medically required thing to do. That is, patients in certain
circumstances don’t just have a “right to die” (as demanded by the Cruzans and
the social movement that they represented); they may, in medicine’s view, have
an obligation.22 The five Board decisions reveal the institutionalized expectations
(and the sanctions) that shape the modern “sick role” (Parsons 1964) of the dying
patient23 as someone who should know “when enough is enough” and who will
choose death over life when the time is right.
This, however, does not mean that medicine today is no longer committed to
the preservation of human life. If anything, the cases under study demonstrate the
strength and the currency of this commitment. That is, the change is not in the
values of medicine but in the way and the methods in which these values are
demonstrated and enforced. In the past, medicine proved its “love of life” in a
black and white manner by plainly refusing to let go of the patient. Today, with
medicine’s renunciation of the rigid equations of life = good and death = bad, the
sanctity of life is upheld in much subtler ways.24 Through the affirmation of the
idea that only a healthy life deserves to be lived, medicine today defines certain
cases as “exceptions” or “emergencies’” (Agamben 1998; 2005), which allows
medical practitioners, “this time only” and “given extenuating circumstances,”
to exempt themselves from their professionally mandated obligation to save the
life of the patient. With the assistance of the law and the state, the profession
institutionalizes the breach of its own ethical commitment. In so doing, it creates
a kind of medical practice in which the injunction to let die becomes a celebration
of its commitment to life.
Ironically, then, informed consent gives medicine more control and authority
over the situation of care. But what is the purpose of this authority? What does
medicine want to achieve? Key to the story presented in the Board transcripts is
a conflict between two characters, one presented as weak, the other presented as
strong. The former is the family of the patient, who wants to preserve and prolong
the life of the patient, while the latter is the attending physician who wants to
terminate treatment and let the patient go. Each represents a different attitude toward
medical science and technology. Families, on the one hand, represent the optimistic
attitude that progress in science and technology is good because it offers us solutions
to pressing human problems such as death. Doctors, on the other hand, represent
54 Diego Llovet
a cautious attitude that suggests that technical and scientific progress can actually
make things worse.
The conflict between antagonist (the family) and protagonist (doctors) in this
narrative reveals an opposition of two ways of life, one that medicine is claiming
to abandon and the other that medicine is claiming to embrace. The former is the
way of life of Enlightenment, which is grounded in a notion of permanent progress
that enables us to overcome every problem and limitation that we may happen to
experience. It is a way of life that promises that one day we will live free from
constraint, restrictions, or necessity and that human agency and capability will
expand far beyond the narrow limits imposed on us by the physical environment
and our embodied nature. This is what medicine today seeks to repress by teaching
families resignation to death.
By contrast, medicine now suggests a way of life where limits are recognized,
where death is not seen as a problem that needs to be overcome. Instead, death is
seen as the natural culmination of biological life, a necessity that cannot and should
not be avoided because all life must come to an end. Medicine wants to terminate
treatment for the dying patient because this is how it is able to make way for “the
end,” to give it its proper place in the person’s biography. Of course, “the end”
will come no matter what the effort but medicine seems concerned that trying to
prevent it means that something important is being lost or at least concealed: namely,
the process of decay of the human being, both as a body and as a person. Labeling
someone as “dying” ensures that this process of decline is visible.
Free from the interference of life-sustaining measures, the dying patient slowly
takes leave from life and becomes a ruin: she becomes, in Simmel’s words (1959),
a site of life from which life has departed. Like an old building exposed to the
destructive influences of nature, the dying patient becomes a spectacle of a
struggle between the upward striving forces of life, will, and spirit and the
downward dragging forces of death and nature—a struggle in which the latter seem
to prevail. The ruin, Simmel writes, fascinates us because the spectacle of decay
allows us to directly and materially experience the past. He says: “in the case of
the ruin, the fact that life with its wealth and its changes once dwelled here
constitutes an immediately perceived presence. The ruin creates the present
form of a past life” (1959, 265). And he suggests that this material experience of
the past conveys a certain sense of peacefulness. Could this be the reason why
medicine insists so adamantly on letting the process of dying run its course
unimpeded when it is clear that the patient has no hope of recovery? Allowing
the dying patient to become a ruin in Simmel’s sense would enable friends and
family to experience peacefulness in the face of the death of a loved one. A ruin,
the dying patient palpably stands before friends and family as everything that the
person once was, empowering them to mourn a loss not yet consummated.
Notes
1 This chapter is a reproduction of one of the chapters in my doctoral dissertation, titled
“Public Health, Medicine and the Ideal of Self-Governance: Conflicts in the Modern
Culture of Health and Well-Being,” (Department of Sociology, Faculty of Graduate
Studies, York University). This chapter also contains sections that are part of a paper
I first published as “Hope and Resignation in Medical Care: When Doctors go to Court
to Terminate Patient Treatment,” 2011, in Spectacular Death: Interdisciplinary
Perspectives on Mortality and (Un)Representability, edited by Tristanne Connolly,
Bristol: Intellect, pp. 201–16.
2 The reader might notice that the medical profession is often referred to as an agent in
this article. This should not be treated as an inappropriate anthropomorphization, as
the article focuses exclusively on the profession as a whole instead of on individual
caregivers, and on the ways in which the profession shapes the role of patients in the
clinical setting. Consistent with this is the fact that the data that are analyzed consist
mostly of documents produced by the different organizations that in one way or
another claim to rule the practice of medicine in a given jurisdiction.
3 The Tuskegee Syphilis Experiment is often cited in the bioethics literature as an example
of the importance of consent in research and clinical practice. Scientists working on
the project had inoculated unsuspecting black males with syphilis in order to study
how the disease progressed in untreated patients.
4 In the province of Ontario, legislators decided to codify court decisions favoring the
requirement of informed consent and so gathered to pass the Consent to Treatment Act
in 1991, the predecessor of the currently enforced Health Care Consent Act of 1996.
In moving a second reading of Bill 109, An Act Respecting Consent to Treatment, on
June 20, 1991, Ms. Lankin presented the bill to fellow Members of the Provincial
Parliament as an effort to emphasize “the very important role to be played by
consumers” in healthcare and as a tool to help knowledgeable consumers “make wiser
choices regarding . . . treatment.” She said: “we are all consumers of health care. When
it comes to health, consumers definitely need, all of us need to be fully informed. We
want to know what our options are” (Legislative Assembly of Ontario, 1991). While
these statements give a clear indication of the ideological climate of the day, the link
between informed consent and consumerism through the idea of “choice” is weak at
best, given that consumers can only exist in relation to a marketplace where providers
compete with one another for customers. Informed consent, however, lacks this key
element of competition in the marketplace, and should instead be regarded as the artifact
of a notion of rights and enlightened citizenship.
5 Both the College of Physicians and Surgeons of Ontario (2006) and the Canadian
Medical Protective Association (also known as CMPA, 2006), a professional organ-
ization that provides legal advice and representation to physicians in Canada, have
publications outlining the “do’s and don’ts” of informed consent that should help
physicians keep safe from litigation. In its guide, the CMPA says:
That consent to treatment was lacking or inadequate continues to be a frequent
claim against physicians. Obviously, it is important therefore that physicians be
aware of their legal obligations in obtaining consent from patients. It is hoped this
booklet will assist in strengthening this awareness. It is not intended as a legal
treatise on the subject of consent but rather as a practical guide for physicians in
their day-to-day dealings with patients.
(CMPA 2006, 2)
6 This line of reasoning has also been used by disability rights advocates to argue that
the lack of informed consent in prenatal screening by virtue of the medical profession’s
promotion of testing leads to a high rate of abortion of fetuses diagnosed with Down
Syndrome and is therefore tantamount to “institutionalized eugenics” (see Dixon
2008). The argument here is not that informed consent is fundamentally a “lie,” but
that it is so in its current form and that the correct use of informed consent can in fact
promote real choice.
56 Diego Llovet
7 While Goldberger et al. (1997) suggest that the requirement of informed consent be
changed to reflect better clinical practice with the physician as decision maker, both
Gawande, and Tobias and Souhami claim that on average doctors have never in
practice allowed patients to make decisions autonomously. In this respect, Tobias and
Souhami say: “we believe that many doctors already vary what they say to patients in
just the way we describe. We suggest that they should not be ashamed of so doing—
whatever the ethicists say” (1993, 1201).
8 This sense is also conveyed by an article aptly titled “Informed Consent and other Fairy
Stories” (Jones 1999).
9 Section 241 of the Criminal Code of Canada says:
Every one who (a) counsels a person to commit suicide, or (b) aids or abets a person
to commit suicide, whether suicide ensues or not, is guilty of an indictable offence
and liable to imprisonment for a term not exceeding 14 years.
10 In re: Quinlan, a case decided by the New Jersey Supreme Court in March of 1976,
was similar to that of Nancy Cruzan. Karen Quinlan, a young woman in a persistent
vegetative state, had been on life support for some time until her parents, seeing that
no recovery was possible, requested that she be disconnected from mechanical
ventilation. Just like with Cruzan, both the hospital and the state refused and a legal
battle ensued. The New Jersey Supreme Court authorized the cessation of life support.
11 In Ontario’s Health Care Consent Act of 1996, the definition of whether a patient is
capable of making treatment decisions will depend on whether he or she is
able to understand the information that is relevant to making a decision about the
treatment, admission or personal assistance service, as the case may be, and able
to appreciate the reasonably foreseeable consequences of a decision or lack of
decision.
(Sched. A, s.4(1)l)
12 To date, a number of different types of advance directives have been made available
to the public. In an appendix to an article, Perkins (2007) lists some of them: “A Living
Will,” from 1978; “The Medical Directive,” from 1990; “Your Life, Your Choices,”
from 1996 and 2001; “The Texas Advance Directive,” from 1999; and “Five Wishes,”
from 2000. These forms, which range between 2 and 12 pages in length and sometimes
offer “wallet cards” for people to carry with them, have been created, depending on
the case, by physicians, patient rights organizations (such as “Concern for Dying” and
“Aging with Dignity”), and government lawyers. The forms allow patients, through
different formulations, to make choices about which treatments they would want and
which ones they would refuse, should they become incompetent. The Medical Directive
(Emanuel and Emanuel 1989), for example, formulates “four paradigmatic scenarios”
defined by prognosis and type of disability and it offers a double entry chart where
patients can check boxes indicating their choices for situations A (coma with no known
hope of regaining awareness), B (coma with likelihood of surviving with permanent
brain damage), C (brain damage in combination with terminal disease), and D (brain
damage, no terminal illness).
13 The Act states that the Public Guardian and Trustee will act as substitute decision maker,
should no person listed below be available.
14 The Board is a fairly large and active organization. It has 134 appointed members and
an annual budget of almost 5 million dollars, and it receives and hears thousands of
cases annually (over 5,000 applications in 2009–10 and 2,365 cases heard in 2009–10.
According to its website (www.ontario.ca/laws/statute/96h02),
over 80 percent of applications to the CCB involve a review of a person’s
involuntary status in a psychiatric facility under the Mental Health Act, or a review
under the Health Care Consent Act of a person’s capacity to consent to or refuse
treatment.
(Sched. A, s.4(1)l)
15 For the medical profession, the term “do not resuscitate” is inaccurate and should be
taken to mean “do not attempt resuscitation.” The comment makes visible medicine’s
concern about the limits of its own science and technique, as well as its desire to make
these limits public by naming its procedures in ways that do not generate “false hope”
among practitioners and clients. This recognition of the limited usefulness of the
technique of cardio-pulmonary resuscitation comes after a relatively long period of
optimism regarding the applicability of this technique.
16 It is interesting to note that there seem to be no Consent and Capacity Board cases where
the roles of physicians and families are reversed, with the former demanding a continuation
of treatment and the latter demanding that treatment be ceased. This fact serves to strengthen
the claim that the five cases selected here adequately represent the modern medical ethos
in relation to the question of the promise and limits of medical science.
17 Medicine’s formulation of the ICU as a setting that propitiates disorders and suffering
associated with sleep deprivation is similar to the formulation of sleep deprivation as
a technique of torture. The Guardian (Goldenberg 2004), for example, wrote about the
US Army’s use of sleep deprivation against suspects of terrorism on an equal footing
with mock executions.
18 Comparing patients to prisoners and hospitals to prisons is an interesting rhetorical
move. Along with the construction of the doctor as torturer and the critique of medical
technology, it adds drama to medicine’s self-presentation as a rehabilitated subject
(“humane”/”no longer a torturer”) whose redemption authorizes it to take the moral
high ground vis-à-vis patients and their relatives. This is a mechanism that is similarly
available to criminals and other people with spoiled reputations who seek not just to
be readmitted into the community that once expelled them, but to be admired by it.
However, medicine’s position is one of privilege: because medicine is, by and large,
in control of this narrative of self-critique and self-transformation, it faces none of the
challenges that ex-convicts are likely to face when presenting their new self to sceptical
members of the community—e.g. “once a thief, always a thief.”
19 Here, families lose their right to represent the patient and are ordered to do what the
doctor prescribes. Should they refuse to do so, families risk losing their status as
substitute decision makers, given that the Board may search for a new proxy who will
agree to consent to the treatment. The battle between medicine and families, however,
does not necessarily end with a decision by the province’s Consent and Capacity Board.
Relatives can also challenge the Board’s decision by presenting their case before regular
courts of justice, all the way up to the Superior Court. In this chapter I focus only on
decisions made by the Board.
20 These conclusions point to two weaknesses in the conventional discourse on informed
consent. One is that this discourse typically highlights the conflict between medicine
and the patient, but it tends to forget the conflict between medicine and the family. As
a discourse, informed consent is as much an affirmation of patient autonomy as it is a
strategic recasting of the family as a secondary, marginal actor. The second weakness
is that informed consent is conventionally presented as something that the profession
does not want, something resisted. At least as far as these five Board cases go, this is
far from the truth. While physicians may neither like nor foster patient participation,
informed consent is deeply entrenched in medical discourse and practice and it serves
as a template for lawful clinical decision-making. Medical aversion to patient
participation should therefore not be confused with medical aversion to informed consent.
21 I have taken this phrase from a famous English case, quoted by the Consent and Capacity
Board in one of its decisions. The quote reads:
58 Diego Llovet
Looking at the matter as objectively as I can, and doing my best to look at the
matter through Mr. Bland’s eyes and not my own, I cannot conceive what benefit
his continued existence could be thought to give him.
(2007b, 21)
22 Before becoming institutionalized in clinical practice, this notion of the moral duty to
die circulated widely in works like those of Daniel Callahan, who wrote extensively
on medical technology and the need to impose limits on its use, particularly in situations
where such interventions are likely to delay death and cause unnecessary suffering.
He wrote, among many others, The Tyranny of Survival and other Pathologies of
Civilized Life (1973) and Setting Limits: Medical Goals in an Aging Society (1988).
23 The Consent and Capacity Board is but one mechanism to enforce the medicalization
of “the good death.” Zimmermann (2007), for example, has suggested that clinical
literature, too, can serve to create and enforce expectations among patients and their
families regarding the “proper” way to die.
24 Armstrong and Caldwell also make this point in a paper where they show the role that
the concept of “quality of life” has had in helping the medical profession find a standard
for the evaluation of medical interventions. They say: “Quality of life at once defined
the limits of technological excess and provided the counterpoint to medical success.
Quality of life asserted the very meaning of life against the non-human forces that social
change had unleashed” (2004, 369; my emphasis).
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2 Judgment, care, and informed
consent
Philip Walsh
Introduction
“Rationalization” and “individualization” have become well-worn conceptual
terms within sociology to describe dominant trends within the culture of “late
modern” societies that affect the potential for personal agency. According to
conventional sociological wisdom, agency is problematized through rationalization
and enhanced through individualization. This has implications for more
philosophical/ethical questions such as the value of individual autonomy and the
meanings of dignity and rights. In this chapter, I explore the extent to which the
end-of-life care relations between medical practitioners and patients exemplify how
problems of rationalization and individualization are dialectically intertwined. I
first examine the meaning of these terms through some of the theoretical literature,
before turning to the role of the principle of informed consent in end-of-life care
as a case study of this entwinement. I then examine the problems of judgment
that these developments imply, with particular reference to Hannah Arendt’s
conception of reflective judgment.
Rationalization and individualization in late modernity

The core of Max Weber’s work is often considered to be his understanding of the
modern world in terms of rationalization (cf. Baehr 2016, 17). Rationalization has
two sources for Weber. The first is science, which, as he notes in the first of his
two World War I addresses to students, “Science as a Vocation,” (1946, 139)
“disenchants” the world. This points to the importance not of technology per se,
nor of expertise in its handling (in fact, he notes that this has diminished for most
people), but to the fact that “one need no longer have recourse to magical means
in order to master or implore the spirits . . . Technical means and calculations
perform the service” (140). But disenchantment, and the scientific enterprise that
advances it, goes hand in hand with a second element: the growth of formal rules
and the application of pre-existing formulae to human conduct. As more and more
areas of human life become subject to the formalization of rules, Weber suggests,
the space for human agency diminishes: hence his image of the modern world as
an “iron cage” of rationality.
64 Philip Walsh
Weber’s rationalization thesis has been subjected to various embellishments and
re-workings, not least by his widow Marianne Weber, who was responsible for
editing many of his writings that were later published as Economy and Society
(1978). In this work, rationalization is linked to Weber’s theory of action by being
associated with a particular variant of rational action that he dubbed “formal”
(Wertrationalität). Formal rational action is concerned entirely with efficient
means and acquires its meaning in this work through the contrast with substantive
rationality (Zweckrationalität). Substantive rationality involves a questioning of,
and reflection on, ends as well as means, which inevitably requires reference to
values in the estimation of the ends. However, Weber suggests that the dominance
of formal rational action, as an outcome of both the disenchantment of the world
and the proliferation of rule-patterned activity, tends to eclipse substantive
rationality. As Robert Merton (1957, 201) later expressed the point, “adherence
to the rules, originally conceived as a means, becomes transformed into an end-
in-itself.”
Subsequent sociological theories have sought to address the dysfunctional
aspects of rationalization by proposing limits to it. Daniel Bell (1973, 67) distilled
out his own distinctive conception of rationalization by defining it as “the spread
through law, economy, accounting, technology, and the entire conduct of life of
a spirit of functional efficiency and measurement, of an ‘economizing’ attitude
(maximization, optimization, least cost) toward not only material resources but
all life.” Bell agreed with Weber that this “economizing attitude”—or technocratic
worldview—would likely proceed at the cost of reasoned consideration of the ends
to which such economizing means aims. Nevertheless, he argued, “in the end, the
technocratic mind-view necessarily fails before politics” (Bell 1973, 365), by which
he meant that a democratic polity was a necessary and viable counterweight to
technocracy. The “difficulties” of democratic politics, its intrinsically agonistic,
conflicted, power-oriented and “irrational” character, for Bell, was part and parcel
of its role as a redoubt against rationalization.
In contrast, Jürgen Habermas has sought to develop a “rational politics” to
contain the totalizing spread of “instrumental rationality.” This is premised on
Habermas’s theory of communicative action, which re-interprets Weber’s theory
of action in order to distinguish more sharply between rationalization and reason.
By defining communicative rationality as a distinct type of action that is directed
not towards “foreseen ends,” but towards the achievement of mutual understanding
(1981, 285–6), Habermas aims at defining the environments within which par-
ticular kinds of rationality are legitimate. The proliferation of formal/instrumental
rationality in the sphere of human communicative relations rests not on extra-
subjective factors, but on a distortion of the lifeworlds within which people make
sense of the actions of themselves and others. In his earlier writings, Habermas
argued that rationalization, in the sphere of the productive economy, and “reason”
in the sphere of human relationships can co-exist and become mutually reinforcing
once their respective meanings become fully sutured into everyday life. However,
in his more recent work (e.g. Habermas 2003), in which he focuses on the
“disenchanting” consequences of contemporary technology—particularly in the
Judgment, care, and informed consent 65
life-sciences—Habermas is arguably more pessimistic about the possibility of
limiting rationalization.
Another important strand of sociological theoretical literature highlights a
prima facie diametrically opposed tendency, in the phenomenon of “individual-
ization.” Arguably this theme originates in Durkheim, whose conception of
organic solidarity is premised on the enhancement of individuality in the modern
world. Ulrich Beck (2009, 54–5; Beck and Gensheim Beck 2001, 22–9) is perhaps
the most prominent contemporary exponent of the theory of individualization. For
Beck, the growth of individualism, together with the ideal of a “life of one’s own”
(Beck and Gensheim-Beck 2001), equates with the fact that the power to take life-
altering decisions increasingly accrues to the individual, rather than being primarily
determined by cultural or institutional factors. For Beck, and Anthony Giddens,
this reflects a shift in the time and space horizons available to people living in a
globalized late modernity. Earlier societies persisted largely through the patterning
of inherited or “traditional” practices, which oriented individual and collective
lifeworlds—to a greater or lesser degree—towards the past, and persistence, or
“fate,” was the organizing principle of the culture. As “risk” or “post-traditional”
societies increasingly promote a culture of planning, forecasting, projection and
“colonization of the future” (Giddens 1994, 125), the orientation of lifeworlds shifts
from “fate” to “risk,” and this further promotes a strongly individualistic culture,
in which identities, roles, skill-sets, ethical stances, and decision procedures are
increasingly devolved onto the individual. While the overall field of rule-patterned
activity (rationalization) expands, then, individuals become disembedded from the
sources that provided them with repertoires for making sense of the meaning of
social environments. This also has the effect of enhancing reflexivity, as Margaret
Archer has pointed out. Although she criticizes the theoretical frameworks of Beck
and Giddens, she agrees that the intensification of reflexivity is a consequence of
increased individualization. For Archer (2012), this “reflexive imperative” derives
from individuals confronting conditions that force them to become self-aware,
allowing both individual empowerment and new opportunities for deliberation and
action. Although Beck and Archer have both noted that individualization can have
a “dark side” in the potential for atomization and anomie, they largely view it as
an emancipatory turn, insofar as it advances personal autonomy.
Although proponents of the individualization thesis see it as in conflict with
those who emphasize progressive rationalization, there is a sense in which the two
processes are by no means incompatible, and even mutually reinforcing. The
dilemmas of end-of-life care provide an interesting example of this, and expose
the limitations of both reflexivity and communication to deal with problems that
stem from both individualization and rationalization. As I argue below, this
illustrates the need to reconsider human judgment as a response to some of the
dilemmas engendered by rationalization and individualization.
End-of-life care and informed consent

In his (1984) essay, The Loneliness of the Dying, Norbert Elias discusses
the changes in attitudes toward the dying that have accompanied other major
66 Philip Walsh
long-term alterations in the human condition. The most significant of these is the
privatization and individualization of dying. Like sleeping, sexual activity,
excreting, and other bodily functions that human beings share with animals, there
has been a long-run tendency for these activities to be pushed more and more behind
the scenes of everyday life. In the past of industrialized nations, and in many places
in the less developed world today, these are—or were—things that were done much
more often in the company of others. The communality of social life was such
that it was impossible to withdraw oneself from others in the course of these
activities. Dying in the past was, therefore, a far more public and mundane event.
Healthy people, perhaps not routinely, but very often, encountered dying people
in the course of their everyday lives. Moreover, there was far less embarrassment
or hesitation in speaking about such things. Death could be spoken of with less
solemnity and was less bound by taboo. There was no strong sanction, for
example, in exposing children to the experience of dying people, or of discussing
death with them.
The modern hospital, the professionalization of doctors, and the explicit
formalization of the doctor–patient relationship have had the effect (among many
others) of making death and dying more private. Elias points out that this has also
engendered a certain social distance that can lead to more loneliness among the
dying today. As sick and dying people vanish from everyday experience, they tend
to experience themselves—in the context of the hospital and long-term care
homes—as inhabiting a different world from the healthy. This potentially
attenuates their ties with the living and increases their loneliness. They experience
their vulnerability more acutely. The power differential between the healthy and
the sick, and therefore between the caregiver and receiver, is also potentially greater
under the conditions of the privatization of dying.
Since Elias wrote his essay on dying in 1984, the culture of the modern hospital
and the relation between the dying and caregivers has altered further. The
sequestration of the dying behind the scenes of everyday life persists, though
arguably taboos against the open discussion and experience of death have
weakened. But perhaps the decisive shift is dying has become more and more an
individual act that is more and more subject to rule-patterning. Decisions about
whether to submit to life-prolonging procedures, together with deliberation and
reflection upon the ongoing value of living are increasingly borne by the individual.
But such decision-making and deliberations have also become increasingly subject
to rules and rule-following, and therefore potentially fenced in by formally rational
norms. A key driver of both these developments has been the institutionalization
of the principle of informed consent.
Informed consent originally evolved as an ethical principal to govern relations
between patients and caregivers, and indeed has succeeded in solving many of
the problems of personal authoritarianism and asymmetries of power that
previously existed between these roles. It was, for example, standard practice in
the nineteenth and early twentieth century for doctors to make decisions about
the appropriateness of intervention, including surgery, without seeking permission
or even enlightening patients about the nature of the procedure. Llovet (2012),
Katz (1984), and others have traced the history of informed consent with reference
to the major legal cases through which it came to be established. The landmark
cases of Pratt v. Davis (1905) and Schloendorff v. Society of New York Hospital
(1914), in both of which surgical procedures were carried out on women without
their prior consent or knowledge, established the principle of consent to medical
procedures in US law. In 1957, a California law court ruled in favor of a patient
who had been paralyzed as a result of an intervention the risks of which he had
not been made aware of, thereby securing the principle of informed consent.
Informed consent requires that patients be in a position to fully understand the
costs and benefits of a procedure, such that they can make reasoned choices about
the contribution it may make to their health. Informed consent produces, therefore,
not only a set of external, legally sanctioned norms governing practices, but also
a novel form of intersubjectivity. Not only must medical practitioners “take the
role of the patient” in proposing and enacting interventions, but patients are required
to take up a position of expertise relative to their own lives and health. The guiding
principle of informed consent is that the patient is in the best position to judge
the costs and benefits of a particular procedure. This principle has come to be not
only an accepted part of the regulations governing medical practice in every country
in the western world, but also a feature of the lifeworlds of medical practitioners
and patients.
In relation to end-of-life care, informed consent has also come to be the main
principle governing the care relationship. But, in contrast to situations where
informed consent is sought in order to save the life, or restore the health, of the
patient, end-of-life care raises the possibility that neither of these ends can or should
be aimed at. Informed consent in these situations can lead to complex dilemmas
in which the meanings of “costs and benefits” are thrown into doubt because life
or health can no longer function as baselines for determining their meaning.
Llovet (2012) has noted the paradoxes that the language of informed consent
produces under these conditions. Informed consent enables a transition in the norms
governing medical treatment from an emphasis on saving life and restoring
health—a battle against dying—to the management of death as another aspect of
illness, over which patients must establish themselves as “experts,” capable
of making reasoned choices relative to an assumed, agreed-upon standard of
costs and benefits, which does not in fact exist. This represents a dilemma of
individualization: formally enhanced reflexivity and individual agency become
questionable goods under these circumstances. Indeed, some medical practitioners
have critiqued the principle of informed consent along these lines, suggesting that
the burden of decision-making—especially in the absence of meaningful standards
of well-being—adds to the burden of disease and impugns the professional
responsibility of doctors to prevent suffering (Tobias and Souhami 1993; Gawande
1999). The individualization of action under conditions where no positive cost-
benefit outcome can be calculated leads to situations where it becomes possible
for caregivers to discuss a patient’s “obligation to die.” This is captured well in
a remark made by a British doctor, quoted in Llovet (2012) on a particular case,
who observes:
68 Philip Walsh
Looking at the matter as objectively as I can, and doing my best to look at
the matter through Mr. B’s eyes and not my own, I cannot conceive what
benefit his continued existence could be thought to give him.
(162, n.62)
The principle of informed consent becomes potentially problematic in the case of

end-of-life care because it was designed as an instrument to govern means to ends
that were taken for granted. In this sense, informed consent, when it is applied to
end-of-life care, represents an archetypical case of formal rationality, in which
the ends aimed at are not sufficiently objectified to the actors involved. When
neither health nor life can be secured, it is not clear what informed consent is
intended to accomplish. Moreover, the individualization that results from inserting
the principle of informed consent into the caregiving relationship potentially
leads to the translation of “existential” questions into the clinical vocabulary of
cost-benefit analysis. This leads to formulations such as the above, “what benefit
[the patient’s] continued existence could be thought to give him,” which are not
heartless but close to meaningless.
One possible response to this problem is Habermasian: informed consent has
to be understood not as a vehicle of formal, but of communicative rationality. The
intersubjective understanding between caregivers and patients that informed
consent enables is not exclusively in the service of health or life; it is an ethical
principle intrinsic to the relationship itself, and is an extension of the basic
recognition and dignity that human beings owe to each other in their relationships
more generally. Informed consent may allow the patient to aspire to an expertise
in making judgments that enhance her health and life (autonomy), but this is not
the primary value of informed consent. Rather, such expertise must be seen as
flowing from the intrinsic dignity and rights of the individual. In the case of end-
of-life care, this ethical rationale for the principle of informed consent comes to
the fore, as the possibilities for “expertise” shrink. But the ethical rationale is
ultimately the basis for the principle in all cases, not simply those involving end-
of-life care.
The problem with this response is that it does not cohere very well with either
the legal justifications that have been advanced to support the principle of informed
consent, or with how actors understand the principle in practice. It is true that, in
cases where patients have lost the capacity to make decisions about their ongoing
life or health, for example, advanced dementia, or where a patient enters a
persistent vegetative state, the values shift from those associated with “autonomy”
to those around “dignity.” But the ethics of communicative rationality do not fit
very easily with notions of dignity. For Habermas, communicative rationality leads
to an ethics of recognition, which in turn implies equality. Notions of dignity derive
from rights-based discourses that tend to be grounded in deontological ethics.
We can conclude, then, that informed consent is to be credited as the primary
reason for the redress in the balance of power between caregivers and patients.
This is because it is a technology that provides means for patients to enhance their
expertise and therefore their autonomy within the caregiver–patient relationship.
In the case of end-of-life care, however, informed consent has had ambivalent
effects, because it cannot address the substantive and existential questions that
tend to arise. One further conclusion to draw from the rationalization and
individualization of end-of-life care is that caregivers and patients need different
criteria to judge situations where the logic of formal rationality and of expertise
does not hold. Indeed, where technical rules gain an upper hand as the decisive
feature governing interaction, individual judgment is likely to play a far smaller
role in the construction of the relationship. It also potentially increases the social
distance between caregivers and patients, and exacerbates, perhaps, the loneliness
of the dying.
But what is it to exercise judgment? This was a question that interested
Hannah Arendt intensely, especially in her later writings. Her late masterpiece,
The Life of the Mind (1971) was organized around investigating three human
mental faculties: thinking, willing, and judging. Of these, she was perhaps most
interested in judging, though she did not live to write the third volume exploring
it. Her reflections on judging are therefore incomplete. Nevertheless her drafts
and lectures have allowed scholars to piece together some of her thinking
about judging. An exploration of this sheds some light on how judgment might
play an enhanced role in people’s confrontation with their own mortality and
end-of-life care.
Hannah Arendt and the capacity to judge

At first glance, judgment seems to be a relatively self-evident human faculty.
But this is deceptive, and we need to distinguish it from its cognate capacities.
Most mental acts that we call judgments are in fact pre-judgments, or prejudices.
A prejudice is an already-existing opinion to which we may assent, but which
does not involve our active mental capacities. Prejudices are necessary
accoutrements to the tasks of understanding the world and running one’s everyday
life without having to constantly question established habits of identification
(Arendt 2005, 102). But the danger of prejudices (or one of them) is that they are
useless in dealing with novel phenomena. When one encounters something new,
one must stop relying on pre-judgments and engage judgment itself. Judgment
requires that we represent a situation to ourselves in an ordered manner that allows
us to draw a conclusion. Judgment is also not the same thing as thinking or willing.
These are distinct human capacities that do not necessarily work together. Finally,
we should distinguish judgment from reflexivity. Reflexivity is an attribute of a
mental capacity that allows it to be directed to itself, but is not itself a capacity.
Arendt remarks that judgment is the least reflexive of the three mental capacities
of thinking, willing, and judging (1971, 73).
Arendt explored the topic of judgment through a creative re-working of Kant’s
theory of judgment, and contrasts two kinds of judging: when we discern the
appropriate rule under which to subsume an act or situation we are exercising
determinative judgment. Deduction, or subsuming particulars under universals,
are archetypically determinative judgments. We make determinative judgments
70 Philip Walsh
in order to reflectively classify, to organize, and to establish what is true in an
everyday sense. We also make use of determinative judgment in our moral and
interpersonal relations, since these are largely encoded within the prevailing
culture. The concept of “following a rule,” as Weber understood, involves
determinate judgments insofar as it involves the normally tacit subsumption of a
particular (this act) under a general rule (acts of this kind). Tacit rule-following
is a kind of formal rationality, in which the end at which the activity aims does
not enter the agent’s consciousness as a determining feature of her motivation.
Arendt’s conception of determinative judgment is therefore, to some extent, a
subjective correlate of formally rational action.
But there are also reflective judgments. Reflective judgment involves the
capacity to recognize parallels of the type: to what extent does a situation or thing
resemble another? Reflective judgment operates via examples, and requires
imagination, since only through imagination can we juxtapose a situation or event
that is present to us with another that is not. Reflective judgment is in play not
primarily when we try to determine what is true, but when we try to discern what
is right or wrong, as well as what is beautiful or ugly. Reflective judgment does
not tell us what is the appropriate rule for understanding a given situation, but
directs our attention to the particularity of the situation. It is therefore an inherently
reflexive capacity. It is also our only recourse when we encounter “unrationalized”
areas of human conduct, where no rule is available to subsume our action under.
There is another important element to reflective judgment for Arendt. This
concerns its necessary reference to communicability and to a shared world. When
we exercise reflective judgment we necessarily entertain the possible judgments
and opinions of others. This does not mean following the opinions of others, but
of including their possible opinions when we reflect on a situation. Reflective
judgment, then, must always appeal to communicability, and therefore to a public
human world. What we feel is wrong or right, or what we find tasteful are private
experiences, but the reflective judgment that allows us to say this is beautiful,
or this is wrong require an enlarged mentality that takes into account a common
human world.
Arendt was of the opinion that the capacity to make reflective judgments was
becoming impoverished in the modern world as a direct result of the dominance
of apparatuses of determinative judgment, and her position was not dissimilar from
Weber’s in this respect. These apparatuses themselves proliferate in response to
the complexity of the modern world and the transformation of the meaning of
private and public. In situations where there is no shared background of meanings
where communicability can find a foothold, even in situations that enhance
reflexivity, it becomes difficult for agents to exercise reflective judgment, or even
to make judgments about judgments, that is, recognize the importance of
distinguishing between determinate and reflective judgment.
Arendt examined various cases where people lost the capacity to judge
reflectively. The most significant example of this was, of course, mid-twentieth-
century totalitarian societies. These societies aim not simply at the control of
individual actions but of individuals’ understandings, particularly of the moral
implications of their acts, which are closely tied, in Arendt’s view, to reflective
judgment. One of the most frightening facts about such societies is that this did
not prove to be so very difficult. It also did not lead to a breakdown of everyday
ordinary morality, since this is governed largely by rule-following. But
totalitarianism created conditions where large numbers of people were unable to
“see that crimes remained crimes even if legalized by the government” (2003, 78).
But Arendt (1961, 179) also suggested that a conflict between determinative
and reflective judgment could emerge in less extreme situations. What she
perceived to be the “crisis in education” was one of these. She was thinking of
the tendency within education to emphasize pedagogy as the core “skill” of
educators instead of expertise in a specific field. Pedagogy teaches general rules
as guides to action, thereby reducing the role of particular considerations in
reflective judgment.
Reflective judgment then involves two elements: the capacity to understand a
situation in its particularity—and not simply as a case to which a rule can be
successfully applied—and the capacity to enter into how diverse others
comprehend it. Reflective judgment is therefore a capacity to which we have
recourse when there is no existing rule to apply. It is a complement to what Arendt
referred to as “thinking without bannisters,” by which she meant responding
sensitively and responsibly to events of which we have no experience or prior
knowledge but which we must somehow comprehend and come to terms with.
Conclusion: judgment and end-of-life care

Judgment, as a distinct human capacity, is not the preserve of a particular legal
occupation. It is—like labor, work, and action—“within the range of every human
being” (Arendt 1998, 5), and we are called upon to make reflective judgments at
various points in our lives, not least at the end. But the rationalization and
individualization of the care relationship in accordance with the principle of
informed consent cedes little space or opportunity for reflective judgment. Since
every decision must be made, under the doctrine of informed consent, according
to rules that prioritize patient autonomy, there can be no cases where no rule is
applicable, and in which reflective judgment could come into its own. Informed
consent surely has a role to play in securing the autonomy of the dying patient,
but we should not assume that individual autonomy is always the practical or ethical
end that should be aimed at. In such cases, informed consent ceases to apply as
a guiding principle of action. But this does not mean that there can be no principles
to apply. It means only that we have to look to a different human faculty, that of
reflective judgment, which is not in the service of rules or precedents, to guide
action.
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3 End-of-life conflicts, the law,
and Arendt’s political
thinking
Kieran Bonner
that she was now in. Did Ms. P. believe that not to give up extended to
performing CPR on an unconscious person whose organs were shutting
down?
(Consent and Capacity Board 2005, 10;
quoted in Llovet 2012, 148)
Intersubjective meanings are ways of experiencing action in society. They

are expressed in the language and descriptions, which constitute or ground
the institutions and practices in society. . . .
Intersubjective meanings give people a common language to talk about
social reality and a common understanding of certain norms, but only with
common meanings does the common reference world contain significant
common actions, celebrations, and feelings. These are objects in the world
that everyone shares. This is what makes community.
(Charles Taylor, “Interpretation and the Sciences
of Man” 1977, 121–2)
Intersubjectivity and community

Taylor, in his celebrated essay, addresses the limits of a social science that seeks
to sidestep the intractable problem inherent in interpretation, the problem of the
hermeneutic circle. Taylor does not doubt the productivity of such a science, and
he does not doubt the claims of social science to be a self-regulating institution
with regard to policing what counts and what does not count as verifiable
knowledge. Neither does Taylor address the issue of the reflexive integrity of such
social science research, whether in the ethnomethodological demonstration that
such knowledge hides the way its accomplishment is ground in the member’s
methods (Garfinkel 1967), or in the analysis demonstration that it is committed
to concealing its own community of commitment (McHugh et al. 1974). Rather,
74 Kieran Bonner
he addresses the concern of the deeper issues that are necessarily excluded from
research by virtue of its commitment to verifiable empirical knowledge. These
deeper matters are intersubjective meanings, “which constitute or ground the
institutions and practices in society” (Taylor 1977, 121). Such intersubjective
meanings “fall through the net of mainstream social science. They can find no
place in its categories. For they are not simply a set of subjective reactions, but
part of the common world” (Taylor 1977, 122).
As an illustration of this argument, Taylor talks about the intersubjective
meanings that ground the practice of voting in a liberal democratic state.
The activity of marking and counting papers has to bear intentional descrip-
tions which fall with a certain range before we can agree to call it voting
. . . Implicit in these practices is a certain vision of the agent and his relation
to others and to society . . . It requires a picture of the parties as in some sense
autonomous, and as entering into willed relations. And this picture carries
with it certain implicit norms, such as that of good faith, or the norm of
rationality . . . or the norm of continued freedom of action as far as attainable.
(Taylor 1977, 118–19)
While social science can correlate voting patterns with class, race, gender, etc.
and these correlations can be scientifically verified, the picture of the agents, their
relation to others and to society is implicit to the practice of voting and grounds
the social science research on voting.
This implicit vision, as Taylor notes, is variable according to the particular society
and to groups within society, and it is analytically arguable. Not all agents in every
society see themselves as rationally autonomous and entering into willed relations;
more importantly, it is arguable whether this vision of agents in their relation to
others and society is the best for community. Deeply, of course, this particular
vision is misleading, as it relies on a “we” or community that makes it appear as
if the autonomous individual or “I” is first. “What the ontology of mainstream
social science lacks is a notion of a meaning as not simply for an individual subject;
of a subject who can be a ‘we’ as well as an ‘I’” (Taylor 1977, 123), or as he was
to put it in his later work (1989), a notion of a subject who has a self-reflective
relation to the moral framework that necessarily grounds her speaking and action.
It is precisely to such a lack that the art of hermeneutics seeks to respond (Gadamer
1975).
Illness, end of life, and informed consent

Illness and end-of-life concerns is one everyday area where the vision of the agent
in relation to others and to society is topicalized and made a subject of dialogue.
As is well known, the rise of the modern era includes not only the rise of the liberal
democratic state, including the disciplinary society that is a feature of that state
(Foucault 1977), but also the rise of the institutionalization of medicine. Both law
and medicine, as modern institutions in the Parsonian sense of that term, limit,
End-of-life conflicts 75
shape, and modify the contemporary doctor–patient relationship. For example, as
shown by Llovet (2012), the law on informed consent was initially developed to
protect the patients in the face of the rise of the institutionalization of medicine,
scientific medicine, medical technology and the way these threaten to orient to
the patient as a mere carrier of symptoms and illness. The law, through the
requirement for informed consent, requires that the medical profession, as agents
of modern health institutions, make room for patient participation. The vision of
the agent here builds on the idea of the autonomous individual, as described above,
an individual who has the power to consent or to deny medical intervention and
is entitled to be fully informed about the need for and consequences of such medical
intervention. Though the medical professional is the expert both in terms of the
nature of the illness and the kind of intervention that best redresses that illness,
the law requires that this professional fully inform the patient regarding her
knowledge and elicit the consent of the patient for any intervention. In this sense,
the patient is not just a medical entity but also a legal entity, not only someone
suffering an illness but also a bearer of rights. While being informed and giving
consent can often take the form of mechanically signing a piece of paper (after
being informed of the nature and consequences of the intervention), this simple
act, like putting a mark on a piece of paper (voting) presumes and rests on a vision
of a subject in relation to others and society.
As informed consent becomes a practice that is routinized, we recognize
how medical professionals and institutions often use it for the purposes of self-
protection, manipulation of the patient’s choice, and/or managing the patient in
ways that suit the doctors and their institutions. From the perspective of this
research, medical professionals often reveal themselves to be self-motivated and
self-interested agents, acting to protect themselves individually and institutionally,
in the context of legal requirements (Llovet 2012, 122–8). Such actions reveal
again the inevitable rationalization of the lifeworld that Weber (1946; 1964) and
Habermas (1984) highlight. Where for Habermas, the system’s needs for power
leads to the rationalization of lifeworld elements (in this case the relation between
doctors and patients), for Weber this rationalization is a fate of modern times that
must be borne, the fate that good initiatives (to give a place for patients’
participation in their own healthcare) have unintended consequences, in this case
fated to become routinized and institutionalized in ways that undermine the
intention of the change. The stories of patients who suffer at the hands of the very
health institutions dedicated to their care are myriad, giving rise, for example, to
the establishment of the Patients Association of Canada.
Human dignity in relation to life and death

However, this is not the only story to be told about the institutionalization of
informed consent. As Llovet (2012, 221) states,
the discourse of informed consent and its emphasis on the question of human
dignity becomes, in the context of the health care organization, a resource
76 Kieran Bonner
for medical professionals to speak with patients and their relatives about the
limits of medical care and the need to prepare for the end, often in the way
of making a decision to not pursue further treatments.
That is, the legal requirement of informed consent in the context of the healthcare
organization is not only rationalized to protect medicine as an institution but it is
also a resource for the medical profession to address the limits of medicine in
relation to its ability to keep an inert body alive. Thus human dignity, as against
keeping life going at all costs, is now understood to be a principle for decisions
about end-of-life care.
The ideal of the dignity of self-determination that undergirds the doctrine of

informed consent is transformed by the medical profession into a tool to make
reference to the passage between life and death and to help patients arm
themselves for the event.
(Llovet 2012, 221)
Alongside seeing the legal requirement for informed consent increasing the
potential for rationalizing more and more of the lifeworld, therefore, we note here
another development. The medical profession has moved to see death as that which
needs to be integrated into the discourse on care for the person and not as an enemy
of medical intervention inspiring doctors to display heroic efforts to stave off what
is inevitable. Llovet’s analysis of cases (where doctors oppose the wishes of the
family) is an example of the way the medical profession integrates the spirit or
principle of human dignity behind the regulation for informed consent.
As a principle, human dignity transcends the life and death distinction. One can
live and die with or without dignity; keeping a somatic body alive is no longer
the sole focus of medical discourse. Modern medical technology has the capacity
to maintain “the vegetative functions of the organism” with the consequence of
turning “the person into a link in the chain of causal processes” (Gadamer 1996,
62). The idea of human dignity that grounds the practice of informed consent, on
the other hand, sustains a vision of an agent as self-determining in relation to self,
others, and society. The notion of care here is transformed from a negative
conception (keeping a person alive) to a positive conception (well-being), resting
on a notion of dignity that collects life with death. In this sense, dignity can be
understood as an example of one of the principles with the capacity to overcome
the contradiction between life and death (Bonner 2011).
Canada, informed consent, and the right to refuse treatment

In Canada it has recently been accepted by the Supreme Court and it has, in turn,
been incorporated into the Canadian Medical Association governing policies that
informed consent includes the right to refuse even life-saving treatments.1 As the
CMA puts it in their official policies: “A competent person has the right to refuse,
or withdraw consent to, any clinically indicated treatment, including life-saving
or life-sustaining treatment” (Canadian Medical Association 1995, 2; quoted in
Llovet 2012, 132). As Llovet notes, the decisive qualification on the idea of
personhood is competence. And yet, the very capacity of medicine and medical
technology to keep a body alive no longer means that a person is automatically
competent.
It is precisely these enormous technological advances, with their goal of the

artificial preservation of life, which reveals the absolute limit of what we can
achieve. The prolongation of life finally becomes a prolongation of death and
a fading away of the experience of the self.
(Gadamer 1996, 62)
The modern ability to prolong life leads to the patient’s loss of the experience of
the self, making the principle of informed consent problematic. If the patient is
incompetent, or in Gadamer’s terms has lost the self, how is the idea of human
dignity as embodied in the practice of informed consent to be preserved?
In the absence of a “living will,” in North America the solution to this prob-
lem has been to designate a substitute decision maker. As Llovet (2012, 135)
describes it:
The need to respect the autonomy of the incompetent patient is affirmed in

the Ontario Health Care Consent Act of 1996 in the figure of the “substitute
decision maker.” These are persons designated to make decisions for the
incompetent patient, decisions that the physician is obligated to follow. The
law, which lays down the rules for appointing the substitute decision maker,
tends to reserve this role for relatives of the patient.
Relatives, particularly immediate family like spouses, parents, children, and

siblings are seen by the law as being in the best position to speak to and for the
patient’s self-determining wishes and values. Unlike Socrates in the Phaedo, where
his wife and grown children (who are distraught by the fact of his impending, if
avoidable, death) are dismissed so that he can discuss his vision of the subject in
relation to self, others, and society with his friends and students, in contemporary
North America immediate relatives are considered to be the best spokespeople
for the vision and self of the patient.
Of course, this is not an easy responsibility.
From the legal [perspective], the choice of life or death ultimately rests with
the patient, as long as they are of sound mind. And yet, it is the family who
are left to live with the consequences. “Some families don’t even want the
patient to know; others do,” Seagrove [one of the founders of Toronto
General’s palliative unit] said. Conversely, some patients want to know
nothing of their own prognosis but ask palliative to meet with the family and
tell them everything including a tick-tock timeline.
(Coyne 2014, A2)
78 Kieran Bonner
If, as Dr. Downer, another of this palliative care team, says “we are a death denying
society” (A2), terminally ill patients, their families, and the medical profession
must now face what the culture denies. Conflicts also emerge between doctors
and families as to the appropriateness of and need for continuing medical
intervention. There are times when the doctor sees that further medical intervention
is futile while the family of the patient (the substitute decision makers) desire
continued medical intervention. If the patient were deemed to be legally competent,
this would not be an issue. As stated by law, if the patient chose to continue medical
intervention, though informed that such intervention has a high probability of being
futile, such intervention would have to continue despite the assessment of the
doctor. Under the principle of self-determination that is the central element of
human dignity, the competent patient can choose to withhold consent to an
intervention that is promising or choose to insist on an intervention that to all intents
and purposes is futile. The patients’ relation to their vision of themselves as subjects,
a vision that includes a self-understanding of the meaning of life and death, means
that this decision is theirs to make. In cases where the doctor is seen as more than
a technician and the patient is seen as more than a bearer of a fatal illness, “an
individual partnership between the doctor and patient” (Gadamer 1996, 172) can
come into play, implying a conversation on the utility and consequences of
medical intervention in relation to self, others, and society.
Two days after her husband’s death, Irene called Reynolds [another palliative
team member] to thank her and to apologize for rejecting the palliative team
early on. She told the nurse that because of their work, her husband was able
to tell her things he had been afraid to say, and so was she. “There were no
more questions left.”
(Coyne 2014, A2)
Of course, the law does not mandate such a conversation, nor could it. If it
happens it is a feature of the resilience of the lifeworld and the “intersubjective
meanings, which constitute or ground the institutions and practices in society”
(Taylor 1977, 121).
In the case of the patient of unsound mind, however, it is the family that is
legally deemed to be competent to make the decision. On occasion, conflicts do
arise between the wishes of the substitute decision makers and the medical
professionals as to the benefit or futility of further medical intervention. While
the law gives the family the right to insist on continued medical intervention,
doctors, in Ontario for example, can continue to appeal the family decision to the
Consent and Capacity Board (CCB), which gives the final adjudication. That is,
the law anticipates that some decision makers will, for whatever reason,
fail to do “what the patient would have wanted.” It is because of this that the
Health Care Consent Act establishes that all decisions made by proxies are
subject to challenge, review and correction by the Consent and Capacity Board.
This is an independent provincial tribunal composed of lawyers, psychiatrists
and members of the public with a mandate to protect the “dignity and
autonomy of the individual” and his or her right to choose “whether to take
treatment” (Consent and Capacity Board 2010, 2).
The law relies on the physician to guard and protect the autonomy of the
patient, as doctors are given powers to police the actions of substitute decision
makers and to challenge those decisions that are thought to violate the
patient’s will.
(Llovet 2012, 140–1)
As an example, let’s look at the following case from the Consent and Capacity
Board adjudication in 2007:
[The physicians] said E.J.G. was suffering even if he could not feel pain or
discomfort . . . [The doctor] distinguished between pain, which E.J.G. could
not feel, and suffering, which she described as something E.J.G. might endure
in an existential sense in response to invasive but futile procedures . . . [As
the Consent and Capacity Board goes on to say] in determining E.J.G.’s well
being, we were entitled to consider the constant invasions and humiliations
to which his inert body was subject. At some point those factors overrode the
presumption in favor of continuing life.
(Consent and Capacity Board 2007, 11, 22;
Here the patient’s doctor, in opposing the wishes of the substitute decision makers,
makes the case for including an existential dimension in the assessment of well-
being: despite not feeling pain, there was the “humiliation” to E.J.G. when his
inert body was subject to “invasive but futile procedures.” Here we can see that
the doctor in this case recommends that the wishes of the substitute decision makers
be overridden on the grounds of avoiding “humiliation” to EJG’s inert body, that
such a humiliation was an offence to his dignity. The Board, in agreeing with the
doctor’s assessment, in effect says that the patient’s dignity in this case favors not
intervening to keep him alive.
The notion of well-being as against vegetative life now explicitly includes the
idea of human dignity and it is interesting to see instances of the medical
profession, and in this case the Consent and Capacity Board, collect life and death
around this principle. Life and death no longer represent an either/or but rather
are collected by notions of “dignity,” “whole person,” and so on, principles, as
the work of both Blum and McHugh (1984) and of Arendt (1961) would describe
them (Bonner 2011).
In the Consent and Capacity cases documented by Llovet, the medical
profession implicitly acknowledges an ethical dimension to care, that care involves
more than the somatic. It may be that modern technological developments, with
its great power to keep a body artificially alive, has created an ethical collision
(Blum 2003) that forced the medical profession to come to terms not just with
what they are treating but who they are treating, not just EJG’s body but EJG the
80 Kieran Bonner
person. The particularity of patients as persons, and the doctor’s need for
competent patients to describe how they feel, is the necessary taken for granted
ground of the doctor–patient relation, a taken-for-granted that can be realized,
exploited, or rationalized. And while it may be argued, as it has by Gadamer (1996),
that the dignity of a person is phenomenologically inherent to the collaborative
doctor–patient relationship, it is interesting that the healthcare system (to use a
term from Habermas) seeks to take this orientation on board.
Human dignity and the citizen as a bearer of rights

This brings me to one of the limitations of Llovet’s otherwise measured and
reasonable analysis. All of the cases covered in his paper are responses to conflict
(whether between the doctor and the patient in the case of the emergence of the
demand for informed consent, or between the doctor and the next of kin in terms
of spokespersons for the rights of the patient). That is, his paper is peopled with
various actors, whether patients, families of patients, doctors, courts, and Boards
of Consent and Capacity. The courts and the Consent and Capacity Board (CCB)
become players when conflicts arise between the substitute decision makers of
patients and patients’ medical caregivers. The CCB does not become a player
in the drama if the patient’s doctor and family are able to come to an agreement,
as shown with the Reynolds example above. The research material (data) Llovet
uses to analyze and make his contributions to knowledge is data that emerges from
court or board hearings; this material speaks to a situation where particular agents
in society (doctors, patients, and the patient’s family) are in conflict with each
other. It is precisely for these reasons that courts and the CCB are needed so that
conflict can be resolved within the law.
The resort to the law speaks not only to families, doctors, patients, appellants,
and defendants but also to the idea of the rights of citizens. As Llovet’s research
material emerges from such conflicts, it cannot be said to be representative, not
in the sense of survey methodology but in the sense of the community that the
intersubjective meanings above constitute, a social and political community, as it
were. In other words, the community within which the intersubjective meanings,
resting on a very particular vision of a subject in relation to self, others, and society,
is sustained in one way through ordinary and collaborative doctor/substitute
decision maker relations and is sustained in another way when conflicts have to
be resolved in a legal fashion. These particular ways shape the nature of research
material, and Llovet’s in particular. Research material that emerges out of a
collaborative relation between doctors and substitute decision makers is different
than research material that emerges out of conflict between such actors. To be
able to examine and draw conclusions from such research material one must also
seek to understand the mediating ground that shaped the nature of this research
material. That mediating ground is the resort to the CCB in the case of a conflict,
and therefore the forum the law creates to resolve conflicts. Unlike the health
system, the concern of the law is with the right of citizens.
For Arendt (1994), the citizen is first and foremost a bearer of rights. What Arendt
points to here is the idea of a political community, where members need to
recognize the claims each makes on the other. The protection of the patient by
law, through informed consent, says that citizenship concerns precede and are
prioritized over health concerns. But what do citizenship concerns mean? The
patient, as a citizen, has rights. These rights are developed within the context of
the patient–doctor relation just as the rights of someone charged with a criminal
act are played out in the context of law and crime. In the liberal democratic society
of the cases above, laws are formulated in terms of the autonomy of the person.
As Llovet (2012, 138) describes it,
the law gives absolute precedence to patient self-determination, as substitute

decision makers are required to follow the wishes that the patient declared
to have when still competent. That is, the substitute decision maker is required
to “follow orders” and simply execute the will of the patient.
There are two ways that we can understand this resort to the law and what the
law rests on. We can see them as pointing to a liberal or neoliberal individual
autonomy, a notion of community that reaffirms social contract theory, a theory
that imagines rational independent individuals coming together to form community
on the basis of enlightened self-interest, as described by Taylor above. In this case,
the wishes, the values, and the beliefs of individuals are their individual prefer-
ences. Under this idea and as part of a liberal democratic system, all these
preferences are fundamentally equal before the law. The patient, as a citizen, is
free to consent to medical intervention and, under the requirement for informed
consent, needs to be informed in order to be able to make an informed choice.
Here we have a notion of democratic citizenship, which endows the citizen with
rights that limit the rule of expertise in medical decisions. As Llovet (2012, 125)
notes,
many practitioners remain suspicious of the notion of patient autonomy.

Goldberger et al. (1997), for example, propose that full risk disclosure, a
requirement of informed consent, is bad for patients because it raises their
anxiety levels, which may in turn have adverse medical consequences.
As highlighted throughout Llovet’s paper, the law asserts patient autonomy,

unless such autonomy is demonstrably dangerous to the collective, and there are
no collective ways of moderating these preferences as that would contradict
patient autonomy. In many ways, his work points out the tension and difficulties
that such a conception of the agent (whether the agent is the substitute decision
maker, the legal system, the incapable person, the medical professional, etc.)
encounters when faced with ordinary practical dilemmas that have to be resolved
for all practical purposes. The discourse of human dignity that the initiative for
informed consent introduced, an initiative resisted by the medical community
as a limitation on the authority of their expertise, is now used by the medical
82 Kieran Bonner
profession to limit the wishes of the immediate family. While Llovet’s work is
measured in its analysis, it implies that this particular drama is of a Hobbesian
type of struggle for power between patients, doctors, families, and the law. The
various developments, like the requirement for informed consent, are then seen
as instruments and tools that help one agent over another to achieve power:
My analysis concluded that by relying on the rhetoric of individual self-deter-

mination, medical professionals are able to make the practice of anticipatory
mourning normative, which gives them a powerful tool to effectively control
and disarm dissent when relatives of the (unconscious) patient insist on the
continuation of life-saving and life-sustaining treatments.
(Llovet 2012, 222)
While this is certainly a strong argument, it does have implications that need to
be addressed. The Hobbesian struggle implies that the issue is a power struggle
and that those with the most powerful instruments or tools win. Of course,
empirically speaking this tends to be true. However, this formulation marginalizes
the ethical issues involved and it does so by contradicting the intersubjective
understandings that the formulation rests on. Given that Llovet shows the conflicts,
problems, and struggles that the idea of the autonomous individual practically
causes, how does it happen that his work reproduces the problem he identifies?
Citizenship and intersubjective understandings

To see patient autonomy in isolation from the law that so constitutes the patient
is to treat as a resource the very liberal democratic theory that his analysis
legitimately calls into question. As Taylor notes above, such an approach takes
for granted, or more accurately treats as an untopicalized resource, the inter-
subjective meanings that its claims rest on. The vision of subjects in their relation
to self, others, and the world is assumed and the tensions and contradictions that
such a vision reproduces are both relied on and denied; the rational autonomous
“I” is treated as if it were original or first, while simultaneously it both rests on
and denies the “we” that such an intersubjective understanding needs. In this sense
the truth claims that the paper establishes are one-sided. It is not that they are
untrue or false but unduly narrow. If taken to be the “whole truth,” a distorted
picture of the reality of the lifeworld emerges, a distorted picture that sees the
need to struggle for power rather than the need to understand and theorize as first
(Bonner 1998, 58–82).
While part of the truth of the situation is certainly the power play between the
various players, to see that as the whole distorts the relation to the lifeworld that
such a view contradicts and rests on. When Llovet says “the law gives absolute
precedence to patient self-determination” (2012, 139) vis-à vis substitute decision
makers, this is a law that rests on intersubjective understandings that are reflected,
modified, confirmed, and/or changed as the community articulates changes. And
while legally speaking it is true that “any decision made on behalf of the patient
is the patient’s will expressed by a third party” and that therefore “the substitute
decision maker is in this context nothing less (and nothing more) than the one
who conveys to the medical team the unadulterated will of the patient” (Llovet
2012, 139–40), to interpret these solely in the context of the autonomy of the patient
and/or citizen, and so, to treat these decisions as first or original leaves unarticu-
lated the intersubjective meanings such an interpretation requires. More
importantly, it leaves concealed the points at which the vision of the subjects and
their relation to others and the world can be made subject to discourse.
In the first case, the autonomous individual or capable person can express his
wishes and they become the basis for the decision. If they are clearly expressed
(Llovet 2012, 138) the duty of the doctors, substitute decision makers, and the
courts is to carry them out. That is, all other agents are mere executors for the
person’s wishes. As the paper articulates very well, such a view raises many
dilemmas and situations for dispute in terms of who is the guardian of the
incapable patient’s wishes, who has to moderate when faced with conflict (the
law and the CCB), and so on. Access to the patients’ wishes is an irremediable
Grey Zone that involves conflict and mediation and resolution.
When intersubjective understandings become a focus of the research and
analysis, however, the truth of the horizon of the situation widens. Llovet has
established that there are many parties to the decision to be allowed to die, the
patient, the patient’s family, the medical profession, and ultimately the law.
However, the law takes precedence, as all the other parties have to act within the
law. The law has processes for making decisions that are different than medical
science knowledge or the personal knowledge that comes from being an intimate
or relative of the patient. The law allows for dispute to emerge between the parties
and has processes in place for the dispute to be resolved. Laws point to the
boundaries of the intersubjective community within which political thinking
operates and that political thinking reinforces. The role of the law in these end-
of-life conflicts is when the justice of the parties in relation to the community
becomes an issue. If so, we can read the judgments delivered by the CCB not
only as adjudications in the struggle between patients and doctors, but also as
attempts to think through the problems that end-of-life issues raise, then we can
read them also as a nascent appeal to political thinking with regard to the “common
reference world.”
Political thought is representative. I form an opinion by considering a given

issue from different viewpoints, by making present to my mind the standpoints
of those who are absent . . . being and thinking in my own identity where I
am not. The more people’s standpoints I have present in my mind while I am
pondering a given issue, and the better I can imagine how I would think and
feel if I were in their place, the stronger will be my capacity for representative
thinking, and the more valid my final conclusions, my opinions.
(Arendt 1961, 241)
84 Kieran Bonner
In this quotation, Arendt is explicitly drawing on Kant’s enlarged mentality, a
concept he developed to account for the faculty of taste. As is well established,
Arendt used Kant’s concepts to develop the particularity of political thinking
(1958), in distinction from what she saw as philosophical thinking (1978; 2003).
The adjudications of the CCB are judgments that can be treated as attempts at
political thinking, that is, as attempts to bring the doctor’s and substitute decision
maker’s “standpoints [to] mind while . . . pondering a given issue” (Arendt 1961,
241). As such, they can be read as trying to imagine what they “would think and
feel if [they] were in the place” of the family and doctors, and, insofar as they do
that, they can be treated as examples of “representative thinking” (Arendt 1961,
241). Arendt provided us with an example of what it means to think through a
judgment by offering a way to understand and justify the judgment of execution
against Eichmann (Arendt 1965, 277–9). She argued that while the decision of
the judges to find Eichmann guilty and to sentence him to death was right, the
justification they provided for their decision was not adequate to the “justice [that]
must be seen to be done” (Arendt 1965, 277). In the judgment she offered, she
made a case for Eichmann’s execution, that can now be formulated as resting
essentially on his evil, even if banal, vision of his agency and his relation “to others
and to society” (Taylor 1977, 118–19.With that precedent and to attempt such
thinking, let’s work through one of the judgments of the CCB.
Judgment, political thinking, and the parental maxim

“never give up”
that she was now in. Did Ms. P. believe that not to give up extended to per-
forming CPR on an unconscious person whose organs were shutting down?
(Consent and Capacity Board 2005, 10;

This judgment shows the place of the platitude “never give up” in parent–child
relations. Part of parenting involves encouraging perseverance and determination,
character traits that are necessary to engage the vicissitudes that life will inevitably
bring. It is the kind of encouragement given when one’s children lose a game, did
not get selected for a part in the school play they competed for, and so on. That
is, this advice is to encourage and embolden people who are tempted to despair
in the face of adverse circumstances. Encouraging perseverance and determination
is important for character building and these traits themselves are indications of
character. While in this case we have advice from one mother to her children,
such a platitude finds its intelligibility in the context of a discourse or inter-
subjective understanding on the importance of character to deal with adversity.
This discourse recognizes the temptation to resign, to give up, and to surrender
in the face of adverse circumstances and seeks to develop, in the one subject
to the cliché, the resources to overcome such a temptation. If it appears that
adverse circumstances invite resignation, the cliché points to the possibility that
such circumstances do not determine the response of the actor. Finding the cour-
age, the willpower, the faith and hope to go on when circumstances say otherwise,
is a possibility.
However, from the CCB perspective, this maxim begins to look absurd in the
context of “performing CPR on an unconscious person whose organs were shutting
down” (Consent and Capacity Board 2005, quoted in Llovet 2012, 148). If the
deep focus of the maxim is character, then the immediate family’s application of
the maxim in this case begins to look like denial of circumstances rather than
responding to them. Denial is inimical to this idea of character. Character means
facing and acknowledging adversity, not allowing it to determine one’s actions.
Denial is a refusal to acknowledge adversity and, as such, can be as determined
by circumstances as by resignation. The unstated intersubjective understanding
that the CCB is drawing on is the real distinction between denying and determining
to overcome adversity.
In this case, the adult children are about to lose their parent, a loss that will
create a hole in their life. The deep pain this loss will cause inevitably needs to
be suffered, borne, in Weber’s terms, as itself an instance of character. Denial
ends up undermining the point of the encouragement that the maxim “never give
up” seeks to create. One could by implication ask not only about the importance
of the maxim but also the way it was taught to the children that they would now
seek to use it against the principle the maxim seeks to serve. That is, the maxim
can be used to deny reality or to face reality and its use is particular.
Regardless of this mother’s use of the maxim, the adjudicator’s job is not to
now teach the family what the maxim means but to judge the conflict between
the doctor and the substitute decision makers. The CCB in effect is saying that
using the maxim to perform “CPR on an unconscious person whose organs were
shutting down” is to use it to deny reality and so draws the distinction between
dealing with adversity and loss and denying it. The validity of the CCB’s judgment
rests on how well it represents the intersubjective understanding of the community,
a judgment that privileges the patient as a citizen with rights. In this case the CCB
assesses the family’s wishes to continue with life-saving treatments and, while
sympathetic to the pain of the loss they will feel, rules against the action they
propose. However, political thinking means taking up for discussion the taken for
granted intersubjective understanding of a distinction between facing adversity
and denying adversity, a distinction that the maxim “never give up” both speaks
to and glosses.
The CCB adjudicates in the case of a conflict, in this case between families
of the patient and the doctors treating the patient. As such, the law provides a
forum, the CCB, for articulating the intersubjective understandings. As already
stated, the cases this forum hears are not representative in Arendt’s sense of the
term, in the sense that they cannot be said to be politically valid. Precisely because
86 Kieran Bonner
they are legal cases where conflict needs to be resolved, rather than cases that
work out the issue through dialogue between doctors and substitute decision
makers, they cannot be taken, without reservation, as key indications or signs of
the culture of a society. Insofar as a law provides boundaries to a community,
boundaries that rest on intersubjective understandings, then we can imagine many
situations where these intersubjective understandings are either agreed with and
taken for granted in many other doctor/substitute decision makers situations or
are articulated in that situation without requiring the forceful intervention of law.
In fact, “never give up” can now mean that the family needs to work out how
to go on with life and action in the world in the absence of a loved one. Because
the profound loss of a mother invites despair and nihilism, the resources to face
adversity and loss that the “never give up” maxim is oriented to in the first place
must now be called on. It is precisely in this kind of case where the teaching that
the maxim encourages faces its greatest test. Dignity in this sense seeks to
acknowledge the loss in seeking to not let it overwhelm, to resist its temptation
to be rendered silent, and in the case of Socrates (but also it should be said, Jesus),
to invent or tell a story that brings home to roost the unwelcome fact the loss that
death brings.
This articulation is the work of the kind of therapeutic pedagogy that Socrates
engaged with his friends, colleagues, and students in the Phaedo (Tarrant 2003).
Within a court system or even a medical system, such a therapeutic pedagogy risks
sounding paternalistic or even cavalier with regard to the pain the profound loss
creates in the family. But, as is argued here, it is central to the framing of the
analysis of such cases, if we are to keep political reality in perspective.
Our entry into the world is contingent and our leaving is inevitable. The
beginning is accidental and the ending unavoidable. Gadamer (1996, 23) reminds
us of how
the consciousness of the living still experiences a fearfulness before the

mystery of death, a shuddering before its sacredness, and there is still some-
thing uncanny in the silence which accompanies the final parting of someone
who was even just now among the living.
This fearful shuddering is what must be faced in the loss of a loved one, a
shuddering that the maxim never give up, as parting words, speak to the Greek
idea of the psyche “as something in which mutually antagonistic moments [life
and death] are entwined” (Gadamer 1996, 68).
Overall, and reflexively, as the CCB cases show, the will of the patient has to
be thought about and thought through in the context of the constitutive
intersubjective understandings that the community rests on. The will of the patient
or of the autonomous individual is an expression of wishes that themselves rest
on, and work over, constitutive understandings: they are not so much orders to
be executed as spurs to think through what it means to care for the patient in this
case as a person whose unique gesture, in Arendt’s words (Arendt 1992, 686 as
cited in Kohler and Saner 1992), are about to die with the person. And if it was
the case, as the CCB judgment notes, that the admonition was never discussed in
relation to the circumstances these adult children now find themselves in, such
discussion shows itself in the promise the analyses of such cases, in all of their
necessary partiality and incompleteness, offer. This is the promise of the ongoing,
never-ending conversation in the face of death, a continuing commitment by the
living not to give death the last word, a conversation, in this case collaboratively
initiated by Llovet’s analysis (McHugh et al. 1974).
Note
1 Canadian courts have recognized a common law right of patients to refuse consent
to medical treatment, or to demand that treatment, once commenced, be withdrawn
or discontinued (Ciarlariello v. Schacter, [1993] 2 S.C.R. 119). This right has been
specifically recognized to exist even if the withdrawal from or refusal of treatment
may result in death (Nancy B. v. Hôtel-Dieu de Québec (1992), 86 D.L.R. (4th)
385 (Que. S.C.); and Malette v. Shulman (1990), 72 O.R. (2d) 417 (C.A.)).
(Rodriguez v. British Columbia (Attorney General) 1993, 94;
quoted in Llovet 2012, 131–2)
References
Arendt, Hannah. 1958. The Human Condition. Chicago, IL: The University of Chicago
Press.
——. 1961. Between Past & Future: Eight Exercises in Political Thought. New York: Viking
Press.
——. 1965. Eichmann in Jerusalem: A Report on the Banality of Evil. Harmondsworth:
Penguin Books.
——. 1978. The Life of the Mind. New York: Harcourt Brace Jovanovich.
——. 1994. The Origins of Totalitarianism. New York: Harcourt Books.
——. 2003. Responsibility and Judgment, edited by Jerome Kohn. New York: Schocken
Books.
Bonner, Kieran. 1998. Power and Parenting: A Hermeneutic of The Human Condition.
London: MacMillan/New York: St. Martin’s Press.
——. 2011. “The Illness of Hope, the Cure of Truth and the Difference of Principle:
A Reflexive Analysis of Antigone’s and Meursault’s Confrontation with Death.” In
Spectacular Death: Interdisciplinary Perspectives on Mortality and (Un)representability,
edited by Tristanne Connolly, 43–56. Bristol: Intellect Press.
University Press.
Blum, Alan and Peter McHugh. 1984. Self-Reflection in the Arts and Sciences. Atlantic
Highlands, NJ: Humanities Press.
Coyne, Todd. 2014. “Toronto General Hospital Wants to Know: How Do You Want to
Die?” The Toronto Star, October 12, A2.
Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. New York:
Pantheon Books.
Gadamer, H.G. 1975. Truth and Method. London: Sheed & Ward.
——. 1996. The Enigma of Health: The Art of Healing in a Scientific Age, translated by
J. Gaiger and N. Walker. Stanford, CA: Stanford University Press.
88 Kieran Bonner
Garfinkel, Harold. 1967. Studies in Ethnomethodology. Cambridge: Polity Press.
Habermas, J. 1984. The Theory of Communicative Action: Volume 1, Reason and the
Rationalization of Society. Cambridge: Polity Press.
Kohler, Lotte and Hans Saner (Eds.). 1992. Hannah Arendt: Karl Jaspers’ Correspondence
1926–1929. Translated by Robert and Rita Kimber. New York: Harcourt Brace.
Llovet, Diego. 2012. Public Health, Medicine and the Ideal of Self-Governance: Conflicts
in the Modern Culture of Health and Well-Being. PhD dissertation. York: York
University.
McHugh, Peter, Stanley Raffel, Daniel Foss, and Alan Blum. 1974. On the Beginning of
Social Inquiry. London: Routledge & Kegan Paul.
Tarrant, Harold. 2003. The Last Days of Socrates: Euthyphro, Apology, Crito, Phaedo.
London: Penguin Books.
Taylor, Charles. 1977. “Interpretation and the Sciences of Man.” In Understanding and
Social Inquiry, edited by F. Dallmayr and C. McCarthy, 101–31. Notre Dame, IL: Notre
Dame University Press.
——. 1989. Sources of the Self. Cambridge, MA: Harvard University Press.
Weber, Max. 1946. “Science as a Vocation.” In From Max Weber: Essays in Sociology,
edited by C. Gerth and C.W. Mills, 129–56. New York: Oxford University Press.
——. 1964. The Theory of Social and Economic Organization. New York: Free Press.
Part II
Biomedicine, social services,
and reparation in the
postcolony
4 The time of a life
Ethics and cancer care in the case
of a young First Nations girl
Stuart J. Murray and Tad Lemieux
Is it possible that despite our inventions and progress, despite our culture, religion
and knowledge of the world, we have remained on the surface of life?
(Rilke 2009, 15)
Introduction
In May 2014, near Brantford, Ontario in the Mississauga-Ojibwe reserve of New
Credit First Nation, 11-year-old Makayla Sault, living with acute lymphoblastic
leukemia, reported that she witnessed the figure of Jesus Christ enter her room
accompanied by two angels, and, with hands outstretched, assure her that she was
healed of her illness. Makayla had, until this time, been undergoing a series of
chemotherapy treatments on the advice of her oncologists at the McMaster
Children’s Hospital in Hamilton, Ontario. In a videotaped letter, posted online on
May 13, 2014, Makayla read the following in the presence of her Band Council:
I know that what I have can kill me, but I don’t want to die in a hospital
. . . When Jesus came into my room, [he] told me not to be afraid. So if I
live, or if I die, I am not afraid . . . Jesus told me that I am healed, so it doesn’t
matter what anybody says. God, the Creator, has the final say over my life.
(Ojibwe Child Refuses Chemo 2014)
And with that, Makayla withdrew from what her physicians deemed to be
potentially lifesaving treatment in favor of pursuing Ongwehowe Onongwatri:yo,
Indigenous medical therapies administered by a traditional healer on the Six
Nations.
This chapter offers a critical analysis of the colliding ethical claims to life and
to care in the case of Makayla Sault within the frame of neoliberal biomedicine
and its temporalities of governance. Reading the widespread media coverage, we
suggest that Makayla’s refusal to consent to further biomedical therapies may
be read, among other things, as a counter-hegemonic threat to the neoliberal
management of bios, a threat that effectively destabilizes the biomedical deferral
of mortality, its discourse eliding the proximity of death to life, and the extent
of its authority over the time and treatment of human bodies. It is not simply
92 Stuart J. Murray and Tad Lemieux
that religious faith or cultural beliefs clash here with our widespread faith in
biomedicine, as it might first appear. Indeed, these discourses themselves are
imbricated in (neo)colonial projects at the intersection of religion, traditional
Aboriginal cultures, biomedicine, capital, law, and the politics of self-deter-
mination and sovereignty. After all, it was often in the name of Jesus that scores
of Aboriginal children were stolen from their families and institutionalized by
colonizing forces—the same Jesus invoked by Makayla in her refusal to submit
to biomedical institutions and treatments, which for some, surely share in that
colonial legacy.
Claims to and, frequently, on behalf of the body in question raise ethical
challenges for conventional notions of autonomy and informed consent, including
an individual’s “capacity” to refuse treatment, and the right to live, and to die, in
one’s own time and place. In what follows, we ourselves refuse to pass judgment
on the case of Makayla Sault, but, employing her case as a site of contestation,
consider rather the manner in which neoliberal biomedicine relies on the fiction
of an ethical “capacity” imagined to be the inalienable property of the reasonable
individual, and all that such “reasonability” entails, when faced with a diagnosis
of cancer. Our reading advances a provisional concept of ethical relationality that
does not seek recourse in increasingly neoliberal instantiations of autonomy,
reasonability, and consent; nor does it accept “cancer” as an objective reality
grasped best—or only—by biomedical rationality. As S. Lochlann Jain (2013, 4)
argues, cancer is “[a]nything but an objective thing, cancer can be better
understood as a set of relationships—economic, sentimental, medical, personal,
ethical, institutional, statistical.” We seek, then, to surface some of the ways that
Makayla’s refusal problematizes such relationships. Following Jain (2007), this
chapter gestures instead toward an elegiac politics of the living and a conception
of voice that, in speaking, refuses to fetishize (neo)liberal individualism and the
biomedical “untimeliness” of an individual’s death. It is within the context of an
elegiac ethics, we argue, that a robust understanding of care might emerge: one
that exceeds the suasion and “capacity” of ethical codes and guidelines to suggest
instead a care that must wrestle with claims that are ultimately indeterminable
and temporally ambiguous. Finally, in refusing to pass judgment on the case of
Makayla Sault, we stand in opposition to the many commentators who have passed
judgment on her, her family, and her community: rather, we question the conditions
and coordinates under which it is deemed permissible, if not morally requisite, to
speak for or on behalf of others whose voices we might prefer not to hear.
“Capacity” and consent: the backlash against Makayla’s

refusal
Makayla’s public refusal elicited a biopolitical backlash from her physicians and
the mainstream news media. What followed was a series of institutional threats
to force biomedical treatment on Makayla, echoed and rebounded by the subtle,
though sometimes quite explicit, scorn and derision of her refusal. A series of
interviews with Makayla and her family were held to determine the nature of the
The time of a life 93
refusal to consent to medical treatment, where it was claimed by the family that
one particular oncologist ridiculed the efficacy of Indigenous medicines by calling
them “100 percent ineffective,” stating that the support of such medicines should
result in prison sentences (Garlow 2014). The language of the Canadian Cancer
Society (2014)—which refuses to employ the term “treatment” for Indigenous
medicines, opting instead for “healing practices”—offers some hint of a context
for these comments in its assessment of traditional Indigenous medicines, stating:
“Although First Nations traditional healing practices have been valued by their
people for as long as oral tradition has been alive, there is virtually no research
on the effectiveness of these methods.” In this contest of refusals, Makayla’s refusal
is dismissed, both by physicians and across the mainstream media, as the
uninformed speech of primitive oral traditions or mere “values,” whereas the
Canadian Cancer Society is authorized by the literate knowledge of advanced
bioscience or “facts.” In an advanced neoliberal democracy, it is clear which
worldview will hold moral sway and intervene into lives, even if its positive
knowledge fails to encompass the moral value of that life as a life lived. This much
remains beyond its ken.
Makayla’s medical service providers at the McMaster Children’s Hospital
reported her case to the Brant Children’s Aid Society (CAS) to determine, using
the language of the Health Care Consent Act (Government of Canada 1996), her
“capacity” to consent to the refusal of continued chemotherapy treatments. On
May 20, 2014, Makayla was deemed capable by the CAS and no further legal
actions were taken against her and her family. Significantly, while the Health Care
Consent Act does not specify a minimum age of consent, in Canada there is legal
precedent for deeming a minor incapable to refuse medical treatment in the
context of a religious claim, as in the case of Jehovah’s Witnesses, for instance,
where minors have been required to undergo lifesaving blood transfusions.1 In
Makayla’s case, however, it appears that religious faith, while ostensibly the
grounds for Makayla’s videotaped refusal, was not so much at play when
authorities deemed her to be capable to make such a momentous decision. As a
refusal on religious grounds, her public statement is logically inconsistent and
contradictory. Moreover, both her mother and father are pastors in a Christian
evangelical church, which might reasonably have raised concerns about who exactly
is consenting in the refusal of treatment for this 11-year-old girl. We have no
documented record of the interviews that took place between the CAS and
Makayla and her family, nor do we have hard evidence of how the CAS arrived
at its decision. On the surface, however, while there might be compelling reasons
to reject Makayla’s “capacity” because she may have been unduly influenced by
her parents’ religious faith, denying her capacity on these grounds would have
obligated the state to intervene, and thus would have raised the further question
of whether the state has the right or duty to remove an Indigenous girl from her
territory, and to force treatment upon her. In this reading, Makayla’s Indigeneity
becomes the salient locus of capacity—or more precisely, the locus of the CAS’s
refusal to refuse to attribute capacity to Makayla. Rightly or wrongly, unwilling
to enter into a contest over the rights of Indigenous persons of any age, the CAS
must by default deem Makayla to be capable to refuse treatment, however
incapable—legally or ethically—she may be.
Some may argue that the CAS acted surreptitiously but in good faith to tacitly
honor a First Nation’s sovereign claim, but something else is taking place in this
ruling, something slightly less magnanimous. In effect, the CAS anxiously
produced and bestowed individual “capacity” when it made its ruling. Remaining
silent on the question of Indigeneity, this administrative–legal body, operating on
the authority of the state, refuses to give voice to an Indigenous claim, while
nonetheless assuming the sovereign power to grant or withhold the very “capacity”
by which any such claim could be recognized in the first place: You have the right
to make this claim, so to speak, as long as we first bestow upon you this right,
and accord you this standing in the eyes of the law. In other words, your claim is
a claim always and only by virtue of our prior act of recognition, and remains
ours to bestow or withhold. You are beholden to us.
Indeed, if such a power lies with the state, then the very notion of individual
“capacity,” in its legal valences, relies on the productive fiction of an autonomous,
reasonable, (neo)liberal subject—a fiction that remains the sole privilege and
purview of state discourse and power. This is true no matter the age of the claimant,
but becomes all the more conspicuous in the case of an 11-year-old. If the grounds
for “capacity” in Makayla’s case are weak, as they arguably are, it might
nevertheless have proved a safer bet for the CAS to deem Makayla herself to be
autonomous, reasonable, and free to decide, rather than become embroiled in a
contest of community will and Indigenous sovereignty. That is, although
Makayla’s Indigeneity seems to have been the deciding factor in her case,
(neo)liberal state institutions would undermine their own authority, and the
mechanisms of that authority, if they were to admit that “capacity” belongs also—
or perhaps even primordially—to a people on the basis of shared tradition, culture,
or ancestral heritage. If the state embarked on such a debate, it would expose the
fictional nature of individual “capacity,” along with the fragile authority—and
arbitrary violence—by which the state itself produces and polices individuality
as an instrument of governance, if not subjugation.
The tension between the claims here becomes all the more palpable if we
consider in stark terms the consequences of acknowledging that peoples—and not
individuals—might be the bearers of certain rights or “capacities,” particularly as
these continue to be conceived and fashioned on the basis of Enlightenment Western
individualism and law. The law is hamstrung, in a sense, by its own language, its
own conceptual authority, and on its own founding principles, which are meant
to apply universally, and yet come up against cases like Makayla’s where much
more than the life of an individual hangs in the balance. The United Nations
Declaration on the Rights of Indigenous Peoples, to which Canada is a signatory,
complicates the medico-legal paradigm of ethical individualism in provocative
ways, and yet this document was rarely invoked in the public discussion that
followed Makayla’s refusal. How is the law to incorporate a UN Declaration
(2008, Article 24.1), which states that Indigenous persons cannot be forcibly
removed from their traditional territory, or the claim that they “have the right to
their traditional medicines and to maintain their health practices, including the
conservation of their vital medicinal plants, animals and minerals”? Indeed, the
Declaration states further that: “Indigenous individuals also have the right to access,
without any discrimination, to [sic] all social and health services” (2008, Article
24.1). This suggests that whole peoples can be the bearers of rights, and are free
to invoke a sort of capacity that does not refer to individuals, but rather
problematizes this legal category as belonging to a worldview that is not and never
really was universal, timeless, and True.
What the UN Declaration might mean in Canadian legal and ethical practice
is far from clear (it is certainly not legally binding), though it was clear that
trespassing upon First Nation territory to forcibly remove a young girl from her
family would have been met with resistance and declarations of war from First
Nations everywhere.2 In an opinion column written for the Hamilton Spectator
on May 31, 2014, Juliet Guichon, a legal scholar, along with three pediatricians
of her cohort in the Faculty of Medicine at the University of Calgary, contend
that “[a] young Canadian girl is being denied a good chance for a cancer cure
because she is aboriginal” (Guichon et al. 2014). Arguing that Makayla is too young
to consent, Guichon and her colleagues, in their characterization of the CAS’s
decision, describe the uneasy tension between the community that Makayla
belongs to, and the individual—here a “young Canadian,” a citizen—who is
managed, statistically described, ordered, and constituted as a subject of neoliberal
biomedicine and law. In an argument that is either blind or indifferent to Canada’s
colonial history, they claim that it is tantamount to discrimination for our medico-
legal institutions to fail to provide (forced) chemotherapy treatments for Makayla,
and that this discrimination is an injustice, it would seem, that trumps the rights
of Indigenous persons to their traditional medicines. Indigenous persons’ right to
“access . . . all social and health services,” “without any discrimination,” as the
UN Declaration puts it, is here rendered as their obligation, a responsibility rather
than a right. That is, it appears for the authors that the community should be the
locus of consent and capacity, as a proxy for the individual who is incapable of
consent, and yet Guichon and her colleagues undermine that capacity—the
community only possesses such capacity, it would seem, when it makes a decision
that is concordant with the authors’ and with the medico-legal establishment they
represent. In other words, in their reading the community has refused to exercise
capacity, and, in its decision, has abrogated its right to make a decision, or has
proven itself preternaturally incapable of doing so when it too refuses to force
Makayla into treatment.
Guichon and her colleagues choose not to invoke the UN Declaration, turning
instead to the authority of the Supreme Court of Canada, citing legal precedence
for the state’s medical intervention in cases they deem analogous.3 They appear
to take issue with Aboriginal exceptionalism. Yet there is no mention of the many
other historical “interventions,” many of them exceptionally bloody, which might,
for a First Nation community, trouble the Court’s authority as belonging to a
colonial tradition—indeed, a tradition in which Makayla is co-opted as a “Canadian
girl” in need of biomedical salvation and legal sanctions. Nowhere do they ask:
What is the “capacity” of the law and its institutions in this case? Whence its
capacity to judge, and to bind us to that judgment? And is this capacity not founded
in the historical violence that consented to—when it did not altogether sanction—
the abduction of Aboriginal children, and sometimes their rape, their destitution,
before the law, in the name of Jesus and in the name of the state? If this is the
history of its authority, the question of capacity is evacuated of meaningful
content, and we are left with the enduring question of the responsibility for life
and its relation to the ugly, forgotten, disavowed, history of law.
There is, of course, a “logic” to the trite claim that two wrongs do not make a
right—that Makayla is being martyred, wrongly, on the altar of her community’s
principles and politics, and that by denying her chemotherapy treatments we—
however this “we” is constituted—add to, rather than redress, historical injustice.
But this is to refuse Makayla’s claim outright, to refuse to hear it on its own terms,
including the sovereign claim that is voiced in her name, and the care that is given
through the community that loves and embraces her. Such a refusal does not redress
historical wrongs, but reduplicates them. Could there be something positive in
Makayla’s claim, something we might recognize, however vaguely, in the desire
to live—and to die—in one’s own way? Could death be something other than the
mere failure to continue to live, by whatever means? The law is decidedly anxious
here, which is one reason why it might have reinforced Makayla’s individual
capacity, bestowing and then by sleight of hand “recognizing” this capacity, rather
than acknowledge the sovereign claim of her Nation. In her own way, Makayla
invokes the absolute power of law when she declares, “God, the Creator, has the
final say over my life” (Garlow 2014). This declaration stands in contradiction to
the manner in which the law has arrogated to itself such theological power in an
ostensibly secular context. The law remains unwilling to cede on the question of
sovereignty over the lives of its subjects, which is its ultimate power, and a mythic
violence that underwrites its authority across the spectrum of social life.
Biomedicine, biopolitics, and sovereign claims

Whether Makayla’s community has the capacity to refuse treatment on her behalf,
abrogates its capacity, or refuses outright the terms of “capacity” and the authority
by which it is bestowed or normatively produced, performed, and policed, her
community nevertheless makes a sovereign claim in her name. And while the law
might bestow upon Makayla the individual capacity to refuse treatment, we
suggest that it does so grudgingly, because it cannot tolerate a sovereign claim
that would compete with, and threaten to undermine, its own claims to sovereign
authority, universality, and force of law. The sovereign victory of the First Nation
is here a silent one, operating spectrally, behind the face of a little girl whose
contradictory story—she does not want to die in the hospital, yet Jesus said she
is already healed, yet she will turn to Indigenous medicines—is apparently good
enough for the law, good enough for the ruse of consensual personhood. Politico-
legal battles converge at the site of Makayla’s body, and the wider dynamics
become reductively biomedicalized in the popular imaginary: stated simply, in
reductive terms her community has failed her by failing to act in her best medical
interests. And so her community has, we are led to believe, failed to exercise its
capacity—its responsibility—to enact the rule and authority of biomedicine to make
Makayla live, or to give her the best chance at life.
The irony is that while the CAS deemed Makayla to be capable of refusal, within
a neoliberal biomedico-legal context her refusal of treatment is practically illegible,
signaling a de facto failure of capacity—for no “capable” person, on its terms,
would refuse life or the best chance at life. Within a biomedical context, that is,
such a refusal is seen as irrational, issuing from someone who demonstrably cannot
make the right choice, and who abrogates the right to belong, recognizably, and
to make a claim that could be honored. The sovereign claim of the First Nation,
then, is an affront to the consuming logics of biomedicine, which in the wider
culture has been naturalized and normalized as commonsense truth. In Foucault’s
(2003a, 202) terms, we characterize biomedicine as one aspect of biopolitical state
power: biopolitics is “the endeavor, begun in the eighteenth century, to rationalize
the problems presented to governmental practice by the phenomena characteristic
of a group of living human beings constituted as a population: health, sanitation,
birthrate, longevity, race.” Within biopolitics, medicine and law become
rationalizing tools for the political organization, regulation, and management of
life itself. Today, moreover, we must understand biopolitics in a neoliberal vein,
with global proportions and diverse modalities, which is why cancer is not an object
but more than ever a complex set of relations. Foucault’s (2003b, 241) early
formulation of biopolitics as “the power to ‘make’ live and ‘let’ die” can no longer
be understood outside a vast and anonymous global network. It operates to “make
live” through technologies, mechanisms, efficiencies, forecasts, statistical
estimates, and risk management. It defines, regulates, counts, exposes, and encloses
human life on our planet, from Attawapiskat to Athens, from Davos to Darfur:
information economies, surveillance, Big Pharma, clean drinking water, famine,
HIV, cloning, genomics, and the cancer industry, to name just a few—a diffuse
“agency,” an ideology, that is unlocalized and operates through a plethora of loosely
connected sites: medical, juridical, social, political, cultural. Through burgeoning
governmental and biomedical technologies, the individual’s life now counts first
as a biological member of the state’s population, one biopolitical entity among
a mass of others, or, as Foucault (2003b, 246–7) sums up, “man-as-species.”
Effectively, the “individual” is displaced and becomes “regularized” by “a
technology in which bodies are replaced by general biological processes” (2003b,
249). Here, relations of power, and historical “interventions” of all kinds, are
invisible behind the biomedical “fact” of cancer. Is it possible, as Rilke suggests,
that we remain on the surface of life?
The cancer diagnosis constellates around the hegemonic narrative of empirical
truth and its realities, where the body is made to live, and meant to live, by whatever
means offered by the rules and technologies of biomedical logics. The often-
silenced counter-narratives of life and death, of health and healing, are and must
be staged within the scope of a past long left behind and disproven. In the near
borderless and faceless mechanisms of neoliberal biopolitics is produced, as a
necessary condition of its operation, a trajectory defining a particular form of life
and the various expressions, or symptoms, which determine its character as such.
Not all lives are liveable. Life itself becomes, both in context and content, the
concept defined for and through neoliberal biomedicine and the measure through
which bodies are made to live. Thus, the project of neoliberalism is, in part, the
task and management of pre-empting death and death’s presence-in-life, fore-
closing upon any “decision” that is not made in the name of “life itself.” Life,
as manufactured and managed, enforced across a population in part by the
common-sense principles coded into the (neo)liberal subject, operates as an object
of futurity whose meanings are constantly deferred by biomedical progress and
treatments. Cancer “becomes” the present, but biotechnology and its concurrent
narratives of life constantly work to project this idea of living into the future and
death into the underside of the abstract silence of the percentage point promising
that deferred, healthy, life. In this capacity, neoliberalism operates outside of the
present and out onto a belated future that becomes both predictively predetermined
and, yet, never operationally present. It relies on statistical paradigms and
predictive rationalities projected into the realm of potentiality, the determinacy
of the future, to dismiss or defend against the proximity of death in the narrative
of biomedical and biotechnological progress.
“Death,” within a biopolitical frame, must here be understood as distinct from
“letting die.” It is as if death does not come for those who are made to live: and
those we “let die” do so, as it were, of their own accord, due to their constitutive
biological failures, weaknesses, abrogations. These deaths, if we can acknowledge
them as deaths, are disavowed, dismissed as lives that did not quite count as life,
that did not make it, that were constitutively unlivable. Foucault suggests that in
the biopolitical State, “making live” and “letting die” are intimately connected,
each the obverse of the other—“letting die” as the consequence, and the condition,
of “making live,” much as we might callously see the deaths produced by pharma-
ceutical trials as the “collateral damage” or “negative externalities” of making live.
In a controversial lecture, Foucault (2003b, 254) argues that the power to “let die”
occurs primarily as an inscription of racism into the mechanisms of its power:
Racism makes it possible to establish a relationship between my life and the

death of the other that is not a military or warlike . . . but a biological type
relationship . . . [T]he death of the other, the death of the bad race [is]
something that will make life in general healthier: healthier and purer.
Faced with the refusal to “make” Makayla live, the medico-legal discourse—
naturalized and popularized in the mainstream press—props up the health of
neoliberal biopolitical ideology against the “impurities” of other ways of under-
standing life, health, medicine, and death. And in doing so, the ontology of bio-
medicine is posited as a purity of progressive thought, a causal line out from the
murkiness of the primitive past and into the future informed by an ever-increasing
biotechnological mastery over the terms of mortality. These kinds of impurities
are “allowed” to die—though always in the name of proliferating a certain form
of life—and with them, their own frames, their own narratives, their own concepts
of life, the times of their lives, all while subject to a reinforcing ridicule acting
the part of the ethical caregiver who has been refused the capacity to intervene,
refused the capacity to defend the purities of dominant ideologies by enforcing
the law of the land. The White Man’s burden. If Makayla dies from lack of
biomedical treatment, she will have been “allowed” to die, almost passively—she
will not have been killed, but will have died due to the constitutive failure of her
Indigenous community to exercise its moral capacity to choose life, and to make
her live, in the terms and through the technologies that are generously proffered.
This, in any case, is the implicit narrative.
Our argument, therefore, hopes to suspend for a moment, to break free from,
the constrictive onto-logic of neoliberal biopolitics, which has been normatively
inscribed today as common sense to the population it authorizes and proliferates.
Our purpose is to explore the ethical valences within Makayla’s refusal of the
biopolitical program, and to expose the reductive constraints that define ethical
care in the era of neoliberal biomedicine. To do so is once again to expose as well
the fragility of our own implicit narratives, borne by a faith in the efficacy and
causal circuitry of biomedicine, and the fractiousness of the perverse narratives
of biopolitical truth and biotechnological progress, here operating hand-in-hand
with the legal and administrative bodies that render judgments on capacity and
care. Makayla’s story presents one challenge to the trajectory and determination
of the neoliberal conceptualization of life, a gaunt choreography acted out at the
anxious limits of its reach, and the practiced course extended out and within the
interconnected web of private and public media used to shore up the rule of its
laws, logics, and narratives—our way of life.
Biomedicine and the “untimeliness” of death

Within the subtle bio-discourses advanced by neoliberal biopolitics, the time of
“life itself” is a managed, mandated, and moralizing story—a linear-sequential
time dictating the boundary of not-being and illness. The diagnosis of Makayla’s
illness, her prognosis, and the perceived statistical proximity of her death,
highlights the contours of this particularized time. Indeed, her refusal to accept
the numerical borders of livingness offered by chemotherapy, the abstract statistical
promise of belatedness, a continued and determined trajectory of living, animates
the call for biomedical intervention precisely because the presence of her illness
in the time of her life is understood as arriving too soon: her illness, but worse,
the present possibility of her death, demands to be recognized as untimely within
the scope of a particular narrative of life. The rhetorical posturing of the “untimely”
can be understood as concurrent with the ahistorical staging of modernity—the
un-timely—that in turn informs the linear-progress narrative of biomedicalization
and biotechnology toward its fervent campaign on history, truth, and death. But
the untimely is more “present” as a determination of a life lived in particular
codes of biomedical time. Here, moments of “the untimely” are punctuated by
those medical circumstances deemed premature, too spontaneous, a complication
of the present rather than a determination of possibility for the future, outside of
the determined arc of biomedical suitability, probability, or statistical predictability.
An ethics of care, we wish to suggest, manifests against, or despite, the biopolitical
paradigm that reflects this temporization of “life itself” defined according to the
statistical analysis of populations, risk surveillance, and the like, opening instead
toward the otherness of timeframes or life-times outside this framing.
In a letter to Makayla published in the Globe and Mail from Heather Cleland
(2014), a Toronto-based writer, Cleland recounts her own experience as a young
woman battling with cancer. Cleland affirms the virtues of chemotherapy and the
other drugs required to manage its symptoms, despite their negative effects on
her body or the discomfort of then-present experience, but instead as a proposition
of hindsight—a determination made from the future about her past self and now
to Makayla herself. Without chemotherapy, writes Cleland, “I wouldn’t have
finished school. I wouldn’t have spent nine whole months travelling around the
world. I wouldn’t have gotten my master’s degree . . . Chemotherapy was the only
reason I was able to do all those things” (Cleland 2014). Without chemotherapy,
Cleland suggests, Makayla will not live to go to university, to travel, to pursue
relationships, and to live a full life, as Cleland imagines it. We are to recognize
that Makayla’s death will be an untimely one: a young woman robbed of life “too
soon,” whose childish fears of bodily discomfort and, disturbingly, whose cultural
identity are keeping her from the future that Cleland writes from, here held out
as a possible, even probable, redemptive, time “to come”—uttered with all the
messianism that so often accompanies the salvific promises of biomedicine and
its speech acts. The biomedical determination of life’s futures, the will to “make
live,” is the condition of the untimeliness of death’s proximity in the present, and
a component of how long one should live, statistically, how and when illness should
manifest in the living body (ideally, never), and how biomedicine and sometimes
law should intervene into that proximity. But how can we know for certain the
contours of the untimely in its proximity to the case of Makayla Sault, and how
the design of this temporal aspect of biopolitical “life” represents itself on the
frontiers of an ontological struggle for meaning, when the specter of the residential
school, of the so-called “1960’s scoop,” of the decaying and forgotten infrastructure
of the reserve, directly faces the power actively sketching the meaning of “life
itself”? What sort of imaginable future announces itself from these ruins?
In the mainstream media frenzy that followed Makayla’s refusal, most of it
studiously silent on these colonial histories, we can read a string of binaries that
spring from these temporizing constitutions and that lend flesh to the meaning of
our biopolitical lives: primitive/modern, faith/knowledge, religion/science,
value/fact. Binaries such as these suggest a natural progression toward a life
lived within (and without) certain frames, until certain times, under supervised
conditions, and managed by entrepreneurial subjects who “freely” employ a cadre
of service providers and experts, medical and otherwise, for their own betterment,
vitality, self-actualization. Thus, one’s life-time is encoded in a broader story of
progress against the “violence” of death to the human bios, written into the linear-
processual narrative of biomedicine and employed as a framing of life itself inside
the litany of seductive tropes that characterize neoliberal biopolitics. These form
the privileged narratives of progress that delimit the possibilities for narratives
otherwise, those ways of knowing and interacting with the world that are
incompatible with the proliferating and performative regimes of evidence-based
practice, randomized controlled trials, techno-scientific advancements, and disease
and risk surveillance. What it means to live, to regard the time of one’s life, outside
of these frames becomes not only an untenable but an unthinkable proposition,
indeed, insufferable, intolerable, even cruel.
Conclusion: toward an elegiac time of life

And yet, this unthinkability becomes the time of one’s life in the all too real
proximity of death, where the linearity of time itself becomes insufferable,
intolerable, cruel:
When Mary found that her cancer had spread (had, indeed, been spreading),
her health status retroactively shifted. I am alive. No, you are . . . In one swift
motion, the cancer prognosis detonates time, which scatters like so many glass
shards.
(Jain 2013, 28)
This is the subjective temporality of cancer, of detonated and scattered time: past
tense, past perfect, present, and future enter into catachresis. While the cancer
prognosis detonates the time of one’s life, the treatment imposes its own time,
consoling us, perhaps, with the seemingly objective temporality of statistics, the
biomedical time of cancer, a series of moments in waiting rooms and on gurneys,
painful tests and biopsies, X-rays and CT scans, pathology reports, the scheduled
stings of the infusion needle, regimes of medication, hospital parking lots,
management of food and drink intake, the anxious days and weeks of waiting for
test results, chemo “daycare” clinics, wig fittings, visits from timid well-wishers,
etc., held together by the promise to defer the certainty of mortality, and the ways
these each and all affect the experience of other times and places, retrospectively
and prospectively. The purported certainty of statistical time—the predictive
rationality of neoliberalism, statistical biomedicine, and anatomopathology—does
not and cannot map onto the time of a life. “I am alive. No, you are . . .” Alive,
yes, living, a statement of fact that is countered at once: No, you are . . . Not quite
dead, not yet, but dying, surely, whatever that might mean. But the prognosis
radicalizes this death-in-life, bringing death into intimate proximity such that the
distinction between life and death, operating so commonly as binary terms—and
imbricated, too, with the binaries above—opens instead onto what Jain calls “living
in prognosis,” or prognostic time.
Here is a time catered to the future, the possibility, necessity, of being unto, of
continuing elsewhere in time, and by virtue of the ordered imagination of one
trajectory of livingness. But so too does this time fetishize a magnitude of the
past, demanding the reality of untimeliness by crashing the time of a life offered
as obvious and deserved, earned by biotechnological mastery and also dis-
figured by it. “No, you are . . .” Not supposed to die, yet . . . An unfocused barrier
between the adverbial and the conjunctive forms appears in this disintegrated
temporization of prognosis, where the “yet . . .” operates as both the deferral of
the present into the future and its negative horizon, manifest from the statistical
prediction of being in a future, what lies, or does not lie, just around the numbers,
and what it means in the present and for the past. A narrative of life not only
interrupted but deceived, and within which the prognosis promises a series of
renewed deceptions for the time of one’s life, one’s future, one’s death.
We may also perceive in this constrictive biomedical time, metaphorically, but
maybe also literally, a colonial time: of the colonizers and their order, the time
of the Metropole, of the processual and hegemonic regime of the clock and the
schedule and the assembly line, the time of law and the self-authorizing power of
its rule over subjects, the seemingly timeless mechanisms and developments of
modernity, deceptive yet seductive, and the averted cultural and social channels
of lives lived otherwise. In this, the body of a young girl is colonized in all senses,
not just by cancer but by the consumptive impositions of biomedicine, religion,
history, law, labor, social services, living within the onto-logics of their
timeframes, and their suggested, demanded, order of and over her life. The battle
for Makayla’s body is the battle to continuously define life inside of the complex
network of temporalities of governance as the “when” of a life, and the “who”
that is allowed to die to help these definitions flourish in time.
Risking the charge of naïveté, or worse, a neoprimitivist or romanticized
characterization of Aboriginal peoples, we have sought in Makayla’s story to honor
the time of her life as a refusal of the colonizing forces of biopolitical neoliberal
time. We have tried not to essentialize her identity or to judge how her decision
is voiced but to problematize the myriad responses to this refusal and to begin to
set them into wider social, historical, and political contexts. Within such a
presentation, Makayla’s story serves as the occasion for a claim about the manner
in which neoliberal biopolitics and the medico-legal and juridical complex seize
upon and mobilize a particular form of “life itself.” We adapt Jain’s notion of an
“elegiac politics” vis-à-vis cancer to propose an elegiac time as the time of one’s
life—a time that would refuse the temporizations of biomedicine, and open instead
onto, or perhaps more tellingly, from, the time of a life lived and spoken in the
intimate proximity of death. Traditionally, elegies are melancholic laments for the
dead, but they intrude into life, are sung or spoken by the living, and acknowledge
that our living work of mourning, our grief, is not done. They signal the continued
presence, the lives, of those we have loved and lost, who we harbor deep within
us, unwilling or unable to let go (see Freud 1957, 237–58). This continued
presence is in part political because it honors the dead in the lives of the living,
and affirms their importance for the polis, the community. Speaking of an elegiac
politics of cancer, Jain (2007, 89) writes:
An elegiac politics argues for pushing the private face of cancer cultures—
grief, anger, death, and loss into the public cultures of cancer—perhaps even
if only alongside of LiveStrong, or sipping, driving, and walking for the cure—
with the recognition of the enormous economic profits and gains that parallel
these losses.
In this respect, this chapter hopes to perform an elegiac politics, and to imagine
how this might be brought into the present, as a life lived, despite the counterfactual
futures of neoliberal biomedicine. It asks us to hold together, for a moment, claims
that are ultimately indeterminable and times that are temporally ambiguous, where
the categories of public and private enter into catachresis, and myriad intersecting
and conflicting claims are brought to light.
Where the elegy denotes the solemn but oftentimes equally joyful work of loss
and mourning and remembering, it does so by holding onto the ambivalence of
death-in-life, and narrating the time of a life, singing it, speaking it, celebrating
it. As Jain (2013, 223) puts it more recently in terms that are disarmingly folksy
yet insightful, “Cancer is both okay—it has to be okay, because ultimately, for
people who are dying, death has to be okay—and not okay.” Of course, under the
regime of neoliberal biomedicine, death is not “okay,” nor is it “okay” to refuse
potentially life-saving treatment. “It is not okay,” Jain writes,
that our languages are deceitful, that people with cancer are blamed or
shamed or promised that they will survive or asked to disguise themselves
. . . An elegiac politics . . . helps make this contradiction (okay, but not okay)
not only legible, but livable and dieable.
(2013, 223)
Jain seeks to “retrieve the individual” from his or her obliteration into statistics
and datasets and probabilities—“from the aggregated thinking that contemporary
cancer knowledge forces us into” (2013, 223)—to live a life elegiacally, we might
say, livable and dieable both for those patients who are compliant, but also for
those “bad” patients (see Steinberg 2017, this volume), individuals like Makayla,
who the regime renders unrecognizable, ultimately responsible, and in the final
moments, perhaps, unable to be grieved, mourned, elegized. Our gesture here, most
emphatically, is not to return to (neo)liberal conceptions of the autonomous or
consensual subject—the sovereign reign of the individual, nor is it to locate an
ethics in such medico-legal subjectivation. Rather, it suggests an elegiac ethics in
the fraught, ongoing narration of a life lived, in the often disharmonious rela-
tionality of elegiac voices, and to recognize that this is a song sung, as it were,
by the living and the dead. It is here, then, that (neo)liberal conceptions of
“sovereignty” clash with claims to popular sovereignty, where a claim might
emerge from and on behalf of a people—the temporality of which exceeds the
individual life—to give voice to others, which might well include our ancestors,
founding fathers or mothers.
The temporal value of an elegiac life is ambivalent. Ethically, it lacks the clarity
of focus that statistical prognosis purports to offer, and approaches hegemonic
temporalities on a day-to-day basis, in the act of loving and being loved, in the
experiential, intersubjective moments of living, in dreams and visions, within and
across a community or communities of reception, within and across clock-time.
The time of a life approaches these figures of technological time, colonial time,
biomedical time and tries to make sense of itself despite and in the face of them,
interceding, often failing, and yet celebrating the contours not offered by the fixed
relationality of bios management, the determined future of the statistic, the story
already told in numbers and charts and needles and yet unread and unfelt in the
body of one afflicted by an illness. “[T]ime in elegy wraps itself around the
subjective life and death of each of us who passes through the timeless grammar
and promise of cure, compensation, and the captured youth of a photograph” (Jain
2007, 90). That is, the time of an elegiac life unfolds in an expansive array of
lived moments, open to the relationality of other ways of living life, of approaching
and seeing death in oneself and others, of understanding and disclosing, and in
doing so encounters fixity with another kind of seeing to the abstract codes of
vitality, health, life, death, the present, and the future. Death is recollected in life
as possibility, a confirming proximity not simply denied or refused its purchase,
but instead granted as a contour of an open and relational narrative of life lived
with and alongside others, living and dead.
Is it possible that Makayla’s refusal begins to give voice to ineffable terms for
the time of a life, and points to the fractures in conceptualization for life defined
and written within our neoliberal biopolitical frames? Indeed, Makayla’s story begs
the question of a life lived, understood, and pursued otherwise, a narrative of history
that must lead into an indeterminate future, where the path of a life is not defined
by the aggressive silencing of death, nor the orderly and scheduled time of being.
What would an ethics of care look or sound like if it spoke in the presence of an
elegiac time of life? It is at best reductive for an ethics of care to imagine and to
treat life within the scope of biomedical, colonial, neoliberal, and technological
time alone—a life that does not act in other times, experience other times, or know
them, but trades relentlessly in counterfactuals. Rather, ethical care must wrestle
with the ineffable grammar of the time of a life, to try to elegize the times of living
asserted by and woven into the relationality of community, the shared declaration
and affirmation of times to live, to die, to know them otherwise, and as one’s own
to tell and be told.
Postscript
On January 19, 2015, Makayla Sault, at home in her bed, suffered a fatal stroke.
In the time that followed the decision by the Brant CAS to bestow capacity upon
Makayla to refuse continued chemotherapy treatments in May 2014, the attacks
and accusations against her and her community, the appeals for her life, shifted
to a similar case of another 11-year-old First Nations girl—only referred to as
J.J. due to a publication ban—with lymphoblastic leukemia who also decided to
refuse treatment. J.J., from Grand River First Nation, nearby to the New Credit
First Nation, was also being treated at the McMaster Children’s Hospital. As in
Makayla’s case, the hospital contacted the Brant Family and Children’s Services
(BFCS), which services Grand River Reserve, following J.J.’s refusal to continue
treatment in August 2014. And, as in Makayla’s case, BFCS found that J.J. was
not a child in need of protection. The McMaster Children’s Hospital then took
the extra step in the wake of that decision to bring the BFCS to court, hoping to
force them to remove J.J. from her family and to impose the chemotherapy
treatments that would save her life—at least, within the abstract futurity and almost-
certainty of the ninetieth percentile. In a November 2014 decision, Justice Gethin
Edward of the Ontario Court of the Justice, in a landmark ruling, not only found
that J.J. would not be removed from her family, but that the “decision to pursue
traditional medicine” is her “aboriginal right . . . a right [that] cannot be qualified
as a right only if it is proven to work by employing the Western medical
paradigm.”4
The implications of this ruling, and the story that it attends, far exceed the borders
of this postscript. What, then, might we hope to say here—with, or through,
Makayla’s death? Certainly, Makayla’s story—her decision, her life, her death—
are in constant proximity to Justice Edward’s ruling, J.J.’s decision, and in the
continued backlash from popular media, commentators, and many physicians.
When the news broke that Makayla had died, many such commentators responded
by suggesting that her death “needn’t have happened” (Mehta 2015), that she
“should not have” (Wiens 2015) or did not have to die. And while these, and other,
proclamations about her life in the popular media are certainly related to the so-
called untimeliness of her death, Makayla’s death is also illegible, unnecessary,
because it was preventable. We might ask: What makes a death preventable? What
constitutes a life lived in the service of the prevention of death? And if Makayla’s
death had instead occurred despite chemotherapy treatments, would her life have
been lived in the time of a life that prevents death?
Such a life, we might say, in the bio-discourses of neoliberal biopolitics, is
imagined, recognized, to always already exist in a world where death is
displaced—disavowed somewhere among the preventable, the percentage point,
the outlook. Posthumously, these biomedical discourses still attempt to prevent
Makayla’s death by presenting her life, statistically—imagining a preventative
living for Indigenous children in the shadow of a misguided court decision, the
life-time in the care of praevenire, the before-to-come. Biomedical treatment, then,
always prevents her death (even when it cannot) by preventing the presence of
death in discourse, in life, in care. It is therefore not surprising that news of
Makayla’s death has been used to shore up the Truth of biomedical care and its
narratives of progress against J.J., Justice Edward’s decision in November 2014,
and Indigenous rights gone “off the rails.” Makayla was “allowed” to die, so say
numerous commentators in the popular media, and “we” granted this allowance
by not fighting hard enough against families, peoples, who, in Kelly McParland’s
words (2014), will not step “temporarily outside their traditional heritage.” The
outside of this heritage is, naturally, the future: the future of medicine, the
“progress” of care, the imagined healthy life of the body of the cancer patient saved
by chemotherapy treatments. The burden, the “disgrace,” that this allowance
casts on those who would prevent Makayla’s death, retrospectively, to make her
live even in death, constitutes the necessary evidence for refusing the right of those
communities and peoples who, prospectively, will not properly take up the
responsibility of life.
Juliet Guichon (see Blackwell 2015), in conversation with the National Post,
argued that this case suggests “a different standard” of care for Aboriginal and
non-Aboriginal children. On the one hand, a dead child who “could have lived,”
and another 11-year-old Indigenous girl with the same fate; on the other hand,
citizens, Canadians, to recall the appeal Guichon and her colleagues made for
Makayla’s life in May 2014, who are safe along the path tread by the progress of
medical science and care. “The trail [Makayla] blazed,” wrote Guichon, was, rather,
only “to her own death” (Guichon et al. 2014). Of course, death here is again
imagined simply as Makayla’s inability to live by the terms recognized and
imposed by biomedical care, her incapacity as an individual to make the “right”
choice. In Guichon’s terms, it seems, the refusal to consent to biomedical treatment
is simply the long march to primordial and savage history, the oblivion of the past
and death. Such a trail has been blazed by others, forgotten others, left behind
and propped up as examples in the biopolitical imaginary. The future here has
already been decided, and in Guichon’s terms, Makayla’s march was backwards,
not forwards, into death. Understood as such, Makayla’s death is invisible, reduced
to the future she was never allowed to live, to the disavowed past, and serving
only to reify the truth that J.J. will die an untimely, yes, but also timeless death
if she, and others, continue on that path.
A complicated temporality again converges on Makayla’s body, where the was-
preventable of her death (and by implication, J.J.’s life) meets the time of her life.
While bio-discourses make Makayla live, over and over, by engaging in the theater
of her imagined future, performing her life because her death is untranslatable,
J.J.’s decision to live otherwise continues to challenge these moralizing narratives.
As we have argued, Makayla’s story, among other things, potentially offers us the
means with which to wrestle with the indeterminacy of the future, the relationality
of community, of illness, health, the proximity of death, and the grammar of lived
moments that constitute the time of a life. While the discourses of neoliberal
biopolitics can do no more than to make Makayla live in spite of death, her
community, and other communities, might remember and share how the time of
her life affirmed a different kind of time to live and to die: “I think she will be
remembered partly as a trailbrazer,” said Chief Bryan LaForme of New Credit First
Nation (cited in Mehta 2015). “She set the course for a court action that worked
in the favour of First Nations across the country” (cited in Mehta 2015). In this,
perhaps we can ask whether or not it is possible that Makayla’s story tells of the
care that other, indeterminable, ways of living and dying open up toward a future,
and speak against the silencing of death-in-life for and with others, living and dead.
Notes
1 In the 2009 Supreme Court of Canada case, A.C. v. Manitoba (Director of Child and
Family Services), the Court ordered that a 15-year-old Jehovah’s Witness be forced to
undergo lifesaving blood transfusions against her will. For children under 16 years of
age, there is a judgment of “maturity”; the greater the significance of the decision, the
more the state has a right to intervene in this judgment. See A.C. v. Manitoba 2009
SCC 30.
2 Dawn Martin-Hill, chair of Indigenous Studies at McMaster University, offered an
ominous warning of such potential, urging against provoking the “wrath” of the
“warrior societies” intent on guarding Makayla from forced treatment and removal.
See Pecoskie (2014).
3 Although Guichon and her colleagues do not mention it by name, they refer to the
Supreme Court case cited in Note 1 above.
4 See Kelly Grant (2014).
References
A.C. v. Manitoba (Director of Child and Family Services), 2009 SCC 30. 2009. Accessed
July 20, 2014. http://scc-csc.lexum.com/scc-csc/scc-csc/en/item/7795/index.do.
Blackwell, Tom. 2015. “Makayla Sault Likely Died from Rebounding Cancer, Not
Chemotherapy Effects: Specialist.” The National Post, January 20. Accessed August
20, 2015. http://news.nationalpost.com/news/canada/makayla-sault-likely-died-from-
rebounding-cancer-not-chemotherapy-effects-specialist.
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nations-healing/?region=on#ixzz37ZutEQZ3.
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Globe and Mail, May 22. Accessed June 20, 2014. www.theglobeandmail.com/globe-
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sault-should-not-have-died-289405981.html.
5 University–community
collaboration with urban
Aboriginal peoples
Case study of the Healing of
the Seven Generations Canoe
Project
Ginette Lafrenière
Introduction
The purpose of this chapter is to illustrate through a case study how public
intellectuals can play a role in contributing to community development in urban
settings, particularly with vulnerable populations. The Canoe Project is an example
of how members of a research group, in tandem with members of an Aboriginal-
specific collective, collaborated on a project that over a summer brought together
men, women, elders, and young people to build a canoe and in the process reclaim
a sense of self.
The development of the Canoe Project has its roots in the work that I have
engaged with several members of the Aboriginal community in Kitchener-
Waterloo since 2003. Through my collaboration with the founding director of a
community-based healing project for survivors and intergenerational survivors of
the Residential School System I have had the opportunity to work on a variety of
timely projects and initiatives. The Healing of the Seven Generations is a non-
profit organization that seeks to heal, enrich, and enhance the lives and living
conditions of survivors and intergenerational survivors of the Residential School
System. Initiated in 2003 and funded by a one-time grant of $400,000 by the
Aboriginal Healing Foundation, the Healing of the Seven Generations (H7G) is
a community-based healing project that honors community building and outreach
with Aboriginal and non-Aboriginal social service providers in order to enhance
the lives of its clients. The H7G project has evolved over time and has expanded
its healing focus toward youth and restorative justice as well as other stakeholders
within the Aboriginal community.
My work with the H7G is sporadic in that we collaborate when there is a need
to do so. The Executive Director and I have attended several conferences together
to describe our work and collaboration. She has guest lectured in several of my
110 Ginette Lafranière
classes over the years and as such has significantly enhanced learning opportunities
for my students. In the past 6 years, our collaboration has been less pronounced
as the H7G has achieved a level of financial stability and independence.
Nonetheless, to this day, I am still called upon occasionally to review certain
funding applications and conduct other services as a public intellectual. I am most
happy to do so as it is an honor and a privilege for me, as an ally, to collaborate
with members of the Aboriginal community. My involvement is, at times,
admittedly timid as I am painfully aware of my social location as a white
intellectual who is regarded as an “ambassador” of the university. My presence
may be perceived and experienced as suspicious and perhaps even intrusive and
irrelevant to some stakeholders within the Aboriginal community. Add to this
reality, the complex tensions and politics that may exist within and among various
Aboriginal circles, and my raison d’être within any community development
initiative is curious to say the least.
I think that this is a common sentiment that many allies may experience when
working with members of First Nations communities and I believe it is healthy
to reflect upon the positionalities and tensions we negotiate as public intellectuals,
particularly in the context of UCC. In light of this sentiment, this chapter aims to
illustrate that despite the complexities and challenges of working across cultural
and academic boundaries, public intellectuals can play important roles in creating
spaces for urban community development with community partners who may be
characterized as vulnerable or marginalized. In the 12 years that I have worked
at Wilfrid Laurier University, I have worked with sex-trade workers, survivors of
war and torture, survivors of intimate partner violence, and survivors of the
Residential School System. And over the years, my students and I have worked
with hundreds of individuals, as well as the health and social service agencies that
work on their behalf, within projects that have been dedicated to transformative
practices. In other words, we have worked closely with community partners on
community-based research projects as well as community development projects
that are dedicated to enhancing the lives of the people we purport to serve as social
workers. This particular chapter seeks to shed light on how exactly a UCC project
can emerge, unfold, and come to fruition. The nuances, textures, strengths, and
challenges of this particular case study are inherently important to those academics
who seek to understand the merits and legitimacy of UCC.
Defining university–community collaboration (UCC)

Before describing the case study, it is important to highlight a few salient ideas
relative to what actually characterizes UCC. It has been argued that establishing
“university” and “community” as mutually exclusive categories establishes and
reinforces silos, emphasizing divisions and minimizing similarities (Dempsey
2010). However, the question of what or who constitutes “university” and
“community” in UCC is an important starting point for understanding the nature
of UCC and the diversity of manifestations of UCC given the way in which
“university” and “community” can be and have been defined in UCC literature.
Collaboration with urban Aboriginal peoples 111
The literature on UCC frequently describes the common goal of collaboration
as tackling a large, complex social or environmental ill that cannot be effectively
addressed by one individual or one organization or group alone (Boyer 1990;
Gronski and Pigg 2000; Spoth and Greenberg 2005; Swan 2002). However,
collaboration need not always aim to meet such lofty goals as solving large
intractable problems. In practice, as evidenced by the numerous accounts of UCC
partnerships, the goals of any single UCC initiative may be focused on more
immediate or practical problems faced by communities or community-based
agencies for which university expertise and resources may be applied to support
solutions, including the development of new knowledge. Realistically, university–
community partnerships are “experiments that can lead to learning” about potential
ways to solve problems and about the ways partnerships work (Baum 2000).
Specific goals for a collaborative should be set and some realistic goals can be
achieved, but broad visions of dramatic social change through UCC are, in fact,
overblown or misguided (Baum 2000; Clayton et al. 2010). Certainly UCC has
been shown to have positive impacts, but the evidence that collaboration between
universities and communities is effective for ameliorating large-scale and complex
social ills has yet to be firmly established (Nichols et al. 2013).
Because I am a social work educator, I believe that as a public intellectual my
work and research should be transformative. That is, that the critique that I hold
of static, unimaginative, and oppressive ways in which social workers—and the
systems in which they work with vulnerable populations—operate need to be
dismantled and transformed into spaces that are truly responsive to client needs.
As such, a transformative approach to UCC involves using social justice principles
to solve inequities rather than engaging in acts that are primarily charitable. While
many of the projects in which my students and I have worked certainly incorporate
some conventional practices associated with UCC, such as community-based
research and community service learning, they are more focused on taking action
and supporting the community in ways that go beyond knowledge production and
transfer—the traditional contribution of the university to UCC initiatives. The
Canoe Building Project is an excellent example of the messy reality of UCC as
a transformative tool of social change, albeit on a very small scale.
The body of literature concerned with UCC spans a range of academic disci-
plines and is mostly characterized by case studies. One of the primary challenges
of defining UCC is the confusion that can reasonably result from the number of
different terms used to describe it and its related concepts, as well as the general
inconsistency of terminology usage and definition across authors, projects,
practitioners, etc. Some of the terms used in the literature to describe UCC include
campus-community collaboration (Nichols et al. 2013), campus–community
partnerships (Dempsey 2010; Worrall 2007), civic engagement (Clayton et al. 2010;
Costa and Leong 2012; Stanton 2012), community collaboration (Jensen,
Hoagwood, and Trickett 1999), community–academic partnerships (Fielden et al.
2007), community-engaged scholars (Ward 2010), community–campus partner-
ships (Furco 2010), and community–university collaborations (Buckeridge et al.
2002; Dewar and Isaac 1998; Suarez-Balcazar, Harper, and Lewis 2005).
For the purposes of this chapter, and frankly, with most of the work in which
I am involved, I happily reside within the nomenclature of “university–community
collaboration” as it is expansive enough to include the tensions and complexities
that define it. As we will see in the Canoe Building Project, the role that my students
and I played in assisting the H7G in acquiring funding for the project, while
important, was not by any stretch of the imagination life altering. In this partic-
ular case study, the role of the “university” was rather limited in that, after the
acquisition of funds, the rest of the project rested almost entirely within the hands
of the community partner. What is important in this particular case study is that,
I, as a representative of the academy, stepped out of the traditional box in which
most academics are seen and placed in, namely, as “educator” and “researcher,”
and walked a line of “community developer” and “ally” for an organization that
required our services in a punctual and purposeful manner. What I will discuss
further on in this chapter is that the role of the public intellectual in a UCC context
is complex and requires enormous flexibility and tolerance for ambiguity. These
are attributes that, in my opinion, can define “university–community collabora-
tion,” hence my affection for the term. Certainly, for some academics, spending
time on a canoe building project is the antithesis of intellectual work and rigor,
and yet, I will argue that it is precisely because of the work in acquiring the
funds for the project that the canoe building initiative emerged as a profoundly
meaningful and intellectual endeavour. Within this reality, the concept of UCC,
although not generally described as such, can be viewed as perhaps being too
expansive and inclusive, therefore translating into a sort of curious, intellectual
nothingness. For me, au contraire, I believe that the strength of UCC lies precisely
in its inherent complexities, hence why I choose to embrace the concept and words.
Aboriginal realities in Kitchener, Ontario

The Canoe Building Project was situated in a growing urban center. The city of
Kitchener has a population of over 200,000 and is located in Southwestern
Ontario, Canada. In 2011, 1.5 percent (3,155) of the population of Kitchener had
an Aboriginal identity (Statistics, Canada, 2013). Statistics Canada defines the term
“Aboriginal identity” as whether the person reported being an Aboriginal person,
that is, First Nations (North American Indian), Métis or Inuk (Inuit) and/or being
a Registered or Treaty Indian, (that is, registered under the Indian Act of Canada)
and/or being a member of a First Nation or Indian band. Aboriginal peoples of
Canada are defined in the Constitution Act, 1982, section 35 (2) as including the
Indian, Inuit and Métis peoples of Canada.
The scope of Canadian urban populations are continually adapting and evolving.
These changes are due to the shifting nature of urban populations, a larger
reflection of federal and provincial policies regarding settlement, employment, and
immigration (Newhouse and Peters 2003). In the case of Aboriginal people, there
has been a dramatic increase in the proportion of Aboriginal people living in
Canadian urban centers (Cooke, Woodhall, & McWhirter, 2013). According to 2011
Census data, off-reserve Aboriginal people constitute the fastest growing segment
of Canadian society. In 2011, 56 percent of Aboriginal people lived in urban areas,
up from 49 percent in 1996 (Statistics Canada, 2014). In many Canadian urban
centers, Aboriginal people represent a substantive portion of the population and,
if this trend progresses, their presence in urban centers will continue to grow.
As Evelyn Peters (2004) and Newhouse and Peters (2003) emphasize, any
discussion of urban Aboriginal demographics, or health or social trends, must take
into account the historical conditions that created these urbanization patterns. Many
Canadian cities grew in places that were historically used by Aboriginal people
as settlements or gathering places. As Peters (2004) explains, many government
policies were aimed at concentrating Aboriginal people away from urban centres.
These historical realities demonstrate that patterns of urbanization for Aboriginal
people are not like other migrants to cities in Canada. Although Aboriginal people
may encounter some similar challenges and opportunities, many Aboriginal people
are travelling within their traditional territories. As Peters (2004, 3) writes,
[m]any [Aboriginal people] have expectations that their Aboriginal rights

and identities will make a difference to the ways that they structure and
live their lives in urban areas. The clarification of Aboriginal rights in urban
areas, represents a major challenge for governments, both Aboriginal and
non-Aboriginal.
Factors influencing the increased urban migration by Aboriginal people include

economic, social, and historical issues. Other key themes identified in the literature
include: a lack of opportunities for education and employment in reserve or rural
communities; the need to improve overall living conditions and socioeconomic
status; the need for specialist health services; the lack of access to adequate housing
in some rural and reserve communities; an expectation of opportunity and in some
cases excitement in city life (Levesque 2003). Newhouse and Peters (2003) argue
otherwise: many Aboriginal people are working to build culture and community
in urban areas, and urbanization is occurring along with reinforcement of cultural
identities. Unfortunately there is little research on the reasons why Aboriginal
people migrate to the city of Kitchener. Anecdotally, there are many individuals
and families who come to southwestern Ontario looking for employment, educa-
tional opportunities, and so on. What was evident at the time of the Canoe
Building Project was the fact that there were various Aboriginal stakeholders
residing in Kitchener who were interested in becoming involved in the project as
a way to reconnect with each other as colleagues, friends, and volunteers. What
follows is how the Canoe Project unfolded.1
The Canoe Building Project

Approximately 7 years ago, I received a phone call from the Executive Director
of the H7G requesting my assistance in applying for a United Way Grant to access
monies to build a canoe. Admittedly, this was the first time in my career that
I had been asked to apply for monies for this type of project. Needless to say it
took quite a bit of discussion with the United Way in terms of explaining the cultural
and social relevance of spending money on building a canoe. The way in which
we framed the project was within the parameters of an intergenerational project:
the vision of the E.D. of the H7G was, among other things, to encourage young
urban Aboriginals to collaborate socially with adults and elders and create a space
whereby the building of the canoe would bring young people to think about the
rich and textured past of First Nations people. The act of building something
tangible, a canoe, which would carry many stories of collaboration throughout
the summer, among a wide array of First Nations peoples was particularly
appealing to the H7G. It took months of negotiations for a $2,000 grant. But, to
the credit of the United Way, they took a chance and supported this curious project.
Because the H7G does not have charitable status, my research group received the
monies and then disbursed them to the elders who were commissioned to build
the canoe with members of the Aboriginal community. A Mennonite farmer
donated the land and wood from which the canoe was built, and over a period of
almost 3 months the canoe was built by dozens of community members. Various
Aboriginal members from a multitude of different cultural groups came together
to work on the project. Regardless if someone was Ojibwa, Dene, Mohawk, or
Cree, man or woman, child or adolescent, everyone contributed across culture,
gender, age, etc., in order to make the canoe come to life. What was most im-
pressive about the project is how the various members came together and shared
stories of their respective communities, cultures, and pasts. The Healing of the
Seven Generations created an opportunity for survivors and intergenerational
survivors to work together and, through building the canoe, to rebuild their own
narratives in ways that were healing, authentic, and contributive to positive
community development. In essence, the H7G fulfilled its mandate as a healing
project through the building of the canoe. And, my students and I, in a very small
way, contributed to the unfolding of this project. The fact that we were successful
in the grant application that we submitted on behalf of the H7G was meaningful
to us. And this, despite the fact that some individuals at the university would have
thought curious all of the efforts made to apply for the grant, which was neither
research nor evaluation. But to me, to my team, it was so much more. It was an
opportunity to be allies in a profoundly meaningful way and contribute to a summer
of extraordinary exchanges. UCC in this case was quite simple: apply for funding
to build a canoe and the community partner would take care of the rest. Sometimes
that is all that is needed or required of public intellectuals within a context of UCC:
to avail our expertise, skills, and students in ways that can be helpful to our partners.
Interestingly, and retrospectively, I believe that the canoe is actually a metaphor
for some very powerful learning. For example, through the lenses that we bring
to our work as academics, there are multiple ways in which the canoe project can
be framed. Over the years, as I have presented this case study in a variety of venues,
many people have understood or experienced this case study as a sort of classroom.
That is, the Canoe Building Project is a powerful symbol for learning. It is a primary
prevention project, an Aboriginal intergenerational project, an intercultural project,
a capacity building project, an artistic project, a therapeutic and healing project.
It is a project that can take on multiple dimensions depending on how one wishes
to understand it. Surely these different meanings are a foundation for future rigorous
and rich academic inquiry.
This particular case study has come to life after years of reflecting upon it and
presenting it at various conferences, classes, and other spaces. The last time I spoke
of this case study was at a conference sponsored by the Canadian Association of
Research Administrators (CAURA) in November 2014. The feedback I received
from that presentation and subsequent invitation to present again in Toronto at
another conference was the impetus for me to highlight through this chapter the
merits and challenges of UCC. I believe wholeheartedly that UCC can create spaces
for community development as evidenced by this case study. While there is more
work to do relative to being able to more profoundly theorize on the legitimacy
of this partnership, for the purposes of this chapter, I believe it is legitimate to at
least surrender the idea that public intellectuals have a role to play in building
authentic and mutually satisfying relationships with community partners. We all
learn when working in such a fashion. For example, my research assistant who
was a placement student at the time was instrumental in engaging the United Way
in a series of discussions that led to the grant being approved. The student in
question learned a lot about advocacy, grant writing, and presenting a case to a
potential funder. These are qualities that surely are most helpful for someone
graduating from a Master’s program in Social Work. My own learning came from
within, that is, that I needed to concentrate on what I felt was important and not
allow myself to be swayed or feel diminished by individuals who did not see how
the canoe project was academic in any way, shape, or form. My belief in the project
made me stronger and made me believe in myself in a way that was affirming. It
also allowed me to theorize on how my reflections on UCC are informed by my
practice as a community organizer. I have shared on multiple occasions that public
intellectuals need not always interact with community partners solely on a research
basis. As evidenced by the canoe project, an academic can engage in a UCC
framework that has very little to do with research. My “theorizing” has brought
me to a place that merits closer scrutiny: if a public intellectual works within a
community development framework, research will follow. As described earlier in
the literature review on UCC, much of academics’ time is spent in the opposite
direction. That is, academics will rally around a research idea and then engage
with community partners to complete said research. My strategy is different: I
think, and as evidenced by this case study, academics can respond to a community
need that has very little to do with research, and then, once that need has been
fulfilled, research opportunities can abound. Theoretically, I can spend the next
few years writing a dozen articles on the Canoe Project through a variety of lenses.
Had I not accepted to write the grant for the project in the first place, future writing
and theorizing might not have been possible for me as an academic.
Lessons learned
Once the canoe was built, members of the community brought it to the Grand
River to test its buoyancy. Success. It was a wonderful example of a canoe built
by those individuals whose ancestors had done it a thousand times in different
ways before. The pride of ownership and accomplishment was very strong.
Ultimately, no one can really “own” a canoe in such a context, and as such, in a
ceremony organized between the Healing of the Seven Generations and the City
of Kitchener, the canoe was donated to the City as an artistic piece that is now
prominently displayed on the second floor of the City Hall of Kitchener. It is now
a site for tourists who come to visit Kitchener.
The lessons we all learned from this project are numerous. From a social justice
perspective, the project was one that honored my belief that the work in which we
are involved as social workers and social work educators should be transformative.
From a student perspective, successfully working on a grant and engaging dialogue
with a funder is an important lesson to carry as a working professional in social
services. Taking risks and engaging in work that may appear curious on the surface
(getting involved in a canoe project) only speaks to the nature and depth of
university–community collaboration. Having the ability and the opportunity to work
across cultural boundaries with First Nations people is an enormous honor; to have
contributed in a small but punctual way to the Canoe Building Project speaks to
the legitimacy of alliance building between Aboriginal and non-Aboriginal allies.
The fact that the project was able to create a physical space for community members
to meet and interact cannot be underscored: the teachings from elders to the
Aboriginal youth and the sharing of food and stories are all elements of a successful
community development project. Presumably, and this would need to be verified,
members of the Aboriginal community enjoyed the experience of working on the
project and experienced a certain degree of satisfaction in not only working
collaboratively, but having the opportunity to work as a collective, sharing stories
and experiences all the while connecting in a meaningful way with each other and
to the project at hand. As for the partnership between the H7G leadership and my
team, the merits and benefits of working in tandem with an academic partner was
experienced as most positive. This isn’t always the case, but for the Canoe
Building Project, it was an alliance that was experienced as mutually beneficial.
Can a framework of university–community collaboration create opportunities for
community development for urban Aboriginals? As evidenced by the Canoe
Building Project it is possible. This case study should serve as an illustration of
what is possible when public intellectuals embrace a UCC framework in their
careers and don’t shy away from stepping outside of the academy’s traditional
expectations. As mentioned above, this particular case study highlights certain
elements of positive UCC: purposeful engagement with social justice principles,
enhanced student learning, approaching UCC through a community development
framework as opposed to one that is research-focused, working effectively across
cultural boundaries as allies, contributing to enhanced community capacity building
among urban Aboriginals, as well as nurturing a mutually beneficial working
partnership between the academy and a community-based healing project. There
is still much to learn in terms of how public intellectuals can effectively collaborate
with community partners: the canoe building case study is an attempt to encourage
dialogue and debate relative to the merits of doing so.
Note
1 The literature review on Aboriginal urban demographics was utilized for an
environmental scan on Aboriginal Health and Wellness in Waterloo Region, which a
colleague and I conducted last year. The results of the project were never published.
Pieces of the literature review have, however, been applied to this chapter given its
relevance to the Canoe Building Project.
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Peoples, edited by D. Newhouse and E. Peters, 23–34. Ottawa: Policy Research Initiative.
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6 Postcolonial negotiations
Care, Aboriginal rights, and the
challenge of democracy
David Lynes
Care and human rights

Michael Ignatieff, in his book The Rights Revolution (2000, 43) writes: “The
purpose of human rights is not to make those in danger the wards of conscience
of those in zones of safety, but to protect, defend, and restore the agency of the
defenseless so they can defend themselves.” This quote relies on a number of
assumptions that raise difficult questions about both the nature of human rights
as well as their relative distribution in a highly diversified democratic society.
In the process, it also implicates human rights within the wider conversation of
the nature of care and responsibility. The very idea of the need for human rights
presupposes both a population endangered by such an absence as well as those in
a position to respond to and remediate this danger. As such, the commitment to
human rights serves as a window on the complicated conversations surrounding
questions about both the origins and the limits of care as an orientation between
both people and cultures.
By introducing into this conversation the responsibility to “protect, defend, and
restore” the human rights of others, Ignatieff is not necessarily excluding the sense
of this obligation as something that could or should exist equally and mutually
between all people. What it does suggest, however, is that the responsibility to
care for others emerges out of particular interactional histories that serve to
ground the call for care, the particular form it takes, as well as some idea of what
it hopes to achieve in terms of the welfare of all concerned, including both those
who are the recipients of care and those who undertake its provision. Examining
Ignatieff’s discussion of the defense of the human rights of Canada’s Aboriginal
population helps to illustrate how the history of a country’s origins participates
in effectively circumscribing one of its ostensively most magnanimous impulses
with respect to the care and responsibility for the rights of its minority populations.
Wards of conscience
One of the most striking features of Ignatieff’s quote above is its reference to
“zones of safety.” Despite the “human” and so putatively universal nature of such
120 David Lynes
rights, for some, it seems, they remain “safe,” while for others they do not. As a
consequence, the argument goes, human rights need to be safeguarded in order
to continue to exist and the ability to do so, according to Ignatieff, involves
“agency.” But how does it follow that those secure in the knowledge of their
own rights are thereby either obliged or qualified to defend, restore, or care for
the rights of others? Ignatieff ’s use of the phrase “wards of conscience” suggests
one possible explanation for the compulsion, but as will be shown, not necessarily
the qualification to undertake such a defense.
Within the context of Canada’s colonial history can be found a very reasonable
explanation for a troubled conscience on the part of those whose rights are
assumed to be and are treated as safely ensconced, when confronted with the
absence of similar rights among so many others, so very close at hand. As most
accounts of the “discovery” of North America now make clear, the assertion of
the rights of colonizing Europeans was and continues to be clearly at the expense
of the preexisting and well-established indigenous population (see for example
Dickason and Newbigging 2010; Wright 1993). Ignatieff’s statement, then,
suggests that as a response to this history, those confident in the safety of their
own rights may have good reason to feel obliged to defend or restore the rights
of those without. Assuming, that is, that the colonizers do, in fact, recognize
and accept their own role in the creation of inequality and injustice with respect
to the Aboriginal population, and with this recognition, an inherited sense of
responsibility to work toward the extension of equality and justice for all.
So while Ignatieff specifically recommends against people becoming wards of
conscience, we can see where the temptation might arise. If aboriginal people are
not to be considered wards of conscience, though, Ignatieff nevertheless preserves
a sense of responsibility on the part of those with rights, toward those without
them or for whom they are threatened. Interestingly, then, the first thing to notice
about the responsibility Ignatieff admits to, is that it is not a matter of conscience.
But if not, what kind of matter is it and why is it important that the conscience
of those whose rights have been institutionally safeguarded in this way be absolved
or at least bracketed away from inclusion in the challenges he is addressing? One
way of responding to these questions is through examining how Ignatieff’s
proposed response to the problem directs attention away from questions of
conscience.
To begin with, Ignatieff’s stress on the centrality of “agency” introduces a serious
and unfortunate obfuscation. Insofar as agency is understood as the ability to
formulate and act upon the pursuit of one’s own destiny, the exercise of agency
is inevitably conditioned and influenced by the social, cultural, and political
context within which people live. If some people, therefore, are unable to realize
their destiny, or worse, have difficulty conceiving of what it might look like within
a particular political circumstance, this absence is not due to any deficiency or
short-coming on the part of those so categorized. The problem with politically
oppressive regimes is not that those who live within them lack either the drive or
the interest in realizing their own promise or the promise of their communities.
It is rather that their ability to do so is so seriously intruded upon by forces over
Postcolonial negotiations 121
which they have very little control. If, therefore, a particular political regime,
whether it be autocratic or democratic, deprives a segment of the population of
their human rights, looking to rehabilitate the agency of rights-deprived people
would not seem to be the most obvious solution because it is not the most obvious
source of the problem. In fact, there is little to choose between what Ignatieff refers
to as “agency” in this context and the existence of the very human rights it (agency)
is being called upon to defend.
In terms of the interest in care, this has definite implications. If it is not the
agency of the rights-deprived people that is at issue—if, in other words, the absence
of their rights cannot be accounted for through the identification of any lacuna in
terms of individual (or communal) characteristics of those whose rights are to be
cared for and protected—the foundation as well as the legitimacy of Ignatieff’s
caring attention is thrown into question. Insofar as the incentive toward care is
conceived of as grounded in the sense that those in a position to offer it are in
possession of something the recipients of it lack, Ignatieff’s discussion to this point
does not get us much closer to understanding what this might be. One of the reasons,
it would seem, is because what is in need of care in this instance differs from the
care we might imagine being provided to one recovering from physical or
psychological trauma.
If there remains, nevertheless, some responsibility to be assigned for either the
infringement or outright denial of the rights of others (the possible traumatic effects
of this denial not withstanding), how is this to be understood if its origin is not
adequately explained by any innate deficiency in a people’s agency or in the possi-
bility of guilt over Canada’s colonial history? If, as suggested above, the political
and legal edifice of the society is intimately connected to the achievement of human
rights, it is not surprising to find one explanation for the persistent sense of
responsibility with respect to this problem to be embedded within the workings
of a modern liberal democracy such as Canada’s.
Democracy’s promise
Developing this line of thought with the help of a somewhat more substantial
consideration of the political origins of a collective’s responsibility toward
safeguarding the rights of all, is Ronald Dworkin’s landmark book, Taking Rights
Seriously (1978). According to Dworkin, one explanation for the emergence of
rights as a topic of concern can be linked directly to an inevitable disproportion
of power in the hands of the majority, which is essentially built into the democratic
system itself. Dworkin writes:
The bulk of the law—that part which defines and implements social, economic,
and foreign policy—cannot be neutral. It must state, in its greatest part, the
majority’s view of the common good. The institution of rights is therefore
crucial, because it represents the majority’s promise to the minorities that their
dignity and equality will be respected
(1978, 204)
122 David Lynes
This quote goes a long way toward explaining how it is that an institutionalized
injustice within a democratic society can be addressed with a clear conscience.
In these terms, the guilt Ignatieff is warning against could be understood as a
response to the recognition that the majority’s promise to its minorities has been
broken or betrayed. Dworkin, however, gives us a way to understand how such
guilt may not be entirely warranted. While there could certainly be grounds for
regret or even guilt over the enactment of individual laws that were and are
particularly damaging to the dignity and respect of certain minorities, a share
at least of the responsibility for this, according to Dworkin, can be found in the
democratically inherent disequilibrium of power. Accordingly, the perpetuation
of any on-going injustices toward a particular minority can be thought of as a
form of collateral damage, which is part and parcel of an ostensibly blameless
commitment to democracy.
The problem is, however, that if it is true that the bulk of democratic law “cannot
be neutral” and must represent “the majority’s view of the common good,” it may
also be true that the dignity and equality of a minority’s view of the common good
may never feel adequately represented or respected under this law and may, in
fact, not be. As long as this is the case, questions of culpability (if not of
conscience) can be glossed over but can never be completely eradicated. This
remains the case, even when the quest to defend or restore a minority’s human
rights is explained and defended as a worthy end in itself, rather than just as a
means to assuage guilt over its absence. As Dworkin’s observations make clear,
even as this effort may certainly be a worthy end in itself, the absence or loss of
a minority’s rights within a democracy is never an accident or an act of God. As
such, its origins cannot be ignored if it is not to be allowed to continue indefinitely.
When Dworkin says, then, to repeat: “The institution of rights is therefore crucial,
because it represents the majority’s promise to the minorities that their dignity
and equality will be respected” (1978, 204), what is not being said is that the dignity
and equality of all will be respected. It does not say this because the dignity and
equality of the majority is, evidently, so safely assumed as to be taken for granted.
In fact, the institution of rights only becomes interesting or worthy of concern for
the majority when it periodically becomes obvious that whatever form respect for
the dignity and equality of the majority takes, it at least potentially, if not
inevitably, imperils the dignity and equality of a minority. Furthermore, the
majority’s promise to the minority, no matter how heart-felt and sincere, does
nothing to alter this equation. In light of this, we should not be surprised to find
that any conception of the majority’s responsibility toward and attempts to care
for and respond to those who do not share its understanding of the common good,
will have difficulty sustaining its legitimacy (let alone its sincerity) against the
weight of this democratic disposition.
What we are left with, then, is the question of the nature of a more universal
responsibility, one that falls on everyone, to assert and defend the rights and equality
of all. This is different, however, than asking what the responsibility of a
democratic majority is toward the minority. And yet it is this later question that
Ignatieff, no less than Dworkin, must treat as paramount in light of their
commitment to democracy, and it is the question that Ignatieff is primarily
concerned with answering. However, the overwhelmingly oppressive legacy of
Canada’s colonial history, especially with respect to its consequences for First
Nations, Inuit, and Métis people, introduces a rather more pressing antecedent
question. Namely, how well can the idea of a democratic majority’s responsibility
toward the dignity and equality of its minorities hope to be realized when the
majority’s pursuit of its own well-being has involved what some refer to as a
genocidal attack on the culture of aboriginal minorities?1 More specifically, to
what extent does the majority’s recognition of its own complicity in an historical
denial of the rights of others qualify it for the task of insuring equal rights for all
in the future? For the famous Brazilian educator, Paulo Freire, the answer to this
question is, not at all. In fact, Freire insists those responsible for such injustice
must specifically be excluded from the effort to remedy it. As he writes in his
book, The Pedagogy of the Oppressed (1970, 39), “the pedagogy of the oppressed
cannot be developed or practiced by the oppressors. It would be a contradiction
in terms if the oppressors not only defended but implemented a liberating
education.”
In the case of the relationship between Canada’s First Nations and the Canadian
government, this presents an extremely difficult problem. Despite the role of the
Canadian government in the historical oppression of Canada’s indigenous peoples
and cultures, few would argue that this same government has no role at all to play
in either ending the systemic cultural oppression of Aboriginal peoples or, for that
matter, actively supporting the ongoing process of cultural affirmation and renewal.
As Ignatieff points out, the Report of the Royal Commission on Aboriginal Peoples
(Government of Canada 1996) itself argues that the best way forward in this regard
is through a “treaty-making process,” a process that “recognizes the existing treaty
obligations of both parties, and . . . also acknowledges that both parties come to
the table as equal nations” (Ignatieff 2000, 80). And yet, notwithstanding the
attraction of this ideal of negotiated settlements, and despite some limited success
in this direction in the Canadian context, it remains a stubbornly elusive goal. And
while the reasons for this persistent difficulty continue to be explored, very few
question the wisdom of relying on treaty or rights negotiations as the most
auspicious way forward toward a just future coexistence.
One consequence of the faith in a negotiated settlement between such long-
standing and entrenched differences is that the question of the potential wisdom
of Freire’s contrarian view is very easily overlooked, if not altogether dismissed.
If we return once more to Ignatieff’s discussion, it is not difficult to see how this
happens. What is instructive is how steadfastly the logic of Freire’s conclusion is
avoided right at the point where its relevance becomes most clearly apparent.
The problem of good faith

Contrasting the commitment of Aboriginal groups to “an ideal of sharing use rights
(of land, resources, etc.) with others, rather than a European model of exclusive
ownership” (Ignatieff 2000, 80), Ignatieff continues:
124 David Lynes
The problem is how to create the good faith to share between peoples who
have such a long history of hurt and injury between them, and in particular,
how to adjudicate disputes when sharing fails
(2000, 80)
Undermining the possibility of establishing such good faith is dealing with what
Ignatieff refers to as “exceedingly difficult problems of principal” (2000, 80):
For a Canadian government even to enter into negotiations with Aboriginal

nations about sharing sovereignty is to concede that the sovereignty they
are discussing is a patchwork quilt of overlapping jurisdictions . . . For
aboriginals, discussions about sharing sovereignty require accepting the
legitimacy of a government that presided over their despoliation as a people
(2000, 80)
In other words, it is as difficult for the Canadian government to recognize and

accept that its own sovereignty can or should be limited by the sovereignty of
Aboriginal Nations, as it is for Aboriginal people to accept either the legitimacy
or the sincerity of a government whose policies have only very recently shown
any interest in anything but the systemic erasure of Aboriginal culture.
If “good-faith” negotiations depend upon negotiators from both sides trusting
that there is a mutual commitment to arrive at a just settlement of their differences,
on a deeper level, it also follows that each side understands that the other has a
“right” to lay claim to their different objectives within the wider context of the
society both hope to live peacefully within. It is the absence of the mutual
acknowledgement of this right that constitutes the “exceedingly difficult problems
of principal” Ignatieff is referring to.2
It is essentially the same problem that is implicated in the question of care and
helps to reveal just how complex and fraught any provision of care can be. If those
identified as in need of care by care providers should reject what is being offered,
one reason could well be based on the rejection of the inference of inferiority. If
the acceptance of care or aid depends upon the recognition of the superiority of
those in a position to offer it, as in the early stages of a Hegelian dual for
recognition between the master and slave,3 the rejection of the offer could be read
as a rejection of the imposition of at best an incidental and at worse a spuriously
imposed structure of power. In order to deal with this problem it first needs to be
recognized. However, it is unfortunately this same problem with respect to the
provision and protection of human rights that Ignatieff’s ideas for arriving at a
settlement of these deep-seated differences consistently glosses over. A further
look at some of Ignatieff’s more concrete suggestions reveals how this happens.
In order to deal with the differences between the rights secured by the Canadian
majority and those sought by most all First Nations communities, along with many
aboriginal communities across the county, Ignatieff repeatedly emphasizes the need
for mutual sharing:
Either we must share power, land, resources, and sovereignty among the
nations of this country, or we will founder in civil strife.
But the sharing has to go both ways. The majority’s recognition of
aboriginal peoples must be followed by aboriginal recognition of the
legitimacy of our equal claim to the land . . . What is required is a process
that builds a mutual and equal recognition, each side publicly acknowledging
the other’s right to govern and live in peace.
(2000, 84)
What Ignatieff says shortly after this, however, is key to understanding why this
does not happen and why it is unlikely to happen anytime soon. In line with
Dworkin’s comments about a democratic majority’s partisanship and strength,
Ignatieff continues:
At the moment, might lies with the majority and right with the minority. Mutual
recognition must rebalance the relationship, with both power and legitimacy
finding a new equilibrium. Then, and only then, will we be able to live together
in peace in two countries at once, a community of rights-bearing equals and
a community of self-governing nations.
(2000, 84)
As promising as this sounds, setting our sights on the goal of establishing a

new equilibrium between power and legitimacy effectively ignores a much more
fundamental problem related to the way power sets the terms for what qualifies
as legitimate and true. As Foucault (1980, 93) so effectively emphasizes: “We
are subjected to the production of truth through power and we cannot exercise
power except through the production of truth”. In other words, power asserts its
own legitimacy as it is exercised, simultaneously establishing and insisting
upon its right to act as it does and not otherwise, notwithstanding the objections
of those without power. Furthermore, as the work of Noam Chomsky so
convincingly illustrates, the “truth” and “legitimacy” thereby achieved asserts itself
as effectively on those who share power as it is designed to do upon those who
are subjected to it.4
Evidence of this is clear enough from Ignatieff’s own discussion. If, as Ignatieff
says: “The majority’s recognition of aboriginal peoples must be followed by
aboriginal recognition of the legitimacy of our equal claim to the land” (2000,
84), the problem is that the very act of claiming North American land by the
first European settlers was an act of “might”—an exercise that presumed and
depended upon the military power of the colonizers staking their claims against
the objections of those already inhabiting the land. It is not then, as Ignatieff
suggests, that the majority has difficulty recognizing aboriginal people. Aboriginal
people were and are recognized as a threat to the legitimacy of the European claims,
a threat that was (and continues to be) dealt with not by moral suasion, but by the
exercise of political power afforded by democracy, including, when necessary,
by armed force.5
126 David Lynes
It is this, then, that explains Ignatieff’s presumption that aboriginal people must
accept the legitimacy of “our equal claim to the land” is perfectly reasonable, fair,
and “true” to the idea of justice. As long as the original claim to the land by
European settlers was and continues to be a claim backed by “might” rather than
“right,” any call for the acceptance of an “equal claim to the land” is also a call
to embrace an idea of equality forged on the basis of an historically unequal
relationship. To call for negotiations based on “equal claims to the land” then,
and to expect that this call will be heard as a sincere effort to achieve justice for
all concerned, is also to expect that the history of inequality, which led to the need
for such negotiations in the first place, will either be forgotten, forgiven, or treated
as no longer relevant.
This is not to accuse Ignatieff of insincerity. The point is that his expectation
of good faith speaks to the level of success the original exercise of might, going
right back to the earliest colonizers, has achieved in setting the terms for what
will be considered fair, legitimate, and just thereafter. The expectation that a de
jure equality of rights and freedom can and does exist between groups of people
whose differences depend upon historically oppressive inequalities so well
ensconced as to be practically taken for granted, is certainly not new. In his
discussion of labor-power in an early section of Capital (1987, 172) Karl Marx
describes, with characteristic irony, “a very Eden of the innate rights of man,”
which appears to exist at the point where the industrialist purchases the only
commodity the worker has to sell, namely labor-power. Within this realm, as Marx
writes:
There alone rule Freedom, Equality, Property, and Bentham. Freedom,

because both buyer and seller of a commodity, say of labour-power, are
constrained only by their own free will . . . Equality, because each enters into
relation with the other, as with a simple owner of commodities, and they
exchange equivalent for equivalent. Property, because each disposes only of
what is his own. And Bentham, because each looks only to himself.
(1987, 172)
However, as Marx continues:
On leaving this sphere of simple circulation or of exchange of commodities,

which furnishes the “Free-trader Vulgaris” with his views and ideas, and with
the standard by which he judges a society based on capital and wages, we
think we can perceive a change in the physiognomy of our dramatis personae.
He, who before was the money-owner, now strides in front as capitalist; the
possessor of labour-power follows as his labourer. The one with an air of
importance, smirking, intent on business; the other, timid and holding back,
like one who is bringing his own hide to market and has nothing to expect
but—a hiding.
(1987, 172)
The grounds for the worker’s trepidation here are laid not necessarily by any
obvious mendaciousness on the part of the industrialist, nor by any lack of
initiative on the part of the laborer. The relative advantage of one group over the
other is built into the very structure of the economic system and continues to prevail
no matter how generous a particular capitalist employer or how enterprising an
individual worker. In fact, the very idea of a worker’s agency is strictly
circumscribed by the established “legitimacy” of his/her relationship with the
employer, and more generally, by this way of conducting business.
It is not difficult to see the similarity with how a democracy, built on the
foundations of a colonial heritage, operates. Just as the corporate CEO has a
responsibility to protect and increase the investments of shareholders, the demo-
cratic leader is responsible for the institution and defense of, in Dworkin’s phrase,
“the majority’s view of the common good.” And just as the corporation’s interest
in its workers cannot interfere with its pecuniary mandate, the democratic
leadership’s responsibility toward its minorities must similarly be checked by the
mandate of the majority’s understanding of the common weal. Insofar as this
understanding includes ideas of legitimacy, truth, justice, and equality, and against
the background of an appreciation of power’s ability to establish the parameters
of these ideas, Freire’s injunction against the oppressors’ participation in the defense
and implementation of the “liberating education” of the oppressed begins to
sound much more cogent.
The negotiations called for, then, by Ignatieff and many other academic and
non-academic commentators and by many First Nations, Inuit, and Métis peoples
themselves, are not and cannot be between “equals.” The historically oppressive
processes that have created the minority status of Canada’s indigenous peoples
have also created limits to just how helpful those entrusted with the defense of
the majority’s views can be in the pursuit of concepts and practices of justice and
equality that genuinely embody these principles. It also unfortunately but
inevitably circumscribes the majority’s attempts at provisions of care directed
toward the physical or psychological consequences of past government policies
now recognized and admitted to as culturally pernicious and regrettable. The
paternal overtones of such provisions are as difficult to ignore or deny as the
majority’s right to govern within a democratic regime.
The search for an indigenous philosophy

Against the background of the discussion so far, it is possible to see how even
more nuanced examinations of the dilemma facing Canadian Aboriginal peoples,
and in particular their relations with the Canadian state, encounter similar
difficulties. A good example is Dale Turner’s book, This is not a Peace Pipe:
Towards a Critical Indigenous Philosophy (2006). Turner recognizes, for example,
that “the meaning and content of Aboriginal rights is expressed in the legal and
political discourses of the Canadian state, and that therefore Aboriginal rights exist
or have legitimacy only within the Canadian state” (2006, 4). He also recognizes
128 David Lynes
that by “legal and political discourses of the Canadian state” is meant “the
discourses of rights, sovereignty, and nationalism that are used to legitimize
Canadian legal and political practices and institutions” (2006, 4). For Turner,
however, a recognition of this situation does not diminish his optimistic view of
the potential for on-going Aboriginal/State negotiations. The following extended
quote helps to explain both the basis of this optimism as well as the inherent limits
of Turner’s project—a limit, interestingly, of which it appears Turner himself is
not altogether unaware:
The purpose of this book is not to provide another theory or philosophical

framework of Aboriginal rights. Instead, I will argue that whatever this
theory looks like, if it is to be workable in Canadian society, it has to evolve
out of the dialogue between Canadian and Aboriginal peoples. In addition, I
will reflect on what it means for Aboriginal peoples to participate in this very
specialized kind of dialogue and defend the following claim: If Aboriginal
peoples want to assert that they possess different world views, and that these
differences ought to matter in the political relationship between Aboriginal
peoples and the Canadian state, they will have to engage the Canadian state’s
legal and political discourse in more effective ways.
(2006, 5, emphasis in original)
As Turner says here, he is not attempting to provide a theory or philosophical

framework for Aboriginal rights insofar as he understands the evolution of either
to be the outcome of a dialogue between “Canadian and Aboriginal people.” The
problem, however, is that theory and philosophy do not stand idly by in wait for
the versions of either that Turner anticipates evolving. What is missing here is an
acknowledgement that the framework of unequal power that underlies any
commitment to dialogue is already theoretically and philosophically hard at work.
In fact, it is impossible to imagine the rationale for a dialogue in the first place
without this being the case—without, for example, some theoretical idea of justice
that such a dialogue imagines itself committed to and working toward.
The belief that any such dialogue could be key to providing a new, legitimate,
and just conception of Aboriginal rights, then, can only be sustained against the
background of an ongoing effort to critically examine the ways in which the colonial
(and postcolonial) “might” of the majority continues to underwrite what will qualify
as a “fair” and “just” resolution of disagreements in essential and consequential
ways. In the absence of this, even if the different Aboriginal worldviews Turner
refers to are eventually acknowledged in ways that “matter,” the extent of their
potential influence will be necessarily limited and largely predetermined by the
democratic prerogatives and priorities of the state’s majority.6 By the end of his
book, however, Turner more explicitly recognizes that:
[indigenous intellectuals] can invoke terms like kinship, spirituality, and

“Original Instructions” all we want, but they will do little political work for
us as long as the discourses of rights, sovereignty, and nationhood remain
inextricably embedded in the philosophical, ideological, religious, social, and
economic realities of the dominant colonial culture.
(2006, 116)
What Turner refers to as the “political work,” then, of rights, sovereignty, and
nationhood can only proceed with the aid of “A critical indigenous philosophy
[that] is meant to engage European philosophy while at the same time unpacking
the meaning and praxis of colonialism in the history of ideas” (2006, 116, emphasis
in original). In other words, what indigenous philosophy is conceived as being
in possession of, is a critical capacity that European philosophy lacks, capable of
“unpacking the meaning and praxis of colonialism.” There remains, however,
a problem here, one that continues to exist on a level just below the surface of
Turner’s proscriptive summation.
This problem is directly related to, as Turner points out, the observation that
“the discourses of rights, sovereignty, and nationhood” continue to be “inextricably
embedded in the philosophical, ideological, religious, social, and economic
realities of the dominant colonial culture” (2006, 116). One of the upshots of our
earlier discussion is that given the very idea of what would constitute a just, fair,
and moral resolution of questions of rights, sovereignty, and nationhood continues
to be asserted both through what Turner refers to as the “praxis of colonialism”
and what Dworkin calls “the majority’s view of the common good.” In light of
this, it is difficult to ensure that “unpacking the meaning and praxis of colonialism
in the history of ideas” (Turner 2006, 116, emphasis added) can happen unscathed
by the very history this activity itself is inextricably bound up with and is part of.
What Turner recognizes, then, is that if “indigenous philosophy” does in fact
possess a critical capacity “European philosophy” lacks, the formulation and
articulation of such a philosophy will not necessarily engage what Turner calls
the “political work” of creating—or recreating—a just and equitable form of
collective coexistence. That is unless, he says, it includes unpacking the meaning
and praxis of colonialism. The problem remains, however, that we all, aboriginal
and non-aboriginal people alike, constitute the on-going legacy of colonialism
within the Canadian context. Insofar as the praxis of this legacy continues to
influence the way we understand the very meaning of fairness and justice, it is as
difficult to imagine a political formation embodying these ideals and free from
this influence as it is to imagine the existence of Canada without its colonial origins
or its commitment to its democratic political organization.
Polite political conversation

John Dunn (2005, 41) writes in his history of democracy:
To reject democracy today may just be to write yourself out of politics. It is

definitely to write yourself more or less at once out of polite political
conversation.
130 David Lynes
While it is unlikely that those who are familiar with and write about the challenges
facing Canada’s indigenous people would worry about their standing in polite
political conversation, to write oneself “out of politics” altogether could be seen
as a much more serious drawback. As long as on-going negotiations with federal
and provincial governing officials continues to be considered the most promising
avenue toward the achievement of aboriginal sovereignty, justice, and equality,
being out of politics would not seem to be feasible. However, if the alternative is
to write into or within the parameters for “truth,” “justice,” and “equality” so
effectively established by the oppressive history of Canadian/Aboriginal relations,
there must be a third option.
If, as has been suggested here, that deeply tendentious parameters for justice
and equality spring as much from the imperatives of democracy as from the praxis
of colonialism, then the challenging of persistent colonial assumptions and
practices alone can only move us so far toward less fettered conceptions of these
ideas, as well as the consequences of their apparent achievement. Enveloped within
and legitimated by democratically defined conceptions of the common good, as
well as for whatever form initiatives of care for this ideal might take, if the
historically conditioned distortions of justice and equality have proven to be
persistently resistant to the influence of specifically aboriginal worldviews, this
could be because these different views (the ones Turner would have “matter”
politically) are aimed principally at the continuing oppressive vestiges of colonial
assumptions and practices. As essential as such views are to the on-going battle
against continuing colonial influences, they could be less well-suited to the work
of deconstructing the limitations democracy itself imposes on the ideas of equality
and justice that aboriginal people continue seek and deserve.
At the end of Turner’s book he writes: “The problem of authenticity, of who
can speak for whom in an indigenous intellectual culture, is no doubt a thorny
one—but it is our problem to discuss and solve!” (2006, 117). Without denying
the vexatiousness of this question, the persistent obstacles presented by the
democratic implementation of the ideas of equality, justice, and rights as well as
by the innumerable efforts to care about and take responsibility for the
consequences of their recently acknowledged absences, are problems all social
theorists can and do share equally. To the extent that efforts to address this problem
can only hope to be undertaken in genuinely creative and original ways if
unconstrained by the dictates of either polite political conversation or
democratically defined politics itself, it is an effort that cannot help but throw into
question the priority of negotiations with various levels of governments that are
necessarily political and must be minimally polite in order to proceed at all.
Notes
1 See Ward Churchill in this regard. Particularly the essay entitled “Bringing the Law
Home” from his book Indians Are Us: Culture and Genocide in Native North America
(1994, 11–63).
2 If, as Ignatieff says, “The process of working out how to share sovereignty is
diabolically complicated, protracted and expensive” (2000, 82), one reasonable
explanation is that it is these “problems of principle,” rather than (or in addition to)
numerous more pragmatic problems, that stand in the way.
3 Also referred to as “Lord” and “Bondsman” in Hegel’s Phenomenology of Spirit (1977,
111–19).
4 As Chomsky points out in his book Necessary Illusions (1989, 19):
[A]s the intellectuals pursue their grim and demanding vocation, they readily adopt
beliefs that serve institutional needs; those who do not will have to seek
employment elsewhere. The chairman of the board may sincerely believe that his
every waking moment is dedicated to serving human needs. Were he to act on
these delusions instead of pursuing profit and market share, he would no longer
be chairman of the board.
5 Examples of the government’s willingness to exercise its military “might” in the face
of aboriginal resistance against oppressive political decisions are, unfortunately, not
limited to the years of Canada’s founding. One of the best known of the more
contemporary examples is referred to as the “Oka Crisis.” In the summer of 1990 a
road blockade was set up by members of the Mohawk community of Kanehsatake to
protest a plan by the town of Oka, Quebec to build a golf course on sacred burial grounds.
This prompted the Quebec government to invoke a section of the National Defence
Act, which authorized the use of a federal regiment (replete with tanks and military
helicopters) to contain and suppress the dissent (see Swain 2010 and the documentary
film by Obomsawin 1993).
6 To be clear, the democratic priorities referred to here are not necessarily the priorities
articulated by a particular duly elected political party. No matter who is governing, it
is the warrant laid down by the responsibility to what Dworkin refers to as “the majority’s
view of the common good” that effectively establishes the bottom line for the influence
of any other point of view, regardless of how well it may be understood, appreciated,
and respected.
References
Chomsky, Noam. 1989. Necessary Illusions. Boston, MA: South End Press.
Churchill, Ward. 1994. “Bringing the Law Home.” In Indians Are Us? Culture and
Genocide in Native North America, 11–63. Toronto: Between the Lines.
Dickason, Olive Patricia with William Newbigging. 2010. A Concise History of Canada’s
First Nations. Toronto: Oxford University Press.
Dunn, John. 2005. Democracy: A History. Toronto: Penguin.
Dworkin, Ronald. 1978. Taking Rights Seriously. Cambridge, MA: Harvard University Press.
Foucault, Michel. 1980. Power/Knowledge: Selected Interviews and Other Writings
1972–1977. Edited by Colin Gordon. New York: Pantheon Books.
Freire, Paulo. 1970. The Pedagogy of the Oppressed. Translated by Myra Bergman Ramos.
New York: Continuum.
Government of Canada. 1996. Report of the Royal Commission of Aboriginal Peoples.
Ottawa: Government of Canada.
Hegel, G.W.F. Phenomenology of Spirit. 1977. Translated by A.V. Miller. New York: Oxford
University Press.
Ignatieff, Michael. 2000. The Rights Revolution. Toronto: Anansi.
Obomsawin, Alanis. 1993. Kanehsatake: 270 Years of Resistance. Documentary. Directed
by Alanis Obomsawin. Montreal: National Film Board of Canada. DVD.
Marx, Karl. 1987. Capital: Volume 1, A Critical Analysis of Capitalist Production. Edited
by Frederic Engels. New York: International Publishers.
132 David Lynes
Swain, Harry. 2010. Oka: A Political Crisis and its Legacy. Vancouver: Douglas &
McIntyre.
Turner, Dale. 2006. This is not a Peace Pipe: Towards a Critical Indigenous Philosophy.
Toronto: University of Toronto Press.
Wright, Ronald. 1993. Stolen Continents: The “New World” Through Indian Eyes. Toronto:
Penguin Books
Part III
Communication, ethical
collisions, and the realities
of care
7 End-of-life as a symbolic
order
Age in an era of mechanical
reproduction
Alan Blum
Introduction
In this chapter I want to examine the discourse circulating around the notion of
end-of-life, first in terms of the centrality of physical deterioration that it assumes,
and the “culture of senility” ’ that such a problem is conceived as mobilizing.
Then I explore implications of such a regime upon conceptions of care for
the self and for the other, reflected in the self-understanding of obsolescence as
it might affect self-knowledge and caregiving. Finally, I examine some avenues
of resistance organized around narrative relations to mortality that the notion of
end-of-life promises to awaken in the wide-awake subject, both caregiver and aged
in their care.
In previous work (Blum 2011, 149–65) I investigated the self-evident connection
of aging to “end-of-life” as a formula in use that resists reflection, as Vischer says
(1966; quoted in Blum 2011, 153), because such an end is seen as bound up with
incapacities to the point where it can only be treated as a pathogenic development.
In other words, the particular problem that aging might seem to pose in life is
connected so intimately with conventions for imagining physical deterioration as
central that it remains difficult to conceptualize aging as a social phenomenon that
is not simply determined by bodily decline or by the supposed marginalization
that this produces.
I want to explore implications of this passage in life for a subject conceived
not simply as determined by physical limitations, but as reflected in the voice of
an ideal speaker engaged by the question of the notion of aging (in the idiom
of Hegel), and by the enigma it introduces as a problem to work through (see the
application to teaching and learning in Blum et al. 1974).
End-of-life and physical deterioration

If the end-of-life is conceived essentially as a period ruled by physical
deterioration, then it should be coeval with a conception of the sick role in ways
136 Alan Blum
that make end-of-life a role relationship that has to be negotiated, suggesting that
such a negotiated order, rather than physical deterioration, frames the situation.
According to the conventions for identifying the sick role as such, being aged is
not simply being helpless or dependent but suffering the conditions of being
incapacitated and oriented to as used-up, as having diminished use value. In this
way, if end-of-life invites the subject to balance conditions of body and mind,
then the formula of physical deterioration as essential tends to lose the mental
factor in aging or its experience, except as a response to the “stress” of physical
decline. In this way, the actor (whether aged, caregiver, or “society”) is formulated
as orienting to aging as if a stage determined by conditions that leave little space
for a robust conception of the agency of the actor.
It is not enough to contest this relationship on empirical grounds, for we must
try to understand what it leaves unstated and unthought. For a sociologist this would
point to the connection itself as a social relationship, as a social fact external and
coercive in the idiom of Durkheim (1938), as a normative order in the words of
Weber (1947). What would it then mean to be subject to physical deterioration?
Much work on the sick role inaugurated by Parsons (1951, Chapter 10) and often
contested can still be used to make valuable reference to the expectations that
structure the experience of being sick. As I showed in my rereading of Parsons
(Blum 2011), this involves the need to demonstrate real rather than spurious
sickness in order to counteract the potential charge of malingering. As a role
relationship, being sick always involves an implicit charge of incapacity, and so,
an appeal for exemption from productivity that makes the one so designated
vulnerable to such an assignment of meaning. In other words, being ill is a
gesture of withdrawal from productive labor in ways that seek legitimacy and that
are always contestable. This means that the motives of the sick are always matters
of concern because of the fundamental ambiguity of the role (see Blum 2011,
117–24). Reading Parsons’s sick role, not as an empirical description but as a
formulation of a structure of interpretations or discourse organizing the repre-
sentation of illness and health in a certain kind of society, we can begin to place
physical deterioration as part of such a role relationship.
According to Parsons, that the enlightenment society conceives of health and

illness as conformity and deviance means not that health is normal and
sickness is deviance, a stipulation which itself suggests that society is unable
to comprehend deeply how even good or evil is anything other than capacity
or incapacity, and so, how it is always tempted to lose a grasp as any
conception of value as other than functional or in relation to productivity.
This type of society (personified in the figure of the modern enlightenment
society) is reputed to operationalize value by equating it with capacity and
further, to identify capacity with work (productive labor).
(Blum 2011, 119)
This implies that if physical deterioration is truly the fate of end-of-life for a subject,
what is inherited is this sign of vulnerability, that is, the burden of being oriented
End-of-life as a symbolic order 137
to as dependent and as having diminished use value in collective life.
If physical deterioration then functions as a sign of resignation, withdrawal,
or privatization, it is this attribution that begins to constitute end-of-life as a
social environment of the aged. This is not trivial, for it suggests that any
such relationship as this between variables remains privileged and unanalyzed
as a self-evident cliché until it is made transparent as a social course of action.
Or: physical deterioration causes nothing: it is the way it is oriented to as an order
that focuses this relationship. Further, when this is understood, end-of-life itself
can come to view as a social relationship that varies under different conditions,
specifically as a problem in modern life.
The difference between what is essential and incidental to aging is a concern
that would mark the reflection of such a subject conceived as treating age as other
than simple growth in the way a plant grows, or as other than the longevity reflected
in the fact of surviving and enduring time, or as other than collecting years in the
manner of a hoarder: each such usage is only a beginning that invites us to ask
what needs to be added to growth, survival, or chronology (as a relationship) to
make it into aging, or to make aging eventful as a passage? In this way, the ideal
speaker or subject of aging is the one conceived as oriented to a theoretic grasp
of the passage.
Even if physical deterioration is a frequent effect of aging, so might be a cranky

disposition or many other consequences as incidentals that accompany aging
as it occurs. The subject of aging must be seen as oriented to what it means
to age, to the kind of relationship aging is rather than is not. This can be thought
of as the ideal speaker, the one that can be imagined as theorizing aging.
For example, in the most rudimentary sense, aging can be formulated as a
relationship to passing time that could include everyone and anyone . . . Could
we venture, in order to supplement this beginning, that aging must specify
conditions that make passing time decisive, dramatic or even fatal?
(Blum 2011, 153)
The formula of a culture of senility

It could be expected that modern life poses a particular problem for aging and
the aged, which qualifies the platitude that aging is defined by the condition of
physical decline and deterioration and its survival. The typical example of this
convention is marked by the idea of how senility “belongs” to old age, determining
it by leaving the aged with no option but to adjust to this condition. Conceding
the severity of such physical factors still does not entitle us to assume a “culture
of senility” as the quintessential characteristic of old age. Typically, the iden-
tification of aging as a social phenomenon is reflected in the conception in which
growing old is represented as a collective problem faced in radically different ways
by modern populations. When Cohen, after Rabinow (2003; quoted in Cohen
2006, 3) and others, suggests that senility has a special relevance for critical thought,
they imply that the problems it poses invite us to rethink limits of understanding
138 Alan Blum
and action both ethically and aesthetically. The usage of senility makes aging into
a disease to which we must adapt and in this way tends to honor survival and
endurance (for all concerned) as the best that can be done. Cohen continues:
Of the three great figures of mental anguish that might be said to haunt
European thought before the nineteenth century—melancholy, lunacy, and
dotage or senility—the first two become central to the reflective accounting
of modernity . . . Senility . . . comes to be less central to thinking modernity.
(2006, 4)
Here, it is the connection of aging and senility that invites inquiry, for senility is
a limiting case of aging that prematurely directs us to foreclose any exploration
of the discourse of aging. That is, senility and its easy ascription is simply one
position in the discourse rather than its exemplary destination. So to revisit
Cohen’s distinction we might ask how representations of aging make a place for
associations other than senility as different voices in its imaginative structure. Or
better: perhaps it is the very temptation to accept this convention of affirming
senility as essential to aging that contributes to and possibly shapes the so-called
“mental anguish.” To begin to track this “anguish” in the chance that it makes
reference to something other than neurological disintegration, or even to the cliché
that depicts aging as adapting to the stress of physical decline and impairment,
we need to consider the situation of aging from a more nuanced social perspective.
Therefore, there are three problems with this formula of a culture of senility:
first, it risks taking one condition, perhaps an inessential one, e.g. physical
deterioration, as essential to the notion of end-of-life, and so, it leaves such a
conception unexplored; and second, even if reasonable, it glosses the particular
way in which the character of modern life might shape the subject at such a point,
giving the end-of-life a distinctive accent on reality. Finally, in connecting physical
deterioration too quickly to senility, it disavows an interest in formulating the
relation to physical decline as socially constructed work that must always engage
the issues that Parsons discussed such as sick role, incapacity, and productivity,
as ways of assigning, adjudicating, and developing responsibility and representa-
tions of modes of social participation. That is, the subject of physical deterioration
is exempt or not from responsibility in ways that are not simple effects of physical
factors but enter into interpretive elements of care for the self that are legitimated
in collective life. To pursue such questions we need first to explore representations
of modern life or the modern, and then revisit the relation of aging, end-of-life,
and physical deterioration within such a context.
Modern life, keeping up, enthusiasm

According to Walter Benjamin, the imaginary of keeping up is the defining mark
of modernity in the sense that what recurs is misrecognized by every generation
as unprecedented, qualifying keeping up as something like the perennial false
consciousness of any present, the mistake of treating the temporal as eternal. This
discussion is adapted from my exposition in The Lived Experience of the Dying
Body (Blum, forthcoming 2016).
The “modern,” the time of hell. The punishments of hell are always the newest
thing going on in this domain. What is at issue is not that “the same thing
happens over and over” and even less would it be a question of eternal return.
It is rather that precisely in that which is newest the face of the world never
alters, that the newest remains, in every respect—the same—this constitutes
the eternity of hell. To determine the totality of traits by which the “modern”
is defined would be to represent hell.
(Benjamin 1999, 544)
What is hell, the modern, names how the same is always disguised in and as the
new, the old manifesting itself as new. This is the “delineation of the ‘modern’
as the new in the context of what has always already been there” (Benjamin 1999,
544) Thus the modern is prone to a degree of unreflective enthusiasm that is always
tempting, joining the relation of keeping up to going back in a dialectical embrace
that will need to be mediated.
Foucault, in his lectures, reformulated Benjamin’s conception of keeping up
as enthusiasm for the present, particularly with respect to the imaginary of the
enlightenment (Foucault 2010, 14–21): “It is the question of the present, of
present reality . . . What is this ‘now’ in which we all live and which is the site,
the point (from which) I am writing?” Foucault has Kant first pose the question
of the modern in such terms: “it seems to me that in this text by Kant we see the
appearance of the question of the present as a philosophical event to which the
philosopher who speaks of it belongs” (Foucault 2010, 12). Foucault’s formulation
of this engagement with the present as a topic frames the question of the modern,
the overarching concern to and for the subject of the modern.
What is my present reality? What is the meaning of this present reality? And
what am I doing when I speak of this present reality? It seems to me that this
new questioning about modernity consists in this.
(Foucault 2010, 14)
Here, if we see Foucault remaking Benjamin’s suggestion on the relation of

the modern to enthusiasm for the present, we can also note that such enthusiasm
can be expected to be recurrent, the Same, and so always in need of specification
since, as Benjamin (1999, 545) says, if “Every age unavoidably seems to itself
a new age . . . [then] [t]he ‘modern,’ however, is as varied in its meaning as
the different aspects of one and the same kaleidoscope.” This leads Foucault to
specify this variation historically as an imaginary event, in his case under
examination, as “enlightenment” and its crucial trope the French Revolution.
It is not the behavior of the Revolution but the eventfulness of its occurrence
as a sign of the present, as an imaginary relationship, that is essential. What is
significant about the event is the enthusiasm it mobilizes.
140 Alan Blum
What is significant is not the exploits and gesticulations of the revolutionary
drama itself . . . [but] the way in which the Revolution exists as spectacle,
the way in which it is greeted everywhere by spectators who are not
participants but observers, witnesses, and who, for better or worse, let
themselves be caught up in it . . . What is significant is the enthusiasm for
the Revolution.
(Foucault 2010, 17–18)
So here we have a translation of Benjamin’s engagement with enthusiasm in any

present as its modern moment, always raising the question of keeping up as the
question of the modern.
This alerts us to the possibility that the problem of the aged as a subject of modern
life is not simply one of adjusting to physical deterioration, but of placing any
effects as such within a context that enforces as legitimate the demand to keep up
and to care for the self under conditions of such a valid order. This suggests further
that under modern conditions the problem of the aged is to develop a relationship
to their diminished use value and to the need to negotiate the relationship of
obsolescence to keeping up.
Obsolescence
I am proposing that the convention associating end-of-life with physical
deterioration risks misrecognizing the “real” problem of the aged in modern life
of suffering the exhaustion of use value created in part by the normative demand
to keep up. As I posed it (Blum 2011), the problem of end-of-life is the problem
of being seen as obsolete, and so, the problem of being divided in that sense between
the desire to be in and of the present and the experience of uselessness that can
circulate around this locus of attention.
The function of aging and the fascination with the aged is connected to
obsolescence. Why this is interesting can be appreciated by reading
Benjamin’s . . . comment on the enthusiasm of each generation towards the
up-to-date and timely, for it is by virtue of the enthusiasm which each
generation ascribes to its present that Benjamin defines modernity itself.
(Blum 2011, 159)
Thus, if modernity accentuates the fetish of needing to be contemporary and to

“keep up,” then we might see this as a particular problem for those reputed to
suffer breakdown. Indeed, the mechanical conception of this relationship—of aging
vis-à-vis decline, deterioration, and breakdown—seems to highlight the modern
problem for any subject as one of needing to deal with obsolescence. Thus, the
tropes of breakdown, and the requirements of prosthetics and repair work, of
maintaining the longevity of the body as a machine, must focus upon the technē
of the relationship to the aged in ways that make the passage in its entirety an
acute crisis where even a long life is accepted as an unhappy result. That is, when
the passage is treated as pathological and marked by decline, custodialism and
pity seem the only viable responses to such repair work. Here, breakdown means
the exhaustion of use value, and so, the condition of being useless.
The framework enabling obsolescence to be of primary relevance orients to aging
and the construal of the aged at end-of-life as a function of the inability to
conceive of use value in assumed incapacity, expressing the tendency to think of
sentimentality as the only option for engaging the unproductive. This raises the
question in collective life of how the useless can be sustained, raising concerns
for responsibility for the aged that require commitment in excess of an exchange
model, reciprocal transactions, and a restricted economy (for a discussion of some
of these issues, see Blum 2011, 149–50, 155–7, 162–3). Typically, the problem
is posed as one of justifying the costs for society in sustaining the useless, causing
us always to query this notion of use and how it could be challenged by asking
after the value that the aged might be seen as bringing to collective life, that is,
for the value of such uselessness. Whether or not end-of-life is correlative with
sickness, it still brings to view aging as a convention that always needs to be
grounded. That is, in ways similar to any category such as gender, race, and the
like, the formula always invites us to ask (in this case) what value does age bring
to collective life, as a question that opens inquiry into the social form of the
relationship. I will take this question up eventually.
Structures of care
Such a normative view of the passage and its typical expectations can influence
programs of care for the aged (caregiving) by structuring courses of action along
lines such as comforting and alleviating physical distress, managing pain, and the
various necessary custodial strategies for making the time endurable. It is this
convention and its normative expectations that need to be questioned. In all such
cases the end-of-life is treated as self-evident and the subject as passing time in
the way of doing time, in captivity to the inevitability of an end but without any
orientation to what such inevitability seems to require now and make possible for
conceptions of past and future. Yet even such measures should mobilize the
capacities of the wide-awake witness or caregiver to imagine a subject oriented
to an end in ways that invite a phenomenological approach to care and to the
passage, that is, a subject needing and desiring to understand the end-of-life as
an occasion to re-center the question of the purpose or telos of life (the sense of
“end” emphasized from the Greeks on and identified by Foucault in his late writings
as care for the self). This focus begins to implicate the caregiver or witness in the
passage in the same way by inviting a mutually oriented exploration of the sign
of mortality for the living in life itself. This would begin to dramatize the end-
of-life as requiring something more than adaptation to physical deterioration
along the lines of a stimulus-response model.
Rethinking mortality
Does modern life make a difference for the aged? Certainly conveniences offered
by technologies can alleviate physical distress, but we might wonder if the notion
142 Alan Blum
of end-of-life as a passage undergoes a fundamental alteration. We might ask how
the conventions for imagining end-of-life are influenced by modern conditions.
For example, does Walter Benjamin (1969a) propose that the end-of-life is
reconfigured under conditions of mechanical reproduction? In one respect we might
admit that under such influences all sorts of scenarios for enduring the end-of-life
are constructed and represented through media of information and entertainment.
As scenarios these representations abound in identifying different regimes for aging,
different means and methods of doing time. I described some of these strategies
(Blum 2011, 149–65) and they circulate in many analyses of leisure, retirement,
palliative care, assisted home living, pharmaceutical regimes, etc. In all such cases
an attempt is made to translate the end-of-life into a problem of everyday life that
can be managed as a practical affair. Most of these studies, often reputed to be
sociologically oriented, show the aged as problem-solving actors working to
construct a credible social world, a “negotiated social order,” in ways that would
only seem to be distracted by any ongoing reflection upon mortality because of
its morbidity. So one way of thinking about the aged as oriented more positively
to value could propose translating the collective representation of the apparent
morbidity of death into “equipment for living” (Burke 1973, 293 ff.) without
forgoing its sadness for any subject.
When such a distraction does occur, as in About Schmidt, at the point on his
drive home after the wedding of his daughter where the character contemplates
the meaning of his life for himself and for whosoever might care or come after,
the unbearable tension has to be resolved by an antidote. At this point, the voice
of the subject is treated as the sign of an acute crisis, a critical moment, in terms
of which any witness could only experience impotence insofar as formulaic
expressions of sympathy and gestures of support seem sterile. This is to say that
while it is possible to introduce a reflective gesture into the discourse, its unsettling
character as a truth must be engaged by the witness or caregiver as requiring
something other than a palliative and formulaic response. This is the task that frames
any strong relationship to the aged.
Death and age

If, as we suggest, age is a universal that requires specification in order to be
distinguished from chronology, this supplement or “something more” added to
distinguish the notion from being what Benjamin (1996, 206) calls a “scarecrow
of determinism,” seen as governed by physical decline, is typically identified as
a relationship to impending death as if what age brings to the table or contributes
to a reflective life is an awareness of finitude. But this tends to make reflection
dependent upon chronology in ways that remain unattainable throughout life in
the absence of such urgency, always needing a crisis of such magnitude to emerge,
converting reflection itself into a condition that is as mechanical as any condition.
Indeed, if sensitivity to death is a powerful element in the passage of aging,
we note also that death, a universal similar to age that falls upon all, needs its
own specification (see Blum forthcoming 2016, Chapter 12). So if aging “causes”
a reflective relation to death, even for weak rather than strong reasons, what makes
death essential to life other than the fact that it happens to all? This is a question
Simmel (2007, 74) in particular raised and tried to engage.
Even if the advancement of death were not to be found in progressive signs

such as the hardening of blood vessels . . . so too may death be seen from
another direction as linked from the outset with life, even if it—or a part of
it—cannot be identified as a reality at each moment. However, in every single
moment of life we are those who must die, and this moment would be
different if this were not in effect our predetermined condition . . . Death limits,
that is, it gives form to life, not just in the hour of death, but also in
continuously colouring all of life’s contents. The limitations of life’s totality
by death influences each of life’s contents and moments: the quality of each
would be different were it to extend beyond this immanent boundary.
Note that the universality of death means not simply that it happens to everyone
at some time but that it pervades life (at all times and stages) with “form-giving
significance.” This is because the aura of death gives form and significance to life
in ways that can (at best) sharpen a sense of life, its point, purpose, and end, not
only through positive investments in purpose and meaning as such, but also
negatively insofar as such form might give meaning through appeals to inexorable
inaction, groundlessness, despair, and gnosticism. Simmel’s point is that the aura
of mortality as unspoken limit upon life, its Other so to speak, animates the question
of the end-of-life throughout life and not just at the point of impending death and
physical disintegration.
To say it phenomenologically, the wide-awake subject must use the image of
limitation evoked by death to think through the question of the end-of-life, its point
or value. To pursue the syllogism to a conclusion: if aging contributes to life an
intensification of the dramatic awareness of limitation, then in the face of externals
such as physical decline and deterioration, the end-of-life as a passage must raise
for its subject the question of the good of life and how to develop a relationship
to such a problem. If the question of the worth of the aged is raised as if a sign
of breakdown and exhaustion of use value, that question should make contact with
the concern for the value of life raised at the end, focusing upon the irresolute
enigma of the worth of this particular life hic et nunc in relation to the value of
life per se.
At this point it should be seen how I am approaching Cohen’s (2006) forms of
“mental anguish” correlative with aging as both normal social fact in Durkheim’s
(1938) sense of conditions to engage, and as the lineaments of a discourse with
mean and extreme positions in a way that marks senility as simply one posture
or kind of adaptation. In response to those who would say that I am minimizing
the causal force of the body and physical deterioration, I claim to be reversing
the sequence, acknowledging the body as a condition that influences the intuition
of morality and its inevitability. Yet where medical science introduces “the
mental” typically through clichés of stress that make mind an adaptation to, say,
144 Alan Blum
deterioration or disease (and the slow death model does this by conjuring up
capitalism as a stress-producing machine), I am suggesting that any such condition
is only exacerbated by the intuition of mortality that interacts with the body to
produce symptoms that disguise the force of the intuition itself. Even more, I could
propose that resignation in the face of such a recognition is a forceful condition
in the physical deterioration of aging, and in the language of what Cohen calls
senility.
The story
Thus, even physical deterioration at the end-of-life is ruled by the demands of
keeping up that can create an aporia for both the normal and the lofty (see King
Lear’s madness) around the fear of being unrecognizable at present, and so, of
being lost to a future unless redeemed through some narrative gesture. Modern
life can not only accentuate this fear through its forgetfulness of what is left behind,
but contributes in other ways by condensing the life into a record. Thus, the file
or record typifies the life as a career of milestones that must gloss the intimate
register that only a story can evoke. The wide-awake aged must orient to the
division between their life as a record and its intimate depth in story. This is why
the end-of-life, marked as it often is by signs of physical decline and disintegration,
must still remain a relationship that is guided by the need and desire to make sense
of the enigma of the relation of beginning to end, of what this end (of life) might
begin, and how the beginning that was and is this life at present might end. Any
care worth its name has to recognize how the subject of old age must bear this
relationship and work it through as a quest that need be witnessed and not simply
endured in formulaic ways no matter how kindly.
Historically, the various modes of communication have competed with one

another. The replacement of the older narration by information, of information
by sensation, reflects the increasing atrophy of experience. In turn, there is a
contrast between all these forms and the story, which is one of the oldest forms
of communication. It is not the object of the story to convey a happening per
se, which is the purpose of information; rather, it embeds it in the life of the
storyteller in order to pass it on as experience to those listening. It thus bears
the marks of the storyteller as much as the earthen vessel bears the marks of
the potter’s hand.
(Benjamin on Proust 1971, 159)
Here, the task of the story is seen in its struggle to revive the relation between the
experiences suffered in a life and the enumeration of happenings that the person
bears as if a record of information. The story must struggle, perhaps impossibly,
to sustain this connection, to do such revelation through a renewed attention to
eloquence required to make end-of-life the focus of life itself in any story. Old
age sets for itself in such a desire the task of socializing its own temptation to
mental anguish.
The proper burial
Benjamin’s (1969b) formulation of the story as buried beneath the name of a person
in the way that a ruin stands to the untold history it might summon up (see also
Blum 2011, 63–87) permits us to see the struggle of age to deal with the tension
between the absolute sense of loss of what is intimate and singular for the subject
within the context of the relativism or uniformity of death as the event that happens
to all (see my discussion in Blum 2014, pp. 19–36). Thus, death can be treated
as a thing in the sense of a newsworthy event or happening in the way Gertrude
Stein (1935) speaks of the newspaper, or as recorded in an obituary, or conversely
as a story that reconstructs a convoluted history of desire. Benjamin’s distinction
allows us to begin to rethink the position of the one who tries to tell the story as
the subject whose life and death is the topic, aspiring to resist being “news”
consumed at the moment of extinction as if a name that is destined to pass out of
circulation and no more. In other words, the story is a struggle over the destiny
of the name and whether or how it is to be given proper burial.
The value of information does not survive the moment at which it is new. It
lives only at that moment . . . A story is different. It does not expend itself.
It preserves and concentrates its strength and is capable of releasing it even
after a long time.
(Benjamin 1969b, 90)
The story of a person is buried under the name. The name of the one named, instead
of enumerating detail and chronology, conceals much like the outer mark of the
“inner sense” or spirit of whatever it names.
In the course of modern times dying has been pushed further and further out
of the perceptual world of the living . . . It turns out that this change is identical
with the one that has diminished the communicability of experience to the
same extent as the art of storytelling has declined.
(Benjamin 1969b, 93–4)
In other words, the tendency to treat the name of a person as simple information
or as a record of sorts, rather than as the outer shape of an untold story, corresponds
to the avoidance of death as a topic. Accordingly, even the biography that
enumerates activities, achievements, scandals, mishaps, and glories must gloss the
work and suffering that enters into the record as a kind of untold story that might
lie beyond denunciation and encomium as an intimate order. According to
Benjamin, this is because death as the very topic of the story of a person and
of the life behind the name is denied by treating the name as a mere record of
information or as an archival trace, because the story of a person, when we truly
listen, brings us face-to-face with the story of death.
It is, however, characteristic that not only a man’s knowledge or wisdom, but
above all his real life—and this is the stuff stories are made of—first assumes
146 Alan Blum
transmissible form at the moment of his death. Just as a sequence of images
is set in motion inside a man as his life comes to an end—unfolding the views
of himself under which he has encountered himself without being aware of
it—suddenly in his expressions and looks the unforgettable emerges and
imparts to everything that concerned him that authority which even the
poorest wretch in dying possesses for the living around him. This authority
is at the very source of the story.
(Benjamin 1969b, 94)
Simmel and Benjamin imply that death needs to be the unspoken aura of any story
(and life). Is this what aging begins to teach us about mental anguish, dramatizing
for us its particular contribution to a grasp of the human condition? This is
because the intimate order, like the image of death, summons to mind the trace
of an order lying beyond representation itself, the trace of an infinite surpassing
that a story can only reveal as that unspeakable surfeit against which its
discriminations must move.
We begin to appreciate that the mental anguish particular to aging must disclose
the problem of the proper burial as a question both imploring and exhorting the
witness to connect past and future, finite face and infinitely more, in an action
that lays to rest in any present all of the possible imaginings about being laid to
rest. This is the reassurance Lear wanted from his daughters.
The relationship between the story, end-of-life, and the need for proper burial
is typically expressed in the imaginative relationship to inevitability. Thus, Kate
Powis (2007) engages Seale’s work (Constructing Death) to ask the question “can
the dying mourn?” by trying to show the limits of Freud’s conception of mourning
for one who has not yet lost an object as if the not-yet-dead have nothing past to
grieve except others, making self-loss apparently incoherent. Powis suggests that
instead of anticipatory mourning (a contradiction) we think of the fear of
annihilation (powerlessness, meaningless, nothingness). This idea that the struggle
of ego with the lost object and the libidinal attachment it creates cannot describe
the end-of-life as an imaginary relationship seems limited by its conception of the
indivisible sovereign self and its rationality.
Thus, this interesting question dramatizes how the temporal existence of a self
needs to be conceived as a mix of the finite and the infinite (see Hegel 1968),
revealing how the finite condition of anticipation or looking ahead necessarily
connects to a capacity to imagine at present the future looking back at this present
as its past, as what has been, that the loss anticipated by the self must proceed
“in advance” of the loss itself in any imaginative construal, meaning that the
self imagines hic et nunc at present the loss of what is, making anticipatory mourn-
ing the realization of dispossession in any present, and so, a capacity for mourning
that always must resist resignation, privatization, and depression. End-of-life then
asks of its subject to develop a relationship to dispossession that is mournful rather
than melancholic as the problem-solving situation to be addressed. Here, the story
becomes such a means because it seeks some reassurance that preservation
is possible in the face of an impossible guarantee. Finally, this discloses that the
story of end-of-life has to refocus the question of the beginning of life for any
other, of the limits and point of life. We might even go as far as to translate
Foucault’s contributions from his later writings to say that care for the self, of
both one and any other, its conditions of success and failure, taking its measure
in relation to the concern for the point of life, has to be the topic of the story.
References
Benjamin, Walter. 1969a. “The Work of Art in the Age of Mechanical Reproduction.”
In Illuminations, edited by Hanna Arendt, translated by Harry Zohn, 217–52. New York:
Schocken Books.
——. 1969b. “The Storyteller: Reflections on the Work of Nikolai Leskov.” In
Illuminations, edited by Hanna Arendt, translated by Harry Zohn, 83–110. New York:
Schocken Books.
——. 1971. “On Some Motifs in Baudelaire.” In Illuminations, edited by Hanna Arendt,
translated by Harry Zohn, 155–200. New York: Schocken Books.
——. 1996. “Fate and Character.” In Walter Benjamin: Selected Writings, Volume 1:
1913–1926, edited by M. Bullock and M. Jennings, 201–6. Cambridge, MA: Belknap
Press of Harvard University Press.
——. 1999. The Arcades Project. Translated by H. Eiland and K. Mclaughlin. Cambridge,
MA: Belknap Press of Harvard University Press.
Blum, Alan. 2011. The Grey Zone of Health and Illness. Bristol: Intellect Press.
——. 2014. “Aging as a Social Form: The Phenomenology of the Passage.” Journal
of Medical Humanities 1, 19–36.
——. Forthcoming 2016. The Lived Experience of the Dying Body. London: Routledge.
Blum, Alan, Peter McHugh, Stanley Raffel, and Daniel Foss. 1974. On the Beginning
of Social Inquiry. London: Routledge & Kegan Paul.
Burke, Kenneth. 1973. The Philosophy of Literary Form. Berkeley, CA: University
of California Press.
Cohen, Lawrence. 2006. “Introduction: Thinking About Dementia.” In Thinking About
Dementia: Culture, Loss, and the Anthropology of Senility, edited by Annette Liebing
and Lawrence Cohen, 3–19. Piscataway, NJ: Rutgers University Press.
Durkheim, Emile. 1938. The Rules of Sociological Method. Edited by G.E.G. Caitlin.
Translated by S.A. Solovay and J.H. Mueller. Chicago, IL: The University of Chicago
Press.
Foucault, Michel. 2010. The Government of Self and Others: Lectures at the Collège de
France, 1982–1983. Edited by A.I. Davidson. Translated by G. Burchell. New York:
Palgrave Macmillan.
Hegel, G.W.F. 1968. The Logic of Hegel, 2nd Edition. Translated by Wallace. Oxford:
Oxford University Press.
Parsons, Talcott. 1951. The Social System. Glencoe, IL: The Free Press.
Powis, Kate. 2007. “Can the Dying Mourn?” In Layers of Death and Dying, edited by
K. Woodthorpe, 87–96. Oxford: Inter-Disciplinary Press.
Simmel, Georg. 2007. “The Metaphysics of Death.” Translated by U. Teucher and T.M.
Kemple. Theory, Culture and Society 24(7/8): 72–7.
Stein, Gertrude. 1935. Narration. Chicago, IL: The University of Chicago Press.
Weber, Max. 1947. The Theory of Social and Economic Organization. Translated by A.M.
Henderson and T. Parsons. New York: The Free Press.
8 Good patient–bad patient
The ethical imaginary of cancer
Deborah Lynn Steinberg
Introduction1
Cancer, as Susan Sontag suggested in 1978, has long been a cultural touchstone,
a metaphor of devastation and a spectre of social as well as bodily anomie and
loss. Yet recent years have witnessed significant transformations in perceptions
of cancer, particularly in perceptions of the cancer patient. This chapter is interested
in the emergent ethic of care that underlies this “transvalued” cancer culture and
particularly in the moral and cultural capital that has pervasively attached to the
cancer patient as culture warrior. The analysis that follows takes up two intertwined
case studies: on the one hand, the celebrity-scaled coalescence of what might be
termed cancer’s warrior ethic, in the “brave face” of Angelina Jolie; and on the
other, the “background noise” of everyday cancer representation, as deployed
through the dominant tropes of cancer advertising. As this chapter will argue, this
everyday imaginary sets the stage for the amplified Jolie-fication of cancer culture
more broadly. The chapter begins with an account of the emergence of Jolie as
the touchstone figuration of the cancer imaginary. Turning its focus to a long-
running advertising campaign for Memorial Sloan-Kettering Hospital, the chapter
then pursues three interlinked arguments. First is that contemporary cancer culture
involves a potent articulation of popular, biocultural, and medico-commercial
discourse, of which medical advertising is a salient case in point. Second is that
the cancer patient has become a primary object of transference, typically repre-
sented as an edifying subject and a figuration of moral entitlement and moral capital.
Third, and more specifically, is that the phantasmatic “good patient” embodies a
distinctively neoliberal ethic of care—that is, body-affective imperatives of will,
affect, and action—that constitutes cancer as an imperative field and in which an
imperative of estrangement is a core dimension. As this chapter argues, cancer,
in this intermediated space, has been recast such that its preeminent ethic of care
is chiefly constituted by care’s repudiation.
150 Deborah Lynn Steinberg
Cancer, “care,” and the Jolie effect
Angelina Jolie reveals she has had preventive double mastectomy.
(Haynes 2013, guardian.co.uk)
Will Angelina Jolie’s mastectomy inspire other women to follow her lead?
(Leung 2013, globeandmail.com)
Jolie’s cancer risk shared by others with genetic flaw.
(usatoday.com 2013)
Angelina Jolie’s genetic self-ownership is the future of medicine.
(Gillespie 2013, reason.com)
After Jolie’s disclosure, cancer group urges caution.
(Sun 2013, washingtonpost.com)
A Standing ovation for Angelina Jolie.
(Ahmad 2013, jezebel.com)
On May 14, 2013, the actress and celebrity Angelina Jolie published in the New
York Times an article entitled “My Medical Choice.” In this article, she disclosed
that she had undergone a prophylactic double mastectomy and breast recon-
struction following diagnosis of a “faulty” BRCA 1 gene. This was in the aftermath
of the widely reported loss of her mother in 2007, who died of ovarian cancer at
the age of 57, and a maternal family history of breast and ovarian cancer.2 Jolie’s
article elicited what might be described as a “measured torrent” of international
media commentary and reportage. The tone of this commentary generally tempered
shock at the nature and extremity of her prophylaxis with homage (albeit in
some cases uneasy homage) to Jolie herself. The escalating reportage also quickly
coalesced around a number of emergent tendencies and motifs, all of which are
relevant to the subject matter of this chapter.
First was the juxtaposition of the languages of genetic risk, fighting cancer, and
informed choice, which not only allowed, but also rationalized and normalized
the extremity (and for some, brutality) of Jolie’s decision. In this context, Jolie
could be framed as a breast cancer patient though she did not have breast cancer
and might never have gone on to have it.3 A zero-sum response to a far from certain
science4 (about a terrible disease that one could get) could seem, albeit with some
unease, logical and proportionate. And “genetic self-ownership” could be invested
with both moral imperative and moral capital.5
Second was the conjunction of cancer and gender, articulated on the mutually
reinforcing terrains of female beauty culture and celebrity, the former, with its
particular fetishization of female breasts, and the latter, which amplifies the body
reflexive imperatives of feminine capital. Jolie’s particular status as public body—
“the most beautiful woman in the world”6—both jarred with and provided an
additional interpretive frame for her perceived bravery to disclose, to acknowledge
herself as genetically “flawed,” and to undergo a gruelling remedy. Perhaps
the most prominent motif of the reportage of this event was the continual and
Ethical imaginary of cancer 151
disturbing juxtaposition of stock images of Jolie’s face, lips, and breasts with sober,
at times highly technical, explanations of genetics, breast cancer markers, citations
of risk, and graphic accounts of mastectomy and reconstruction surgeries (including
Jolie’s own procedures). Indeed, it was specifically the willing sacrifice of her
breasts, which along with her face have been central to Jolie’s feminine capital,
which both jarred with and amplified her personal cultural stature. Her own article
precisely addressed this unease by asserting that in so doing, she did not see herself
as sacrificing her femininity or self-understanding as a woman.7 Significantly, the
media response to Jolie’s follow-up article (Jolie 2015), focused on her more recent
decision to pursue a preventive double oophorectomy, while widely reported, had
little of the amplified projection that attended her earlier surgery.8
Of particular relevance to this chapter, however, was a third theme, the framing
of Jolie (in part constituted by her framing of herself in her original article) as an
edifying subject. As suggested in the selected headlines above, both the concern
and the plaudits that greeted the news of Jolie’s decision were filtered through a
permissive-imperative vernacular of “inspiration.” On one side of this was the
construction of Jolie as a barrier-breaking and empowering figure for the ordinary
woman: that is, if “the most beautiful woman in the world” could come to this
radical decision, this would ameliorate the stigma or desolation of mastectomy
(and hold out the promise of restorative reconstruction). At the same time, Jolie’s
personal wealth insulated her entirely from the gross inequities of health care that
constrain the choices, availability, and quality of care available to most Americans
(and indeed, to most non-Americans).9 This, plus the particularities of her own
medical history (and the realities: (a) that most cases of breast cancer are not
correlated with BRCA gene mutations; and (b) that, by contrast, having a BRCA
mutation does not determine that one will go on to develop breast cancer) means,
however, that her situation cannot be globalized. Notwithstanding these considera-
tions, the “inspirational” framing of Jolie has proliferated in and through the cancer
imaginary (see Figure 8.1), as head shots of Jolie appear as part of a triumvirate
of stock photographic cancer referents,10 alongside the ubiquitous iconography of
the mammogram11 and the photographically rendered cancer cell.
The dominant motifs surrounding Jolie’s story are not new. Rather, they
represent an amplification of what this chapter will argue are normative institu-
tionalities and everyday non-remarkable sensibilities surrounding cancer. Jolie
stepped not only into an established medico-commercial cancer industry (and a
peculiarly American one at that), but also into a relatively recent mode of cultural
discourse that has reconstituted the cultural status of cancer and of the medico-
morality of patienthood.
Signification and the cancer imaginary

In its examination of a distinctive trajectory within the signification field of
cancer, this chapter deploys analytic resources drawn from critical discursive and
cultural psychoanalytic traditions within media studies and is located centrally
within a feminist social semiotic tradition.12 First, drawing from a long tradition
of feminist semiotic studies of advertising (Williamson 1978; Mort 1996; Nixon
1996; Kilbourne 1999), it focuses on a specific advertising campaign—that of the
prominent USA cancer hospital Memorial Sloan-Kettering—as a case study of a
larger significatory field.13 The campaign, on the one hand, directed to a very
particular and arguably narrow middle-class demographic, at the same time
both draws from and reinforces tropes of cancer survivorship and patienthood
that constitute a terrain of popular intelligibility beyond its own particularities
and parameters. Advertising is not produced in a vacuum. Rather, it is a mode of
utterance, deployed in and as narrative or discursive fragments, whose intelligibility
Figure 8.1 Event Flyer circulated via Facebook, Congregation Tikvat Jacob http://ctjmb.
org/ (see also www.theguardian.com/society/2014/sep/19/angelina-jolie-
breast-cancer-study)
presupposes a wider, shared meaning field, a realm of common sense, in other
words, that enables the viewer to fill in what is invoked without having to be spelled
out. This chapter is thus interested in what might be termed the field of intelligibility
that constitutes (and reciprocally is constituted by) the distinctive features of the
Memorial Sloan-Kettering advertising campaign as a point of reference for a larger
constellation of public cancer discourse and popular cancer meanings. Second, in
social semiotic terms, the chapter is also interested in the intersection of repre-
sentation and social relations. This begins with a foundational understanding
of signification as both materially constituted and materializing. I refer here to
Butler’s (1993a) understanding of signification as embedded in and constitutive
of material reality, rather than epiphenomenal to it. This is in part because
representation is anchored in and both produced and consumed through material
institutional contexts and processes. Media cultures, in other words, constitute and
are constituted by not only circuits of meaning (Johnson 1986–7) but by circuits
of material relations.14 In addition to filling in, a further dimension of the material
anchoring of signification is affective—the modes of attachment (or repulsion) that
engage viewers (and producers) in a project of meaning and that, in turn, sediment
and fill out public discourse. The Memorial Sloan-Kettering advertisements thus
constitute not only a mode of public understanding of cancer, but public feeling.
This chapter also engages (and engages with) several further framing resources.
First is Sontag’s seminal critique of the (destructive) cultural dimensions of cancer,
set out in Illness as Metaphor (1990). Second is Sander Gilman’s (1991) concept
of “transvaluation,” which he used to describe instances of critical reversal of
the negatory character of racial discourse (for example, “black is beautiful”). And
third is Frank Mort’s (1987) study of “medico-morality,” which explores the
moral-discursive character of medicine and its triangulation with politics, popular
commonsense and, in his case study, the historical regulation of gender and
sexuality. It is also important to note that this chapter takes some of its impetus
from the growing cluster of studies specifically interested in the political, economic,
and cultural dimensions of cancer. These include critical assessments of the
pinkification of breast cancer15 (King 2006; Ehrenreich 2009; Sulik 2011); critical
evaluations of the turn to “evidence-based medicine” (Goldenberg 2012); and
meditations on the ontological conflicts and ambiguities that underpin cultural
as well as clinical paradigms of cancer patienthood (Stacey 1997; Jain 2007;
Klawiter 2008). Of particular relevance here is Jain’s (2007) exploration of the
temporal-ontological imperatives embedded in the public as well as clinical
imaginary of cancer.
Cancer in advertising: medico-commercial discourse

MEMORANDUM: Date July 14, 2001. To: Cancer. From: Barbara. Your Occu-
pation in my body has been officially terminated. Effective Immediately.
Sincerely, Barbara.
(Memorial Sloan-Kettering Cancer Center,
Advertisement 2009–2013)
Karen searched far and wide for the right breast cancer treatment. Then she
moved 750 miles to get it.
(Dana-Farber/Brigham and Women’s Cancer Center,
Advertisement 2009)
18 MONTHS after cancer surgery, a young woman celebrated the one year
anniversary of when other hospitals said she would die.
(Mount Sinai, Advertisement 2010)
At 14, Ryan Wenke faced losing a leg to bone cancer. At 15, her biggest
problem was which boy to go to the dance with.
(Mount Sinai, Advertisement 2009)
I’m here today because I never quit fighting my cancer.

(Novartis, Advertisement 2010)
Hail to the Victors Valiant.

(University of Michigan Health System, Advertisement 2009)
Hey Cancer Kiss My Butt.

(Cancer Research UK/Tesco, Race for Life,
Advertisement 2013)
In 2009, following a year of cancer treatment, I began to systematically collect

an archive of cancer-related advertising across both print and television formats.
Owing to my circumstances, and not, I suspect, unlike other cancer patients, I
became hyper-aware of public cancer discourse. Advertising struck me particu-
larly, in part because it seemed to triangulate, to exactly encapsulate, and also to
deny, the frequently irreconcilable and overwhelming cross-currents of clinical,
intersubjective, and cultural expectation on the one hand and, on the other, the
material realities that colonize the day-to-day life of a cancer patient.
The archive I amassed16 includes print advertising (the main focus of this chapter)
as well as television advertisements. Print advertisements are predominantly from
internationally circulated USA magazine sources, focusing in particular on The
New Republic, The New Yorker, The Atlantic, and the New York Times Magazine.
Some were also drawn from sources I encountered in the UK, for example from
Elle (UK) and InStyle Magazine (UK). The archive includes 23 separate print
advertising campaigns, many of which ran over a number of years (some are still
running) with multiple versions of the basic format. These campaigns include cancer
hospitals, charities and charity events, health insurance, cancer research, and cancer
support services. The television advertisement archive includes examples from
Canada (including those imported from the USA) and the UK.
All of the campaigns I have examined share a number of features. First, as already
mentioned, is the longevity of a number of their formats. For example, Memorial
Sloan-Kettering Cancer Center has six versions of the same advertisement that
have been running regularly (and interchangeably) in the New York Times
Magazine for at least the past 4 years.17 Four other campaigns took this approach
(Cancer Research UK, “Cancer we’re coming to get you”; Dana-Farber/Brigham
and Women’s Cancer Center, “Amy,” “Karen”; MD Anderson, “Making Cancer
History”; Mount Sinai, “Another day, Another Breakthrough”). All of the
television advertisements either produced multiple versions of a comparably
formatted cancer-related advertisement (MacMillan (UK); Princess Margaret Race
for the Cure (CA); Gardasil HPV Vaccine, “I chose” (USA/CA)), or represented
a cancer-focused “episode” from a larger series (BUPA (UK)).
Second is their character as advertising. Advertising is a distinctive media context
and a point of convergence for multiple institutions, in this instance a nexus of
clinical, pharmaceutical, charity-activist, research, and commercial interests.18
Advertising both represents and deploys discursive resources for wider public
understandings, sensibilities, and imaginaries, articulating modalities of production
and consumption and standpoints of author and viewer. This is perhaps most
powerfully articulated in the context of medical and pharmaceutical advertising
(pervasive in the USA and Canada), which commercial, educational, and public
health idiomatics uncomfortably elide (see, for example, Mamo and Fosket 2009).
It is certainly the case that unless one is a cancer patient (or involved with one),
understanding of cancer comes primarily through cultural intermediation and
media-cultural policy, of which cancer-related advertising is least confined to the
niche audienceships that characterize cancer’s representation in arts, literature, film
and television, and even digital media. Even the daily news does not include daily
news about cancer. Where audienceship of the latter (representations in literary,
artistic, and other media forms) is generally sought, for advertising, audienceship
is for the most part captive.19
A third aligning feature of my sample, particularly accruing to the magazine
advertisements, is its consistent address to a middle-class preferred readership.
This is constituted not only as an extension of the target demographic of the
magazines, but also of the idiomatic location in discourses of consumer/rational
choice and presumptions of capital, including high degrees of literacy and educated
entitlement.20 Perhaps the most powerful feature of the campaigns I followed
(televisual and print), and exemplified across the tag lines quoted above, is their
articulation of commercial, medical, and moral-discursive meanings, presenting
not only products (e.g., cancer services, cancer information, cancer insurance)
in the marketized frame and middle class idiom of consumer choice, but also a
language of moral imperative, most prominently personified by and deployed
through the first person address of the cancer patient. As suggested in Mort’s
(1987) foundational study, morality in this context does not simply refer to a
set of particular moral ideological principles or propositions, but also to a modality
of imperative—agentful, affective, intersubjective, and materially-institutionally
mediated. It is this latter point with which this chapter is most concerned and
that emerges most forcefully across the sample, in a number of common tropes,
vernaculars, and modes of address, and is potently elaborated in the Memorial
Sloan-Kettering campaign. The classed assumptions built into the contexts of its
distribution, as I shall argue, also articulate—through the nuances of its address
to and its reconstitution of its primary demographic—a preferred modality (and
preferred morality) of survivorship.
Nearly all of the campaigns I encountered use the trope of the first person address,
with their attendant, insistent, instructional summons to the reader. One of the first
advertisements I encountered in this context was for Gardasil HPV vaccine (2008),
which was screened, it seemed to me at the time constantly, and which aggressively
encapsulated this trope. Its tag line, spoken face front to the camera by an edifying
every-girl-cum-every-patient-cum-responsible consumer: “What would I do to
protect myself? Anything I can” (my emphasis).21 The testimonial form of first
person advertising campaigns has a number of effects. First, they draw subliminally
on a peculiarly American version of confessional/testimonial, itself a discursive
hybrid of social justice activism (the Civil Rights Movement, consciousness
raising) and self-help therapeutics (Epstein and Steinberg 2003). They also, at
least at first glance, appear to humanize the subject of cancer—in both senses.
They suggest a locus of humanity (which counters cancer’s existential threat)
and they offer a containment of cancer’s meaning to the individual and their
world. They also offer an ordinary mode of discourse—from me to you—that both
supersedes and offers a place of personal recognition and projective personal agency
that, by right, will not be overwhelmed (either by being blinded with science or
corralled by treatment regimes).
In the discussion that follows, I will explore the Memorial Sloan-Kettering print
advertising campaign, focusing on one particular exemplar from the series, “From
Barbara,” to more closely examine this significant strand of the discursive, medico-
commercial logics, languages, and visual repertoires of the cancer culture. The
Sloan-Kettering campaign, which at its core is a hospital touting for business,
emblematizes a ubiquitous culture of medico-pharma advertising and is itself an
artefact of the interlocking of medical and commercial interests and of medical
services with a commercial–industrial complex and a corporatized popular
imaginary.
My discussion of this campaign is concerned with three overarching subjective
tenses as they are elaborated through the visual, linguistic, and compositional
elements that constitute the Memorial Sloan-Kettering brand. These are what I
have termed, on the one hand, the edifying I—the “I” asserted as exemplary subject,
and on the other, and accruing to the exemplary subject, the exhortative you—the
consequent requirements of you, the reader/addressee. Both are modes of address
that imply a morally ordered imaginary and a hierarchy of relative standing vis-
à-vis self and other. The third subjective tense, implied rather than addressed, is
the I estranged, outlier subject, neither edifying nor addressed.
“From Barbara”: cancer, commerce, and cultural affect

The ad, “From Barbara” (Figure 8.2), is one of a long-running print-advertisement
campaign by Memorial Sloan-Kettering22 that includes 6 separate first person
images—of which 5 feature women, and of which 5 present subjects who are white.
Between 2009 and the present, it has appeared as part of a repeated sequence in
the New York Times Magazine. As already noted, the campaign is characteristic
of a wider medico-commercial discourse particularly as it is deployed in the USA,
where private medicine and private medical insurance are the norm and the
hegemonic cultural expectation.23
Memorial Sloan-Kettering Cancer Center is one of the most established and
largest private cancer hospitals in the world. It is considered (and presents itself
as) the leading center of excellence in cancer research and treatment and has
considerable popular as well as clinical and scientific cultural cachet as offering
top of the line in cancer services. As a brand, Memorial Sloan-Kettering carries
a superordinate capital as a source of cancer expertise, clinical and research
authority, and particular effectiveness in a clinical field in which survival is
typically characterized in terms of heroic struggle or war (though a war that
is not necessarily going to be won).24
The sequence for this advertisement includes 6 separate images (of which 5
feature women, and of which 5 present first person subjects who are white). All
of the adverts share a compositionally identical presentation (see Figure 8.3), with
comparable, defiant “I stood up to cancer” messages addressed in writing to cancer
itself:
Cancer, My hair has grown back. YOU haven’t.

Sarah
Cancer, You said I’d never have children. My daughter says you’re wrong.
Michelle and Maddie
To: Cancer. From: Barbara. Your occupation in my body has been officially
terminated. Effective Immediately.
Sincerely, Barbara
Cancer, NICE TRY.

Sincerely, Larry Rawson
Hey Brain Tumor, We are so over.

Colleen
In its framing of cancer as antagonist, the campaign recapitulates a central trope

of the cancer imaginary. However, there is a pointed shift in the ways in which
that trope articulates with the cancer patient as assertive protagonist. This is a
transvalued cancer imaginary, focused on (and transformed by) the ordinary
person as cancer fighter. In this transaction, cancer’s virulence is taken down a
peg: a petty thief, a bad worker, a bad boyfriend. The framing referent is an
aspirational return to normal, a twin fantasy that first proposes that once you are
done with cancer treatment, you are done with cancer; you are back to your proper
life—not only the life that cancer interrupted, but indeed the life you were meant
to have. At the same time, the visualized return is told in domestic normativities.
In the stories of “Barbara,” “Rebecca,” “Larry,” “Sarah,” “Colleen,” and
“Michelle,” there is an oscillation between the grand and the domesticated.
Similarly, each tableau frames a quid pro quo, a social contract in which will (what
one is prepared to do, intends or chooses to do) is the currency of exchange, rather
than (and standing in for) what one is prepared to (or able to) pay. This contract
is spelled out in the narrative arc of the biographies, by which we learn of the
chosen journey from cancer to health, intermediated by Memorial Sloan-
Kettering’s superordinate expertise, profoundly underscored, as emphasized in first-
name references, by its investment in persons. There is also the tension of the
compositional and the real that infuses this campaign (and the others like it) with
a mode of moral standing that is at once a posture (we are accustomed to the actor-
as-real-person in advertising) and yet at the same time unassailable because it is
constituted as both a banner of, and a shield for, what might in fact be a real, and
therefore vulnerable, person: the staged “Colleen” may actually be Colleen.
The edifying I: genre, text, and trope

As we can see from Figure 8.2, the advertisement compositionally foregrounds
“Barbara,”25 a cancer “survivor,” in a dual first person address both “to cancer”
and to the reader, by means of a typed memorandum. Also in the foreground is
the all-caps, rather stunningly obtuse primary tag line:
CANCER. WHERE YOU’RE TREATED FIRST CAN MAKE ALL THE

DIFFERENCE.
The name and logo of Memorial Sloan-Kettering Cancer Center appears below
the tag line, in small font next to a brief biographical narrative that presents the
“cancer-free” “Barbara” as both fait accompli and authoritative referent (as well
as referee) for Memorial Sloan-Kettering’s cancer services. More subtle is the
framing of “Barbara” as referent for a preferred cancer affect, a cancer cultural
imperative defined by a stance of self-assertion, clinical certainty, and ends-
guaranteed-by-means.
On first impression of the ad, a number of buzz words and phrases, including
a dominant trope of cancer survivorship, stand out. These include “aggressive”
(cancer), “frightened but determined” (“Barbara”), “better outcomes,” “depth of
experience and expertise . . . the latest, most advanced therapies” (Memorial
Sloan-Kettering cancer services), and “quickly defeated the cancer.”
The note displayed by “Barbara,” face front to camera, is a peremptory
memorandum. It is addressed to cancer as a personification and is written in a
familiar managerialist idiom of the office. It offers a callously brief termination
notice. Underlying this visual pun (which operates at multiple levels) is a notion
of deserved brutality that accrues as much to the (putatively failed) worker who
deserves nothing better than to be sent packing as it does to (the malignancy of)
cancer. The visual composure positions “Barbara” as a point of identification in
Figure 8.2 “From Barbara”

Source: http://digobrands.com/memorial-sloan-kettering-cancer-center/
(a) (b)
(c) (d)
(e) (f)
Figure 8.3 Memorial Sloan-Kettering Cancer Center advertising campaign

Source: http://digobrands.com/memorial-sloan-kettering-cancer-center/
an alignment with managerialism itself—indeed with its most brutal and aggressive
variant. In psychoanalytic terms, there is splitting26 at a number of levels. The
allusion to an inadequate co-worker or subordinate domesticates the existential
crisis of cancer. Cancer treatment, framed as a firm directive, diffuses its gruelling
rigors and dangers. This staging of “Barbara’s” moral/professional rightness
suggests an underlying proposition that she does not (we do not) deserve to have
cancer, that cancer is an injustice, and that a contract, in which “Barbara”/we should
live cancer-free, has been violated. Cancer is a wrong that implies an entitlement
(and power) to set right. Likewise, “beating cancer” is a reciprocal metaphor of
personal vindication and a corrective through which one might claim one’s “true”
standing.
The details of visual composure are also significant. By her dress, personal style,
and pose, “Barbara” is styled as a professional, but one in a feminized occupation.
She wears an attractive buttoned-up blouse (but not a suit); she is groomed but
not trendy, mature without being matronly, serious but without the graphic
signifiers of upper (or perhaps even middle) management. Her costume evokes
possibly a bank worker or mortgage advisor (rather than a hedge fund manager),
a paralegal (rather than a lawyer or judge). She fits a trope of “working woman”:
she presents as educated, she works in a professional (though not particularly well
paid) sector, she may be single (she does not have a wedding ring); she bears the
modest trappings of middle-class success without any suggestion of affluence. This
impression of “Barbara” is cemented by the memorandum—something that
someone in a comparable position to “Barbara” might imaginably receive or type
up (the memorandum in and of itself strongly evokes the feminized occupational
roles of secretary or office manager), but would not otherwise have the status to
issue. The class inflections that frame “Barbara” emerge from and are cemented
through the narrative logic of the ad’s turn-the-tables dénouement—“Barbara’s”
memo signals a vindicating power reversal in which object and subject switch
places—she who would receive a termination notice, will now issue it. The life-
and-death terrain of cancer adds both freight and weight to the otherwise unsubtle
double entendre of “termination” and its simple reversal. In the period of its
circulation, this imagery may have carried particular resonance as many people
like “Barbara,” in the midst of recession, might have been receiving termination
notices or lived in any case with the normative impermanence of such positions.
By any interpretation, however, “Barbara,” like the other figures in this campaign,
signifies an “ordinary” working person. That she is presented as a normative (even
“preferred”) patient for Memorial Sloan-Kettering carries an implication of
egalitarianism: this, the “best of hospitals,” is not only or ideally for the affluent.
This speaks directly to the anxieties of a culture in which extreme inequities of
healthcare are the norm. The notion that someone like “Barbara” could not only
access a gold standard hospital like Memorial Sloan-Kettering, but represents their
regular and indeed sought after pool of patients, is a powerful draw.
The particular interlocking of gender, race, and class in the imagery of “Barbara”
is complexly intertwined with the array of figurations in this series. She appears
on the one hand as a lone black figure in an array of white figures. At the same
time, she is presented as one of a diverse series of “ordinary patient” tropes (older,
younger, single, married, male, female, black, white). Together these images cross-
cut gender and race (though less obviously class, since all are on a middle-class
spectrum). This fills out an underlying implication in the array, which suggests,
“cancer doesn’t discriminate; and neither do we.” This is a sensibility I have found
in other cancer imagery and not limited to the USA. It is, for example, the explicit
tag line (“for women like me”) of the television advertisement for Well Woman
cancer insurance offered in the UK, with its interchanging multi-ethnic spokes-
women, and of the pink ribbon campaigns in a number of national contexts.
“Barbara’s” facial expression is complexly evocative. She is not, as the textual
cliché in the advertisement describes, “frightened but determined.” She appears
instead determined, fierce, superordinately entitled. On her face and in her pose
is an unyielding determination. Her eyes, frontally direct to the reader, evoke a
transitive adversarial transaction against that which—or who would—obstruct or
impede or threaten. Her expression is firm, implacable. Juxtaposed with the text
and particularly with the memo, there is an implication that “Barbara” is the one
who is in control, that we are witness to the results of her agency. There is a subtle
air of triumphalism in her pose and expression, an implacability, a suggestion of
unwillingness to compromise in any way with a powerful enemy whose power
cannot be acknowledged—nothing but unconditional victory will suffice. Even
though, in fact, cancer patients can and do “lose,” as the advertisement text itself
euphemistically acknowledges in “Barbara’s” bio: “she chose Sloan-Kettering
Cancer Center where patients often have better outcomes than those treated at other
hospitals.”27
“Barbara’s” expression, along with the notion that “she chose,” also signifies
a kind of transferred agency. The medical personnel who treated her and the
regimens of her treatment are not mentioned. While the advertisement is for
Memorial Sloan-Kettering cancer services, the imagery elides and transfers this
agency to “Barbara,” the patient who chooses. It also posits a bargain for survival
located primarily on the terrain of morality. There is here a kind of quid pro
quo, which suggests that the unequivocal and insistent insertion of oneself into
“the cutting edge of treatment” (“Barbara’s” choice) will pay off in a moral
entitlement (as opposed to a probable outcome) to be “cancer-free” (“Barbara’s”
affective pose).
Judith Butler (2004) has argued the representational currency of the face to
convey (or repudiate) humanity and grievability. In the context of cancer, the focus
on “Barbara’s” face ostensibly does this. But it also does something else. In its
pose of implacability, it also refuses humanity in a denial of the possibility of death
and loss. It is, in this sense, the obverse of the Levinasian face (1985): it is all
form. Its vulnerability is spectral, forgotten.28 Certainly it leaves estranged the
grievable humanity of the cancer patient who is not “at war” with cancer, who
would not issue brutal memoranda of dismissal, who would not view cancer as a
nefarious personification, separate from herself, or who cannot (or will not) fulfil
the imperatives of action and affect that make up cancer’s requisite “bargain for
survival.”29
Exhortations (the “exhortative you”)
As emblematized in the “From Barbara” exemplar, the Memorial Sloan-Kettering
campaign both forges and relies on a particular kind of bioethic that is constituted
through exhortation to the reader—an issuing of imperatives of affect and action
that constitute a social contract of witness (in this instance to “Barbara’s” situation
and choices).
There is, first, an imperative “will to live.” That is, we are presented with both
a presumptive obligation and imperative to “choose to live,” to be unwilling to
compromise, that nothing else can possibly be accepted. There is no room for a
choice to refuse treatment, or to doubt the efficacy or desirability of the “cutting
edge” of treatment.30 There is an implicit immorality and, perhaps more than that,
a morally infused unimaginability that one might not “choose life” or want life.
Second, and accruing to this first imperative (to will to live), is a corollary
imperative to invest and, indeed, to invest aggressively but at the same time without
need for details or particular understanding, in the normotic phantasy31 of expertise
and control vis-à-vis “cutting edge” therapies. In fact, the “latest” and “most
advanced” therapies in the cancer field are frequently the most untested and most
likely damaging to the patient, with neither their effectiveness nor their safety
having had time to be established. Even where this is not the case, cancer treatment
is inescapably damaging, if not devastating to the body.32 Rhetorically, however,
“cutting edge treatment” carries a very different set of connotations—a twin
projective investment, on the one hand, in the power of medical science and, on
the other hand, in subjective entitlement to a particular outcome as a (just) reward
for one’s willing, even insistent, submission to it. Both are faith-based transactions33
built on a normative mode of believing in, as distinct from believing. In this
instance, faith in treatment is presented as a peculiar kind of wager. The willingness
to undergo treatment’s “cutting edge” takes on a talismanic power. What it
promises to confer is not so much “freedom from cancer” as it does moral
standing, a certain brand of cultural entitlement and recognition as an edifying
subject. Standing is the primary bargain. Symbolically it is, and also stands in for,
the “better outcome.” The simple fact, however, is that nothing can guarantee a
cancer-free life.
Rational agency
The Memorial Sloan-Kettering campaign carries strong allusive references to
rational agency. “Barbara’s” story and her pose both invoke and disingenuously
deny the question of choice, not only at a personal level (what one may choose
for oneself), but also in terms of the larger social realities that dictate whether and
to what extent one is in a position to choose. In the logic of the ad, “Barbara”
chooses. Her path and her outcome are presented as questions of (her) personal
rational agency. The primary terrain of her choice is her own (responsible, strong,
possibly informed) character. It is implied but not acknowledged that “Barbara”
has the means—the human, social, and economic capital—to make such a choice.
It is worth noting that the Sloan-Kettering advertisement campaign both pre-dated
and post-dated “Obamacare” legislation in the USA ostensibly aimed to
universalize rights and obligations to health insurance.34 There is an assumption
that it is only “Barbara’s” intent (as opposed to the state of her health insurance,
the terms of her employment contract, her geographical location, her personal
means, her familial responsibilities, or the decision of Sloan-Kettering itself to
accept her as a patient or not, just to name a few) that determines whether or not
she can be treated at her choice of hospital.
Competition and medico-commerce
Where you’re treated first can make all the difference.
The immediate national/social context for the Sloan-Kettering campaign is defined

by a presumption that medicine is an arena legitimately characterized by corporate
management, marketization, and competition.35 The notion that “where you are
treated first can make all the difference” cannot but have a disquieting (if probably
unintended) subtext in a society and a healthcare context riven by extremes
of inequality. It entirely negates the question of why “you” shouldn’t be able to
count on quality healthcare wherever you are treated. The conceit that attaches
to “Barbara’s” choice is the fallacy of the “discerning” patient in a context of
corporatized medical care. It is a fallacy that operates at two levels. First, it recon-
stitutes the patient with “better outcomes” in terms resembling connoisseurship.
There is a connotation of class distinction that implicitly attaches to the discerning
consumer. Thus, while “Barbara’s” persona evokes liberal egalitarianism, this is
belied by her (ability to have) discriminating “taste” in hospitals. The second fallacy
is that personal choice not only can and always does trump social context and
social position, but that that it ultimately trumps mortality.
Phantasmatics
The persuasive power of the Memorial Sloan-Kettering campaign is in part forged
through powerful meta-level cultural fantasies,36 all of which constitute phantasies
of action (that is the phantasy of the restoration of self-agency against the threat
of loss).37
First is the fantasy of turn-the-tables justice and vindication in which the “little
guy” in a low-ranking and unappreciated job gets to (finally) call the shots (she
who can terminate, rather than be terminated). This is elaborated through a further
fantasy of capital—of having the means to make the choice of the gold standard,
and of having human capital—to be she who recognizes the gold standard choice.
Underlying both is a normotic phantasy constituted by a resolute and positivistic
investment in the power of science and expertise and, in so doing, in the phantasy
that all can be known and controlled. It is in this context that treatment takes on
its totemic status—an object of faith, rather than a brutal reality with an equivocal
and insecure, at best, relationship to survival.
Powerful in this context too is a narcissistic phantasy of having elevated moral
capital and standing: to be the edifying I, she who can exhort rather than be exhorted,
who can be the subject of phantasmatic identification, admiration, and aspiration—
here it is both cancer and one’s particular pose in the face of cancer, combined—
that produce the self as not only important, but of elevated importance. It is a
romantic fantasy, the imprimatur of noble battle, which adduces consolation in
heroism and pathos. This is a potent appeal, a promise of redemption and of rescue
from personal or social marginality, of spiritual compensation for the radical
uncertainties and brutal physical exigencies that can attend the experience of cancer.
This transvalued cancer patient would seem to be the antithesis of the repudiated
subject described by Sontag in Illness as Metaphor. This is a construction of the
cancer patient, not as a figure of pathos or cultural revulsion, but as edifying ideal:
indefatigable and with an implacably affirmative investment in the normative social
relations and exigencies of medico-commercial institutionalities. As a female
figuration, moreover, the self-assertion modelled in “Barbara” has an additional
seductive and connotative capital—as a figure of justice, a “feminist” idealization
of self-agency, admiration, and vindication.
I estranged
The Memorial Sloan-Kettering campaign elucidates some of the most powerful
phantasmatic projections in the current popular culture of cancer, one in which
the popular and clinical imperatives of cancer patienthood collide, and that are
suggestive of the underlying social contract of late neoliberalism. The repertoires
in play in the Sloan-Kettering example suggest deeper values at stake: values of
self-assertion, repudiation, and distanciation lived out simultaneously as preferred
moralities. Perhaps most poignant of these is the imperative estrangement that
epitomizes all three.
This imperative estrangement is perhaps most powerfully articulated as the denial
of loss. Drawing on Johnson’s (1999) understanding of mourning and loss,38 I
would suggest that the Sloan-Kettering campaign articulates a standpoint of
melancholia—a refusal to mourn, a repudiation of loss and death, an insistence
that we can choose to live, that life can be willed. It is in this context that the
often extreme rigors of cancer treatment can be re-construed as a sacrificial
bargain through which one earns (back) life. Affective awareness of the tentativity
of this promise is pointedly refused—in “Barbara’s” figuration, a termination notice
that brooks no ambiguity or wasted words. Embedded in this denial of loss is the
repudiation of the body—the impossibility of seeing one’s cancer as oneself, and
the necessity of understanding the exercise of self-destruction (cancer treatment
involves some of the most destructive things, short of death, that one can do to a
human body) as a signifier only of self-recuperation.
A second imperative estrangement lies in the phantasmatics of transferred
agency. The exemplary patient presents, on the one hand, in the first person a self-
asserting “I,” and yet at the same time cathects this agency (in which there is
no imagined dissent, discomfort, resistance, refusal), in a resolute turning over
of herself to clinical protocols and expertise. There is no requirement or expectation
for her to research or understand these protocols. In this cultural imaginary, the
exemplary patient—like the exemplary citizen—asserts, chooses, and desires, but
only within the bounds of normotic governmentality: this is a citizenship solely
defined by the will to consent.
A third imperative of estrangement is temporal. Jain (2007) has described one
aspect of this in her discussion of “living in prognosis” as the radical and requisite
displacement of oneself from one’s own life. Life in prognosis is contingent life,
a limbo in which one must wait for an “all clear” from without, to return to one’s
self, return to living. There is a corollary order of temporal estrangement, what I
would term the requirement of deferral, in which one repudiates the now in
exchange for later, exchanges the habitation in one’s present life for a phantasmatic
futurity. In this deferred space, the brutality of a now in treatment is transmogrified
by a promise of future life. Indeed, phantasmatic futurity provides the rationale
for present brutality. We see this in the framed standpoint of “Barbara”—who issues
brutalities as a moral entitlement that accrues precisely from her standing as a
survivor, and who stands in for survival itself, where survival is what is later. In
its transvalued variant, cancer is understood to obviate life now, to set in motion
an imperative of disassociation in order to buy time. What is lost in this transaction
is a fundamental reality of life—life is only now. Futurity is always notional.
Imperative estrangement in the wake of cancer also disallows consideration
of the quality of now. There is no place in this imaginary, for example, for the
choice of a treatment-free now that will be short—as distinct from a treatment-
bound now that may be unbearable, done for the sake of more time, and that may
be (or in some cases will almost certainly be) short anyway. There is no room for
the acknowledgement that life in prognosis is also a form of now.
Conclusion
Lévinas might say: the main condition of care is an orientation, sensitivity,

and accountability to and for the face of the other.
(Blum 2017, p. 2, this volume)
I am writing about it now because I hope that other women can benefit from
my experience. Cancer is still a word that strikes fear into people’s hearts,
producing a deep sense of powerlessness. But today it is possible to find out
through a blood test whether you are highly susceptible to breast and ovarian
cancer, and then take action.
(Jolie 2013)
I would like to conclude this chapter with three emergent themes that constitute
the imperative field of cancer—of which the Memorial Sloan-Kettering campaign
is particularly evocative and that also links it, powerfully, subliminally, to the Jolie
exemplar that began this chapter. First is the strikingly neoliberal body-reflexive39
ethic that infuses the representational field of cancer. This is constituted through
repertoires of body-affective imperatives that are ruthlessly estranging and in which
self-assertion is phantasmatically secured through its obverse—subjection,
transferred agency, denial, distanciation. As Bell (2012) and others (Stacey 1997;
Klawiter 2008; Ehrenreich 2009) have suggested, it is powerfully evident that the
cancer patient is no longer a metaphor of hopelessness, or corruption, or tragedy
or shame. And yet, the terms of her transvalued capital seem no less disturbing:
the cancer patient as indefatigable. She works, she asserts, she chooses, she
speaks in the declarative. The social conditions of her life, even the biological
conditions of her life, are not consequential, or not as consequential, as her
personal determination and will. Her life models ours. And ours, as a logical
corollary, are obliged to model hers. This is the quintessential neoliberal subject.
And it is also the logic, and moral closure, and occasional unease that greeted
Angelina Jolie’s aggressive mode of action, juxtaposed with the softly measured
tone of her disclosure, as she presented at one and the same time as a powerful
public figure and also a vulnerable person. In this context, both constituted a
particular kind of moral capital, a moral capital that made it crass and insensitive
to introduce doubt or uncertainty about her understanding of genetics, or the
extremity of her decision, or even the terms of her reception as “brave.” Much as
it might seem crass to critique the framing of the staged “Barbara,” because there
might be an actual—“she” might actually be—Barbara.
Arising from this is a second theme, the idealized subject position of the
exemplary patient. She is foremost a public body, subject of and subject to the
imperative expectations of the wider culture. As potently evinced in the tropes of
popular culture, hers is a subject life interpellated40 into particular duties of affect
and action: duties of self-care, defined primarily or only by the exigencies of
treatment, and duties of feeling that are implacably affirmative and ruthlessly
oriented to the future. In this context, the social contract that offers moral standing
as a stand-in for, and a talisman of, survival, becomes an inspirational example
and a transferable public duty. The assertion of this subject doubly crowds out
her obverse—the bad patient, she who might not be interested in (or able to) march
forward, who might not be invested in life at any cost, or perhaps even at all, she
who is “not brave”—and indeed, what does a “not brave” cancer patient look like?
One might suggest, in this context, that “Barbara” and Jolie constitute mutually
reinforcing brave faces. The medical choices of Jolie, and the terms of her dis-
closure as well as its public reception, play out on (even as they are overdetermined
by) “Barbara’s” terrain. Jolie’s capital both leverages and is leveraged by the twin
bargain for standing as survival emblematized and embodied in the example of
“Barbara.” Both “Barbara” and Jolie are cast as elevated figures, ego ideals of
“bravery,” points of transference and transcendence. The powerful, phantasmatic
resonance of this/their survivorship trope in turn makes plausible the pervasive
interpretation of Jolie as one who has famously and pre-eminently battled (and
survived) cancer, even though Jolie did not have cancer. It has constituted the terms
of plausibility that extend cancer’s discursive reach into the pre-diagnostic,
transposing its imperatives of survival into “pre-vival.” Aranowitz (2009) has noted
a progressive convergence of risk of disease with disease itself. Jolie’s case both
exemplifies and also significantly leverages the persuasion of this convergence.
One of the effects of this leverage is both cultural persuasion and a widening
interpretive field not only of risk and immanent patienthood, but also of its terms
of estrangement. And it is this context, as Jain (2007) has suggested, that “living
in prognosis” can become universalized—a default, a litmus test, an expectation,
a normative status.
This is the critical place of phantasmatic projection. It is, in part, in and through
such projections that the representational relations of the cancer culture become
reciprocally anchored into its material relations. The melancholic interstices of
“bravery,” the hushed allusions to who has “failed” (see, for example, Bach 2014),
the modes of experience or affective stance (suffering, anger, resistance) that have
no place in cancer’s popular imaginary, constitute an imperative-interpretive field
infusing the terms of “survivorship” and “better outcomes” such that they can be
so ambiguous, so painfully equivocal, and yet in the end, so definitively invoked.
In the end, the idea that defiance and will are what produces outcomes—whether
that is survivorship for individuals or the oddly evacuated notion of “beat[ing]
cancer sooner” as the current (2015) Cancer Research UK campaign would
suggest—is seductive. It invests a stringently particular imaginary of cancer with
moral capital and social recognition: the cancer patient as culture warrior becomes
a deserving life. That these ideas can stand in for (and produce) “survival” is a
powerful lure and an extraordinary sham. They normalize a callous set of social
values—that repudiate pain, ignore reality, deny death, and reject the “failed.” The
cancer warrior as cultural symbol is, I would suggest, the duplicitous “brave face”
of cruel times.
Notes
1 A different version of this chapter was published in 2015 as “The Bad Patient:
Estranged Subjects of the Cancer Culture,” Body and Society 21(3): 115–43.
2 Two weeks following the publication of Jolie’s article, her maternal Aunt, Debbie
Martin, died of breast cancer at the age of 61, reportedly having also been diagnosed
with BRCA 1, but “too late.” Martin had been originally diagnosed with cancer in 2004
(Associated Press 2013).
3 Unfortunately, Jolie could still go on to have breast cancer, notwithstanding having
had a double mastectomy.
4 It is beyond the scope of this chapter to undertake a close analysis of the problematic
conflation of genetic risk statistics, which refer to “objective distribution in populations”
and individual risk (Konnikova 2013). It is important to note that the genetic risk
assessment is not, as it has been cited in this context, a mode of prognosis, nor a zero-
sum proposition. Understandings of genetic markers continue to be contested and
uncertain, even in the context of single gene “flaws” (see, for example, Spector 2012).
5 Jolie’s case represents the wider genetification of risk. See for example Lemke 2003
and 2004 (on genetic diagnostic imperialism); Gibbon 2007; Steinberg 2013, 2015.
6 A Google search of this association (Jolie, “the most beautiful woman in the world,”
mastectomy) brought up nearly 3 million references.
7 Jolie wrote:
It is reassuring that [my children] see nothing that makes them uncomfortable. They
can see my small scars and that’s it. Everything else is just Mommy, the same as
she always was. And they know that I love them and will do anything to be with
them as long as I can. On a personal note, I do not feel any less of a woman. I feel
empowered that I made a strong choice that in no way diminishes my femininity.
(2013; my emphasis)
8 Jolie’s second article was written from a far less certain and edifying standpoint, in
part, as she acknowledged, because this second surgery promised to be far less
normatively restorative than her breast reconstruction—she would inevitably undergo
a sudden and difficult menopause. This second article also explicitly acknowledged
the difficult terrain of choice accruing to family histories of breast and ovarian cancer
and to a BRCA mutation diagnosis.
9 Jolie noted the prohibitive costs of BRCA mutation testing in her article, and this issue
and Jolie herself became explicit reference points in the Supreme Court decision to
invalidate the patenting of “natural genetic material,” including the BRCA genes. While
the Court’s decision opened up a competitive market in BRCA (and other) gene testing,
this did not of course address the considerable ambiguities surrounding the relationship
between genetics and cancer, or between genes and disease more broadly.
10 Jolie characteristically appears either or both as textual referent and as a photographic
sidebar. See, for example, the reference to an “Angelina Jolie Effect” (Nicholson 2013);
to an “Angelina Jolie Gene” (see Figure 8.1); and to Jolie-framed dilemmas (Leung
2013; Jeffries 2014).
11 There is a certain irony in the continued framing of mammography as stock referent
for any and all cancer reportage even as the mammogram’s paradigmatic place in cancer
prevention has been radically ruptured (see, for example, Grady 2015).
12 I have discussed this constellation of strategies at length elsewhere. See, for example,
Steinberg 2009; Epstein and Steinberg 2003; 2007; 2011.
13 This approach can be distinguished from more quantitatively styled content-focused
studies that aim to map patterns of representation (see, for example, Haran et al. 2008;
Boden et al. 2008). While the latter approach primarily aims to make empirical-
observational (truth) claims about signification, the former is primarily focused on the
qualitative and inferentially framed question of “truth regimes.”
14 For more elaborated discussion (and interpretation) of this idea in relation to modes
of visual representation, see also Butler 1993b and Steinberg 2009.
15 These studies have been particularly concerned with the pink ribbon-led charity
movement and its role in constituting a pernicious mode of gendered corporatized culture
surrounding breast cancer.
16 I also followed a number of cancer-related televisual campaigns with particular focus
on the Canadian HPV vaccine series; televisual Run for the Cure campaigns in both
Canada (Princess Margaret) and the UK (Tesco); and two British private health
insurance campaigns focusing on cancer from BUPA and Well Woman Cancer
Insurance.
17 Four of the print advertisement campaigns I collected appeared in multiple versions
and this characterized nearly all of the television campaigns I followed.
18 While the questions of medical consumerism and marketization per se are not the focus
of this chapter, it is important nevertheless to note that they comprise a significant
dimension of context for a semiotic analysis of cancer advertising and have informed
key strands of the cancer culture literature. Medical and marketization are key
considerations of the literature on cancer pinkification and the cancer charity movement
(e.g., King 2006). See also Sulik and Eich-Krohm 2008; Sulik 2013.
19 While it is beyond the scope of this chapter to explore this in more depth, it is
important to note that digital media has exponentially expanded the mediatized
dimensions of the wider cancer culture. Not only does this enable previously localized
advertising to be internationalized (most of the print advertisements and many of the
television advertisements I have followed are available in the digital versions) but also
the particular tropes and repertoires of their composure. Thus, for example, some UK
charity advertisements deploy distinctively Americanized vernaculars of self-assertion
(“I choose,” “kick butt,” and so on).
20 It might also be argued that, embedded in the progressivist and democratic slant of
both the New York Times and the range of magazines in this selection, there is also a
strand of what might be described as a social progressive neoliberal ethos, which like
its more conservative or reactionary variants emphasizes initiative, self-assertion, and
assertive citizenship enacted through consumption and consent. Certainly, as this
chapter goes on to argue, these are the paradoxical values embedded in the Memorial
Sloan-Kettering advertising campaign.
21 It was this advertisement in particular that motivated me to begin attending to the media
culture of cancer.
22 The examples collected for this chapter ran between 2009–13.
23 It is beyond the scope of this discussion to elaborate on this point. But it is worth noting
that medico-commercial discourse is a distinctively marginal arena of advertising and
of wider popular commonsense in the UK. While the coalition government of the
moment is aggressively moving to privatize the National Health Service, it remains
the case that healthcare is free at the point of service and (as distinct from the provincial
health care system in Canada) includes subsidized prescriptions, thus obviating the
need for supplemental private insurance to cover outpatient drug treatments. While
advertising for cosmetic surgical treatments (mostly in lifestyle magazines), medical
charities, private hospitals, and private health insurance is to be found, it is not
pervasive and there is no culture of advertising for prescription pharmaceuticals (which
is illegal in the UK). Nor is medical care generally presented through tropes of
commerciality or competition or individualized/personal financial obligation.
24 Daniel Menaker (2011) elaborates on this point, referencing also a range of critical
literature (Sontag and Ehrenreich, for example) that considers the consequences of such
representations for patients and for the culture more widely.
25 Throughout I will refer to “Barbara,” where it is clear I am examining a figuration.
26 Splitting, in object relations theory, refers to the simultaneous processes of idealization
and repudiation as defences against anxiety and crisis (Klein 1975).
27 The phrase “patients often have better outcomes” is all but meaningless. Any hospital
could make the same claim. The phrase backhandedly acknowledges that patients also
have “worse” outcomes, while disclaiming that association with Memorial Sloan-
Kettering—even though logically, if the first proposition could be claimed, so could
its obverse.
28 With thanks to Stuart J. Murray (personal conversation) for this point. A relevant point
is made by Bell 2012, who considers the emergent languages of “teachable moments”
and “post-traumatic growth” in popular cancer discourse. I would suggest that these
too function as languages of imperative that at once reconstitute the moral capital of
the “survivor” as against her (our) entitled exhortation to the “you.”
29 There are two elements of denial here. First is the human condition that cannot
guarantee survival (whether from cancer or anything else), and that cannot evade death,
whether that is in the long or short run. And second is an affirmative choice not to
pursue heroic measures. Both, in this instantiation, are cast outside the imaginable moral
hermeneutics of cancer.
30 Indeed, there is no room to consider that the choice to treat at all will involve
devastating trade-offs with respect to quality of life, and there is no guarantee that that
the return on that trade-off will be life at all, let alone a “return to normality.”
31 My use of the term derives from Bollas’s (1987) discussion of “normotic” in the psycho-
analytic context. “Normotic illness,” as Bollas describes, constitutes the transformation
of the self into an ideal object, a virtual automaton of “normality,” totalizingly invested
in facts, utility, knowability, and rational control. Taken as a cultural description, a
“normotic phantasy” might describe the invested repudiation of what is subjective
(feeling, the body) in favor of an idealized ultimate rationality. As such, it can be
suggested that normotic phantasy underpins and constitutes the cultural “unconscious”
of modernity and scientific positivism, with their principled idealization of rational
utilitarianism, scientific objectivity (the repudiation of feeling and body), and the
overdetermined efficacy of science and the law.
32 Cancer treatments characteristically involve surgery (which may be disfiguring),
chemotherapy, and radiation. The rigors of treatment are detailed in patient information
sites. See, for example, www.macmillan.org; www.cancer.org.
33 Sam Harris (2005) discusses faith-based epistemic transactions in the context of
terror and formal religious affiliation. I would suggest however that faith epistem-
ology describes the imperative “feeling-knowledge” standpoint of the “edifying” or
“exemplary” patient. There is, in other words, a distinction to be made between believ-
ing something in the evidentiary sense and believing in something—a hauntological
proposition that is always already in defiance of evidence.
34 Health insurance remains far from universal in the USA. And health coverage for the
insured in the face of illness remains precarious. Nevertheless, the new legislation, as
it comes into force, does prevent insurance companies from refusing to issue policies
to those with pre-existing medical conditions.
35 The commercialized discourse of cancer emblematized in this Sloan-Kettering
campaign bespeaks a wider medical-corporate complex. For extended discussion of
the political economy of breast cancer and its relationship to wider issues in corporate
medicine, see particularly Kasper and Ferguson 2000.
36 I am distinguishing “fantasy” (conscious formulations of desire) from phantasy (the
underlying unconscious investments at stake in conscious fantasy).
37 The phantasy of action, in Freudian terms, is the defence against castration.
38 See, for example, Klein (1975), Kristeva (1992), and Johnson (1999) for elaborated
discussions of mourning (not mourning) and melancholia.
39 I extrapolate here from R.W. Connell’s (1995) understanding of masculinities as
constituted through iterative, “body reflexive” practices.
40 “Interpellation” refers to the ways in which we are, on the one hand, inserted into
discourse (regimes of meaning and practice) and, on the other, insert ourselves into
discourse.
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Leukemia and Lymphoma Society. “Someday is Today.” The New Yorker, March 2013.
Novartis. “I’m Here Today because I Never Quit Fighting My Cancer.” The New Republic,
April 2010.
“Oi, Cancer. You. Me. Outside Now.” Marie Claire (UK), May 2013
PhRMA. “The Country that Put a Man on the Moon Can Cure Cancer.” The New Republic,
April 2009; October 2009.
St. Jude Children’s Research Hospital. “Deanna vs Brain Tumor: You Can Help Her Win.”
Elle Magazine (UK), January 2011.
Smilow Cancer Hospital at Yale-New Haven. “It’s Not a Hospital for Cancer, It’s a Hospital
for People with Cancer.” New York Times Magazine, April 2010.
Susan G. Komen for the Cure/American Airlines. “Giving the Gift of Travel to Benefit
Breast Cancer Research.” The New Yorker, November 2009.
University of Michigan Health System. “Hail to the Victors Valiant.” New York Times
Magazine, 2009. See also University of Michigan Health System Annual Report 2014.
Accessed September 15, 2014. www.med.umich.edu/chs/images/CPS percent20FY14
percent20Annual percent20Report percent20FINAL.pdf.
US Oncology. “United We Fight: 1,300 Cancer Physicians. One Goal.” NewYork Times
Magazine, May 2010.
Weizmann Institute of Science. “A Microscopic Cancer Spy: The World Needs Our
Research. We Need Your Support.” New York Times Magazine, 2010.
Television advertisements
BUPA Health Insurance. 2009. “Feel Better”; “Emma Felt a Lump” (UK). Accessed
September 15, 2014. http://vimeo.com/59580953.
Cancer Research UK. 2015. “We’ll Beat Cancer Sooner.” Accessed September 15, 2014.
www.cancerresearchuk.org/about-us.
Gardasil (HPV Vaccine). 2008. “I Chose” (USA/Canada). Accessed September 15, 2014.
www.youtube.com/watch?v=gd4ypCXusrI.
Macmillan Cancer Support. 2013. “Not Alone” (UK). Accessed September 15, 2014.
www.youtube.com/watch?v=2BGrskynlGs.
Princess Margaret Hospital. 2013. “Race for the Cure” (Canada).
Protectasil (HPV Vaccine Parody). 2008. “Just Be a Smart Girl.” Accessed September 15,
2014. www.youtube.com/watch?v=Tvam_2s0Sq8.
RaceForLife. 2013. “Cancer We Are Coming to Get You” (UK). Accessed September 15,
2014. www.youtube.com/watch?v=GWJEmMDQXoA.
Well Woman Cancer Insurance (UK). 2009. “[Women] Like Me.” Accessed September
15, 2014. www.youtube.com/watch?v=iaJIpgAs9sM.
Other advertisements
Congregation Tikvat Jacob (Manhattan Beach, California). October/November 2015.
Flyer posted on Facebook for the event: “Know Your Risks with BRCA: A Closer Look
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[Events/Home Page] Accessed September 15, 2014. http://ctjmb.org.
9 The clinical epistemology
of Ludwig Binswanger
(1881–1966)
Psychiatry as a science of the
singular
Elisabetta Basso
Introduction
To consider Ludwig Binswanger’s theoretical reflection on psychiatry as one of
the contexts within which the concept of care can be conceived might raise some
objections, insofar as “existential analysis” (Daseinsanalyse) seems to fail on the
level of therapeutic praxis, that is, the level of concrete caregiving. Indeed, many
psychiatrists equate existential psychopathology with a vaguely ethical-humanistic
discourse on the care relationship focused on “listening” and “understanding”
the sick person, rather than considering his/her experience of suffering as a
pathological phenomenon to be treated in a medical context. In other words, this
experience is supposed to be a “form of existence” and not a disease. Thus, for
its detractors existential psychiatry does nothing but outline an anthropological
doctrine, which sets itself against all forms of medical psychiatry, considered as
“pathologizing.”
In fact, historically, since its foundation at the beginning of the twentieth
century, existential psychiatry has had an important role in the problematization
of psychiatry as a medical science. At the time of its first development within
German-speaking psychiatry, the phenomenological movement in psycho-
pathology was sharply critical of the positivistic approach to mental diseases
that characterized academic psychiatry at the end of the preceding century,
especially represented by Emil Kraepelin’s idea that psychiatry should share the
same premises and the same language of neurology and physiopathology (see
Hirschmüller and Whitrow 1999). It is in this critical context that some parts of
the academic medical world in Switzerland and Germany became interested in
the role that psychology could play within the field of clinical psychiatry. In this
regard, it is especially worth mentioning the interest that Eugen Bleuler and his
circle of psychiatrists at the Burghölzli in Zürich took in the first psychoanalytic
theories (Bleuler 1911), as well as the attempt by Karl Jaspers in Heidelberg
to build an “understanding psychology” (verstehende Psychologie) targeted to
elucidate the psychic genesis of the subjective psychopathological phenomena and
180 Elisabetta Basso
their connections (Jaspers 1913a; see Basso 2010). The main problem at stake,
at that time, was indeed the definition of the “nature” of the various forms of
psychosis—and, consequently, the location of their etiology—as well as the
clinical methodology needed for approaching their manifestations. This problem
implied a discussion about the ontology of the pathological and, more specifically,
the question of whether “dementia praecox” or schizophrenia is a natural entity
or whether it depends on a biographical and historical normativity (see Roelke
2000).
Now, Ludwig Binswanger’s existential project contributed in large part to the
critique of Emil Kraepelin’s anatomopathological approach, as well as to the
development of the psychological research in the field of clinical psychiatry. This
is the reason why, in more recent times, existential psychiatry has become one of
the most meaningful theoretical landmarks of the anti-psychiatric movement.
During the 1960s, indeed, such authors as Karl Jaspers, Ludwig Binswanger, and
Eugène Minkowski are strongly present in the works of the Anglo-Saxon anti-
psychiatrists Roland Laing and David Cooper (Laing 1960; Laing and Cooper
1964).1 It is also worth mentioning that Michel Foucault, who was among the first
to introduce to France the works of Ludwig Binswanger during the 1950s,
contributed significantly to the critique of medical psychiatry with the publication
of his History of Madness, whether he intended to or not2 (Foucault 1954, 1961,
19653, 1985). Indeed, when this book appeared in France in 1961, some of the
most influential French psychiatrists called Foucault’s intellectual approach
“ideological,” and accused him of trying to “kill psychiatry” (Ey 1971, 225). Franco
Basaglia’s work in Italy (1981) during those same years similarly takes as its
reference both extistential psychiatry and Foucault’s work. Now, the program of
the anti-psychiatric movement consisted precisely in the will to demedicalize mental
illness and, as a consequence, to conceive madness as a pre-scientific phenomenon
to be considered either as the effect of social constraints or—as Foucault put it
in the 1950s—as the expression of “what is most human in men” (Foucault 1994,
137). This is the reason why the French philosopher Henri Maldiney could affirm,
in the 1970s, that “if the phenomenological attitude had prevailed in psychiatry,
anti-psychiatry would not be born” (1976, 515).
In what follows, by expounding the theoretical principles of Binswanger’s
Daseinsanalysis, I will put into question the idea that existential psychiatry, at its
origin, was founded and developed as a purely philosophical and anthropological
theory in opposition to the scientific framework of the medical psychiatry of the
early twentieth century. Through the example of Binswanger’s clinical project,
my aim is to present the model of an ethical approach to psychiatry in which the
theoretical principles about how to properly deal with patients are not just applied
to psychiatric knowledge extrinsically, from an ideological point of view, but
directly originate from an epistemological demand for scientific rationality. In other
words, the ethical commitments of the existential approach to the subjectivity and
the singularity of the patient are immanent to the epistemological questions that
are the basis of the adoption of phenomenology by psychiatry. As I will try to
show, indeed, one of the major theoretical reasons that motivated the method of
Psychiatry as a science of the singular 181
Daseinsanalysis at the beginning of the twentieth century was the demand for
accounting objectively for the subjective and individual nature of psychopatho-
logical experiences. This current of psychiatry, therefore, turned to philosophy
not to distance itself from medical science but to find a kind of scientificity that
would allow it to find its own place alongside the other branches of medicine.
The epistemological issue

I have chosen to focus on Ludwig Binswanger because his work still today stands
as one of the most meaningful examples of the phenomenological currents of
psychiatry. Binswanger received his first training in psychiatry in one of the
most distinguished European psychiatric institutes, the Burghölzli in Zürich,
which was directed by Eugen Bleuler and his young assistant, Carl Gustav Jung,
who supervised Binswanger’s degree in Medicine in 1907. Thanks to Bleuler,
Binswanger had the opportunity to deal with the most important developments of
the academic psychiatry of his time, and more specifically with the attempt to face
the psychopathological diseases according to the perspective of the emerging
dynamic psychology (Bleuler 1906, 1910, 1911; Jung 1907, 1908). Although he
belonged to a family of psychiatrists going back three generations—he was the
nephew of the famous Otto Binswanger, who was professor at the University of
Jena—Ludwig Binswanger was sensitive to the needs for renewal of clinical
knowledge at a time when academic psychiatry was dominated by Kraepelin’s
dogmatic approach. Even after he abandoned academia—he indeed devoted his
entire career, from 1908, to the Bellevue sanatorium in Kreuzlingen, which had
been founded by his grandfather in 1857, then directed by his father (Binswanger
1957a; Herzog 1995; see also Moses and Hirschmüller 2004)—the young
psychiatrist pursued the scientific task to face “the dilemma in which psychiatry
[wa]s involved” between the possibility “to decide whether to just remain an applied
science, namely, a conglomeration of psychopathology, neurology, and biology,
held together simply by its practical task, or to become a unitary science”
(Binswanger 1955, 65).
At a time when nosological theorization in psychiatry went along with a
therapeutic experimentation guided by an empirical effectiveness that did not
always correspond to the standards of objective verification demanded by scientific
knowledge,4 Binswanger tries to efface the boundaries between clinical praxis and
epistemological reflection by an attempt to develop a theoretical model directly
rooted in the clinic. Indeed, the problem he tackles during the 1910s and the 1920s
is to reconcile the demands for objectivity of medical knowledge with the
historical, individual features presented by psychiatric clinical cases. This is an
issue that entails major consequences from an epistemological point of view, insofar
as the attempt to account “scientifically” for individual subjectivity—at a time when
psychiatry aspired to an objectivity intended as the end result of a battle against
subjectivity5—implied the need to reconsider the meaning of “science” in the field
of psychiatric knowledge. It is precisely such an issue—that is, the need to bridge
the gap between the concrete and singular data of pathological manifestations and
explanatory categories meant to describe and classify them—that drives Binswanger
toward phenomenology. Here, indeed, he recognizes a method that, while
representing an alternative to the reductionism of the materialistic approach, was
no less scientific than the medical knowledge of his time.
Therefore, Binswanger’s anthropological approach to psychiatry presents itself
as the example of an epistemological reflection, which cannot be separated from
the concrete clinical questions that urge and challenge it. This is the reason why
I think that this approach represents an example of the way in which philosophical
speculation has meaningfully contributed to stimulate—in the form of an
epistemological problematization of the relation between concrete singularities and
scientific universality in the field of clinical medicine—reflection on the issue of
the care relationship in psychiatry.
In what follows, I will deal specifically with one of the key concepts of
Binswanger’s methodological approach, namely, the notion of “a priori structure”
of experience. The aim of the investigation is to show that this concept takes root
in the psychopathological clinic. I will analyze this concept starting from the
complementary issues of diagnostic practice and taxonomic research in German-
speaking psychiatry at the beginning of the twentieth century, when Binswanger
published his first works.
The scientific context of Binswanger’s early works

In a conference that he held in 1914 in Kreuzlingen, Binswanger brings up the
matter of the most urgent psychological questions of the clinical psychiatry of his
time and wonders especially about the relationship between the status and the role,
respectively, of the psychic and the biological in the genesis and the evolution of
psychosis. He starts by dealing with the methodological and clinical objections
that had been made to the prevailing psychiatric positions at the beginning of the
century, and he discusses the main authors that had put into question Kraepelin’s
organicist standpoint with regard to the problem of the nature of mental diseases.
One of the first authors mentioned in this text is the German psychiatrist Alfred
Hoche (1865–1943), who had opposed Kraepelin’s positions with a constructionist
view according to which the classificatory schemes drawn by psychiatry are the
historical products of human thought, that is, they are subject to a prevailing
scientific paradigm (Hoche 1906).6 The arguments presented by Binswanger come
from an article that Hoche had published in 1912, in which he dealt with the
“significance of symptom complexes in psychiatry” (see Berrios and Dening 1991).
In this text the German psychiatrist drew a distinction between organic psychoses
and “functional” psychoses, namely, between those psychopathological phenom-
ena presenting physical correlations, and those disturbances that have nothing to
do with pathological anatomy, not because psychiatry is simply unable to find their
organic correlations, but “because they cannot have one” (Hoche 1991, 335). Hoche
introduced therefore the concept of “symptom complexes” (Symptomenkomplexe),
which he conceived as a whole of individual, psychic behavioral units that do
not depend on a physical determinism, but “obey [their] own laws, [and are] yet
incommensurable with material processes” (1991, 340). In other words, as Hoche
maintained, “psychic disturbances group themselves” (1991, 342).
Although Binswanger (1914, 576) blames Hoche’s position for “bringing again
in the foreground the very old view according to which the psychic would be a
category totally new and close in itself,”7 he especially appreciates the concept of
“symptom complex,” that is, the insight concerning the self-organization of the
psychological symptoms. As I am going to demonstrate, the idea of a self-norma-
tivity of the pathological will indeed become the theoretical ground of his theory
by the 1920s. This is a conception that has very important consequences from both
a methodological and a clinical point of view. Indeed, if “psychic disorders group
themselves” (Hoche 1912, 550) then the psychiatrist no longer simply collects the
extrinsic psychopathological symptoms, but lets him/herself be guided by these
disorder’s self-organization. As Binswanger will point out later in his study on the
flight of ideas, the psychiatrist should approach the psychopathological phenomena
“from within” (1992a, 171), moving from the different ways according to which
these phenomena “give themselves by themselves” (1992a, 215).
In his text of 1914 Binswanger proceeds with a conceptual survey by dealing
with Karl Bonhoeffer (1868–1948)8, who had opposed Kraepelin’s etiological
approach with the example of the functional or “symptomatic psychoses,” namely,
those “exogenous reactions” or “typical form of psychic reactions which prove
to be relatively independent of specific forms of noxae” (Bonhoeffer 1910, 106;
see Neumärker 2001). Although he acknowledges the important role Bonhoeffer
allowed to psychology and its interpretations, Binswanger criticizes him for not
having been able to clarify the specificity of the psychic, that is, to grasp and
elucidate the specific rules governing the typical forms of its organization. It is
in Eugen Bleuler’s Dementia praecox oder Gruppe der Schizophrenien (1911)
that Binswanger finally recognizes the only model capable of distinguishing
between the concept of pathological “process” (concerning the brain alterations,
and the pathogenic noxae), and the concept of the “reaction” of the ill psyche,
without thereby forcing psychiatry to regress to “psychologism” (Binswanger 1914,
579, 584).
According to Binswanger, thanks to the distinction between the primary or
fundamental symptoms, which contribute directly to the pathological process, and
the secondary or psychological ones, which result only from the reaction of the
sick mind to some internal and external processes, Bleuler was able to reconcile
the two dimensions of, respectively, the organic and the psychic, without opting
dogmatically for one or the other. This is why Binswanger places Bleuler’s
psychiatric work “at the intersection between Kraepelin’s approach and the purely
psychological approach” (1914, 578). Moreover, while admitting an organic
pathological process as the grounds of the primary symptoms, Bleuler admits that,
“we do not know what the schizophrenic process is” (1998, 376). He maintained
also that:
The evolution of the symptoms and that of the pathological process do not
go necessarily hand-in-hand and it may well be that faced with the same brain
trouble, one patient can recover and another can become idiot, because of
a slightly different psychic constitution, because of a lack of stimulation,
or a psychic trauma of a greater effect.
(Bleuler 1998, 375)
The only field of action for the psychiatrist, therefore, is psychotherapy only, even
though Bleuler states that “unfortunately, neither here have we exceeded the simple
empirical approach” (1998, 383). Nevertheless, despite the “embryonic state of
psychology,” he programmatically maintains that it is only from the clarification
of the “psychological relations” in the field of psychiatry that it is possible to expect
new insights on the nature of psychosis (Bleuler 1911, 15; see Scharfetter 2001).
It is precisely within this context that Bleuler’s psychiatric circle in Zürich
welcomed Freud’s psychoanalysis. The psychoanalytical theory, in particular, was
acknowledged by this part of academic psychiatry with the capability of giving a
verification method—and therefore a scientific status—to the psychological
investigation of the psychopathological phenomena. For this reason, between 1906
and 1911, the works of Bleuler had been devoted to finding in the psychiatric
secondary symptoms the same complexes and mechanisms that the psycho-
analytical approach had recognized in normal psychic functioning and in particular
in dream life, namely, condensation, displacement, and symbolism (Bleuler 1906,
1910, 1911; see De Ridder and Corveleyn 1992). What psychoanalysis allowed
Bleuler to do, in particular, was to reconcile the medical concept of the causality
of the pathological with the idea of its genesis. As he clearly stated in his work
on the group of schizophrenia:
Of course there is no relation of mutual exclusion between the acute

exacerbation of brain processes and the psychic triggering experience. Thus,
in most cases the two causalities concur to create the symptomatic psychotic
complexes.
(Bleuler 1998, 374)
Psychoanalysis and phenomenology: the debate between

Binswanger and Jaspers (1913–14)
The interest of the young Binswanger in Freud’s theories dates back to this period
and it is exactly in 1908 that he begins his 30-year-long correspondence with Freud
(Binswanger and Freud 1992). Early in his psychiatry career, Binswanger employs
Freud’s analytical method with his patients, as it is clearly demonstrated in a case
study of hysteria that he worked on during his internship in Jena (1907–8) and
that he published in 1909 in the journal edited by Bleuler and Freud, the Jahrbuch
für psychoanalytische und psychopathologische Forschungen.
It is precisely Binswanger’s adherence to psychoanalysis that in 1913 triggers
a lively debate with Karl Jaspers, who had published in this same year an essay
on the “causal and ‘understandable’ relationships between events and psychosis
in dementia praecox (schizophrenia),” in which he sharply criticizes Freud’s
interpretative method (Jaspers 1913b; see Bormuth 2006, 7–35). The subject on
the agenda, for Jaspers—as for many psychiatrists at that time—was again the
definition of the “reactive psychosis.” In his view, schizophrenia should be
approached according to two perspectives, which, while related, should be kept
distinct from each other: on the one hand, one has to consider the emotional
triggering moment that acts as the physical “cause” of psychosis, while on the
other hand, the “understandable relations” are on the basis of its individual
psychological development. For Jaspers, neither one nor the other of these two
perspectives could fully elucidate the genesis of psychosis. Moreover, they should
not be confused and if, on the one hand, it would be wrong to try to “understand”
the cause of a mental disease, on the other hand, psychological relationships could
not be “explained.” In other words, according to Jaspers, it is not possible to
conceive something like a “psychic cause,” since the psychic relationships are
individual matters that can only be partially and intuitively understood
(einfühlendes Verstehen). Thus, even though it would be possible to reconstruct
the genesis of certain psychic relationships, one can never grasp them completely
from a purely rational, causal standpoint. Any interpretation built on causal
explanation—like Freud’s interpretative method—is therefore nothing but an
arbitrary conjecture.
This is a thesis that Jaspers further expounded in his treatise on General
Psychopathology (1913), by dealing with the difference between “understanding”
(Verstehen) psychic relations, and “interpreting” (Deuten) them.9 According to
him, while understanding enables us to reconstruct the genesis of certain psychic
relationships—either directly or indirectly, namely, clarifying connections that are
not immediately visible or not noticed (unbemerkt)—interpretation, on the
contrary, would force us to suppose extra-conscious facts with the aim to achieve
an understanding and to formulate an explanation. The clearest example of this
approach, for him, was Freud’s theory of “psychic mechanism,” a theory that
entailed a conjectural and incautious construction of extra-conscious events.
Psychoanalysis would have therefore confused the understanding of psychic facts
with their causal explanation, and worked out, on this basis, a theory of the psyche
and its functioning, whereas the work of understanding can never give rise to
theories.
Binswanger opposes this position with some critical remarks that he published
in 1913 in the psychoanalytical journal Internationale Zeitschrift für ärztliche
Psychoanalyse. What he cannot accept about Jaspers’s view is the impossibility
of formulating laws and theories in the field of the psychic. This is the reason
why Binswanger defends Freud’s analytical approach. More specifically, he
defends its capability of “disentangling” and “ordering” the psychic facts to
organize them in a general theory (Binswanger 1913, 386). According to him, Freud
had been able to develop a method by which the psychic facts could be approached
and explained by following their own organization. In other words, the “rational
a priori rules” that psychoanalysis had discovered in the psychic experiences were
formulated on the basis of these experiences themselves, from their “motivational
connections of meaning,” as Binswanger specifies at the beginning of the 1920s
(1924, 410). According to his reading, the choice of clinical psychiatry to adopt
Freud’s methodology could allow it to renounce the postulation of abstract
categories. The work of the psychiatrist would consist therefore in letting
him/herself be guided by the immanent structural relationships and principles that,
at the same time, govern the individual psyche and lead the clinician to understand
it. Psychoanalysis, therefore, would be able to reconcile Jaspers’s intuition of the
singularity of the clinical case with the need for the generalization required by
scientific theories.
Thus, in his article of 1914 Binswanger complains of “those criticisms that limit
themselves to consider that Freud would have merely enriched our knowledge with
the psychological relationships of neurosis and some psychosis” (1914, 581). In
fact, he maintains:
The relationships revealed by Freud do not allow us at all to understand

psychologically (after the manner of Jaspers) the content of a neurosis or a
psychosis, but they rather offer us an outlook of their global construction,
their structure, and their genesis.
(Binswanger 1914, 581)
According to Binswanger, psychoanalysis presents clinical psychiatry with the

clinical insight of the self-organization of the psychic material, that is, the idea
that the “ordering principle,” or the “scheme targeted to order the symptoms”
needed by the psychiatrist in order to classify and diagnose the pathological
phenomena, is furnished by these phenomena themselves (Binswanger 1957b, 27).
It is an approach that is adopted also by Binswanger as the fundamental method-
ological principle of his Daseinsanalyse. As he states explicitly in the Preface of
his study of Schizophrenia in 1957—in which are collected some of his most
meaningful clinical cases—the “existential analysis” is a method that enables the
psychiatrist to “order the enormous amount of data of singular clinical cases” by
following their immanent normative structure (1957b, 27). As a consequence, the
various forms of mental illness should not be approached from an etiological
standpoint, nor from the pure collection of symptoms, but only by looking for the
fundamental ordering structures that govern their organization.
This idea of the self-organization of disease presents itself as an answer to the
problem of the ontology of the pathological, which was central to the psychiatric
debate on schizophrenia at the beginning of the twentieth century. If, according to
Kraepelin, schizophrenia was a natural entity—which means that on its basis there
would be a natural, physical normativity—the introduction of the problem of the
“psychic” forces psychiatry to admit another concept of normativity that does not
necessarily correspond to the one acknowledged by organic medicine. It is exactly
in order to answer this epistemological need that Binswanger turns to phenom-
enology. What attracts Binswanger toward Husserl’s approach—and, later, toward
Heidegger’s analytics—is precisely the idea of the possibility to understand the
individual phenomenon by grasping its inner “norm,” a norm that Binswanger
recognizes as the “a priori structure” of the singular psychopathological fact. Indeed,
the question about the ability of grasping the “essence” of a phenomenon in
the empirical fact was one of the main concerns of phenomenology in Husserl
(1962, 1976, 1999), and the method of the apprehension of the essence was therefore
central to phenomenological investigations into the problem of conceiving
generalities from singular experiences.
Now, according to Binswanger, the inner normativity of a psychopathological
behavior consists in a psychic configuration, which can be detected by following
some typical sense relations (Sinnzusammenhänge) that govern behavior, thereby
making possible a priori its different expressions. These sense relations can
articulate themselves, for instance, in a specific organization of the spatial and
temporal coordinates, and give rise to specific “forms of existence,” like for instance
mania, depression, obsessiveness. Binswanger also refers to these forms of
existence in terms of “world-projects,” in order to emphasize—by integrating
Husserl’s gnoseological insights with Heidegger’s existential analysis—the
anthropological aim of psychiatric research. As Binswanger writes in an article
from 1946, in which he presents the “The Existential Analysis School of Thought”:
If, for example, we can speak of a manic form of life, or, rather, of existence,
it means that we could establish a norm which embraces and governs all
modes of expression and behavior designated as “manic” by us. It is this norm
which we call the “world” of the manic . . . For we know well enough that
that-which-is as such never become accessible to man, except in and through
a certain world-design.
(1958, 201)
The ability of the psychiatrist consists therefore in going beyond the singular
and contingent psychopathological manifestations in order “to look for the principle
which rules the formation of the series” (Binswanger 1992a, 132), namely, the a priori
structures of experience. The psychiatrist, in other words, should be able to create
at once both the totality and the invariability from what is always partially and variably
present in the individual. It is worth emphasizing here that, although the a priori
structures function as ordering or “transcendental” schemes of experience—so that
they cannot be reduced to the empirical individual experiences—they do not exist
independently from these experiences. Binswanger insists on this point until the
second half of the 1950s. In his study of Three Forms of Frustrated Existence, for
example, Binswanger maintains that, although “fact should be grasped from its
‘essence,’ which works—according to Husserl—as the ‘insurmountable norm’ of a
fact” (1992b, 411), “in contrast to Husserl, for us the facticity of the ‘natural world’
or the ‘natural experience’ never disappears” (1992b, 398).
Thus, Binswanger employs the phenomenological concept of “essence,” as
well as the concept of “a priori,” as a methodological tool targeted to clinical-
diagnostic goals. Within the frame of existential analysis, the “a priori structure”
becomes an operational concept that emerges from the clinic, insofar as it cannot
be theorized before its historical incarnation in a clinical case but, at the same
time, it is supposed to guide clinical praxis. In the final analysis, Binswanger works
out this concept in order to demonstrate the immanence of scientific categories to
the facts that such categories are supposed to explain. The epistemological
challenge of this notion consists therefore in its ability to meet both the scientific
demand for objectivity and generalization of psychiatry as medical science, and
the need to bring science back to the lifeworld—“back to the things themselves”
—namely, the need to account for the historical, subjective singularity of
psychopathological phenomena.
Epistemology and ethics: the care of singularity

The commitments to the subjectivity of the patient are immanent to the method-
ological reasons that form the basis of Binswanger’s adoption of the conceptual
instruments of phenomenology. The theoretical insights of Daseinsanalysis,
therefore, cannot be considered separately from the clinical aims that, at the same
time, motivate them, and arise from them. Now, the idea that the psychopathological
phenomena are governed and can be grasped from their own structure or norm
presents further meaningful consequences on an ethical level. On the one hand,
as we have seen, the dissolution of the psychiatric nosological categories into
transcendental structures leaves room for a greater openness toward the individual
differences between the patients. On the other hand, it arises from here the idea
that psychopathological experiences are not merely defective modes of health, but
new forms of “being in the world.” It is a thesis that Binswanger supports by means
of the insights formulated in the field of neurological research by the German
psychiatrist Kurt Goldstein:
Thus, the concept of pathological . . . wasn’t any more the expression of

something purely negative . . . but it could be also conceived positively, on
the basis of a norm. We owe Goldstein, in particular, the perspective according
to which such a positive corresponds to a “new being in the world” (that is,
a being ordered according to a norm, a sense, a structure) which one should
characterize positively.
(Binswanger 1992a, 104)10
It is a view that is also emphasized by Georges Canguilhem in his thesis on The

Normal and the Pathological (1943), whose ideas are also connected to both
existential psychiatry and Goldstein’s medical thinking. According to Canguilhem,
“if we can speak of normal man as determined by the physiologist, it is because
normative men exist for whom it is normal to break norms and establish new
ones” (1989, 164–5). Interestingly, Canguilhem takes as an example the idea of
pathological normativity as it appears in the field of existential psychopathology
and he mentions one of the most meaningful French psychiatrists of the first half
of the last century, Eugène Minkowski:
The normal man is not a mean correlative to a social concept, it is not a

judgment of reality but rather a judgment of value; it is a limiting notion which
defines a being’s maximum psychic capacity. There is no upper limit to
normality.
(1989, 119)
On these conditions, Canguilhem concludes:
We find it sufficient to replace “psychic” with “physical” in order to obtain

a very correct definition of the concept of the normal which the physiology
and medicine of organic disease use every day without caring enough to state
its meaning precisely.
(1989, 119)
This concept of the human biological normativity, which is worked out in

the field of psychiatry, proves an ethical concept (see Debru 2011). Even though
Binswanger’s work leaves more space for theoretical reflections than to the
presentation of proper therapeutic techniques, it still remains a very important point
of reference today for psychiatrists and physicians, but also philosophers who
question the care relationship.11 Indeed, the existential approach leads to an
optimistic view of the clinic that conceives the therapeutic practice—in the words
of Lazare Benaroyo—as an activity that “does not confine itself to expect the patient
to go back to the physiological norm, but emphasizes also the ability of the sick
person to find a new norm of existence” (Benaroyo 2010, 27). Furthermore,
according to this view, the psychiatrist-phenomenologist, thanks to his/her ability
to detect the “meaning directions” (Bedeutungsrichtungen) that structure the
world-project of a patient, is supposed to have the possibility to intervene directly
in the formation of this project. The therapeutic activity has therefore the further
aim to help patients to themselves intervene in the structure of their own world-
project, namely—in the words of Roland Kuhn—“to wonder about the style
according to which they exist,” a style that consists “in a certain way of interacting
with the world, the others, oneself ” (Kuhn 2007a, 96).12 Far from imposing itself
from outside with its own rules and its own system of interpretation, therapy is
conceived as “a new creative act” (Kuhn 2007c, 318). Hence the emphasis that the
Daseinsanalysis puts on the temporal dimensions of present and future, rather than
past. In fact, what matters for the psychiatrist-phenomenologist is the “actual and
present situation of the unique encounter of two actual persons” (Kuhn 2007d, 143).
In the final analysis, this inquiry into phenomenological psychiatry according
to the model developed by Ludwig Binswanger presents us with the idea that in
the domain of psychiatric care, scientific categories cannot be pure, since they are
sought and therefore closely related to the embodied and embedded singular
experiences that simultaneously resist categorization and test it. The example of
the way in which existential psychiatry applies the methodological principles of
phenomenology to the analysis of historical experiences could therefore stimulate
a wider reflection on the role that philosophy and its theoretical instruments can
still play, today, with regard to the way in which psychiatric knowledge works
out its concepts on the basis of the clinical tasks that motivate them.
Notes
1 We just recall here that the first work of R. Laing (1960) was subtitled “An Existential
Study in Sanity and Madness” and opened with a quote by Eugène Minkowski.
Furthermore, the Preface to the original edition of the book explicitly presented the
volume as the first of a series devoted to existential psychology and psychiatry. R. Laing
and D. Cooper’s Reason and Violence (1964), was also published in a series entitled
“Studies in Existential Analysis and Phenomenology.”
2 In a famous 1980 interview, for example, Foucault explicitly distanced himself from
the anti-psychiatric movement (Foucault 2000).
3 The first English edition of this book—under the title of Madness and Civilization—
was the translation of a shortened French version.
4 According to J.N. Missa (2006), “therapeutic empiricism” was the main feature of
psychiatry in the twentieth century.
5 According to Lorraine Daston and Peter Galison (2007)—some of the most influential
researchers in the study of the history of sciences—the science of the nineteenth century
struggled for an “objectivity” that presented itself as a fight against subjectivity.
Science was therefore intended as the search for empirical proofs, as the attempt at
having access to nature’s law by means of “experience” intended as empirical
observation. It is a position that was still strong in medical sciences and psychiatry at
the beginning of the twentieth century.
6 This is the text of a paper that Hoche read in 1906 in Munich on the occasion of the
conference of the “German Association of Psychiatry (“Deutscher Verein für
Psychiatrie”). Hoche had been Professor in Freiburg since 1902.
7 All quotes from Ludwig Binswanger are my translations.
8 Karl Bonhoeffer had been professor of Psychiatry and Neurology at the Charité in Berlin
since 1912.
9 Jaspers 1913a, Chapter 3: “Die Zusammenhänge des Seelenlebens: I. Die Verständ-
lichen Zusammenhänge.”
10 For a historical and theoretical account of the role of Kurt Goldstein’s epistemological
insights within the medical sciences and clinical practice of his time, see Harrington
1996, Chapter 5 (140–74): “The Self-Actualizing Brain and the Biology of Existential
Choice.”
11 See, for example, the special issue of La lettre du psychiatre 5(9): Actualité de la
philosophie en psychiatrie (2009). See also Leroy-Viemon 2011.
12 See also Kuhn 2007b, 290: “The sick person gradually learns to replace his own free
associations . . . with eidetic variations.”
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10 Critique of solution-focused
brief therapy
Carlos Neves
Nothing fixes a thing so intensely

in the memory as the wish to forget it.
—Michel de Montaigne
To dwell is to garden.
(Heidegger, M. n.d.)
In 2011, the Ontario Government announced a new comprehensive mental health

and addictions strategy intended to address the mental health needs of children,
youth, and their families. In response to this announcement the Ontario Centre of
Excellence for Child and Youth Mental Health developed a policy paper entitled
No More, No Less: Brief Mental Health Services for Children and Youth (Duvall
and Burden 2012). The paper was designed to tackle some of the barriers identified
in the mental health and addictions strategy such as service gaps, increased
demand for services, and long wait lists. Brief therapy services, including walk-
in clinics, where single sessions are offered, intake as a first session, extended
intake, and focused consultation were positioned as part of the solution. All these
services range typically from one session to six sessions, with some exceptions.
Notably, the brief therapy model is generalized to adult populations as well,
and in agencies that are fee-for-service, which include employment assistance
programs and extended health benefits plans. A scan of mental health agencies,
training centers, and universities offering counselling/psychotherapy/clinical social
work degrees also suggests that the dominant approach is brief therapy. How did
brief therapy models, in particular Solution-Focused Brief Therapy (SFBT) come
to enjoy such a privileged status in the field of mental health today, and more
importantly, what are the implications of such an approach for the practice of
psychotherapy as a form of care?
To begin with, the institution’s discourse advances the notion that the mental
health system is in crisis, because there is a lack of capacity (scarcity of
funding/resources) to respond to the need for mental health services. This notion
is not new. It has been circulating since the 1980s and 1990s. The demand always
seems to outstrip the supply. The second reason cited is that there is a patchwork
of services that makes it difficult for people to navigate toward the right services.
196 Carlos Neves
People are not getting what they need, even though what they need does exist—
this may be defined as a “way-finding” problem. The third claim is that some
services may be causing more harm than good, or that there are situations where
services are ineffective. This latter concern triggers a whole industry of
competency training, professional development, and evidence-based practice
research to respond to this anxiety, and to position service providers as “ethical
and effective” providers of care, who consequently are deemed fit to secure
funding dollars.
The brief service philosophy embraces a service ethic that ensures children,
youth, and families receive exactly the amount of service they need—no more,
no less. It assumes that youth and families can and should be involved in
services for a shorter period of time. Recognized brief therapy approaches
include collaborative, client-centered models used by skilled clinicians such
as narrative therapy and solution-focused therapy . . . by providing brief but
effective interventions, precious system resources are freed up to provide
adequate care for children and youth who have more intensive needs.
(Duvall and Burden 2012, 4)
The idea that service can be reduced to an amount, and that “children, youth and
families can and should be involved in services for a shorter period of time” is a
peculiar one. The assumption is that service is a thing that can be dispensed, and
as such, too much and too little service is undesirable and perhaps harmful. Yet,
in the next statement, the “should” pops up and clearly the bias is for less, as if
there is some kind of magical line or threshold of services, that if crossed will
have negative effects. Brief therapies are then offered as an ethical solution to the
danger of doing harm by guarding against giving “unnecessary care,” meaning
“prolonged care” to clients. But what kind of “harm” is envisioned here?
When the shift to “managed care” occurred in the late 1980s and 1990s the
terms of the discourse changed from a healthcare system that “lacked resources”
and needed more public and political support to fund mental health programs,
including greater access to psychotherapy services, long-term if needed, to one
that pitted an “individual ethic” against a “social ethic” (Austad 1996). Apologists
for managed care corporations claimed that mental health professionals and social
service agencies who criticized the emergence of managed care as a heartless attack
on those in need of ongoing psychotherapy were themselves behaving in an
unethical and self-interested manner. Proponents of ongoing care were cast as self-
serving entrepreneurs who were neglecting the social responsibility of distributing
care to those who “really need” it. Most notably, Austad (1998) argued that certain
providers and users of longer term therapy services, funded by insurance
companies, or paid for by the state, or out of pocket, all contribute to depriving
those who really need therapy from getting access to care. One could argue that
this stance prepared the way, ideologically, for a reception of brief therapy models,
in particular SFBT as the exemplar of a socially responsible (cost effective and
collaborative) model of care.
Critique of solution-focused brief therapy 197
For decades, common factors research has demonstrated the effectiveness of
all kinds of psychotherapy, psychoanalysis included, and recently there is evidence
to suggest that psychodynamic therapies are more appropriate for clients with
complex mental health needs, or what is referred to in the literature as “moderate
to severe difficulties in functioning.” I can count on one hand the number of articles
that attempt a critique of SFBT in the literature. In a systemic evaluation of the
studies of SFBT from 1990–2010, the conclusion was that “the evidence base itself
continues to be relatively weak, with only five high quality studies identified” (Bond
et al. 2013, 720). I am not going to dwell on this aspect any longer.
My interest is not in the strengths and weaknesses of the evidence base, but
rather in attempting a critical description of how the assumptions of the model,
as well as the techniques employed, can be seen to project a notion of caring and
therapeutic action in the service of suppression and splitting, rather than a process
that is revelatory and integrative. James Hollis (1998, 21–2) puts what I have in
mind here rather well:
The tragedy of modern psychotherapy is that in most cases it is not truly

psychological, that is, it does not track behavior back to its origins in the soul
(which is what the word psyche means after all). To correct the behavior
without understanding the psychic dynamics is to remain superficial. While
one may correct a behavior or alter a cognition, the wound to the soul will
simply find another, perhaps more subtle, venue for its expression.
The origins and assumptions of SFBT

Solution-focused brief therapy emerged as part of the Brief Therapy movement
in the mid-1980s. It was developed at the Brief Family Therapy Center is
Milwaukee, by Steve de Shazer and his colleagues. The approach originated
in response to observations that there were inconsistencies to be found in problem
behavior, and that solutions to the problem do not require insight (Iveson 2002).
Out of this the notion of “exceptions” to the problem behavior emerged, and out
of these exceptions the belief that the “seeds” of the client’s own solution
were already present, but eclipsed by “problem talk.” In addition to shifting
the emphasis from tracking the “problem” and its causes in favor of “exceptions”
and strengths (i.e., in order to promote awareness and belief that the client can
improve, because they already possess solutions, rather than insight into how past
experiences shape behaviors and meanings), the founders, de Shazer and Berg,
were adamant that measurable goals be set in the first session, and that the
question “How will we know when the problem is solved?” be asked right away
so that clients and therapists would know when it was time to end therapy
(de Shazer et al. 1986, 210).
As the practice of SFBT developed, emphasis on exceptions to the problem was
replaced by an interest in what the client is already doing that might help achieve
the solution (Iveson 2002). One implication of this is the belief that all clients are
motivated to change, and that the client’s attitude to the problem is no longer
198 Carlos Neves
relevant. “All that clients need is to want to do something different—even if at
the starting point they do not think that something different is possible” (Iveson
2002, 149).
The imperative to contract in the first session to decide when the client will
know “the work is over” by noticing when X, Y, or Z is happening is said to
empower the client in that she/he becomes better at recognizing when the change
is happening, thereby increasing feelings of competence and self-esteem. But this
technique also encourages the client to imagine the termination of the relationship
before an attachment can be formed, which inoculates against transferring feelings
and thoughts pertaining to early figures to the therapist as an attachment figure
(Farber, Lipert, and Nevas 1995). Opportunities for internalizing new, let us say
“reparative,” experiences with the therapist on a relational level are short-circuited,
as is the possibility of clarifying how the client’s relation to him/herself and others,
that is to say, his/her desire, may be structured by the interpersonal template derived
from his/her attachments to significant others. Working through transferential
affects and cognitions as part of the process of “healing” and “psychological
growth” requires relational commitment over time with a therapist who the client
trusts will survive his/her projections: that is, the therapist will not abandon the
client as his/her beliefs and expectations about self-other relationships get
articulated and examined in the here and now of the transference.
Transference/counter-transference and anxiety

of confrontation
When one is disappointed, one is always wrong. You should never be dis-
appointed with the answers you receive, because if you are, that’s wonderful,
it proves that it was a real answer, that is to say exactly what you weren’t
expecting.
(Lacan 1991a, 237)
In SFBT, the desire of the therapist is articulated explicitly in the first session
as one that is interested in the alternative story, the strengths-based story, the
wished-for future. This interest is made manifest by asking questions designed to
evoke expected answers, answers that will serve as the building blocks leading
to the “preferred future.” Then, the therapist takes the clients’ expected answers
and coaches him/her on how to build the wished-for future, with no reference to
the problem, to the influence of the past, or the relational dynamics of the
therapist–client dyad. But what to do with answers that are not expected? What
to do when the client refuses strengths-based talk and instead focuses on the
problem? Dwelling on the problem, with the affective charge of the psychic wound
and its relational origins, its template for self-other relations—that is seen as
irrelevant for psychological growth and change in SFBT. One is tempted to ask,
what might the claim that “insight is not needed for change” be masking? Why
turn away from the reflection into how the imprinting of the past leaves its trace
in our souls and in our relational habits? Heidegger invites us to consider the notion
that “to dwell is to garden.” Is it not desirable, to recover the capacity to reflect
on the place of the past in our present lives, so that what is remembered can be
liberated from the compulsion to be repeated, and forgotten, properly speaking?
Freud taught us that which resists symbolization (the repressed), or in Lacan’s
idiom the traumatic Real, does not dissolve into nothingness if neglected, but rather
returns in symptoms as the “return of the repressed” wreaking havoc in our lives.
It is with this element, the repressed and its defenses, that through the transference
an engagement and confrontation can take place. Sailing over it, rendering it
“irrelevant,” certainly in most cases risks being consciously and unconsciously
welcomed by the clients we work with as it allows client and therapist to avoid
uncomfortable aspects of self that remain disowned, or split-off. But what of the
therapist’s defenses and aversions in the SFBT model?
The general trend in brief therapy, in particular single sessions, is to validate
the client’s story and to avoid problem talk and confrontation whenever possible.
The suggestion is that if our mode of helping clients is more congruent with their
self-understanding (which may include unexamined notions of themselves as
victims, perpetrators, rescuers, heroes, etc.), including their beliefs about what is
causing the difficulty and what would remove it, then co-constructing a solution,
a “preferred future” or “alternative narrative” (in the jargon of solution-focused
and narrative therapies), will yield good outcomes! If we push this logic to its
conclusion we arrive at this absurd statement. The client gets good service, good
care (because in this model, servicing is equated with caring), when they get exactly
what they want! But what people want is not at all as straightforward and self-
evident as we might imagine. Brief therapies and the interpersonal matrix that they
conjure up do not exist long enough to be present to the gravitational pull of old
habits and impulses that inevitably reassert themselves once the euphoria of the
“new narrative” wanes.
In SFBT, therapists are not there in the longer run to attend to the disappointment
of setbacks, to the repetition of “problems” that reemerge once the power of
suggestion fades. Strengths may have been brought into the light, obsessively so,
but by denying any articulation with the problems, fears, anxieties, the mind–body
nexus of creative defenses and symptoms, that is to say, with no attention paid to
the dynamic aspect of the psyche, its regressive, not just progressive dimension,
goes neglected. It is as if the therapist’s fear of being confronted with the client’s
despair and anger manifests in the therapist’s avoidance of confronting and
investigating the significance of the client’s speech in the transference. We might
argue that in SFBT the therapist’s counter-transference is manifested as a
philosophy and technique. By constructing the client’s desire to talk about the past
and to dwell with the “problem” as a “distraction” from solution finding, the
philosophy and technique of SFBT betrays a deeper fear, namely, the fear of
transference and the demand that this places on the therapist to “carry” and/or
“parry” the projections in whatever manner facilitates psychological growth and
resolution.
I don’t deny that there is some value in brief therapy, but all too often, too much
is asked for, and therapists are all too happy to facilitate the fantasy that anything
200 Carlos Neves
is possible, without challenging the fundamental fantasy of their clients, a fantasy
that sometimes equates, confuses, mixes, hallucinates, combines, we might even
say “acts out” the desires of those psychologically charged others who impinge
themselves upon them. The question is not, what needs to be done to get what
you want, but rather whose desire is it anyway that brings you to this place here
and now, and what is desire making of you, demanding of you?
How did such a disavowal of the vicissitudes of desire and its history, and with
it psychodynamic therapies that in varied ways provide some equipment to
traverse one’s fantasies of self-other, so as to discover always partially, tentatively,
and forever provisionally the language of the self’s attempts to conceal from its
sight, feelings, impulses, and experiences that it wants to know nothing of, despite
pleas to know? How did such a turning away from psychotherapy’s vocation as
a “curiosity profession” in the service of coming to know what we want and do
not want, what we know but want to forget, get eclipsed in favor of SFBT, whose
raison d’être is curiosity in the service of shifting attention away from psychic
pain, bewilderment, stubborn repetition of trauma, toward the ego’s signs of mastery
(i.e., exceptions to the problem, examples of coping, acts that suggest an actor
that is strong, whole, powerful, free of doubt, free of confusion, free of anguish
in the face of the enigma of his desire)?
Speaking, listening, and hearing

Each time a man speaks to another in an authentic and full manner, there is,
in the true sense, transference, symbolic transference—something takes place
which changes the nature of the two beings present.
(Lacan 1991b, 109)
The use of language in SFBT is worth examining from the perspective of the
effects it produces. The deliberate censure of free association, of free-floating
attention, of insight-oriented and symbolic work, communicates the therapist’s
desire to the client in subtle ways. The therapist’s desire presses upon the client
as an interrogator with an already established set of aims, avoiding certain
themes that are unspoken or minimized, such as problem talk, family of origin
talk, depressive affect, historical grievances, and especially awkward moments,
misunderstandings, or what therapists call ruptures in the therapeutic relationship.
We find here instead an obsessive focus on the future, a prompting for exceptions,
and an exaggerated belief in the existence of competencies no matter how dire
the situation appears. Through their use of language, SFBT therapists create
effects that reflect their model’s assumptions. “They use exceptional (looking for
exceptions to the problem) and presuppositional (assuming people have the ability
to change) language to emphasize client strengths, competencies, and areas of
expertise” (Dermer et al. 1998, 246).
The “miracle question” is perhaps the most celebrated use of this technique of
language. It is formulated and executed in the following way: if a miracle occurred
in your sleep and the problem that brought you in was gone when you woke up in
the morning, but since you were sleeping you did not know the problem was gone,
what would you notice would be different upon waking? What would your family
or friends notice? Is some of this miracle happening already? What needs to happen
for this miracle to happen more often? This question and the follow-up to it functions
as a rhetorical set-up to convince the client that he/she already practices the change
in some way and that all that is needed is to do this miracle, small steps, more often.
By asking what would be different and pointing to instances where this is already
happening, the goals can be set, and the narrative becomes one of empowerment
and competence rather than exploring the significance of negative feelings such
as bewilderment, shame, guilt, fear, etc. The next stage is to motivate the client to
“do something different” to create different results, thereby “empowering” the
client. Offering compliments is also an explicit strategy designed to divert clients
from depressive affect and from a self-conception that would have them at the mercy
of their problems. Instead clients are talked about as heroic, resourceful, doing the
best they can, and already practicing the change, because they want the change.
But what of clients who think they want change, but actually dread it for reasons
that escape them, something they know but refuse to think?
In SFBT the client is incited to speak, to follow, to complete the speech of the
therapist, rather than to bring into the realm of speech that which has never been
spoken, and that is only intimated in the cracks and slips and nonsense (Fink 2007).
This is so in large part because the therapist does not listen for, does not hear all
that is spoken by the client that does not fit in with the frame. In other words, in
SFBT the therapist’s use of language to prompt the client to speak is constrained
in principle to attend to what is immediately meaningful, what is relatable to the
“goal,” what is comparable to what the therapist imagines his/her own experience
would be like if he/she were in the subject’s shoes seeking solutions. In short,
when the therapist remains at the level of the “imaginary” he/she can only notice
reflections of his/her own solution-focused ego, only what is immediately
comprehensible and in the service of solutions. To quote Bruce Fink (2007, 6):
(W)hatever is not immediately meaningful or comprehensible—slurs,

stumbling, mumblings, garbled speech, spoonerisms, pauses, slips, ambiguous
phrasing, malapropisms, double and triple entendres, and so on—is set aside
or ignored . . . (T)his essentially means that the more the analyst operates in
the imaginary mode, the less she can hear.
Contrary to what is preached, the belief that SFBT is collaborative, democratic,

and that it deconstructs power in the therapy relationship is dubious. From a certain
perspective it is rather the epitome of power and control, insofar as the therapist’s
desire to shape the language of the subject, by suppressing the unruly forces
of the unconscious, by denying and disavowing its language of symptoms,
parapraxes, slips of the tongue, changes in topic, deflections, etc.—by ignoring
them, and in some cases actively constraining the subject to get back on to the
topic. These rhetorical strategies may end up reinforcing avoidances and defenses
that no longer function to hold the subject together. In fact, deflecting, avoiding,
202 Carlos Neves
and steering away from problem talk sends the message that psychic pain is
uninteresting and intolerable, hence threatening to the therapist, and as such
shameful for the client. In other words, the desire of the therapist as a solution
finder, as a coach with an eye on the goal, risks being absorbed and identified
with as the client’s desire, sidestepping the articulation of the client’s real desire,
of symbolizing her/his desire as perhaps other than what the subject thinks she/he
wants under the spell of the imaginary relationship with the therapist.
If psychoanalyst Heinz Kohut (1984), who would later found self-psychology,
was correct in his assertion that therapeutic change occurs through “transmuting
internalizations” of the client’s experience of the therapist as a nurturing, wise,
and sufficiently alike figure, thereby providing a reparative experience (through
transferences) that would facilitate the unfolding of self, in SFBT the client’s
supposed path to change is to internalize not the therapist’s self-states, but the
therapist’s instrumentalities: the perspective of exception finding, solution finding,
and curiosity in the service of creating new possibilities for thinking and doing.
As we have seen, this also comes with the therapist’s disavowal of problem talk,
the past, insight into how the problem functions as part of the psychic and
relational economy of the person in situation, a discomfort with psychic pain of
dwelling with it long enough to learn something from it. This message essentially
is internalized, that is to say, that the person’s imaginary relation to herself/himself
as a problem-phobic solution seeker undergoes reinforcement. She/he becomes
cast in the desire of the therapist as a competent solution seeker who possesses
all the answers already and whose belief in problem talk has kept her/him from
realizing her/his potential.
The danger is that despite SFBT’s intention to empower the client, this approach
risks robbing the client of the opportunity to articulate her/his own truths/voice,
dependent as it is on the client’s identification with the therapist. The identification
is not with the therapist as a subject supposed to know (as the therapist in this
model insists that the client possesses all there is to know already, or even more
radically, that knowing is irrelevant to change, thereby short-circuiting the
possibility for an idealizing transference), but rather an identification with the
therapist as the exemplar of curiosity in the service of leading the clients toward
a conception of themselves as powerful and capable of creating solutions without
the aid of fantasy, projection, transference. “Transference/countertransference
interplays may give us an indication of the nature of distress, which may allow
both therapist and client to work collaboratively towards expanding the client’s
repertoire of choices of ways-of-being in the world” (Pereira 2010, 8–9). It is a
great disservice to people when therapists deny their clients the opportunity to
idealize them or hate them as Freud, Lacan, and Kohut knew, to expect from them
some knowledge, to hold that place of the “subject supposed to know,” for it is
not that therapists actually know, it is that their desire to know acts as a prompt
for the client to bring into speech that which has never been spoken, in other words
to articulate and symbolize that which resists symbolization (Lacan 2006).
In SFBT, the therapeutic conversation becomes shaped by the disavowal of these
premises and anxieties. Taking a client’s history, exploring the meaning of the
symptom, the idea of repression and its defenses, repetition of dynamics still
affectively charged from childhood, these are all ejected from the field. The notions
of free association to get at the language of the unconscious, the role of fantasy,
and specifically transference/counter-transference are disavowed.
Let us listen in on the policy advisers again:
All brief service therapies and delivery mechanisms offer therapeutic

encounter, instead of assessment, at the first session and then provide a
variety of brief service options based on families’ needs. Brief service delivery
mechanisms offer therapeutic help from the first contact and make the most
of the time with young people and their families. Such services address
immediate needs, divert people from waitlists whenever possible and operate
on the premise that “all the time you have is now.”
(Duvall and Burden 2012, 3)
The allusion to “therapeutic encounter” could perhaps be rescued to suggest

something along the lines of what I am intimating here, namely, how to provide
care, get involved in caring with one’s curiosity and free-floating attention, rather
than a fear-based, constrained, formulaic gaze that bends language away from the
province of ignorance, defense, transference, fantasy, and psychic conflict.
We might imagine that the emphasis on scarcity, “all the time you have is
now,” functions to mask the anxiety about possible confrontation and conflict in
the intersubjective dimension of therapy, aspects that are essential in fact for “good
therapy.” SFBT tends to shift attention away from the articulation of a contra-
dictory and paradoxical psychic economy whose functioning might cast some light
on the coordinates of one’s desire and self-process, toward a deployment of
language as technique without depth, as an instrument to produce the language
effects that will constitute a new subject, a shall we say solution-driven subject,
one that is taught to forget and ignore the so-called problem story, the pain,
the past, the unresolved hurts, the puzzles, the traumas, through a great act of
suppression and substitution. The discursive effect is to incite the subject to speak
only of the preferred future, one’s wishes, one’s moments of satisfaction,
competences, where one can confirm oneself, where the evidence would mount
that one is a good, effective, efficient subject after all. Of course, the abatement
of symptoms for the neurotic is temporary, and when the power of the imaginary
relation between the therapist and client subsides, when proximity is abolished,
when contact is reduced, the ego strength by proxy model of care shows its limits.
The effectiveness fades over time, as the research shows, whereas psychodynamic
treatment appears to have a longer lasting effect (Shedler 2010).
Servicing
If we look at how brief therapy is provided within the mental health field, and
examine the logic within specific agencies that dictates which services are selected
to respond to which need against the backdrop of scarcity of resources, and the
204 Carlos Neves
perseverance of demand, we find a very curious phenomenon. First of all, there
are norms around what counts as a mental health problem and what does not, and
what counts as a crisis and what does not, as well as what counts as a disturbance
outside of the norm of child and youth psychosocial development and what does
not. Referral sources (parents, teachers, doctors, psychologists, psychiatrists) have
developed a simple strategy to get access to services when the demand is high
and resources scarce. Amplify the problem story! In fact, assessing need is built
on the premise that more need gets access to service, and in some circumstances
direct service, quicker. The irony cannot be lost on us. SFBT’s central premise is
to silence the voice of problem talk, to obsessively seek out strengths, exceptions
to the problem, to construct a narrative of the subject as one that needs to know
nothing of what ails him/her, in fact is encouraged to forget the language of
suffering, of complaint, of demoralization. And yet, to get access to this curious
therapy in the context of mental health services today (I speak specifically from
first-hand observation in the Children’s Mental Health field) one needs to present
as riddled with problem talk.
Part of what drives the strategy of amplifying the problem story is the affect
of helplessness and anxiety of being confronted with the suffering being for which
there is no immediate solution. The child who cannot attend school due to
debilitating anxiety, the suicidal adolescent, the traumatized child who explodes
at the slightest hint of discord in the playground. The referral sources are pleading
actors, pleading on behalf of those who have confronted them with a demand,
with a plea of their own, signified by their suffering or perceived “disorder.” The
temptation in the face of this is to reduce care to “servicing” (Waddell 1989). We
might think of the servicing aspect of mental health services as “doing things for
people, with the illusion that needs can always be met through material or practical
resources” including therapeutics, like counselling and milieu programs (Waddell
1989, 17). In contrast, “serving” might be conceived not as a subordination to
the whim of the other, a gratifier of needs, but rather as a “standing by,” a “walking
with” or “witnessing,” involving a presence in the midst of “not knowing”
(Waddell 1989); to hold the psychic space, and act as a modulator of pain, by
digesting it and not impulsively reaching after solutions and packaged
formulations. In other words, to observe, describe, and be with the other without
promising any magical relief.
When confronted with the immense psychic pain of the other, the brief
therapist is faced with a challenge. Do I implicate myself in this pain? How can
I be helpful without being engulfed, without letting the problem story devour the
session and render my desire for solution finding as a form of caring irrelevant
and impotent? How do I listen to what is painful, humiliating, sadistic, horrific,
irritating, embarrassing, depressing, confusing, enigmatic, and not hear it as an
ethical demand to stand with my client, instead of shuffling her/him away from
and toward something else? “According to Messer and Warren (1995), the
tendency of SFBT to deflect painful narrative away from problem talk’ to ‘solution
talk,’ may be seen as part of a larger cultural issue” (Stalker, Levene, and Coady
1999, 474).
At a cultural level we seem to distance ourselves from emotional pain and
despair by trivializing the depth and extent of subjective suffering. It is all
too easy to accept our patients’ difficulties because it makes our job easier.
In fact, our patients undoubtedly pick up on ways in which we cannot hear
about or tolerate their pain and accommodate us through pathological
reenactments of their early relationships with caretakers who could not
contain or tolerate their feelings. As psychotherapists, we will only hear that
which we are prepared to bear. We suspect that some brief therapists never
hear the full extent of their patient’s suffering.
(Messer and Warren 1995, 332)
The most direct way to get rid of the anxiety evoked when confronted with the
other’s psychic pain, and the plea for relief that it communicates, is to listen
but not punctuate or further the other’s speech in the direction that it is alluding
to. It is to listen without hearing. It is to shut down a psychodynamic-inspired
curiosity about the other’s experience, their speech, their desire, in favor of a
strategy of avoidance imbued with the promise of relief, suggestion, forgetting.
When solution-focused strategies block the client and therapist from dwelling
at the scene of the psychic wound, that is to say, when there is no willingness or
ability to abide with and learn from the haunting, care is foreclosed and degenerates
to the level of servicing.
Serving
Serving, on the other hand, as Waddell (1989) suggests, could imply a different
kind of relation. It could paradoxically be an offering of “non-action” (not inaction)
as a form of caring. It could involve resisting the fantasy that one could respond
to the need as if it were a demand that could be filled completely (Waddell 1989).
Serving in the way I am imagining here might come close to the ethical action
of care, in that it would offer the hope of development to others, by creating a
space for digesting psychic pain as an alternative to evacuating it through somatic
symptoms, aggressive outbursts, etc., but it would depend upon a capacity of the
helper to tolerate mental pain while keeping speech alive, that is to say, be affected
by the other without being infected by the other, or engulfed by the other’s pain.
Thus, helpers may yet serve as an example to the other of how their pain might
be digested and converted into a form of communication, guided by curiosity that
does not promise to take away the pain or the conflict, but rather serves to create
a safe space for the client to imagine a thoughtful relation to the unfolding of and
response to the predicament. Perhaps in this way psychotherapy may offer a space
for subjects to learn to live with what remains unresolved and in this way return
to life. Psychoanalyst Steven Grosz (2013, 14) makes a similar point in his usage
of the Charles Dickens story A Christmas Carol:
[I]f a patient lets me know what haunts her, the thought she knows but refuses
to think, my job is to be like one of Dickens’ ghosts: to keep the patient at
the scene, to let it do its work.
206 Carlos Neves
Conclusion
I have tried to suggest that the action of orienting to the therapeutic encounter as
a space where a reflective relationship can develop whereby repressed and
traumatic material can be symbolized, and relational dynamics and emotional
circuits can be identified in the service of greater awareness and integration, is
the kind of care that is sidelined and avoided in SFBT. Rather than help the client
stay at the “scene,” SFBT prompts the client to forget and ignore what might already
be known at some level, but unarticulated. Work that requires the possibility of
duration, if not in fact at least in intention, that is to say, work that requires a faith
in the ongoing nature of the encounter as a process, interminable in principle, this
kind of work is judged as unethical. The appeal to scarcity of resources and
contracted time as an ethical rationale prompts the suspicion that such a discourse
may mask a deeper anxiety about transference and confrontation in the
intersubjective field of the therapeutic space. If psychotherapy is at its root nothing
more and nothing less than the conscious and unconscious intersubjective
exchange of word, deed, memory, and desire that occurs between therapist and
client, it is critical that a non-instrumental, I am tempted to say here “playful”
atmosphere is cultivated, where transference experience is encouraged to emerge
and develop, so as to learn something from that which haunts. SFBT employs
curiosity as a driving force, but it is a curiosity that is constrained by imperatives
that discourage the noticing of that which haunts, of staying at the scene long
enough to let it do its work, of getting in touch with the anguish of loss. SFBT
promotes itself as curiosity in the service of finding solutions, but it is a curiosity
that is not curious enough, a curiosity that only detects what the therapist’s desire
is driven to hear, and in this way hypnotically invites the client to identify with
that desire, rather than follow the lead of the client’s speech wherever it takes
her/him.
References
Austad, Carol Shaw. 1996. Is Long-Term Psychotherapy Unethical? Toward a Social Ethic
in an Era of Managed Care. San Francisco, CA: Jossey-Bass.
Bond, C., Woods, K., Humphrey, N., Symes, W., and Green, L. (2013). “Practitioner Review:
The Effectiveness of Solution Focused Brief Therapy with Children and Families. A
Systematic and Critical Evaluation of the Literature from 1990–2010. Journal of Child
Psychology and Psychiatry 54(7), 707–23.
de Montaigne, Michel. N.D. BrainyQuote.com. Retrieved October 14, 2015. www.brainy
quote.com/quotes/quotes/m/micheldemo138368.html.
De Shazer, S., I. Berg, E. Lipchi, A. Molnar, W. Gingerich, and M. Weiner-Davis. 1986.
“Brief Therapy: Focused Solution Development.” Family Process 25(2): 207–21.
Dermer, Shannon B., Crystal Wilhite Hemesath, and Candyce S. Russel. 1998. “A Feminist
Critique of Solution-Focused Therapy.” American Journal of Family Therapy 26(3):
239–50.
Duvall, Jim, and Angela Burden. 2012. No More, No Less: Brief Mental Health Services
for Children and Youth. Ottawa: Ontario Centre for Excellence for Child and Youth
Mental Health.
Government of Ontario. 2011. Open Minds, Healthy Minds: Ontario’s Comprehensive
Mental Health and Addictions Strategy. Toronto: Ministry of Health and Long-Term
Care.
Grosz, Stephen. 2013. The Examined Life: How We Lose and Find Ourselves. New York:
W.W. Norton & Company.
Farber, B., R. Lippert, and D. Nevas. 1995. “The Therapist as Attachment Figure.”
Psychotherapy: Theory, Research, Practice, Training 32(2): 204.
Fink, B. 2007. Fundamentals of Psychoanalytic Technique, 1st Edition. New York: W.W.
Norton & Company.
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com/quotes/quotes/m/martinheid210962.html.
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Iveson, C. 2002. “Solution-Focused Brief Therapy.” Advances in Psychiatric Treatment
8(2): 149–56.
Kohut, Heinz. 1984. How Does Analysis Cure? Chicago, IL: The University of Chicago
Press.
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and in the Technique of Psychoanalysis, 1954–1955. Translated by Sylvana Tomaselli.
New York: W.W. Norton & Company.
——. 1991b. The Seminar of Jacques Lacan, Book I: Freud’s Papers on Technique,
1953–1954. Translated by J. Forrester. New York: W.W. Norton & Norton.
——. 2006. Écrits: The First Complete Edition in English. Translated by Bruce Fink. New
York: W.W. Norton & Company.
Messer, S.B. and C.S. Warren. 1995. Models of Brief Psychodynamic Therapy:
A Comparative Approach. New York: Guilford Press.
Pereira, João G. 2010. “Transference and the Therapeutic Relationship—Working For or
Against It?” Gruanaliseonline—New Series 1: 1–14.
Shedler, Jonathan. 2010. “The Efficacy of Psychodynamic Psychotherapy.” American
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Practice.” Free Association 1(15): 1–35.
11 Rethinking the concept
of care
Han Zhang
其所厚者薄，而其所薄者厚，未之有也。
(礼记·大学)
It never has been the case that what was of great importance has been slightly cared
for, and, at the same time, that what was of slight importance has been greatly
cared for.
(Confucius, The Great Learning)1
The translation of care into a Chinese word yields many different results. As a
language that embodies a long history and cultural transitions, different ways of
translating the word care bring to our attention the many different usages, forms,
and conceptions that the notion of care could take. As more research on care begins
to use a transnational framework that examines the often layered and complex
relations of care in an era of global migration and neoliberalism, it is useful to
rethink the concept of care in a truly transnational and intercultural manner, that
is, to treat the boundary between East and West as a discursive space in which
differences can be engaged for deep thinking and reflective conversation. The Neo-
Confucianist philosopher Tu Weiming (1985, 16) aptly describes such a discursive
space as the “fruitful ambiguity”:
The clear boundaries that define East and West, or for that matter North and
South, usually do not provide the necessary intellectual impetus for deep
thinking. Rather, the subtle, nuanced differences in between offer greater
opportunity for critical scholarship.
In this chapter, I will first briefly survey the different ways in which care is con-
ceptualized and operationalized for research. In many studies on care, what is often
left unexamined or taken for granted is the particular notion of care, as if it pertains
to a universal meaning and practice. I will then try to rethink the concept of care
in the context of a qualitative study I co-investigated, titled “Understanding
Tensions in Elder Care among Chinese Families Living in Toronto.”2
In the study, we used an intersubjective approach to examine the complex lived
experiences of both Chinese elders who live with their adult children, as well as
210 Han Zhang
adults who live with their elderly parent(s). There were 24 in-depth interviews
conducted with both seniors and adult children as a way to understand how the
meaning of care is constructed, challenged, and negotiated in an intersubjective
relationship. Different concepts of care as formulated in the literature all manifest
in one way or another in the 24 stories we collected. However, as I will argue
later, there seems to be an impasse in conceiving the concept of care, which is
fundamentally abstract and ambiguous, and often unspoken or held in abeyance
by both the subjects under the study and by the researchers. How might we interpret
qualitative data and narratives in a way that brings to the surface those hidden
ethical collisions and tensions that could arrest, engage, and reflect the ambiguity
of the concept of care itself? How can we treat a subject’s speech as embodied
in values and beliefs, and as an orientation to the notion of care that goes beyond
the discourse of the exchange of labor and services, productivity, self-management,
and the scarcity of time and resources? I will attempt to analyze the impasse in
one of the stories as a beginning to rethink the concept of care as an ethical problem
that pertains to the subjectivity and selfhood of the individuals, and as a discourse
on the value of life.
The problematization of care as a need

One of the most prominent ways of depicting care is to view it as a need—a need
by a certain part of the population due to its weakness or limitations, which requires
help and assistance from society as a whole in the model of social justice and
equity. Not only is meeting the public’s needs the aim of healthcare and the core
value of the welfare society, it has also become the dominant ideology for the
provision of healthcare in the name of “needs-based” services or “patient-centered
care.” On the surface, it seems like the subject who possesses or expresses the
need is at the center of the formula. Under closer examination, treating care as a
need poses the risks of the concept being appropriated for the planning,
management, and allocation of healthcare services and social resources.
For example, the need for elder care in China has always focused on the relation
between the individual and society at large, rather than on the individual within
his or her own family and community. We will examine further why care is not
viewed primarily as a need but as a responsibility or obligation in Chinese families
under its Confucian influence. Looking at the historical development of geriatric
care in the public health system in China, we can see how this formula of care as
a need is inscribed in the system’s ideological transformation from elitism to
utilitarianism.
In China, geriatric care is often characterized as hospital care for elderly
Chinese. A study on all admissions of seniors aged 60 and above to the Geriatric
Department of Peking University First Hospital in Beijing between 2003 and 2005
showed that 75.1 percent of the seniors were male (Flaherty et al. 2007, 1297).
The disproportional gender balance in elder care beneficiaries was linked to the
fact that all geriatric departments in university-based hospitals have primarily
developed to meet the need for care from retired government officials and workers
Rethinking the concept of care 211
(Flaherty et al. 2007, 1295). Therefore, the need for elder care in China’s healthcare
system has for decades been limited to the needs of retired government officials
who are seen as entitled to receive the most social benefits from the state.
In recent decades, with the increasing number of public and private hospitals
in both urban and rural areas, admission to these hospital-based long-term care
units has begun to accommodate, and often to be restricted to, another type of
need for people with “three nos”—“no ability to work, no source of income, and
no family support” (Leung 1997, 92). This implies an ideological shift from an
elitist healthcare system to a utilitarian one in which resources and benefits must
be redistributed to those who most need them, in this case the disabled, the poor,
and the family-less. Leung also mentions that the primary purpose of these units
is only to ensure the survival of the seniors, rather than aiming to improve the
well-being and quality of the life of the residents (1997, 92). As we can see, in
the extreme case of treating care as a need that is prescribed by society to the
individual, elder care can be conceptualized as a basic need for survival for those
who cannot otherwise afford it. As China struggles to improve its welfare system
to accommodate an aging future, the entire world seems to be panicking about an
aging society. Numbers, percentages, and statistics about the rapidly aging
population worldwide in both media and scholarly literature become the commonly
used rhetorical devices to frame the need for elder care as a crisis and social
problem. The need for elder care here often remains abstract and elusive, as if the
irrevocable force of aging cannot by rescued by any concrete measures other than
the translation of the problem into a threat for the present and a haunting reminder
of a potential downward slope on the economy, growth, and everything prosperous
if we cannot find a solution. The Economist called the aging population “invaders”
(“Age Invaders” 2014) as if between now and then there exists a crossing line
that marks the beginning of this systemic problem, which is often depicted as a
time-bomb with an unpredictable threat to the demand for care. To accompany
this quantification of aging as a social problem, the need for care is often described
in terms of its size, volume, and economic impact, rather than its specificities and
meaning. In such a rhetoric, aging is described as an unstoppable train that poses
elder care as a social need that differs fundamentally from other needs because
of its irrevocability, incurability, and inevitability. It is a need for which the solution
is yet to be found and the ambiguity of which continues to be problematized and
presented as an economic problem.
Care as an enigmatic responsibility

In cross-cultural literature on elder care, China is often praised for its strong
traditional foundation in family support, which functions as a cushion for the public
health system. Studies (Ikels 1998; Lai 2010) even try to prove that the traditional
Confucian value of filial piety can effectively reduce caregiver stress as if care as
a responsibility serves as the best antidote for reducing the burden of the need for
elder care in society. The tradition is often recollected as the good of an old-
fashioned social value that is being threatened and eroded by modernization and
212 Han Zhang
its alleged concomitant of individualism. But the praise of the tradition often skims
over the question of the quality of the inheritance, seeming more focused on the
erosion of what must remain enigmatic.
Family and community support are still some of the best assets that China
has. Whether it stems from some part of their cultural background such as
Confucianism or is a natural part of living in a crowded country, without this
“informal” support, the burden of caring for older people on the formal system
would dramatically increase. Although the benefit of this aspect of Chinese
culture is difficult to measure accurately, and although many believe it is
changing, the more China can “use” and encourage the maintenance of this
natural resource, the better off it will be in terms of caring for its growing
elderly population.
(Flaherty et al. 2007, 1299)
What fascinates the authors above is the phenomenon and apparent success of
family and community support for the elderly in China, an “asset” seeming to work
so well that it reduces the need for society to intervene. Here we can see that the
concept of care as a need for social support on the one hand, and as a private and
individual responsibility one exercises (especially in a family and kinship relation),
on the other hand, are put in opposition. This line of thought is also evident in the
criteria set by the hospital for admitting geriatric patients—only those without family
support are designated as having the need for social welfare. If both society and
the family are responsible for taking care of the aged, the family is still considered
the primary locus where elder care belongs.
The interaction between the informal and formal care system in China points
to a structural debate that reaches beyond the impact of the moral constraint of
filial piety on individuals. We need to be mindful not to treat the Confucian value
of filial piety as an external and forceful moral guide for the individual, but to
also look at how this traditional value is appropriated and redistributed as an
ideology that produces strong normative power to be exercised by the state and
institutions. For example, due to the cultural expectation for family care, many
people in China still feel reluctant to seek institutional care arrangements for their
elderly parents because they are afraid of being stigmatized as irresponsible
children (Zhan el al. 2011). In other cases, some would equate good quality elder
care to providing the elderly with abundant financial and material resources. If
the absence of elder care becomes equivalent to people with “three nos,” the notion
of elder care itself as an ideal form still remains absent in the public imaginary.
Nevertheless, the state continues to enforce the importance of family as the
primary care domain for the elderly, in a way that demonstrates a strong adherence
to the Confucian value of filial piety. Elder care as a family responsibility was
legislated and the Law of the People’s Republic of China on Protection of the
Rights and Interests of the Elderly was promulgated to define the respective roles
of the state, community, and family in providing elder care. Under the legislation,
husbands and wives are legally responsible for supporting their parents and
parents-in-law. The state’s effort to delineate the boundary between elder care
as a private and public responsibility further reduces the notion of care to an
indisputable private and individual responsibility.
Article 10. The elderly shall be provided for mainly by their families, and
their family members shall care for and look after them.
Article 11. Supporters of the elderly shall perform duties of providing for the
elderly, taking care of them and comforting them, and cater to their special
needs.
(Law of the People’s Republic of China on Protection of the
Rights and Interests of the Elderly 1996)
Note how the duty of providing elder care in the legislation remains vague without
referring to any notion of what constitutes good and ethical elder care. Even under
such legislation, the young generation under the one-child policy continues to be
the subject of criticism for their detachment from the tradition. The problem here
is not about the opposition between the traditional and the modern, or the
preservation and loss of traditional value, as many seem to be claiming, because
the impasse of the debate lies in the problem of conceptualizing care primarily as
a private responsibility that is prescribed and enforced by the state as an external
and impersonal duty.
The discourse on filial piety points to a contested field where individual
responsibility for care and social justice clash. Such a clash is often left
unexamined in research that blames modernization, urbanization, and economic
prosperity as the cause of a weakened social foundation of family care for the
elderly (Sheng and Settles 2006; Cai et al. 1994; Jia 1988; Kwong and Cai 1992;
Leung 1997). To put it in a simple way, if we conceptualize care as a private
responsibility, one that belongs to the individual, the society starts to incorporate
the ideology that it will only be responsible for elder care when the individual
fails to be. In this case, if the individual defers the responsibility to society, he or
she runs the risk of being stigmatized as being irresponsible. Hence, the failure
of elder care is and will always be the individual’s fault. Only within the context
of such a logic does the burden and pressure on society for elder care result from
the erosion and weakening of the foundation of familial care.
The problem of treating care as a responsibility will always return to the
question of who is responsible and why, which is a problem of social justice that
is inherently complex. But the ruling conception of care is often reduced to a
calculation of the number of people available to take upon this responsibility:
With the one-child policy reducing family size, more working wives and
rapidly growing divorce rates, the pool of potential caregivers has shrunk,
affecting both the capacity and the willingness of the family to provide care
and support to the elderly.
(Sheng and Settles 2006, 298)
214 Han Zhang
The concept of care is quantified as a need for society to intervene, and formulated
as a responsibility that is calculated by the number of individuals. If the number
of individuals who are supposed to be responsible decline due to the one-child
policy, the responsibility will at some point fall out of the individual’s hands and
become a public problem.
The critique of care as the “totality of people-centered work”

Previous conceptions of care often use economic and statistical information to
justify care’s importance and urgency. Such approaches that treat care as a quanti-
fiable social problem are examples of what Hannah Arendt calls a “communistic
fiction” introduced by liberal economists who assume “one interest of society
as a whole in economics” (1998, 43). The consequence of the rise of the social
is the devouring of the sphere of intimacy—“the intimacy of the heart” that belongs
to the private sphere and that has “no objective tangible place” in the world
and cannot be localized in the public space with certainty (Arendt 1998, 39). The
experience of care, be it pleasurable or burdensome, is something that cannot be
represented or rationalized by the laws of statistics. They are meaningful everyday
relationships that only disclose themselves in “rare deeds” and not in the “everyday
life” captured by the logic of statistics (Arendt 1998, 42).
Care as a need and a responsibility still remains at an abstract level and does
not touch upon the specificities of practicing, giving, and/or receiving care. The
exchange, interaction, and give-and-take of care is the main focus of theoretical
and empirical research on caregiving. On this level, studies can be seen as
approaches ranging from focus on caregiver burden, to feminist perspectives on
identity.
Carol Thomas’s (1993) essay titled “De-Constructing Concepts of Care” offers
a comprehensive survey of how care to her seems to be conceptualized in
sociological, social policy, and feminist research. She recognizes that the concept
of care in most sociological research lacks a clear definition and an epistemological
status. Not only is the meaning of care often treated as given, but the concept is
presented as a partial and fragmentary one, and as an idea lacking a theoretical
unity. Based on this observation, Thomas tries to deconstruct the concepts of care
as they are used in social research and searches for a unified concept that captures
all of its partial meanings. Unfortunately, Thomas’s project at its best produces a
uniform but external definition reflecting a neoliberal discourse on care as primarily
a laboring activity that is embedded in different social relations of production.
Such a construction of the notion of care eventually leads her to conclude that
care has no theoretical status, it is “a descriptive concept like ‘housework’ or
‘manufacturing work’ . . . The unified concept of care describes the totality of
society’s people-centered work” (Thomas 1993, 666). She breaks down the
concept of care into seven conceptual categories:
1 The social identity of the carer.

2 The social identity of the care recipient (children, old people, patient, the sick).
3 The inter-personal relationships between the carers and the care recipient
(family, friends).
4 The nature of care (feeling vs. activity).
5 The social domain within which the caring relationship is located
(public/private).
6 The economic character of the care relationship (paid, unpaid).
7 The institutional setting in which care is delivered (home, hospital, long-term
care facilities).
These categories imply that the notion of care is a concrete and specific practice
that the “carer” (subject of care) gives to the care recipient (object of care). The
practice can be located in a specific social relationship, such as family and friends.
In the private domain this type of practice (as she assumes of care) is measured
as labor and translated into economic terms (paid/unpaid); in the public domain,
such a practice of care is considered as a service. Her only category that implies
an engagement with care as oriented and phenomenologically vital is to recognize
its residual character as a “feeling.”
In exemplifying such externalizations of the notion of care, Montgomery and
her colleagues (1985) define caregiver burden as two dimensional: objective
and subjective. The objective burden of care refers to the limits and disruptions
of care due to external factors, such as finance, time, energy, and privacy. This
dimension identifies care as an impersonal and objective activity that requires labor
and resources that are external to the subject of care. Splitting the concept of care
in such a way into the objective and subjective resembles the Western dichotomy
between the body and the mind, and demonstrates an “either/or” approach to care
and burden. The subjective concept of care as a feeling is oriented to the idea that
giving care produces an emotional response and/or return for the subject. If the
feeling is negative, it becomes a burden, which refers to the emotional and
affective reactions to caregiving experience (Montgomery, Gonyea, and Hooyman
1985) and such a dimension of care is further divided by scholars into positive
and negative feelings of caregiving (Kramer 1997a, 1997b; Ryff 1989a, 1989b).
Psychological measures and self-assessment on a point system are commonly used
to calculate the level of either positive or negative feelings associated with
caregiving.
What is problematic with this subjective-objective split is that it always
considers care as something external, practical, and descriptive that can be given
or taken by a person to another, so that the notion of care itself still remains
ambiguous. As Alan Blum suggests in his work on the imaginative structure of
the city, such representations of a problem, be it objective or subjective, always
“sacrifice the temptation to treat the cliché as a matter which we must decide
factually or argumentatively in order to treat it as the surface of an implicit discourse
in relation to a problem which remains to be explored” (2003, 193). The problem
of care deserves its own theoretical grounding, and should serve as the beginning
of a stronger analysis that seeks to work through and bring to life the fundamental
ambiguity of the problem, often masked by the clichés.
216 Han Zhang
From externalization to orientation
If we treat the concept of care as something concrete, descriptive, and tangible,
something that can be quantified and measured, we run the risk of externalizing
it in a way that Arendt (1998) warns as devouring the peculiarity and meaning-
fulness of such a concept in our sphere of intimacy and subjectivity. Treating care
either as an economic problem against the backdrop of productivity or as a means
to reproduce our material conditions marks the loss of Arendt’s distinction between
labor, work, and action. Care, rendered as a social problem for society, raises
important questions about the ethical and moral value of work, rather than its
economic value. It forces the state to question the worthiness of public spending
and drives caregivers to think about the value of such a willingness, action, commit-
ment, devotion, and even sacrifice. In questioning the value of care, we move from
treating care as an external force to conceptualizing it as an orientation. Simmel’s
(2010, 1) theorization of our individual life form in the vastness and infinity of
the world offers us a model for conceptualizing such an orientation:
We are continually orienting ourselves, even when we do not employ abstract

concepts, to an “over us” and an “under us,” to a right and a left, to a more
or less, a tighter or looser, a better or worse. The boundary, above and below,
is our means for finding direction in the infinite space of our worlds. Along
with the fact that we have boundaries always and everywhere, so also we are
the boundaries. For insofar as every content of life—every feeling, experience,
deed, or thought—possesses a specific intensity, a specific hue, a specific
quantity, and a specific position in some order of things, there proceeds from
each content a continuum in two directions, towards its two poles; content
itself thus participates in each of these two continua, which collide in it and
which delimits.
The fundamental difference between treating care as an externalization and as an

orientation lies in the recognition of subjectivity—the transcendental nature of an
individual. As we orient ourselves toward some form and order of care, we
encounter the boundary and form-giving significance of an otherness. However,
we also have the power to overcome that symbolic boundary, to transcend its
imaginary order and to become it as we manifest our particularities. Treating care
as such an orientation allows us to examine the dialectical space between the subject
and his or her relation to the notion of care. Such an approach permits us to see
how the notion of care is formed and absorbed by the subject as a symbolic order,
and how the subject, through its unique orientation to it, challenges, negotiates,
and transcends its border. It is in such a discursive space that we seek to preserve
the unity and the differences of the concept of care as it manifests in and through
each individual.
In the qualitative study we conducted, the objective was to understand the
lived experience and intersubjective relations between Chinese seniors and their
adult children. Specifically, semi-structured interviews were used as a method to
solicit narratives and stories that the subject constructs to make sense of his or
her own experiences and the meanings they hold. Our research participants were
encouraged to freely share their experiences with their family members, especially
those involving conflicts and tensions in the caring relationship. We decided to
remove the label of caregiver and care recipient in our research planning as a way
to avoid prescribing the self-perceived identity of the subject. Indeed, all of our
participants identified themselves as subjects in a reciprocal, even if asymmetrical,
caring relationship, rather than as sole caregivers or recipients. Due to the openness
of our interviews and the nonrestrictive nature of our research questions, we were
able to gather rich details of a person’s story, immigration and family history, family
relationships, and emotions. The purpose of this chapter is not to conduct a
formal analysis of the research data, but to demonstrate the ways in which care
can be conceptualized as an orientation that a subject establishes toward a symbolic
order that both delimits and gets transcended by the subject.
Ambivalence and intimacy—the story of Mr. Wang

Mr. Wang is an 80-year-old senior who moved to Canada to live with his son and
daughter-in-law more than 10 years ago. Knowing that the agenda for the interview
was to talk about tensions in the caring relationship, he started to express his feeling
of ambivalence the moment he sat down:
I feel very ambivalent in my heart. Thinking about it . . . I really want to live

with my child, but now that we actually live together, I really want to go back
(to China).
(Interview transcript 2015)
After gaining more knowledge about his immigration history and family relations,
the interview started to take shape with a focus on understanding his ambivalence,
which was a central emotional thread that connected all of his stories together,
and an emotional impasse that he himself had trouble coming to terms with. To
some degree, he came to the interview hoping to both express his frustration with
such a recurring and intensifying feeling, and to reflect on his feeling as a way to
understand it better for himself. A couple of times, he tried to address the question
of why he felt a certain way to me, hoping that I, as an interviewer, could offer
him some answer.
It is difficult to summarize his story briefly, but the overall trajectory of his
experience echoes that of a large number of Chinese seniors who live with their
children, both from our interviews and from other studies on transnational
caregiving relations (Mandell et al. 2015). After Mr. Wang’s only son, daughter-
in-law, and two grandchildren immigrated to Canada, he also decided to immigrate
here with his spouse in order to help take care of the family—raising grandchildren
and easing some burden for his children. Many years after he lived with the family,
his spouse developed dementia and passed away; his children got divorced; he
lost custody of the grandchildren; his son lost the house, which was bought with
Mr. Wang’s life savings, to the daughter-in-law; and he began to live with his son
218 Han Zhang
alone. Before he immigrated, Mr. Wang recalled a history of how he took care
of everything for his children. He raised his son, supported his education, bought
a house for his wedding, and helped him raise his first grandchild in China. After
his son immigrated successfully to Canada, Mr. Wang helped his daughter-in-law
with all of her immigration planning, including supporting her financially to attend
school in Vancouver. In order to help her focus on her studies, Mr. Wang first
moved to Vancouver and lived with his daughter-in-law to take care of the
grandchildren. He also decided to sell off all of his properties in China and bought
a house for his children in Canada. In his words, he saw no value in keeping the
assets for himself.
Most of the interview was focused on Mr. Wang recalling his unconditional
efforts to take care of his son, both before and after his immigration. At the same
time, according to his narratives, neither did his son nor his daughter-in-law show
any appreciation and respect for his care. On the contrary, his daughter-in-law
was very rude and disrespectful to him, describing his help as either too much or
not good enough. Nevertheless, the sense of ambivalence did not come from any
kind of anger or dissatisfaction with his unappreciative children, but rather from
a sense of disappointment and renouncement. He described his initial intention
to move to Canada as to help reduce the burden of the family. In his original
expectation, as long as he offered his best to take care of the family while he was
still capable, his children would for sure take care of him when he became old
and frail. But the reality is, now that he is already 80, he is still taking care of his
family. After so many years of providing care, he started to feel exhausted
both physically and emotionally, and questioned whether his effort was worth it.
He already gave up the hope of depending on his son, and he often contemplates
whether he should go back to China and hire an hourly social worker to take care
of him. The idea that he would rather pay for a stranger to take care of him
than burden and trouble his son was very strong throughout the interview. In his
words, the intimacy and affection of his family (qin qing) disappeared. He did
not know how to describe what he meant by this intimacy, but to him, something
fundamental about the family was lost.
In a recent study by Nancy Mandell and her colleagues (2015) on transnational
family exchanges in senior Canadian immigrant families, they created focus
groups with 91 immigrant seniors in Toronto and found very similar trajectories.
The elderly parents often offer more and continuous help in terms of financial
assistance, grandchild care, and domestic housekeeping to their children as much
and as long as they can. These seniors also reject the idea of treating care as a
form of labor or work that deserves any kind of compensation. According to
Mandell, caring for the family entails a “family-first” ethic, intimate relationships,
“an expression of love, nurturing, affection, and commitment [rather] than a set
of tasks and responsibilities” (2015, 87). However, similar to Mr. Wang, these
seniors often experience feelings of loneliness, burnout, and isolation, while at
the same time feeling proud of their efforts. The researchers concluded that these
contradictory effects lead the seniors to the feeling of ambivalence when they assess
their own lives (2015, 93).
The different arrangements, situations, and patterns of care in immigrant
families are well documented and we can find similar stories in many research
studies. However, arriving at the conclusion that many seniors feel ambivalent
and have mixed attitudes toward their life choices does not necessarily offer us
any insights on the real problem. The way ambivalence is formulated here reminds
us of the division of the concept of care as a feeling and an activity. The positive
feeling of care (rewards, satisfaction, pride) clashes with the negative consequences
of the caring activity (compromised well-being, physical burnout), producing
ambivalence as an impasse that separates the nobility of care from its consequential
burden. Care and burden are again put onto two opposite axes.
How can we rethink the concept of care in Mr. Wang’s case so that we recognize
the ambivalence as something fundamental and essential rather than consequential?
In other words, how do we consider burden as inherent in care rather than external
to it? Heidegger’s ontological concept of care offers us a perspective on treating
care as an orientation to life that is characterized as a concern, and on treating burden
as a primordial response to the limit of Being. In Being and Time, Heidegger (1962,
224) says, “Dasein’s Being reveals itself as care.” Deriving from a Greco-Roman
myth on Cura, who fashions the human being and holds it as long as she lives,
Heidegger describes Dasein’s being as care. Dasein’s existence is first characterized
as a thrownness into the world, therefore, it is “always also absorbed in the world
of its concern” (1962, 236–7). Such a concern not only impinges on Dasein’s own
being-in-the-world, but is always also a “being-with-one-another, being with
Others” (Heidegger 1992, 7E). Therefore, care captures the fundamental relation
of ourselves to other beings in the world in the form of an ontological concern.
Heidegger’s existentialist notion of care helps us make the connection between care
and burden—the fundamental condition of our being (care) is always already
burdened by an orientation to concern. What is Mr. Wang concerned about and
how is he oriented to the notion of care?
Based on the detailed narratives of Mr. Wang, we can attempt to interpret his
story differently and consider his orientation to care as embedded in values about
a strong family. Mr. Wang believes in the idea that his role as a father is to provide
for the family. The identity of Mr. Wang as the provider and guardian of the family
was evident until the end of the interview, where he expressed his final resolution
with the feeling of ambivalence:
I think, after all, I still cannot go back to China. I still cannot let go of my
concern. I cannot let go of my concern (for my son and grandchildren). Maybe
till the day when my grandson and granddaughter could strive a path for
themselves, maybe then I would feel better.
(Interview transcript 2015)
The important questions to ask is what qualifies as a family for Mr. Wang; what
kind of values does he attach to the idea of a strong family; and what kind of
selfhood is implied by these values? When he expressed that the sense of an intimate
family disappeared, got lost, and was lacking, what was the imaginative structure
220 Han Zhang
of a family, or its ideal form, to which he adhered? We can infer from Mr. Wang’s
speech that a strong family should have a shared sense of tightness, intimacy, and
vitality. It should be a family that strives and aspires to become better. To achieve
this is the goal and responsibility of the father. Mr. Wang’s orientation to his family
reflects this imaginary order. He has devoted most of his life to this ideal form of
family—investing in his son’s education, helping the family achieve a better future
in Canada, buying assets, and raising the grandchildren. One wonders whether
his background as a highly educated engineer has any influence on his role as a
planner and supporter in the family.
The imaginative structure of a strong family to Mr. Wang is like a life-long
project that drives him and invests him with the desire to provide as much as he
can. Therefore, the notion of care is strongly tied to this imaginative structure of
an intimate and vital family, and his role as a responsible provider and guardian.
However, this imaginary order was undermined by the reality—the divorce of his
children, the loss of the property, the distance from his grandchildren, and eventu-
ally the estrangement from his son. The vitality, intimacy, and purposefulness of
the family deteriorated as time went by and the value of his care slowly lost its
ground, meaning, and jouissance. For Mr. Wang, care is burdensome, but when
it is oriented to a strong cause, it becomes necessary. People lift weights in order
to become stronger; engineers go through tremendous difficulty in order to build
something strong. In this case, Mr. Wang’s care was intended to make the family
stronger and better, and burden seemed essential to such an endeavor. It was only
after his project hit an end did he realize the lack that made the burden problematic,
excessive, and detrimental.
On the surface of the matter, what puzzles Mr. Wang seems to be the loss of
family intimacy, the specificity of which also remains puzzling. But if we think
of Mr. Wang as a subject who is oriented to an imaginary order as in Lacan’s
imaginary–symbolic–real triad, the ambivalence he feels points us to the funda-
mental lack of the subject. As Lacan (2002) illustrates in his theory of the mirror
stage, language, culture, and social norms—the system of meaning and identity—
afford the subject the illusion and identification that resembles the imaginary
self, but the very fact that the symbolic order is always other than the self betrays
the subject’s pursuit of completeness. The lack in the being of the subject is not
created by the loss of something. Rather, the lack is created in the subject’s
imaginary form of the self that is conceived as a whole and complete. This funda-
mental lack manifests itself in the form of desire that reflects both the subject’s
pursuit of completion in the imaginary order and the inherent otherness, alienation,
and incompleteness in the symbolic order.
This brief interpretation of the values Mr. Wang attaches to the notion of family
and care attempts to add a new dimension to the empirical findings that often
attribute such a feeling of ambivalence to loneliness, isolation, and other social
and cultural barriers. It is not meant to reduce the discourse to a highly subjective
reading of the story, but rather to bring to attention how a different conception
of care could offer us a new interpretation that treats the empirical finding of
ambivalence as an analytical beginning rather than as a conclusion and an end.
The concept of care as an orientation encourages us to think about the subject’s
selfhood and understanding of values as the underpinning driving force and desire
for confronting the symbolic order of care.
Mr. Wang’s idea of a strong family helps advance the analysis one step further
beyond the traditional discourse on the symbolic order of filial piety. His
ambivalence does not originate from a sense of dissatisfaction for his son’s failure
to adhere to the tradition, but rather reflects a struggle with his own identity and
the imaginary structure of an intimate and vital family. Mr. Wang’s final resolution
with the feeling of ambivalence showed a strong identity as a guardian. Even when
the idea of a strong family is no longer there for him, he still chooses to stay with
the family because he cannot let go of his concern for it. The subject’s identity
and selfhood become significant lenses through which we can attain a better
understanding of his or her orientation to care.
Toward an intercultural understanding of selfhood

and its significance for care
In cross-cultural and transnational studies on caregiving practice and elder care,
cultural difference is often formulated in the form of various cultural and social
determinants that impede a subject’s ability to provide care. These cultural
differences—such as language, community and social support, financial resources,
socioeconomic status, traditions and values—are often considered as the primary
influences on the political economy of material and care provision in senior
immigrant families. Therefore, the subject’s traditional life trajectory is disturbed
and displaced by the transnational process, which is often “characterized by
mobility, insecurity, separation, and new tasks” (Mandell et al. 2015, 75). In this
discourse, the notion of care becomes situated in a family relation that is subject
to the objective and external changes in cultural and social contexts. The location
of care in the midst of the objective cultural and social displacement invites us to
think of an approach that examines the ways in which the transnational subject
orients toward these objective influences and social facts, without conceiving the
notion of care as a split between activity and feeling. Such a split reminds us of
the Cartesian dichotomy between the body and the mind and what Wu Kuang-
Ming (1997, 11) calls the “Western theoretico-technocratic mode of dealing with
things.”
The concept of care as an orientation that a subject establishes toward the
imaginary order of care seeks to reveal the impasse between the objective and the
subjective dichotomy of care by redirecting it to a discourse of values, selfhood,
and identity. Subjectivity under this line of thought does not refer to just feelings
and emotions. It is understood as what Bataille (1992, 28) designates as the ground
of human existence and describes as a state of “immanence,” like “water in water.”
The continuous and undifferentiated immanence describes our fundamental
existence as “always already” part of the “objective” thing-world. It is this
“relation to their intimacy,” the “deep subjectivity,” that gets lost when human
beings introduce the “object” as an exteriority, as something “strictly alien to the
222 Han Zhang
subject,” and as “the perfect—complete, clear and distinct—knowledge” (Bataille
1992, 29, 33). What we perceive as the objective world will always return to us:
“In this end, we perceive each appearance—subject (ourselves), animal, mind,
world—from within and from without at the same time, both as continuity, with
respect to ourselves, and as object” (Bataille 1992, 31). What Bataille reveals is
the fundamental paradox of the Cartesian subject–object dichotomy—we can only
know ourselves (subjects) as we see ourselves “from the outside as another”
(Bataille 1992, 31).
The notion of the fundamental ambiguity, even impasse, between the subject
and the object, the body and the mind, is a common problem that appeals to the
critical traditions from both the East and the West. Bataille’s (1992) and Simmel’s
(2010) notions of ambiguity both acknowledge the potential of human subjectivity
to recognize and transcend the impasse and abyss between interiority and
exteriority. In formulating care as an orientation, we are essentially speaking of
the subject’s relation to the self through the process of thinking, or of what Arendt
(1978) calls the silent dialogue of one to oneself. Thinking, according to Arendt,
does not refer to the Cartesian subject who tends to project a universal and
totalitarian view of the world, nor does it take self-knowledge as its purpose.
Thinking should help the subject “dissolve accepted rules of conduct” (Arendt
1978, 192) and prepare the subject for judging particulars without the interference
of pre-established universals. In other words, thinking refers to the “non-cognitive,
non-specialized sense as a natural need of human life” (Arendt 1978, 191), which
precedes judgment and self-knowledge as the primordial dialogue between the
self and the soul.
The concept of thinking as embodying both the body and the mind is prominent
throughout traditional Chinese thought. In Neo-Confucianist thought, reflective
thinking is formulated as caring for oneself in the form of self-cultivation, which
is an integral part of a person’s quest for spiritual fulfillment. According to Tu
Weiming (1985, 57), “learning to be human . . . centers on the self, not the self
as an abstract idea but the self as the person living here and now.” The notion of
Confucian self-cultivation conceives the subject as both “a thinker engaged in
philosophizing” (Tu Weiming 1985, 21) and as a concrete person embedded
in ordinary daily existence. And it is because of one’s “situatedness in a particular
network of dyadic relationships” that self-cultivation becomes a social and
communal act (Tu Weiming 1985, 15). Before a person can establish and take
care of a family or a state, he or she has to learn to care for himself or herself
first. At the same time, the development of oneself involves socializing with others
and harmonizing various kinds of relationships. The social aspect of the subject
is integral to self-transformation and his or her inner experience. Therefore, caring
for oneself, in the Confucian ethics, is an unceasing dialectical process of “self-
transformation as a communal act” (Tu Weiming 1985, 67). Self and other are
not in an oppositional relation, but are rather two sides of the same coin. To
transcend oneself is to harmonize human relatedness for the purpose of self-care
and self-cultivation. Not only does the Neo-Confucianist concept of self-cultivation
transcend the impasse between the self and the other, and the subjective and the
objective, it also offers a perspective from traditional Chinese thought on the
importance of selfhood and self-reflection in any caring relationship with the other.
The self is constructed as always oriented to another in the form of a social and
communal identity and only through self-cultivation—a process that requires
thinking and reflection—can one become truly capable to care for the other.
I have briefly surveyed different representations of care in the form of a social
need, private and individual responsibility, the “totality of people-centered work,”
and the objective and the subjective expressions of burden. Through the story of
a senior Chinese immigrant father who devoted his life to caring for his family
but was struck by a strong feeling of ambivalence that remains enigmatic to him,
I try to formulate a subject who was oriented to the notion of care that was driven
by a desire to build a strong and vital family. The notion of ambivalence points
to the impasse between the notion of care as an activity and its consequen-
tial burden. Such an impasse then invites us to formulate a notion of care that
treats burden as essential rather than consequential. Simmel’s concept of life as
both boundedness and transcendence, Heidegger’s ontological form of care as
concern, and the Neo-Confucianist concept of self-cultivation offer us a path on
rethinking the concept of care as an orientation to values and selfhood that
requires thinking and reflection by the subject in order to give the notion of care
itself a stronger form and theoretical grounding.
Notes
1 Translation by Legge, J. 1861. The Chinese Classics: with a Translation, Critical and
Exegetical Notes, Prolegomena, and Copious Indexes. Hong Kong: Legge.
2 The study was conducted in 2015, funded by the Community Investment Funding
Program of the City of Toronto, and coordinated by the Chinese Canadian National
Council Toronto Chapter. I served as the principal investigator for the study with
Shunxian Ou and Weijia Tan as co-investigators.
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Afterword
Care, giving: an ethical critique
Stuart J. Murray
Precisely because a living being may die, it is necessary to care for that being so
that it may live. Only under conditions in which the loss would matter does the
value of the life appear.
(Butler 2009, 14)
It is essential for moral philosophy—philosophy that embraces social, ethical, legal,

economic and public policy aspects—to consider what is new and exceptional
. . . But a wise philosophy also looks at what has just become ordinary and taken
for granted. The taken for granted may have a greater effect on our sense of who
we are, of what it is to be a human being, than amazing achievements on the margins
of our existence.
(Hacking 2006, 13)
Caregiving is a difficult concept to capture, if, indeed, it will yield to conceptual-

ization. What might it mean to give care? Is it akin to a gift that is mine to give?
Is it given freely, without expectation or need of reciprocation? Beneficence directed
toward the tendance of mortal creatures? Or is caregiving a vital economy, an
exchange? Perhaps it is some persuasion of love? Or is it ultimately a form of
benevolent narcissism, projecting myself into the place of the other, and doing
unto him or her what I would have done unto me, if, by some twist of fate, the
tables were turned? Have I given care when I have followed the “duty to care,”
my legal obligation to act reasonably and to prevent foreseeable harm? Few among
us would contest that caregiving involves more than the mere administration
of medicines, more than mere obedience to law, more than reasonableness or
contractarianism. In the terminally ill patient, for example, giving care may mean
withholding medicines, or administering others, to alleviate suffering, to hasten
death—a mortal economy. In this case we might say that what matters is how care
is given, though most I suspect would be dissatisfied to boil this down to the
intentions of the caregiver, however “reasonable” they may appear. In giving care,
something other than reason strikes us as crucial, and yet we have not quite entered
the territory of unreason. And so we struggle in this moment, our language fails
us. If giving care is more than simply caring, how is this giving given? How is it
“done”? We falter on our metaphors, remain uncertain when we seek to say what
we do when we give care, what is given, what received.
226 Stuart J. Murray
Speaking concretely, I might tell you of my many cares or concerns; that I care
about this or that; that I care to do or to be something; or even that I do not care
for oysters or turnips. But when I care for other beings, they have solicited
my care, my solicitude, and it is in this context that we might begin to speak of
care-giving. It is an intersubjective dynamic, though not necessarily a reciprocal
one. I can be cared for by others often without knowing it, just as my care for
them might be unknown to them or impossible to acknowledge or return (for
example, as it can be when caring for someone with advanced dementia). In
distinguishing the small preposition for from the preposition to, we must emphasize
that my being responsible to someone is not the same as my being responsible
for that person. The former implies obedience, whereas the latter opens onto a
much wider socio-ethical relation: I am responsible for those contexts and
conditions within which that person lives and flourishes—or fails to—even if those
contexts and conditions are implicit or unforeseeable. We might then imagine this
responsibility in terms of care: we are called to care for the cultural, religious,
historical, biomedical, palliative, punitive, correctional, legal, educational, eco-
nomic, and civic conditions of human being, that is, to care for the very conditions
of care-giving, however concrete or capacious they may be. Certainly the list is
not exhaustive. Nor does it represent simply the institutional provisioning of care,
for we are implicated in the governance of those socio-political and cultural
structures that sustain and govern us—structures that lend meaning to living and
dying in the particular ways that we do. Hence the ethical demand to interrogate
our diverse social contexts, for they frame the terms, the modalities, and the means
in and through which care is given and received. As Judith Butler (2009, 23) has
formulated it:
Our obligations are precisely to the conditions that make life possible, not
to “life itself,” or rather, our obligations emerge from the insight that there
can be no sustained life without those sustaining conditions, and that those
conditions are both our political responsibility and the matter of our most vexed
ethical decisions.
In what follows, and as a conclusion to this volume, I examine the fraught

relationship between care and giving. Specifically, reflecting on the threads of this
collection’s various narratives, we are called to challenge the communicative
transparency of this relationship as straightforward “caregiving,” and ask what
we mean and what we do when we “give” care. As the volume’s chapters demon-
strate, caregiving cannot be conceived along the lines of communicative action
(see Habermas 1984), for the social expressions of desire and action—care and
giving—are far from transparent or self-evident, rational or objective; moreover,
caregiving is an interaction between individuals who are often differentially
positioned, with unequal or sometimes inexpressible needs. Those in need of
care may be at-risk, vulnerable, dependent, ill, or unconscious. Caregiving is from
beginning to end embodied, wrought by bodies themselves forged in relations of
power and knowledge, history and culture and technology. A relation of power
Care, giving: an ethical critique 227
is, in some sense, the condition of caregiving, when someone appears before me
as powerless in relation to me. The chapters in Part I argue that there is an abiding
ethical tension between (end-of-) life care and institutionalized forms of care-
giving. Institutional and “ethical” demands for Informed Consent and autonomy,
particularly in relation to chronic illness or imminent death, are often experienced
as acutely violent, reifying an individual who has no choice but to choose, whose
“consent” is context-dependent, and who may not be “informed” or willing or able
to make sense of statistical risks and information in relation to the promise of life.
This power relation calls for a re-examination of the subject of care with respect
to institutionalized norms, policies, and laws. Norms, policies, and laws are
addressed in the context of social justice in Part II. Here the chapters suggest that
if justice is to be “done,” with care, we must attend to the symbolic order, to the
socio-cultural iterations of what counts as a good life or death, often tacitly, and
how these manifest in taken-for-granted forms of care and social justice. This
exhorts us to further study what we take for granted in the social provision of just
care, and whether our presumptions and conducts are truly caring and just. Part
III addresses some of the realities of giving care in complex cross-cultural contexts,
exploring the concrete practices of caregiving, and imagining interventions into
these forms.
This afterword, then, turns to discourse itself—including its own, and takes up
the discursive desires of the volume as a whole—to close by reflecting on the
discursive contexts of care in their social and institutional settings. In taking up
a Foucauldian understanding of discourse and power, I invoke the ethical critique
of this volume to reveal care as a communicative practice that opens us onto a
notion of care that exceeds our increasingly technological systems of health and
their dutiful “provision” of care as a “service” (see Bubeck 1995, 133). Indeed,
to critique the “provision” of care as a “service” is in some sense to critique the
transparency of discourse itself. I suggest that ethical responsibility is not just a
responsibility to others, but responsibility for them—that is, a responsibility for
the very social and institutional conditions and contexts within which care itself
can be conceived, ethically enacted, communicated, and taken up. As the various
chapters together demonstrate, this suggests an ethical critique of communication
and arts—for it is partly in these aesthetic and existential forms that care is given,
and through these forms that we forge a critical capacity for an ethics of care.
An ethics of care
This volume owes much, implicitly, to a feminist ethics of care that has emerged
in recent decades. Many scholars cite Sara Ruddick’s essay, “Maternal Thinking”
(1982; see also 1995), or Carol Gilligan’s In a Different Voice (1982) as originary
texts. In relation to moral capacities, Gilligan’s empirical psychological research
demonstrated that men tend to respond to a more abstract ethic of individual rights
and obligations underwritten by duty and justice, whereas women tend to privilege
an ethic of care revolving around empathy, relationship, and responsibility—and
thus women speak “in a different voice.” An early feminist ethics of care variously
built on Ruddick’s and Gilligan’s early work (Held 1993, 1995; Larrabee 1993;
Noddings 1984; Tong 1993), mounting a gender-based critique of ethical care
(Bubeck 1995; Held 2005; Sevenhuijsen 2003; Tronto 1987, 1993), and more
explicitly engaging debates across public policy, social justice, and democratic
citizenship (Bacchi and Beasley 2005; Hankivsky 2004; Noddings 2002;
Sevenhuijsen 1997; Tronto 2001, 2013). Virginia Held (2005, 9) has argued
that, “The ethics of care is a distinct moral theory, not merely a concern that can
be added on to or included within the most influential moral theories such as
Kantian morality, utilitarianism, or virtue ethics.” Like many other proponents,
she theorizes care as a normative value and practice—rather than an abstract,
rationalistic template—which extends far beyond the private sphere to encom-
pass not only medicine, but law, politics, international relations, and so forth.
Held, among others, advocates for a relational view of care built on trust,
interdependence, and a mutual responsiveness to human needs.
True to a feminist ethics of care, the contributions to this volume diversely share
its critique of liberal individualism and paternalism, but diverge from feminist
political and philosophical discourse to offer a more intersectional perspective on
the “management” of care in context. This is not to deny that much of the “work”
of care continues to be gendered in troubling ways: rather, the contributions
gathered here draw widely on cultural studies and a sociology of health and the
body to incorporate recent scholarship on socio-legal interventions, autonomy and
informed consent, end-of-life, Aboriginal health in the post-colony, chronic illness,
and the delivery of (psycho)therapeutic care—particularly for marginalized
populations. That is, rather than honing a distinct theory of an ethics of care, each
of the contributors to this volume has sought to complicate the relational places
of caregiving and the ways that they presume, when they do not reify, a certain
kind of subject of care. Caregiving is, then, less about the operationalization of a
distinct moral theory; it is played out, rather, among the effects of our theories
and theoretical commitments—and often challenges them on ethical and inter-
relational grounds. More research on the ethics of care is needed, given that
mainstream bioethics discourse tends either to presume or shy away from care
and caregiving, often presupposing them as natural consequences of our moral
theories and commitments. Care, giving: both are metaphors, and yet they
constellate around contextualized conducts, often concern a matter of life and death,
or, no less importantly, the kind of life or death that one will face. The concepts
are not static: together, caregiving implies a shared space and time, experienced
and lived ek-statically as a certain spatiotemporal “thickness,” as phenomenologists
might say. In other words, the act of caregiving takes place—often in places that
are ordinary and taken-for-granted: homes, streets, communities, clinics, hospitals,
hospices, schools, prisons.
These socio-institutional settings are not neutral, for better or worse. Indeed,
sometimes institutions strive to mitigate human partiality, and work toward the
impartial delivery of care, whereas other times impartiality can be experienced
and communicated as indifference. For all their ordinariness, these institutions
can be structurally alienating in the diverse ways that they frame the terms of care
—as cultural, religious, historical, biomedical, palliative, punitive, correctional,
legal, educational, economic, civic—and inform what it might mean to give care,
ethically, across these diverse frames of reference. In a rhetorical sense they are
“common places” that tacitly structure meaningful discourse (see Aristotle 1975,
1358a) and experience. We might say that they furnish us with a grammar of social
worlds: the terms, the modes, and modalities in and by which care can be given
and received. Said another way, we might imagine these places as “technologies”
in their own right—places of technique that orchestrate and oversee a technē tou
biou and technē tou thanatou, an art or skill of living and dying. Not quite the
territory of unreason, there is something here that nevertheless refuses to yield to
the reasonableness of utility, logic, economics. As the contributions to this volume
variously attest, there is some sense in which these technai are not mere instru-
mentalizations of knowledge or routinized “best practices,” but open us instead
onto an art—and an ethics—of care. And such an approach opens possibilities
for, in Held’s (2005, 166) words, “not only transformations of given domains—
the legal, the economic, the political, the cultural, and so on—within a society
but also a transformation of the relations between such domains.”
In the epigraph above, Ian Hacking suggests that moral philosophy ought not
simply to concern itself with marginal new technologies, however amazing or
captivating they may be, but to take seriously those technologies that have become
just ordinary and taken-for-granted. While new biotechnologies, such as genomic
medicine, give rise to important philosophical debates (as they should), Hacking
is speaking here about surgeries and other quotidian forms of body-engineering
that have become increasingly routine and normalized: “hip replacement, skin
grafts, corneal implants, stents, organ transplants, as well as regulators such as
pacemakers” (2006, 13). Hacking proposes that, thanks to such routine medical
interventions, we have once again become Cartesian—not so much because we
believe in an immaterial soul, but because “we now treat the body as an assemblage
of replaceable parts, a veritable machine, exactly what Descartes said it was”
(2006, 13). Organ transplantation and brain death, he argues, are emblematic of
the biomedical and biocultural shift toward a mechanistic understanding of life
and death, in which we see our own bodies and the bodies of others and not least,
cadavers—as little more than assemblages of spare parts to be replaced, enhanced,
or harvested.
This is a Foucauldian insight, suggesting a new Cartesianism, and a vantage
from which we might finally declare, “the soul is the prison of the body” (Foucault
1977, 30). We have, in other words, been “disciplined” by medicine and
biotechnology: we are no longer ghosts in a machine, as Descartes once imagined
us, but machines that function within—and by virtue of—the ghostly apparatus
of medical science and law, from biotechnologies and persistent and seductive
discourses on “life,” to vast socio-legal and medical infrastructures that subtly
advance their own moral orthopedics and inculcate their own conceptual limits
to life and personhood. They have changed our sense of who and what we are—
what it is to be a human being, and how to be the being that bears this name.
Along with a new Cartesianism, then, a new soul:
This real, non-corporal soul is not a substance; it is the element in which are
articulated the effects of a certain type of power and the reference of a certain
type of knowledge, the machinery by which the power relations give rise to
a possible corpus of knowledge, and knowledge extends and reinforces the
effects of this power.
(Foucault 1977, 29)
A new soul
Under the aegis of a new Cartesianism, an ethics and art of care must attend to the
socio-institutional infrastructures—the conditions, the machinery—in and through
which the ordinary, and the amazing alike, occur. These institutions are perhaps
the most ordinary and taken-for-granted “technologies” of all. Social and institu-
tional forms act as agents (sometimes called “agencies”) that enable or thwart the
moral agency of those who give care as much as the moral agency of those who
are said to receive it. That is, as an under-theorized moral framework they operate
as a meta-ethic (to be clearly distinguished from a meta-ethics), tacitly informing
us not only what it is right to do but also what it is good to be. Professional bioethics
offers little guidance in this domain. Indeed, bioethics itself has been institutional-
ized, and in the process has arguably lost much of its critical impetus as it has been
subject to the hegemony of biotechnology, pharmacology, and the taken-for-granted
legitimacy of biomedicine (see Murray and Holmes 2009, 1–11; Stevens 2014, 3–6).
This calls for a critique of traditional or mainstream bioethics, which tends to
presume the old Cartesianism, locating moral agency and autonomy within an
immaterial soul, a mind, or some other interiority, the seat of rational personhood.
In this view, the autonomous agent is imagined to have sovereign propriety over
his or her body, a ghost in a proprietary machine—and sometimes a broken machine
at that. Critical of the “disciplinary” power of conventional bioethics, Margrit
Shildrick (2005, 3) has argued: “the discipline has effectively duplicated the master
discourse and maintained the split between a secure sense of the transcendent self
as moral agent, and a more or less unruly body that must be subjected to its dictates.”
And yet we might say that “care” promises to cut through these bioethical conceits,
this binary logic, in the very manner in which it is given.
If we have ushered in a new Cartesianism, as Hacking suggests, by virtue
of the ways in which we have come to understand our bodies, we must look
beyond the “new body”—a provisional assemblage of spare parts, a machine—
to understand an ethics of caregiving. That is, if caregiving is embodied, it is not
quite this body that is the subject of care. There is something more, something
soulful, we might say. But the “new soul” is an equally peculiar creation: it is at
once the articulation, the effect, of institutional power-knowledge, regulated in
part by social and institutional structures or “technologies,” and, somewhat
paradoxically, the manifestation of a hyper-individualism driven by self-interest
and personal responsibility. It “massifies” populations biopolitically as much as
it “individualizes” the subject in a disciplinary way (see Foucault 2003, 242–3).
To parse this paradox, I would like to turn briefly to Foucault’s understanding of
modern Western power, which he describes in this respect as both totalizing and
individualizing—a “sophisticated structure,” he writes, “in which individuals can
be integrated, under one condition: that this individuality would be shaped in a
new form, and submitted to a set of very specific patterns” (2000, 334). Foucault
proposes the term “conduct” as a way to better understand the paradox of the new
soul and the manner in which it is managed or governed: “the equivocal nature
of the term ‘conduct’ is one of the best aids for coming to terms with the specificity
of power relations” (2000, 341). In an earlier lecture at the Collège de France,
Foucault elaborated as follows:
Conduct is the activity of conducting (conduire), of conduction (la

conduction) if you will, but it is equally the manner in which one conducts
oneself (se conduit), the manner in which one lets oneself be conducted (se
laisse conduire), the manner in which one is conducted (est conduit), and
finally, in which one finds oneself behaving (se comporter) under the effect
of a conduct (une conduite) that would be the action of conduct (conduite)
or of conduction (conduction).1
(2007, 193; translation modified)
This is a complex sentence to parse. “Conduct” and “conduction” are terms

that purposefully trouble the rational agency of the one whose conducts or
comportments are at issue. The grammatical subject is maddeningly displaced,
and along with it (him or her), the conceits of (his or her) autonomous agency. In
a straightforward sense, conduire is a transitive verb, meaning simply “to drive,”
“to lead,” or “to conduct,” and in this sense it takes a grammatical object—a car
or an orchestra, for instance. But significantly, it is also an intransitive and
reflexive verb, se conduire, the agency of which is not—or only obliquely and
conventionally—located in the subject or speaker who is also the object of that
action or utterance. “On se trouve se comporter,” one finds oneself behaving,
reflexively, under or as the effect of conducts and conduction—“finding oneself ”
providing an additional distanciation and a spatial metaphor that is omitted in the
published English translation. The electricity metaphor operates here in French,
as in English: it is a matter of conduction, the subject is a conduit, we say in English
(in a certain Marxian vocabulary), part of a wider circuitry that is not of the subject’s
design. As a conduct of souls, then, we might speak of an aesthetics of existence,
the way we find ourselves unreflexively going about our business, rather than
conforming to a set of delineated rules or procedures: conduction is normative,
but its terms are not necessarily explicit—they are lived out “within a more or
less open field of possibilities” (Foucault 2000, 341). “More or less,” of course,
meaning that the game is somewhat rigged in its “flexibility”; it is “managed,” as
we shall see below.
It is worth noting that Foucault’s first mention of “conduct” refers explicitly to
the “conduct of souls,” the “least bad” translation he could devise for the ancient
Greek notion of oikonomia psychōn, where oikonomia or “economy” derives from
oikos or “habitat,” and refers to the household. In Aristotle, oikonomia is typically
rendered as “household management,” and expressly refers to managing the
relations between the members of a Greek household: master and slave, husband
and wife, father and children (see Aristotle 1957, 1253b). These are political
relations in the microcosm of the family, relations concerning the rightful conduct
of each toward the others, the economy of souls. In the Christian context, this
concept will morph beyond the prosperity or wealth of the well-managed
household toward the salvation of souls. But it is in this private sphere, the oikos,
that we find a prototypical or early “institutional” form of care, which is why many
feminist scholars of the ethics of care have sought to theorize familial relations
(typically from a maternal perspective). Foucault struggles in his translation of
oikonomia psychōn: he is dissatisfied with the “management,” “government,” or
“regimen” of souls. He prefers the ambivalence of “conduct.” And in so doing
he problematizes for us what we might call a psychic economy (from psychē,
“soul”) in relation with the political economies of care we find at work across our
cultural, religious, historical, biomedical, palliative, punitive, correctional, legal,
educational, economic, and civic institutional frames of reference.
In a by now famous passage, Foucault (2000, 341) defines modern Western
power as follows: “The exercise of power is a ‘conduct of conducts’ and manage-
ment of possibilities.” In other words, the exercise of such power is indirect,
mediate, and not a matter of individuals’ consent. “Instead, it acts upon their actions:
an action upon an action, on possible or actual future or present actions” (Foucault
2000, 340). We can begin to glimpse here, then, the manner in which social and
institutional contexts of care, as I have been discussing, are a matter of framing
something we might call the soul—something that appears to arise spontaneously,
interiorly, as immanently individual, but which is, rightly said, the effect of a
particular economy or oikonomia, the effect of a particular form of pastoral
power, a “conduct of conducts,” managed by means of often diffuse customs or
nomoi. Today, neoliberal forms of governance act in this way, to seize upon and
conduct the conducts of individuals and to territorialize and incentivize a field of
possible actions and goods. This spirit is captured best, perhaps, by former British
Prime Minister Margaret Thatcher, when she said, succinctly: “Economics are the
method. The object is to change the soul” (1988; quoted in Dardot and Laval 2013,
263). We might say then that particular social and institutional “agencies” conduct
or orchestrate a set of possible relations under the aegis of “freedom.” Individual
subjects are governed by and through the idea of freedom, as Foucault has argued,
but also, I would add, through freedom’s correlative affect of care, and the
management of caregiving. I am suggesting here that the affect of care is
epiphenomenal, a sentimentality produced and sustained and even demanded by
a reigning discourse—it is, in other words, a soulful effect that is taken as cause
or origin of subjective care-giving. Care is given “freely,” as if from some interior
and private part of the self, and yet it is given within a field of possible actions
that are in some respects tacitly prescribed and regulated in advance. It is no
surprise, then, that the “soul” has gained tremendous currency in our neoliberal
present, by proponents of neoliberalism, such as Thatcher, as well as by its would-
be critics (e.g., see Rose 1989).
Neoliberalized social and institutional forms
I shall presume that readers are familiar with the basic tenets of neoliberalism that
have become hegemonic in Western states since the early 1980s. Henry A. Giroux
summarizes: “Neoliberalism is a philosophy which construes profit making as the
essence of democracy and consuming as the only operable form of citizenship”
(Giroux and Letizia 2012). In recent years we have borne witness to the erosion
of the social welfare state, the rise of transnational corporate oligarchies, the
deregulation of markets, the casualization of labor, rampant militarization, the com-
modification of “career-focused” education and the instrumentalization of human
knowledge, along with the progressive privatization of healthcare in Canada and
the United Kingdom, for example. Naomi Klein (2008) has dubbed this “disaster
capitalism,” where market-based logics are mobilized to exploit catastrophes, either
natural or man-made, from Hurricane Katrina to the global economic collapse of
2008–9. Neoliberalism valorizes competitiveness and entrepreneurialism, where,
through a particular onto-logic, individuals are meant to conceive of themselves
as “human capital,” competitive entrepreneurs in a free market—and to embrace
the free market as the guarantor of their individual freedom. And there is, as well,
the “communitarian” iteration of neoliberalism, where “community” is invoked
and mobilized in the service of human capital. As Foucault (2008, 230) describes
it, “all the problems of health care and public hygiene must, or at any rate, can
be rethought as elements which may or may not improve human capital.” In the
social sphere, neoliberalism
involves extending the economic model of supply and demand and

investment–costs–profit so as to make it a model of social relations and of
existence itself, a form of relationship of the individual to himself, time, those
around him, the group, and the family.
(Foucault 2008, 242)
The neoliberal state is both totalizing and individualizing in a particular manner.

In Giroux’s words again:
Neoliberalism’s rigid emphasis on unfettered individualism, competitiveness

and flexibility displaces compassion, sharing and a concern for the welfare
of others. In doing so, it dissolves crucial social bonds and undermines the
profound nature of social responsibility and its ensuing concern for others.
(Giroux and Letizia 2012)
Neoliberalism represents a new form of governmentality. The socio-institutional

frames of reference I mentioned above—cultural, religious, historical, biomedical,
palliative, punitive, correctional, legal, educational, economic, and civic—
functioned somewhat independently or even at odds during the nineteenth and most
of the twentieth century. As Pierre Dardot and Christian Laval (2013, 259) discuss
in their recent book on neoliberalism, “The utility principle, whose homogenizing
vocation was explicit, did not succeed in subsuming all discourses and institutions,
just as the general equivalent of money did not succeed in subordinating all
social activities.” Today, however, “the neo-liberal moment is characterized by
a homogenization of the discourse of man around the figure of the enterprise”
(Dardot and Laval 2013, 259). We are no longer dealing with more or less discrete
“disciplines” that work variously to shape “docile bodies” in their particular
social spheres. The institutional methodology now reflects a more coordinated set
of techniques structured ideologically around enterprise and entrepreneurship. It
is not that these institutions have been centralized under one authority or sovereign
power (in this case we might more effectively revolt). The mantra of neoliberalism
is less government, not more. Their fusion is not just ideological but “conductive”
praxis. From education to healthcare, the goal is total self-involvement and self-
actualization. The psychic economy of the neoliberal subject must be self-
interested, innovative, flexible, marketable, and normatively invested in his or her
health and “wellness” as an on-going project.
We might say that caregiving is subsumed by this economy; care becomes a
mode of affective compliance, submission to the narrow goals of neoliberalism,
on its terms; care providers are encouraged to think of themselves as entrepreneurs
offering or selling a service. They must take pride in their efficiency and
“outcomes,” emerge as “leaders” and “champions,” according to the neoliberal
Newspeak. For those of us who rely on healthcare, we are persuaded, educated,
seduced to embrace self-care or self-management, as it is sometimes called. The
lie is that this is “empowering” and respects the autonomy of the individual. In
practice, it might mean that you are sent home after your surgery with Xeroxed
directives on the in-home removal of your catheter. Health Canada (2004), a federal
government agency, began a widespread self-care campaign in the 1980s:
Self-care [is] broadly defined as the decisions and actions individuals take
in the interest of their own health . . . Self-care can also be considered as an
important determinant of health, concerned with the development and use of
personal health practices and coping skills.
Or we might look to the World Health Organization (WHO) (2014) for similarly
neoliberal language in its individualizing definition of mental health:
Mental health is defined as a state of well-being in which every individual

realizes his or her own potential, can cope with the normal stresses of life,
can work productively and fruitfully, and is able to make a contribution to
her or his community.
What these descriptions share is the overarching responsibilization of the subject

within a totalizing regime: the responsible subject is the consumer who is equipped
to harness and deploy the expertise of the positive sciences (medicine, psychiatry,
but also economics, statistics, etc.) in the self-management of his or her risk, health,
and well-being (see Miller and Rose 2008, 199–218).
“Life coaching” is one recent incarnation of the self-care movement, infecting
the private and the public sectors alike. For over a decade, the University of British
Columbia (UBC) has offered free life coaching to its staff and faculty through its
Human Resources department (www.hr.ubc.ca/coaching/). It is claimed that this
is the first program of its kind for a university. The educational Ideological State
Apparatus (ISA), as Althusser called the education sector, is no longer a privileged
site of resistance and class struggle: we teach compliance and conformity to teachers
who teach, and model, the conduction of compliance and conformity. UBC’s
coaching website touts an “Individual Experience” for participants, and the
program selects coaching “interns” from those who are mentored to become life
coaches who return to campus to coach other staff and faculty members—an
“individual” experience in the service of “communitarian” ideals. And there are
incentives for becoming a coaching “intern”: faculty, for example, will receive
release from teaching duties in exchange for coaching others. The upshot of the
program is emblematized in one of the coaching blogs on its website: “It’s about
helping people understand they have the answers within and discovering a small
change that can act as the lever for even greater change.” The message is that there
is nothing wrong with the institution’s culture or with its conditions of labor: the
problem is within you, and it is your responsibility to fix it, yourself, and to manage
your relations with your “clients” or collaborators, superiors or subordinates. You
are enjoined to be flexible, to craft a “resilient self” (Henderson and Denny 2015).
This culture of self-care and “wellness” transfers the burden of social, political,
and ethical structures onto the individual. Critique becomes risible: we as a
community are discouraged from addressing our social and collective conditions
of work or life. Indeed, work and life become indistinguishable, increasingly
integrated. In the words of Dardot and Laval (2013, 263), the neoliberal subject
must constantly strive to be as efficient as possible, to appear to be totally

involved in his work, to perfect himself by lifelong learning, and to accept
the greater flexibility required [e.g., austerity measures] by the incessant
changes dictated by markets.
The glossy flyers in faculty mailboxes celebrating work–life balance are little more
than a public relations exercise coordinated by some new Orwellian-sounding
management department.
To be clear, I am unwilling to conceptualize care under a general theory of
economic management and service provision. I think it is safe to say that this
volume’s contributors share such a view: each chapter represents a focused study
that intervenes to problematize a particular context of care, and seeks to do so in
a language that is critical of the “common places” that inform contemporary
discourse. Indeed, it is unclear to me how a general theory—no matter its
provenance—might rescue a socially just understanding of caregiving from the
tentacles of our neoliberal social and institutional structures and “technologies.”
Such a theory may well, in the end, prove overly prescriptive, positing care in
terms of some abstract “content,” and an ethics of care as a set of moral guidelines
or derivative “codes.” These are of course sometimes useful, even necessary, to
ensure that someone’s needs are met, and yet a single-minded implementation of
evidence-based “best practices,” for example, can undermine the quality of care
one receives (see Holmes et al. 2008; Murray et al. 2007). Under a general theory
of best practices, the subject of care—the one who gives as much as the one who
receives—seems lost to the economies of exchange and managerialism. In other
words, we are apt to miss a critical component of caregiving. This something
“extra” is no thing, and it has gone by many names in as many ontologies, from
Christian “soul” and Kantian “respect” to liberal, humanist, and rights-based
personhood discourses that have variously propped up the value of identity,
personal autonomy, and agency. These remain spectral and symbolic, however,
insofar as they resist a clear conceptualization or concrete context: they are, rather,
social and institutionally sanctioned forms. And perhaps there is good cause to
be wary of such grands récits (Lyotard 1984)—“master narratives” in the service
of a bourgeois symbolic order, policing the permissible forms of social and ethical
life.2 Instead, we might approach the critical, even precarious, dimension of
intersubjective caregiving somewhat more obliquely.
In Precarious Life (2004), Judith Butler asks what makes a life grievable, what
it might mean for its loss to matter—for this is the condition of care. One must
wonder whether such a question could be asked within a neoliberal frame, and if
so, what sorts of answers, conducts, or cares neoliberalism could foster. “Freud
reminded us,” Butler writes,
that when we lose someone, we do not always know what it is in that person
that has been lost. Sometimes when one loses, one is also faced with some-
thing enigmatic: something is hiding in the loss, something is lost within the
recesses of loss.
(2004, 21–2; see also 2009, 1–32)
In the end, this “something” is perhaps no knowable thing, and is not quite
something the subject “has”: rather, Butler argues that grief is not a privatizing
experience, but instead brings “to the fore the relational ties that have implica-
tions for theorizing fundamental dependency and ethical responsibility” (2004, 22).
The “content” or particular dimension that makes a life grievable is not effectively
knowable by the subject because that subject is constituted relationally, and this
is not something that you or I singularly “have” or possess—“it precedes the
formation of ‘I’” (Butler 2004, 31)—but rather, something that we share.
Each of us is constituted politically in part by virtue of the social vulnera-

bilities of our bodies—as a site of desire and physical vulnerability, as a site
of a publicity at once assertive and exposed. Loss and vulnerability seem to
follow from our being socially constituted bodies, attached to others, at risk
of losing those attachments, exposed to others, at risk of violence by virtue
of that exposure.
(Butler 2004, 20)
For our purposes we might find in this place, at this moment, a condition of
caregiving constituted not by what you or I possess, but in the manner in which
we are dispossessed, each by virtue of the other, exposed and vulnerable. But this
is, most emphatically, not to cede all claims to my body or to abandon outright
the language of autonomy, rights, and self-determination; however, nor is it to
cede to the hegemony of resilience and self-care discourses that frame personal
autonomy, rights, and self-determination in the particular ways that they do.
It is, rather, to complicate the contexts in which these words are uttered and to
examine the conditions of their utterance, their reception. One suggestion might
be that caregiving takes place at the limits of my secure self-possession, and when
we turn to the constitutive discourse on care, in a moment of ethical reflexivity,
we might allow ourselves to become unmoored from the socio-institutional
conduction of our conducts, from our roles, and to open ourselves to the other
in need, to hear his or her solicitation, and to respond in a manner that is
unburdened—in relative terms, of course—from our usual codes of conduct. I take
this as Butler’s point, that dispossession at the limits of discourse establishes human
intelligibility (2004, 35), rather than the other way around, or rather than firmly
situating our sense of who we are, of what it is to be a human being, in that
discourse. The discursive relation is merely normative and regulatory: it is
seductive rather than causal or altogether totalizing. In very concrete terms, then,
we might imagine caregiving at the horizon of what is speakable, spoken by me
as a powerless petition for care but in words I do not fully possess or control. In
Foucault’s (2000, 336) terms, we might propose:
Maybe the target nowadays is not to discover what we are but to refuse what
we are. We have to imagine and to build up what we could be to get rid of
this kind of political “double bind,” which is the simultaneous individualization
and totalization of modern power structures.
The “double bind” is of course ethical, as well as political. In his late work on
ethics, Foucault conceives of this as the work of the ethical subject in relation to
his or her subjectivation—an exercise or askesis in which the self struggles to get
free of itself, to stray from itself (Foucault 1986, 8), which is to say, in the activity
of thought and in our practices to seek some critical distance from the social and
institutional identities in and through which our conducts are conducted. As
Foucault (1986, 26) writes, “there are different ways to ‘conduct oneself’ morally,
different ways for the acting individual to operate, not just as an agent, but as an
ethical subject of this action.”
Coda: care-giving in context

The proposal here, if it were “propositional,” is not to eradicate the social and
institutional vectors—we might call them “conduits”—of power, as if we could
break free once and for all to inhabit a utopian sphere of communication and action,
free from constraints and coercion. The specific problem is, as Foucault (1997,
298) formulates it, “to acquire the rules of law, the management techniques, and
also the morality, the ēthos, the practice of the self, that will allow us to play these
games of power with as little domination as possible.” We must say then that
caregiving takes place in and by virtue of its social and institutional common
places—within a set of coercive but sometimes enabling constraints, technologies,
and discourses, or perhaps alongside or even despite them. This is the reality. If
domination, understood in a broad sense, is an unavoidable risk or even intrinsic
to care-giving as a relation of power, to minimize domination might itself
constitute a caring practice or counter-practice. This construction, “to minimize
domination,” sounds much like a “negative” practice of care, and yet it is
nevertheless woven into the more “positive” (but not positivist) practice of the
subject’s ethical work on him- or herself—as the ethical subject of this action.
To be the ethical subject of one’s actions calls for a particular relation to oneself,
which Foucault examined in his late work on the ancient Greek epimeleia heautou,
the “care of the self.” This relation of care, a self–self relation (auto to auto), must
be sharply distinguished from self-care or self-management, as discussed above
(see also Murray 2007). It is an ethical relation that bears upon my ēthos, my
individual “character,” rather than on ethos or “habit.” This is not a relation of
propositional knowledge and bears little resemblance to the tradition of Cartesian
self-doubt. Reading Plato’s Alcibiades I, Foucault points to the Socratic conception
of epimeleia heautou as the care of one’s soul, rather than the care we might take
of our wealth or our reputation, and so forth. Care of the soul is figured in the
Socratic texts as a relation of khrēsis or “use”—what we do with the soul, how
we “use” it. Foucault (2005, 56–7) clarifies:
So you see when Plato (or Socrates) employs this notion of khrēsthai/khrēsis
in order to identify what this heauton [self] is (and what is subject to it) in
the expression “taking care of oneself,” in actual fact he does not want
to designate an instrumental relationship of the soul to the rest of the world
or to the body, but rather the subject’s singular, transcendent position, as it
were, with regard to what surrounds him, to the objects available to him, but
also to other people with whom he has a relationship, to his body itself, and
finally to himself.
The “use” or, we might say, “utility” of the ethical self-relation is most emphat-
ically not instrumentalizing. Khrēsis is not a relation of rational knowledge, nor
is it simply the use of a tool or instrument. Foucault insists on a more polyvalent
reading of khrēsis: an orienting attitude, a conduct, disposition, or comportment
that characterizes my particular ēthos. This is not, then, the free agency of an
autonomous liberal subject. Foucault’s classical examples, drawn from Plato,
take the “use” of the passions and of anger (epithumiais khresthai and orge
khresthai). We do not “use” our passions for something, we do not “use” our
anger—rather, we “give way” to them, somewhere between mastering and sub-
mitting to them, as the occasion and context demand. So, too, with the chresis
aphrodision, the use of one’s pleasures. So, too, when we “use” a horse: good
horsemanship requires a listening, a mutual relation with the horse. You cannot
just do with it as you please. And so, too, again, when we “use” the gods: when
we petition the gods for something, we do so by knowing how to be a proper
supplicant, knowing how to ask, what to ask, and when.
My suggestion, in closing, is that we might adopt an understanding and a practice
of epimeleia in the context of our neoliberal “management” of care—to conceive
caregiving as an activity that resists the contemporary conduct of our conducts.
In this, caregiving might arise as a counter-conduct, a “struggle against the
processes implemented for conducting others” (Foucault 2007, 201). It is to say,
perhaps, simply, that we do not wish to give care—or to be cared for—in this
way and by these means; or, we do not wish for our care to be administered by
this system of truth, under these relations of power. The ambiguous reflexivity of
an intransitive “conduct” may open for us a more livable space in which to question
our ethical self-relation, and our conducts, for those contexts in which care is
petitioned. This is, in part, the artful work of language, intervening—as I believe
this collection does—to problematize and to re-imagine a caregiving ēthos, to speak
and to conduct ourselves otherwise than we sometimes, and perhaps too often,
do. Care, giving: both are metaphors, and yet their relation is at issue in how we
read, or hear, the comma that separates these terms—whether we understand them
together as straightforward “caregiving” or are obliged to trouble their relation,
and to occupy ourselves that moment of hesitation, in-between. This calls for an
art and an ethics of care that works, carefully and artfully, to transform our
“common places” and to invent and to employ another grammar of our social
worlds, new modalities of struggle and resistance. We might, then, for a time, be
compelled to imagine care as a dangerous or disobedient practice that responds
to its contexts, and refuses to lose sight of them, in the face of authority and the
raison d’état.
Acknowledgements/dedication
In his introduction to this volume, my colleague Alan Blum briefly mentioned the
care that attends the practices of writing, reading, and representation. This was
not far from my mind as we curated this book and as I sat down to write an
afterword. Writing is a lonely task, often wrought by care, wherein we imagine
an interlocutor, a dialogue, and write so as to invite responses from readers we
may never see or know. One writes as one gives, sometimes, without expectation,
but certainly not without hope. In a mad moment of writerly solitude, I decided
to post an early draft of this afterword to the scholarly social media site
academia.edu, inviting readers’ comments and criticisms. It was for me a social
experiment, of sorts, and I dutifully “tagged” my draft essay so as to appeal to
the widest possible readership (bioethics; governmentality; critical bioethics; the
ethics of care; health and social care; feminist bioethics). I had few expectations,
and I must confess, I was even somewhat cynical. Academia.edu is undoubtedly
part of the for-profit neoliberalization of scholarly research. Not only does it
publicize our work, it organizes and quantifies it according to various metrics and
measures, encouraging a spirit of competitive entrepreneurialism. And yet,
despite—or indeed, by virtue of—this socio-institutional infrastructure, dozens of
scholars overwhelmed me with their generosity. They read and commented with
care. The vast majority of these people I have never met, and probably never will.
And I began to think that even here, in the vast anonymity of the Internet, despite
the odds, suddenly I was the recipient of care, and my text came to life. This strikes
me as an apt metaphor for the ways that caregiving can and does take place, often
despite—or even by virtue of—the constraints of our neoliberal and biopolitical
institutions. There is hope. And it is to these readers, and others like them, that
my words are dedicated with gratitude.
Notes
1 La conduite, c’est bien l’activité qui consiste à conduire, la conduction si vous
voulez, mais c’est également la manière dont on se conduit, la manière dont on se
laisse conduire, la manière dont on est conduit et dont, finalement, on se trouve
se comporter sous l’effet d’une conduite qui serait acte de conduite ou de
conduction.
(Foucault 2004, 196–7)
2 If, as Lyotard suggests, the postmodern condition was meant to herald the end of grands
récits or meta-narratives, neoliberal ideology has furnished us with our own pernicious
“emancipation narrative,” all the more powerful and seductive because it appears to
arise from individual responsibility, freedom, and desire.
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Module in Biomedical Sciences (3rd ed.). Elsevier. Accessed August 20, 2015.
doi:10.1016/B978–0-12–801238–3.00175–6.
Tong, Rosemarie. 1993. Feminine and Feminist Ethics. Belmont, CA: Wadsworth
Publishing.
Tronto, Joan C. 1987. “Beyond Gender Difference to a Theory of Care.” Signs 12(4): 644–63.
——. 1993. Moral Boundaries: A Political Argument for an Ethic of Care. New York:
Routledge.
——. 2001. “Who Cares? Public and Private Caring and the Rethinking of Citizenship.”
In Women and Welfare, edited by Nancy J. Hirschmann and Ulrike Liebert, 65–83. New
Brunswick, NJ: Rutgers University Press.
——. 2013. Caring Democracy: Markets, Equality, and Justice. New York: New York
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World Health Organization. 2014. “Mental Health: A State of Well-being.” (2014).
Accessed August 20, 2015. www.who.int/features/factfiles/mental_health/en/
Index
abortion 33, 55 Bleurer, Eugen 183–4

About Schmidt 142 Blum, Alan 79, 215
A.C. v. Manitoba (Director of Child and body: and biotechnology 228–30; and
Family Services) 106–7 colonization of 100, 102, 104, 106; and
Aboriginal see First Nations deterioration of 143–4; docile 234;
agency: and aging 136; and informed individual sovereignty over 11, 28, 30,
consent 14–15, 28; in a liberal 92, 96–7, 230, 237–8; and human
democratic state 74–6; and dignity 49, 53–4, 76–7, 79; as machine
neoliberalism 97, 119–21, 127, 230; of 140; as metonym for irrationality of the
the patient 37, 81–3, 155–6, 162–5, city 22; see also cancer (and the body);
167; and rationalization and Cartesian mind–body dualism
individualization 63, 67 Bonhoeffer, Karl 183
aging: as economic problem 211, 214–16; BRCA mutation 150–1, 168, 169
and modern life 141–2; and mortality breast cancer 150–4, 168, 169, 171
141–2; and obsolescence 140–1; and BUPA 155
physical deterioration 135–7, 143–4; Butler, Judith 6, 9, 153, 162, 225, 226,
and senility 137–8; as social problem 237
211
Althusser, Louis 235 Callahan, Daniel 58
American Medical Association 37 Canadian Cancer Society 93
Antigone 6–7, 14 Canadian Medical Association 37, 76–7
Arendt, Hannah 1, 69–71, 81, 83–4, 86, cancer: and the body 100, 105, 149–50,
214, 216, 222 165–7; and chemotherapy 100; elegiac
Aristotle 231–2 politics of 102–3; imaginary 152–3,
155–6; and neoliberal biomedicine 92,
Baby E.J.G. 43–5, 47, 49, 79 97–8; phenomenological approach to
Balzac, Honoré de 6 141
Basaglia, Franco 180 cancer advertising: as medico-commercial
Bataille, Georges 8, 221–2 discourse 154–6, 164; and preferred
Bell, Daniel 65 middle-class demographic 155–6,
Benjamin, Walter 138–9, 144–6 161–2, 164–5; and tropes 158–62
Bible 43 cancer patient: as fighter 157, 165, 168;
Binswanger, Ludwig 11–12, 181–2, as neoliberal subject 167–8, 170; as
184–9 survivor 156, 162, 168; and will to live
bioethics 230 163
biomedicine 21, 91–2, 98–9, 101–4, Cancer Research UK 154–5, 168; see also
105–6 Tesco
biopolitics 97–101, 102, 104, 231 Canguilhem, Georges 188–9
biotechnology 98–9, 102, 229–30 Canoe Building Project 113–16
244 Index
Capital 126–7 Cooper, David see Laing, Roland
capitalism 11, 17, 19–20, 22, 126–7, 144, Criminal Code of Canada 35, 56
233 Cruzan by Cruzan v. Missouri Department
care: burden of 218–20; bureaucracy of 6, of Health 35–6, 51
14–15; as discourse of justice 4–5; duty Cruzan, Nancy see Cruzan by Cruzan v.
of 4–5, 18, 211–14, 225–7; economics Missouri Department of Health
of 9, 15, 103, 113, 127, 129, 153, 163, cultural capital 149–51, 155, 157, 163,
211, 214–16, 232–3, 235; as ethical 164–5, 167–8, 170
problem 209–10; feminist conception cultural differences see transnationalism
of 214–15, 227–8; elder 210–11, 213;
gift of 9–10, 17, 225; and human rights Dana-Farber/Brigham and Women’s
119–21, 124, 127; infractions of 5–6; Cancer Centre 154–5
privatization of 64, 66; regime of Dasein 2, 179, 180–81, 186, 188–9, 219
13–14, 20, 135; resistance to 11; self- Daston, Lorraine 190
transcendence of 12–13; symbolic order death: and aging 142–3; and avoidance of
of 215–17, 220–1, 227 145; preventable 105–6; and right to die
caregiver: ambivalence and intimacy of 35–8; see also time
the 217–21; and conflict between family death penalty 9–10
and physician 13–14, 51–4, 80–2; in dementia 37, 46, 68, 217, 226
immigrant families 218; and notion of democracy: and colonial heritage 127,
care 5, 22; as private vs. social 129–30; and minority rights 121–3, 125
responsibility 213; and subjectivity of De Montaigne, Michel 11, 16, 195
221–3, 236–8; socio-institutional depression 27, 146, 187, 200–1
emplacement of the 228–30, 238; Derrida, Jacques 8, 9
see also substitute decision maker Descartes, René 229; see also Cartesian
Cartesian mind–body dualism 136, 199, mind–body dualism
215, 221–2, 229 De Shazer, Steve 197
children’s health see Baby E.J.G; mental dialogue: between doctor and patient 32;
health; Sault, Makayla with First Nations 116, 128; with self
Chomsky, Noam 125, 131 222; see also psychiatry
Churchill, Ward 130 disability rights 55
Cioran, Emil 8, 13 disaster capitalism 233
citizenship: and rights of citizens 80–1, discourse see language
85; and rights of patients 84–6; discrimination 95, 162
Aboriginal 95, 106; neoliberal 233 doctor–patient relationship 6, 27, 32,
Cleland, Heather 100 68–9; see also caregiver; power;
clinical practice 33–4, 38, 52, 55, 57–8, psychotherapy; solution-focused brief
68, 153, 158, 165–6; see also hospital; therapy
psychiatry Dumm, Thomas 2, 18
Coetzee, J.M. 11 Dunn, John 129
Cohen, Lawrence 137–8, 143–4 Durkheim, Emile 9, 19, 65, 136, 143
colonialism see democracy; First Nations Dworkin, Ronald 121–2
communicative action 64–5, 68, 226
community: and intersubjectivity 73–4, education: and changing health habits 6;
80–1, 83, 85–6; and family support and call to care 226, 229, 232;
212; and individualization 233–4; and commodification of 233; crisis in 71;
medico-legal establishment 95; and education-free 15, 21; medical 50; and
mourning 102; see also university- medical and pharmaceutical advertising
community collaboration 155; and neoliberalism 235;
conduct, Foucauldian 231–2, 234, 237 opportunities for 113; and parental
Confucius 209, 222–3 responsibility 218, 220; and pedagogy
Consent and Capacity Board 41–6, 46–51, of the oppressed 123, 127
78–9, 80–2, 84–5 Edward, Justice Gethin 105
consumer choice 155, 162–3 Ehrenreich, Barbara 153
Index 245
Elias, Norbert 65–6 Globchuck, Samuel 50
Elle 154 Goffman, Erving 5
empowerment see patient (autonomy); Goldberger, J. 33, 55, 81
power Goldstein, Kurt 188
end-of-life 144–7; see also aging; Grey Zone 5, 83
informed consent grief see mourning
Enlightenment 54, 94, 136, 139 Grosz, Steven 205
epimeleia 238–9 Guichon, Juliet 95, 106
epistemology 181–2
ethical collision 4, 79, 210 Habermas, Jürgen 64–5, 75
ethics: and capacity for consent 92–6; of Hacking, Ian 225, 229
care 100, 205, 210, 230, 239; and Health Canada 234
epistemology 188–9; and scarcity of healthcare: and Chinese welfare system
resources 196, 206 211; inequities in 151, 161, 164;
evidence-based medicine 101, 153, 236 institutionalization of 74–5; as managed
existentialism see psychiatry care 196; professionalization of 66; as
self-management 7, 234; service model
Facebook 152 of 227; serving model of 205
family 212–13; see also caregiver Health Care Consent Act 27, 38–40, 55,
feminism see care (feminist conception of) 56, 93
Festinger, Leon 19 Hegel, G.W.F. 8, 14, 22, 124, 131, 135,
Fink, Bruce 201 146
First Nations: colonial legacy in Canada hegemony 91, 97, 102, 103, 157, 230,
92, 95, 102, 104, 106, 121–3, 125; and 233, 237
Healing of the Seven Generations Heidegger, Martin 2, 8, 21, 186–7, 195,
109–10, 113–14; and indigenous rights 198–9, 219, 223
93–5, 105–06, 128–9; and justice 120, hermeneutics 73–4
122–3, 126–7; and Oka Crisis 131; and History of Madness 180
residential schools 100, 109–10; and Hobbes, Thomas 7, 82
traditional medicine 95–6; and treaty- Hoche, Alfred 182–3
making process 123; and urban Hollis, James 197
migration 112–13 hospital 35–6, 38, 47–8, 50, 57, 66, 91,
Foucault, Michel 97–8, 125, 138–40, 180, 101, 210–12, 228; see also Memorial
190, 227, 229–33, 237–40 Sloan-Kettering
Fleming v. Reid 38 Hurricane Katrina 233
Freire, Paulo 123 Husserl, Edmund 186–7
French Revolution 139–40 Hyde, Lewis 8
Freud, Sigmund 17, 22, 102, 146, 171, hysteria 184
184–6, 199, 202, 236
identity 214, 217, 221–20, 236
Gadamer, Hans-Georg 74, 76, 77, 78, 80, Ignatieff, Michael 119, 123–6
86 illness 1, 36, 40, 44, 50, 67, 74–5, 78,
Galison, Peter see Daston, Lorraine 99–100, 104, 106, 136, 171, 180, 186
Gardasil 155 Illness as Metaphor see Sontag, Susan
Garfinkel, Harold 9 Impasse Analysis 3–4, 13
Gawande, Atul 34 individualization see community; patient
gender 150–51, 161–62, 165 informed consent: and end-of-life care
genetic risk 150, 167, 168, 169 51–54, 66–9, 75–6; and illness 75; and
geriatric see care (elder) law 16, 27–32, 35–41, 67, 75, 83; and
ghost in the machine 229 patient-centred care 31–5; and patient
Gilligan, Carol 227–8 competence 76–82, 227; and reflective
Gilman, Sander 153 judgment 71
Girard, René 10, 21 In re: Quinlan 56
Giroux, Henry A. 13, 233 InStyle 154
246 Index
intercultural see transnational tension between person and the 14, 16;
intersubjectivity see community and violence 10
intimate order 145–6 Law of the People’s Republic of China on
Protection of the Rights and Interests of
Jain, S. Lochlann 92, 101–4, 166 the Elderly 212–13
Jaspers, Karl 185–6 leukemia 91, 104
Jesus 16, 86, 91, 92, 96 Lévinas, Emmanuel 2, 8, 162, 166
Jezebel.com 150 life coaching 235
Jolie, Angelina 149–51, 166–7 life support 38, 56
jouissance 7, 9, 14–15, 22, 220 loneliness 2, 5, 19, 65–6, 69, 218–19,
judgment, determinative and reflective 239
69–71, 83–4 Lyotard, Jean-François 236
Jung, Carl Gustav 181
justice: as discourse of care 4–5; and First McHugh, Peter 2, 4, 8, 9, 11, 87
Nations 120, 122–3, 126–7; restorative McMaster Children’s Hospital 91, 93,
110, 165; social 111, 115, 156, 213, 104–5
227 managed care see healthcare
Mandell, Nancy 217, 218, 221
Katz, Jay 28, 32, 67 martyrdom 5, 11, 96
khrēsis 238 Marx, Karl 126
King Lear 144, 146 mastectomy 149–51, 168
King, Samantha 153, 169 media 91, 92–3, 99–100, 105, 149–53,
Klein, Naomi 233 170; see also cancer advertising
knowledge transfer 1, 111 medical science 46, 49, 53, 83, 106, 143,
Kohut, Heinz 202 163, 179, 188, 229
Kraepelin, Emil 179–80 medico-morality 153, 155–6
Kuhn, Roland 189, 190 melancholia 138, 164
Memorial Sloan-Kettering 153, 156–8
labor 31, 71, 102, 126–7, 136, 210, mental health: and categorizations of
214–16, 218, 233, 235 mental illness 179–80, 186; of children
Lacan, Jacques 8, 16, 198, 200, 220 195–6, 204; and neoliberal definition of
Laing, Roland 180, 190 234; servicing 203–5; system in crisis
language: of cancer 103, 150, 155–6, 195–6
170; of care 209, 225, 235, 237, 239; Merton, Robert 67
and cultural differences 209, 221; Minkowski, Eugène 180, 188, 190
and intersubjective meaning 73; of moral capital see cultural capital
the law re: indigenous medicine 93–4; morality 162–3, 228, 230, 238; see also
and mental health 234; of psychiatry medico-morality
179, 200–4; and senility 144; and the Mort, Frank 153, 155
subject 220; and triggers 18, 20 Mount Sinai Hospital 154–5
law: and biomedicine 97, 100; and mourning 54, 82, 102–3, 146, 165
caregiving 225, 227, 228, 229, 238; “My Medical Choice” 150–1, 167
and citizens’ rights 80, 121–2; efficacy
of science and the 171; and ethical National Health Service 170
regulations 7; and informed consent National Post 106
16, 28, 32, 35–41, 67, 75; and law- neoliberalism: and biomedicine 91–2, 98,
abiding subject 14; and the medical 101–04, 105–06; and care as loan and
profession 27, 33, 49–51, 53, 57, indebtedness 14, 17–18; and
74–5, 77–83, 86; as metonym for community rights 94–6; and individual
irrationality of the city 22; and rights 81–82; and the neoliberal subject
neocolonialism 92, 94–7, 99, 102; 166–7; and social and institutional
and patient autonomy 41, 78–83; forms of 232–7
and rationalization 64; and substitute Nietzsche, Friedrich 19
decision makers 45, 77–83, 86; Novartis 154
Index 247
Oedipus 6–7 race 98, 161–2
oikonomia 231–2 Race for Life see Cancer Research UK
Ontario Court of Appeal 38 Rancière, Jacques 2
Ontario Medical Association 31–2 rationalization 63–5, 75
oophorectomy 151 Reason.com 150
regime 14, 20, 101–3, 120–1, 135, 169,
pain see suffering 171, 234
Paris is Burning 20 Reibl v. Hughes 29–30
Parsons, Talcott 11, 53, 74, 136, 138 religion 20, 50, 91–3, 100, 102, 129, 171
patient: autonomy 31–46, 51–4, 57, responsible subject 156, 163, 213–14, 220,
76–83, 237; dignity 48–51, 75–6, 79; 226, 234
empowerment 1, 14, 31, 33, 65, 75, rights see care; citizenship; democracy
151, 161, 162, 169, 198, 201–2, 234; Rilke, Rainer Maria 5, 91, 97
the exemplary 165–8; individualization Rodriguez v. British Columbia 37
of the 64–9; quality of life for the Ruddick, Sara 227
49–51, 85–7, 211; right to die 35–8, 53; Run for the Cure see Princess Margaret
see also cancer patient; informed Hospital
consent
Patient Self-Determination Act 38 St. Louis Dispatch 36
pedagogy 71, 86, 123 Salgo v. Lelan Stanford Jr. University
Phaedo 77, 86 Board of Trustees 29
phantasmatics 164–5 Sault, Makayla 92–6, 100, 102, 105–6
pharmaceuticals 98, 155–6, 170 Scheler, Max 19
pink ribbon 153, 169 Schloendorff v. The Society of New York
Plato 1, 238 Hospital 28
popular culture see cancer advertising schizophrenia 180, 183–5, 186
postcolonialism see colonialism Seale, Clive 146
power: differential between caregiver and self-care see self-management
patient 68, 82, 226–7; differential self-knowledge 2, 8, 31, 222
between healthy and sick 64–6; and self-management 7, 67, 91, 95, 98, 167,
knowledge 1, 226, 230; of the medical 222, 234–5, 238–9
establishment 51, 230–2, 237–8; of the sexual abuse 18–19
state 94, 96–8, 102, 121–2, 124–8, Shildrick, Margrit 230
230–2, 237–8; see also patient sick role 11, 53, 136; see also Parsons,
(empowerment) Talcott
power of attorney 38, 40, 42; see also Simmel, Georg 5, 8, 9, 10, 12, 14, 18, 54,
substitute decision maker 143, 216, 223
Powis, Kate 146 Singer, Peter 50
Pratt v. Davis 28 Smith, George 50
prenatal screening 32, 55 social media 152, 239
Princess Margaret Hospital 155, 169 social order 142
progress 16, 20, 53–4, 91, 98–101, social science 27, 73–4
105–06, 199 social semiotics 152
psychiatry: clinical 179–83, 186–7; and social work 110, 111, 115, 116
doctor-patient communication 144, 200, socioeconomic status 113, 126–7, 155–6,
205; existential vs. medical 179–81; and 161–2, 164–5, 213, 221
individual subjectivity 181; and pheno- Socrates 77, 86, 238
menology 184–9; and psychoanalysis solution-focused brief therapy: evidence
187; scientific context of 181–4 base for 197; origins of 197–8; and
psychoanalysis see psychiatry transference/counter-transference
psychotherapy 197, 205 198–200, 202–3, 206; and use of
public intellectual 110, 115 language of 200–3
Sontag, Susan 149, 153, 165
Quinlan, Karen 37, 56 sovereignty 96–7, 103, 124–5
248 Index
substitute decision maker 38–41, 41–6, transnationalism 209, 217–18, 221–22
46–51, 78–9, 80–2, 84–7 transvaluation 153, 157, 165
suffering 2, 20, 35, 48–9, 53, 67, 75, 79, trauma 18–20
179, 204–5 trigger warning 18–20
suicide 17, 18, 19, 35, 56 Turner, Dale 127–30
Supreme Court of Canada 29–30, 36–7, Tuskegee Syphilis Experiment 55
76, 95, 106
Supreme Court of Missouri 35–6, 51 United Nations Declaration on the Rights
Supreme Court of New Jersey 56 of Indigenous Peoples 94–5
Supreme Court of the United States 36, university-community collaboration
51, 169 110–12, 114–15, 116
surgery 29–31, 48, 66, 150–1, 234 University of British Columbia 235
University of Michigan Health System
Taylor, Charles 73–4 154
Tesco 169; see also Cancer Research UK USA Today 150
Thatcher, Margaret 232
The Atlantic 154 vegetative state 35, 43, 45, 56, 68, 76,
The Globe and Mail 100, 150 79
The Guardian 57, 149 violence 14, 15, 16, 94, 96, 100
The New Republic 154 Virilio, Paul 22
The New Yorker 34, 154 vulnerability 1–2, 136–7
The New York Times 150, 155, 170
The New York Times Magazine 154, 157 Washington Post 150
Thomas, Carol 214–15 Weber, Max 2, 21, 34–5, 63–4, 75
time: biomedical and colonial 102; elegiac Weiming, Tu 209, 222
time of life 101–4; untimeliness of World Health Organization 234
death 99–104, 105–6; wrongful birth 33
Toronto Star 77 Wu, Kuang-Ming 221

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The Ethics of Care

Beginning with a focus on the ethical foundations of caregiving in health and

1 Researching Trust and Health

2 Health, Illness and Culture

3 Biopolitics and the “Obesity Epidemic”

4 Globalization and Health

5 Gender Equity in Health

6 Perspectives on Care at Home for Older People

7 Transnational Social Support

8 The Transformation of Contemporary Health Care

9 Children with Gender Identity Disorder

10 Social Housing in Transition Countries

11 Philosophies and Practices of Emancipatory Nursing

12 Comprehensive Care for HIV/AIDS

13 The Ethics of Care

ISBN: 978-1-4724-7559-6 (hbk)

Typeset in Times New Roman

List of figures vii

Introduction: the dialectic of care 1

1 Informed consent and the social regulation of caregiver

2 Judgment, care, and informed consent 63

3 End-of-life conflicts, the law, and Arendt’s political thinking 73

4 The time of a life: ethics and care in the case of a young

5 University–community collaboration with urban Aboriginal peoples:

7 End-of-life as a symbolic order: age in an era of mechanical

8 Good patient–bad patient: the ethical imaginary of cancer 149

9 The clinical epistemology of Ludwig Binswanger (1881–1966):

10 Critique of solution-focused brief therapy 195

11 Rethinking the concept of care 209

Afterword: care, giving: an ethical critique 225

8.1 Event flyer circulated via Facebook 152

Alan Blum and Stuart J. Murray

Elisabetta Basso is Postdoctoral Fellow at the Centro de Filosofia of the University

Ethics: care for the self

Method of Impasse Analysis

The scope of care

Constraints on care and the ideal speaker: getting and

Repaying the debt: theorizing the form of care

A principled relationship: self-transcendence of care

Such self-transcendence necessarily produces objectification. For example,

Care as loan and indebtedness

Care for the trauma as a neo-liberal impasse: triggers,

Caring about care

Great expectations: the courts, informed consent and patient

The legal requirement of consent in medical practice thus reflects an under-

In Canada, the introduction of the element of well-informedness as a requirement

Merely because medical evidence established the reasonableness of a recom-

In the court’s view, the question of whether a particular treatment is beneficial to

one of the basic tenets of patient-centered care is that patients participate in

As part of “patient-centered care.” informed consent fits today into an agenda of

Disenchantment: critique and the “real” world of informed

Patient autonomy at the end of life

In this context, the patient is defined as an autonomous agent, whose decisions,

A patient, in anticipation of circumstances wherein he or she may be

This court-established notion of the need to respect the autonomy of the

1 The incapable person’s guardian of the person, if the guardian has

Principles for giving or refusing consent:

The following are my instructions to my Attorney(s) and my wishes with

The consent and capacity board: in defense of patient

Application to determine compliance with s. 21

We are recognizing . . . the presumed validity of a legal document executed

We were aware that instances of miraculous cures and divine intervention

Medicine’s representation of the patient’s desire to be

[T]reating any of her symptoms resulted in additional symptoms and risks