You are on page 1of 17

This article was downloaded by:[EBSCOHost EJS Content Distribution]

[EBSCOHost EJS Content Distribution]


On: 20 July 2007
Access Details: [subscription number 768320842]
Publisher: Taylor & Francis
Informa Ltd Registered in England and Wales Registered Number: 1072954
Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Journal of Medicine and Philosophy


A Forum for Bioethics and Philosophy of
Medicine
Publication details, including instructions for authors and subscription information:
http://www.informaworld.com/smpp/title~content=t713658121

Collective Moral Imagination: Making Decisions for


Persons With Dementia
Elisabeth Boetzkes Gedge
Online Publication Date: 01 August 2004
To cite this Article: Gedge, Elisabeth Boetzkes , (2004) 'Collective Moral
Imagination: Making Decisions for Persons With Dementia', Journal of Medicine and
Philosophy, 29:4, 435 - 450
To link to this article: DOI: 10.1080/03605310490503579
URL: http://dx.doi.org/10.1080/03605310490503579

PLEASE SCROLL DOWN FOR ARTICLE


Full terms and conditions of use: http://www.informaworld.com/terms-and-conditions-of-access.pdf
This article maybe used for research, teaching and private study purposes. Any substantial or systematic reproduction,
re-distribution, re-selling, loan or sub-licensing, systematic supply or distribution in any form to anyone is expressly
forbidden.
The publisher does not give any warranty express or implied or make any representation that the contents will be
complete or accurate or up to date. The accuracy of any instructions, formulae and drug doses should be
independently verified with primary sources. The publisher shall not be liable for any loss, actions, claims, proceedings,
demand or costs or damages whatsoever or howsoever caused arising directly or indirectly in connection with or
arising out of the use of this material.
Taylor and Francis 2007

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

Journal of Medicine and Philosophy


2004, Vol. 29, No. 4, pp. 435450

Collective Moral Imagination: Making Decisions


for Persons With Dementia
Elisabeth Boetzkes Gedge
McMaster University, Hamilton, Ont., Canada

ABSTRACT
Much debate concerning precedent autonomy that is, the authority of former, competent
selves to govern the welfare of later, non-competent selves has assumed a radical
discontinuity between selves, and has overlooked the bridging role of intimate proxy decisionmakers. I consider a recent proposal by Lynn et al. (1999) that presents a provocative
alternative, foregrounding an imagined dialogue between the formerly competent patient and
her/his trusted others. I consider what standards must be met for such dialogues to have moral
force, appealing to narrative and feminist ethics. I then critique the dualistic construction of
selves implicit in much of the advance directive literature, noting the continuities of
dependence, character, and body, as well as the social dimension of the construction of selves.
Keywords: autonomy, hyperseparation, imagination, narrative ethics

I. INTRODUCTION
Critics of the advance directive movement have highlighted both the
metaphysical and the epistemic constraints on projecting decisions to future
states of ourselves. Metaphysical skepticism focuses on the problem of personal
identity through radical physical, mental or emotional changes, and thus
questions the moral priority given to care decisions made by a prior state of
the self. Epistemic skepticism casts doubt on our capacity to imagine ourselves with different abilities, needs and preferences in radically different circumstances. Proxy decision-making hardly alleviates these difficulties, as the

Address correspondence to: Elisabeth Boetzkes Gedge, Ph.D., Department of Philosophy,


McMaster University, 1280 Main Street West, Hamilton, Ont., Canada L8S 4K1. E-mail:
boetzkes@mcmaster.ca
10.1080/03605310490503579$16.00 # Taylor & Francis Ltd.

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

436

ELISABETH BOETZKES GEDGE

substituted judgment standard duplicates the epistemic problem while the best
interests standard seems to dismiss the preferences of the formerly competent
person.
Recently the debate concerning precedent autonomy the authority of
former selves to govern the welfare of later selves has reached new heights in
a disagreement between Dena S. Davis and Rebecca Dresser (Davis, 1999).
Whereas Dresser calls us to foreground the interests of current persons over
the autonomy of their former selves, Davis recommends (in the extreme case)
rational suicide for those with a diagnosis of dementia who prefer death with
dignity to becoming a pleasantly senile future self. She says,
If Dressers perspective becomes the regnant model, persons at genetic risk
for diseases such as HD and AD, and for whom autonomy and independence
are important values, would do well to consider preemptive suicide.. . . For
the autonomy-oriented person who accepts Dressers arguments, a diagnosis
of impending dementia is a warning that one is about to be invaded by an
enemy army that will always win. It is entirely sensible to burn down the fort
and refuse to be at home. (Davis, 1999, p. 321)
In this paper, I challenge Davis assumption that the discontinuity between
past and future selves in dementia is such that current selves must, in
desperation, view their future selves as hostile and embrace suicide as the best
way to assert their moral agency. Appealing to a proposal made by Lynn et al.
(1999) (hereafter, the Lynn/Dresser proposal), I explore the suggestion that an
imaginary dialogue with a former self, constructed by intimate others in the
present, can be a vehicle for the former selfs agency even when the current self
is no longer competent. I will argue that, with appropriate constraints in place,
following their proposal for an imaginary dialogue between formerly competent
patients and their intimate others will, in some cases, de-problematize proxy
decision-making and strengthen the moral authority of privileging the interests
of non-competent persons over the prior directives of their competent selves. I
will then consider Daviss objections to such privileging, and expand on the
Lynn/Dresser notion of a social self to challenge assumptions about the nature
and boundaries of selves inherent in Davis account.

II. PRECEDENT AUTONOMY


Davis suggestion, that preemptive suicide is a reasonable option for those
who fear that their preferences for future treatment will be ignored, is a dire

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

437

one, and, as such, reflects the central importance given to the value of
autonomy in the health care ethics of the late twentieth century. The moral
weight of patient/client autonomy derives partly from historical and
sociological factors, and partly from an understanding of the moral status of
the human person. Historical and sociological explanations for foregrounding autonomy include the public exposure of widespread past abuses to
participants in medical research and the challenge to physician paternalism
from an educated public with increased access to medical information. The
ethical argument for foregrounding autonomy derives from the recognition
that persons are rational and reflective beings who choose values and wish to
live their lives in accordance with those values. To deny persons a privileged
voice in their health care decisions is to deny their status as moral decisionmakers and to deny the importance of the body as a vehicle of personal
identity and moral agency. The prerogative of patients/clients to make
decisions about their own treatment is widely acknowledged and is embedded
in Anglo-American law and in the codes of ethics of Western health care
practitioners. Competent patients/clients are understood to have a privileged
status in health care decisions and to have the right to refuse advice or
treatment, even if doing so threatens their lives.
When persons suffer from conditions, which limit their decision-making
capacities, their privilege as autonomous decision-makers is suspended. Yet it
is precisely in anticipating such circumstances that many people vehemently
desire that their wishes concerning future treatment will be followed. There is
a widespread fear of becoming a passive victim of a highly technologized
death, of an extended life of loneliness, suffering, and indignity, or of being a
burden to family members. It is clearly desirable for persons to be able to have
some say in the conditions of their extremity, for the end of life should reflect
the moral significance of individual personal existence and the values that
have shaped it. Advance health care directives, filled out by currently competent persons and spelling out their preferences for future treatment in the
event that they should become non-competent, are a popular vehicle for
addressing this desire to extend autonomy.
When persons are not competent to make health care decisions for themselves, proxy decision-makers, usually close family members, make decisions
for them. If an advance directive has been written, proxies are guided by the
wishes expressed within them. Where no directive exists, but the proxy has
some knowledge of the wishes of the patient in question, the substitute decision
standard is used. Here the proxy infers from personal knowledge of the patient
what s/he would prefer, and decides accordingly, setting aside her/his own view

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

438

ELISABETH BOETZKES GEDGE

of what is best, if necessary. If the proxy has no relevant knowledge of the


patients wishes, the best interests standard is employed. The best interests
standard either asks what a reasonable (generic) person in the patients situation
would prefer or appeals to past practice in similar cases. None of these
approaches is ideal. Advance directives and substituted judgments may not be
sensitive to important contextual details, while the best interests standard
overlooks the difficulty of applying the reasonable person test to those who now
lack (but did not always lack) significant cognitive capacity.
But both advance directives and the substituted judgment approach present
a further problem with proxy decision-making for persons with dementia, one
that gets to the heart of the previously cited debate between Dena Davis and
Rebecca Dresser. What does a proxy decision-maker do when faced with a
clearly expressed prior preference that compromises the current interests of
the patient? Persons with dementia may have reduced mental capacities, but
they may nonetheless enjoy a range of pleasurable experiences and, of course,
as sentient they have an interest in avoiding painful ones. In privileging
precedent autonomy, as advance directives and substituted judgments do, the
interests of the current self may be compromised; but in embracing the best
interests standard, the autonomy of the former self is dismissed.
III. THE LYNN/DRESSER PROPOSAL
The Lynn/Dresser proposal offers a provocative solution to the apparent
dilemmas posed by standard approaches to preserving autonomy in advance care
planning. The authors argue as follows: Since our moral perspectives and identities are formed interactively and dialogically, through the projects, decisions
and experiences we share with intimate others, those others may be able to
construct plausible decisions on our behalf, based not on prior directives or the
best interests standard alone, but on imagined conversations. Such conversations,
to the extent that they accurately mirror the past process and substance of our
moral and personal decision-making, may in fact be better vehicles of agency
and autonomy than conventional directives. As the authors say,
We often do not know what we think about something until we have talked
it over with someone, testing not only our reasons but also our feelings
against another persons intuitions and objections. Because the model of
persons as autonomous, unencumbered self-asserters is so pervasive, it has
been easy to overlook this process by which many preferences are actually

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

439

formed. This process belongs not to the self-sufficient self, but to a model of
persons as social selves, responsive to and influenced by the responses of
others. (Lynn et al., 1999, p. 276)
To illustrate this approach in action, the authors have us consider the case of a
wife who has filled out a directive refusing antibiotics if she should develop
pneumonia. Late in the course of her dementia she does, in fact, develop
pneumonia, and her husband nonetheless insists that she be treated with
antibiotics. Why should care-providers respect his current wishes over her
past directive? Because, the authors argue, the directive does not reflect the
process which would take place, were she competent and were she and her
husband able to discuss the fact that the treatment is relatively painless, her
pneumonia reversible, her current state of dementia not as burdensome as she
had feared, and his attachment to her such that letting her go now would be
very hard. This is not simply the displacement of her wishes by his. Rather, it
is the recognition that (1) her past preferences could not be viewed as
expressive of her values in this circumstance, since, as they have argued,
preferences are responsive to changes in situation and are determined
dialogically; and that (2) the husband brings to the decision his knowledge of
how she tends to decide matters and the constellation of values and
experiences out of which her decisions proceed. He can make up her deficit
of awareness and engagement with the current circumstance because he, as
they so movingly put it, now has her self in his keeping, for his relationship
with her has been constitutive of them both (Lynn et al., 1999, p. 277).
The Lynn/Dresser proposal has much to commend it. It takes seriously the
metaphysical and epistemic difficulties of advance care planning, yet proposes
a remedy that both respects the agency of past selves and the interests of
present ones. For arguably the past competent self is present in the negotiation,
embodied in the process and substance brought forward by family members,
while the circumstances and interests of the current self also play a role, as
assessed and evaluated by proxy.
The proposal also has merit in that it reflects recent theoretical discussions
of personhood and moral decision-making that have proposed a similar,
though more modest, role for intimate others. For instance, Diana Myers has
analyzed autonomy as a dynamic set of interactive competencies of selfdiscovery, self-definition and self-direction (Meyers, 1989). Susan Sherwin
(1992) and Sarah Hoagland (1988) have proposed models of autonomy
(amicalism and autokoenony respectively) that show our reliance on

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

440

ELISABETH BOETZKES GEDGE

trusted others for autonomous decision-making. Anne Donchin calls on us to


develop a relational notion of autonomy with a positive conception of human
agency that recognizes relational experiences as an integral dimension of
individuality (Donchin, 2001). While the Lynn/Dresser proposal incorporates these insights, it strikingly goes beyond them to show how imaginary
dialogue can be a vehicle for authentically simulating the decisions of
individuals no longer capable of engaging in the interactive decision-making
process for themselves.

IV. REFINING THE PROPOSAL


The authors are not naive about the risks of their proposal. As they say, while
most families are normally dysfunctional, some are considerably more
dysfunctional than others, and care-providers should be alert for persons
acting out of selfishness, avarice, or a desire to punish. Intimate others clearly
must be trustworthy, if the imaginary dialogue is to find a satisfactory moral
footing. As Annette Baier (1986) has famously suggested, morally decent trust
would endure the exposure of the basis for trust in the one trusted. In the
context of health care decisions, revealing unsavory motives (such as coveting
an inheritance or wanting to shake off a tiresome burden) would certainly
undermine trust if known, and hence such motives should nullify the authority
of the proxy. By contrast, say Lynn, Dresser and the others, if care-providers
find evidence that the family is a collective rather than a collection
possessing a kind of solidarity, shared sense of purpose, and mutual affection
(Lynn et al., 1999, p. 277), they should be guided by such families in the
application and modification of former directives. Thus, for normally
dysfunctional families, the imagined dialogue offers a morally and philosophically attractive option for care decisions.
But is solidarity, affection, and a shared sense of purpose enough to qualify
intimate others as vehicles of patient agency? Even with good will, epistemic
problems may persist in the guise of denial, shame, fear of loss, an accepted
hierarchy of interests within a family, or just the lack of transparency we have
to each other. Spouses can still be surprised (pleasantly or not!) by each others
reactions to unusual events, when attitudes and values hitherto untapped
emerge. What we reveal about our innermost fears, desires, or preferences
varies according to the interlocutor. We may wish to appear courageous or
stoical to our most intimate others. There may be a lack of information

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

441

available to the proxy due to a previously morally uneventful life on the part of
the loved one; or there may be faulty judgment stemming from a systemic
downgrading of interests of some family member. Thus, data for these
imaginary dialogues may be missing, incomplete, suppressed, or biased, and
their authenticity and moral authority may thus be questionable. Determining
the authenticity of simulated dialogues requires more rigorous guidelines.
Let us address these challenges one at a time. First, in the unlikely
circumstance where nothing in a patients former life is sufficiently ethically
analogous to the current situation to provide data for the imaginary dialogue
about how she would reason and what she would want, there is no alternative but
to revert to the best interests standard. In these circumstances, any version of
substituted judgment imaginary or not would likewise be uninformed.
Equally obvious, the imaginary dialogue is most morally convincing when
closest in time and content to real dialogues between the patient and the proxy.
Thus, in the case of slowly advancing dementia, the patient has probably
undergone similar experiences and participated fully in decision-making while
competent. Preferences about similar circumstances in the recent past will have
been informed by experience and conversation and can be confidently asserted
in the present.
Dealing with emotional obstacles to providing a faithful reconstruction of
the preferences of a loved one, such as denial, shame, or fear of loss, likewise
need not negate the usefulness of the model. Such states are often identifiable
by care-providers, and can usually be dispelled by sensitive discussion. Anne
Donchin sees the cultivation of increased perceptual skills on the part of careproviders as one of the requirements for taking relational autonomy seriously.
She says professional care-givers can develop greater acuity in picking up
situational cues that extend their knowledge of patient needs and that by
cultivating such skills, providers would expand opportunities to strengthen
patients sense of their own agency, encouraging them to relate to surrounding others in ways that support their own aims and ends (Donchin, 2001,
p. 377).
The interesting cases, those that test the novelty and value of the Lynn/
Dresser proposal, are those where emotional obstacles are not a factor, but
interpretation is required to construct a plausible dialogue. In such cases, we
do have data about a loved ones past preferences, reasoning styles, and value
commitments, but inferences are required to arrive at a conclusion about what
they would want now. For, as noted above, we are never fully transparent, even
to intimate others.

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

442

ELISABETH BOETZKES GEDGE

Here narrative ethics might seem a promising approach. Can the norms of
narrative ethics provide us with guidelines for authentic simulations of moral
decisions? According to Howard Brody (1994), narratives support ethical
decisions by telling a coherent story, with consistent and plausible characters
whose values, relationships and commitments, descriptively bound together,
point prescriptively in a particular direction. Further, claims Brody, narrative
ethics gives pride of place in the genesis of autonomous decisions to
interactions with intimate others, precisely as the Lynn/Dresser proposal
supposes. Brody says,
How would I approach a momentous decision in my own life? First, I am
conscious at some level of wanting my life to unfold in a coherent narrative.
I want my actions to appear reasonable and responsible, as the sorts of
things that the principal character in my life story would do, given what we
know of his past history, his value commitments, and his relationships with
others . . . Moreover, I want my life story to be the story of a person who
cares what his close associates think of him . . . . How will I know what
decision seems best to fit with the history and the character of the principal
figure in my life story . . . ? I may have to try on different choices, both to
see how my family and friends react to them, and also to see how well I can
envision myself following out that course of action. (Brody, 1994, p. 210)
As well as reinforcing the role of intimate others in the making of ethical
decisions (and so, by extension, supporting the Lynn/Dresser proposal),
Brodys account suggests norms of adequacy for our imaginary dialogues. We
might assess proxy judgments about mediated preferences on the basis of
whether they tell coherent stories of the moral lives of loved ones.
Unfortunately, though protecting our imaginary dialogues from pure
arbitrariness, narrative norms alone are insufficient to guarantee authenticity,
for, as we all know, lives (and any other set of events to be patterned) are over
determined. A number of competing narratives can tell an equally plausible
tale. Let me illustrate this point with a personal example.1
A few years ago my father suffered a serious infection in his leg. It began
when a small stone rubbed against his foot on his customary daily nine-mile
walk. At that time, my father was in his mid-seventies, very vigorous and fit,
and taking pride (as he always has) in his physical strength and stamina (which
are considerable). As a man who has always been active and dedicated to the
service of others, he dreads morbidity, although not death. As I drove to the
hospital where my father was barely conscious and the infection was

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

443

spreading dangerously, I wondered what I would say if I was asked, as his


proxy, whether to consent to an amputation if the drugs failed to remedy the
infection before it threatened his life. I decided, knowing him and loving him,
that he would rather risk death than lose his leg, and if I had been asked
whether to take that risk (which mercifully I wasnt) that is what I would have
said. Well, the outcome was happy. The drugs took care of the infection and
within a year he was back to his long walks, although his leg still troubles him.
With the event safely in the past, I asked him one day If you had to choose
between death and living with only one leg, what would you choose? and he
said, without a moments hesitation, Life with one leg wouldnt be so bad!
My narrative had been shaped by his independence and vigor, whereas his own
narrative was dominated by flexibility and humility.
As well as being personally risky, norms of narrativity may bear cultural
bias. Susan Wolf has drawn attention to the cultural role of gendered imagery
in our attitude towards death and this analysis has been extended by others to
reveal the gendered inequities in the distribution of diagnostic and therapeutic
benefits. As Wolf says, In Greek tragedy only women were candidates for
sacrifice and self-sacrifice, and to this day self-sacrifice is usually regarded as
a feminine not a masculine virtue (1996, p. 399). Such imagery and
unexamined assumptions could well shape the narrative efforts of even the
affectionate families with common purposes and solidarity in the face of
troubles. Any set of narrative norms we embrace must include political
correctives against bias.

V. THE PRESCRIPTIVE FORCE OF SIMULATED


PREFERENCES
We have already noted the problems of transparency and cultural bias that may
afflict our efforts to support the imaginary dialogue as a way of constructing
the treatment preferences of the formerly competent. But a further ethical
question arises, and that is, what prescriptive force should these preferences
have? Should we accede to the constructed preference of a formerly
competent loved one in the case where that preference is for the avoidable
death of the current self? What if, in the case with which we began, there were
no countervailing reasons from the past relationship between the competent
person and her intimate others that might support the decision to give
antibiotics? Should the successor self be allowed to die?

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

444

ELISABETH BOETZKES GEDGE

Let me get personal again here for a moment. My mother, who is ninety-two,
has periods of dementia increasing in scope and duration. She sometimes
doesnt know her daughters or sons-in-law, grandchildren, or friends. She
doesnt know which country she is in or what has taken place in the recent past.
She always knows my father, but sometimes thinks he is her father.
As a young woman, she spent many years nursing her ailing mother, as a
result of which she told us all her life that if she ever became significantly
dependent we should put her in a home. Until last winter, my father looked
after her, managing everything from personal care to cooking to safety to
companionship. However, when he had a health crisis and could not manage
her care, we found her a place in an extended care facility, where she stayed
for four months. Every day of those four months she asked why she was there,
where was her home and family. Every day my father explained it all and tried
to comfort her. Finally, in better health and unable to face the separation any
longer, he brought her home to care for her himself again, for as long as he
can. What do we make of her former enduring preference (indeed, insistence)
that she be placed in a home? To follow that preference now for that reason
would be unthinkable. But in order to support my intuition that her current
interests must trump, must we abandon respect for her former values, style of
reasoning, and oft-stated preference?
One strategy for reconciling the preferences of formerly competent loved
ones with their less- or non-competent successors without abandoning the
Lynn/Dresser proposal is suggested by Brodys account of narrative ethics. In
describing the genesis of narratives, Brody maintains that shared cultural
ethical norms norms such as rights, responsibilities, and virtues are
necessarily elements in the backdrop of our stories (Brody, 1994, p. 213). It is
inevitable, he thinks, when telling a story of personal morality, to engage with
cultural norms, whether implicitly or explicitly. We might, therefore, include
in our imaginary dialogue a critical component that challenges supposed
preferences against ethical norms. We might even refine these norms (for
instance, by subjecting them to feminist analysis), thereby correcting for
unconscious bias.
Were we to employ this internalist solution, we might be able to reconcile
our moral intuitions about the appropriate care of non-competent patients with
respect for the agency of their former, competent selves, albeit hypothetically
and with considerable moral and imaginative license. We might then be able to
say, for instance on behalf of my mother, that her preference would be for the
care of her current self, notwithstanding her former distaste for dependency,

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

445

since she would certainly have accepted the moral challenge to examine that
preference in light of our responsibilities and our compassion and indeed
would have responded with compassion for her current self! She ultimately
would have approved of our actions.
But this might seem to some, and no doubt would to Dena Davis, an
unacceptable sleight of hand. Isnt it, after all, acknowledging victory to the
pleasantly senile self, she who is radically discontinuous and in competition
with the self whose moral preferences were clear and whose future so dreadful
that Davis counseled suicide? In this final section, I would like to gently
challenge Davis analysis, in the hope of reducing the discontinuity she
assumes between the selves of her conflict and, hence, of giving some
ontological grounding to the moral prescriptions I sketched above.

VI. DAVIS SELVES


Davis argued the case for preemptive suicide by describing the pleasantly
senile selves of advanced dementia as separate and hostile selves. She refers to
the tragedy of Iris Murdoch (who went from writing novels to spending the
morning watching Teletubbies) and of Dworkins Margo (who enjoys her
peanut-butter-and-jelly sandwiches, aimlessly turns the pages of her mystery,
basks in the sun, recognizing no one, connecting to nothing, smiling and
apparently content). Described in this way, the contrast between past competent
and current non-competent selves is stark and frightening. But it is also
misleading.
Val Plumwood (1993) has described such dualistic reasoning as
hyperseparation the denial of overlap or commonalities between identities,
with one identity defined in terms of the lack of the defining features of the
other. Davis construction of the identity of non-competent selves, in my view,
engages in just such dualistic reasoning, in two ways: in the hyperseparation
between competent selves and their non-competent descendants, and in the
hyperseparation between us and them between competent decisionmakes and the non-competent others for whom we are deciding. The
hyperseparation is manifested both in Davis description of the features of
autonomous selves and in her neglect of the continuities that do, in fact, exist
between the competent and the non-competent.
First, the features with which Davis defines competent selves are denied to
their non-competent descendants. Autonomy, for instance, is reduced to

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

446

ELISABETH BOETZKES GEDGE

independence, and analysed so as to limit its application to the healthy,


reflective adult with full capacities. This overlooks the continuum of human
dependence on which each of us is placed, and along which we are all destined
to move. Susan Wendell (1996), in her discussion of disability, has shown how
context-dependent the notion of independence is, citing, as an example, our
multiple dependencies in the simple act of drinking a glass of safe, potable
water. Eva Feder Kittay (1999), likewise, has called for a recognition that
dependency is part of the human condition. She says,
Our dependency is not . . . an exceptional circumstance. To view it as such
reflects an outlook that dismisses the importance of human interconnectedness, not only for purposes of survival, but for the development of culture
itself, . . . My hope is that once we understand the clearest cases of
dependency, we will appreciate the full range of human interconnection,
and see how all moral and political concepts need to reflect these
understandings. (Kittay, 1999, p. 30)
Furthermore, to identify dignity with being placed at a particular point on
the continuum of dependence is prejudicial. If having dignity involves having
ones identity considered and ones values taken into account, the advocacy
inherent in the Lynn/Dresser simulated dialogue with the formerly competent
and especially its subjection to critical ethical norms surely strengthens
dignity rather than allowing it to be undermined.
Not only is Davis construction of selves dualistic in terms of the properties
she ascribes to them, but it also overlooks significant elements of continuity
between past competent selves and future selves. Continuities can be
manifestations of character, expressed in emotional responses, desires, and
reactions of current selves. Koppelman (2002, pp. 7883) argues that since
dignity, autonomy, and selfhood are linked, neither privileging past selves (as
character theorists do) nor privileging current selves (as experiential
theorists do) adequately ensures dignified treatment, that is, treatment made
in the spirit of autonomy. Rather, she calls for a consideration of whole
selves. Endorsing the idea that the continuity of the self may endure beyond
the loss of competence, she maintains, with Jaworska (1999), that persons
suffering from dementia may well express the values and critical interests that
have shaped their character, even though they lack a conception of their life as
a whole. She says, The ability to express critical interests is not lost as soon
as the patients memory becomes impaired (although an ability to create new
ones may be). There are typically considerable moments of continuity

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

447

between the now self and the then self (Koppelman, 2002, p. 81). And she
goes further to suggest that, since it is the episodic experiences of the self
that help to shape the values of the self, proxy decision-makers should develop
the skill to put the self back together, not necessarily as it was before.
Surrogate decision-makers require a better understanding, she says, of
how changes in brute desires, emotional reactions, and circumstances affect
changes in character, life plans, and goals (Koppelman, 2002, p. 82). Where
circumstances or responses of the current self change, proxies may exercise
practical wisdom and creative judgment (Koppelman, 2002, p. 81) in
reconstructing the character of the past self in light of change. This is
surely another way of describing the Lynn/Dresser proposal of an informed
imaginary dialogue with a former self.
Continuities are also apparent at the bodily and emotional level. Hearing a
once-loved lullaby or hymn or feeling a caress will soothe or bring a smile to
the face of a senile adult. Emotional responses, though poorly understood,
may be informed by the past. As my mother said (with pleasure) of my
daughter-in-law: I dont know who that girl is, but I know I love her!
And continuity of the self is not borne by the individual alone; intimate
others carry the selves of their demented loved ones, as noted above. When we
bring my mother a box of ginger chocolates, she smiles and asks, Are they my
favorites? But this cooperative carrying of less competent selves is really only
an exaggerated and largely (though not entirely) unilateral form of what we
ordinarily do in constituting and being constituted by the memories, stories,
and loving acts of others. An old friend can recount a story in which I was a
player. The flavor of the story may resonate but the details quite escape me.
When this happens it is like a gift of me to myself. My old friends and my
intimate others carry my self, just as my family and I carry the self of my
mother. Hyperseparation between selves is reduced by the sharing of identityproperties, such as dependence, dignity and autonomy, between the competent
and the non-competent; by the manifestation of the character of the noncompetent through their episodic experiences; and by our generalised reliance
on each other for the constitution of our selves.
Are there moral limits to the extension of the self and the Lynn/Dresserstyle mediation of its autonomy? I believe so. As moments of resonance with
the former self fall away, and as intimate others are increasingly morally
shaped by other relationships, their moral authority as mediators of the former
self diminishes. This has less to do with the advancing dementia that eclipses
the former self than with the gradual weakening of the claim that intimate

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

448

ELISABETH BOETZKES GEDGE

others can represent the process and substance of the reasoning of a distant
self. Perhaps in these circumstances we might appeal to another suggestion
made in the Lynn/Dresser proposal, that:
[I]n practice, surrogate decision-making for incompetent patients often has
to draw on all three standards for decisions about an incompetent patients
care. This blending of different kinds of reasons and reasoning in particular
decisions by surrogates for incompetent patients recognises the priority of
the different forms of reasons and reasoning; at the same time, it remains
sensitive to the variability in the degree to which the different kinds of
reasons are available, or are determinative and decisive, in a particular
situation. (Lynn et al., 1999, p. 273)
Where an imaginary dialogue can no longer provide a legitimate mediation of
the autonomy of a former self, some such blended approach to proxy
decision-making, applied with Koppelmans practical wisdom and creative
judgment on a case-by-case basis, may be the best we can do.

VII. CONCLUSION
In this paper, I have explored the proposal by Lynn, Dresser and others that we
should sometimes view the deliverances of proxy decision-makers in cases of
dementia as vicarious exercises of agency by their formerly competent
intimate others. Through imaginative constructions of dialogues, sometimes
embedded in plausible narratives, the preferences of intimate others may be
updated, rendered responsive to current circumstances and wishes of family
members, and criticized by relevant ethical norms. The constraints on this
process that proxies must be trustworthy, free of emotional impediments,
capable of telling a coherent story, and willing to subject their stories to
political and other correctives elevate the imaginative dialogue from the
status of a just so story to something with prescriptive force. Because of the
ambiguity of our moral lives, competing narratives may be rendered.
Furthermore, because our moral license to act as mediators derives from the
constructive immediacy of our connection with the other, the license may run
out.
Both complications suggest desiderata for the exercise of vicarious
autonomy. One is that, where possible, a number of intimate voices should
be heard, and contrasting narratives compared. Another is that discussion of

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

COLLECTIVE MORAL IMAGINATION

449

the best interests of the current non-competent self should figure in the
imaginary dialogue, and gain ascendancy as dementia becomes profound.
And, importantly, none of this is to suggest that other moral considerations
(such as unbearable burdens of care falling on family members or extravagantly costly and futile medical measures being employed) should be
trumped by appeals to autonomy. Autonomy is only one morally relevant
feature. Finally, I have suggested that by questioning the dualistic construction
of selves and the valorizing of independence we can answer those who, like
Davis, regard selves with dementia as morally and personally too remote to
make justifiable demands on us. Instead we can say, We have seen our future
selves; and they are us!
NOTE
1. With the consent of my father (who is also proxy for my mother), I use two personal
examples in this paper to highlight the complexity of proxy decision-making by intimate
others. Although it is unusual to cite personal examples to make a philosophical point, I
appeal to Susan Rubins eloquent defence of arguing from ones own case in bioethics. In a
paper given at the Canadian Bioethics Society in Winnipeg in October of 2001, Rubin
observed that, while bioethics relies on the use of cases, we seldom use our own. She offered
rebuttals to three objections to using ones own case in bioethics: metaphysical, ethical, and
methodological. Against the metaphysical sceptics, who claim one lacks objectivity when
telling ones own story, she observes that (i) all experiences are mediated by interpretation
and require critical evaluation, the stories of others as much as our own, and (ii) transparency
is heightened when an author discloses how she got where she is. Against those who
challenge the ethics of self-disclosure, she argues that truth-telling and fairness are in fact
enhanced by citing ones own case, as ones standing and authority with respect to the topic
can more readily be assessed. She offers three ethical guidelines for self-disclosure: Is it
useful to the audience? Why are we disclosing? How appropriate is self-disclosure in the
context? Finally, she argues that, methodologically, using ones own case offers a rich
resource heretofore dismissed on inadequate grounds. And, pointedly, she observes that in
many professions (for instance, psychological counseling) it is considered good practice to
reveal ones personal experiences and evaluate them for bias.

REFERENCES
Baier, A. (1986). Trust and anti-trust. Ethics, 96, 231260.
Brody, H. (1994). The four principles and narrative ethics. In: R. Gillon (Ed.), Principles of
health care ethics (pp. 207215). Canada: John Wiley and Sons.
Davis, D.S. (1999). Rational suicide and predictive genetic testing. Journal of Clinical Ethics,
10, 316323.

Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007

450

ELISABETH BOETZKES GEDGE

Donchin, A. (2001). Understanding autonomy relationally: Toward a reconfiguration of


bioethical principles. Journal of Medicine and Philosophy, 26, 365386.
Hoagland, S. (1988). Lesbian ethics: Toward new value. Palo Alto, CA: Institute of Lesbian
Studies.
Jaworska, A. (1999). Respecting the margins of agency: Alzheimers patients and the capacity
to value. Philosophy and Public Affairs, 28, 105138.
Kittay, E.F. (1999). Loves labour: Essays on women, equality, and dependency. New York and
London: Routledge.
Koppelman, E. (2002). Dementia and dignity: Towards a new method of surrogate decisionmaking. Journal of Medicine and Philosophy, 27, 6585.
Lynn, J., Teno, J., Dresser, R., Brock, D., Nelson, H., Nelson, J., Kielsten, R., Fukuchi, Y., Lu,
D., & Itakura, H. (1999). Dementia and advance care planning: Perspectives from three
countries on ethics and epidemiology. Journal of Clinical Ethics, 10, 271278.
Meyers, D. (1989). Self, society and personal choice. New York: Columbia University Press.
Plumwood, V. (1993). Feminism and the mastery of nature. London: Routledge.
Rubin, S. (2001). Thinking about old questions in new ways. Unpublished paper. Presented at a
plenary session of the Canadian Bioethics Society, Winnipeg, Manitoba, Canada.
Sherwin, S. (1992). No longer patient: Feminist ethics and health care. Philadelphia: Temple
University Press.
Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability.
New York and London: Routledge.
Wolf, S. (1996). Gender, feminism and death: Physician-assisted suicide and euthanasia. In: S.
Wolf (Ed.), Feminism and bioethics: Beyond reproduction. New York: Oxford University
Press.