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Qualitative Health Research

On Ethical (In)Decisions Experienced by Parents of Infants in Neonatal Intensive Care

Michael A. van Manen
Qual Health Res 2014 24: 279 originally published online 27 January 2014
DOI: 10.1177/1049732313520081

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QHRXXX10.1177/1049732313520081Qualitative Health Researchvan Manen

Qualitative Health Research

On Ethical (In)Decisions Experienced by

2014, Vol. 24(2) 279­–287
© The Author(s) 2014
Reprints and permissions:
Parents of Infants in Neonatal Intensive
DOI: 10.1177/1049732313520081


Michael A. van Manen1

This study was a phenomenological investigation of ethical decisions experienced by parents of newborns in neonatal
intensive care. I explore the lived meanings of thematic events that speak to the variable ways that ethical situations
may be experienced: a decision that was never a choice; a decision as looking for a way out; a decision as thinking and
feeling oneself through the consequences; a decision as indecision; and a decision as something that one falls into. The
concluding recommendations spell out the need for understanding the experiences of parents whose children require
medical care and underscore the tactful sensitivities required of the health care team during moral–ethical decision

ethics / moral perspectives; infants; lived experience; phenomenology; van Manen

In the neonatal intensive care unit (NICU), the newborn phenomenal meaning of an ethical decision lies neither
child is the central concern of moral–ethical decision wholly in the subjective nor in the objective realm but
making. The child, who is vulnerable and without auton- rather in the manner in which parents are confronted with
omy, relies on the parents and health professionals for their child’s situatedness. The presence of multiple medi-
ethical decisions regarding medical interventions (Miller, cal caregivers (nurses, physicians, and so forth) and the
2007). The parents are charged with relative authority as techno-medical environment itself may complicate the
surrogate decision makers to determine what is in their nature and quality of contact between parent and child in
child’s “best interest” (Buchanan & Brock, 1989). the NICU (van Manen, 2012a, 2012b).
From a bioethical perspective, an ethical decision
tends to be understood as a rational, deliberative affair
such that in prevailing discourses it is approached as a
Related Literature
dilemma to be analyzed or a problem to be solved (Ladd A considerable amount of research has been devoted to
& Mercurio, 2003; Leuthner, 2001). A number of differ- understanding parental ethical decision making.
ent conceptual models have been developed to provide Quantitative epidemiologic studies have identified fac-
structured frameworks for determining and evaluating tors that correlate with the desire for medical interven-
moral issues, mediating between abstract ethical theory tion: parental age, race, and religion; medical diagnosis
and concrete health care practice (Beauchamp & and uncertainty about prognosis; and physician prefer-
Childress, 2001). Although the child’s “best interest” may ence (Arad, Braunstein, & Netzer, 2008; da Costa,
be the rational–moral goal of decision making, the Ghazal, & Al Khusaiby, 2002; Doron, Veness-Meehan,
thoughtful question to ask is, What is the lived meaning Margolis, Holoman, & Stiles, 1998; Moseley et al., 2004).
of ethical decisions as they unfold at the bedside? Although these factors are significant determinants at a
A phenomenological perspective gives priority to population level, they do not necessarily determine what
understanding the lived experiences of possible ethical
decisions. To gain access to these experiences, an 1
University of Alberta, Edmonton, Alberta, Canada
approach is taken in keeping with the philosophies of
Emmanuel Levinas (1961/1969) and Bernard Waldenfels Corresponding Author:
Michael A. van Manen, John Dossetor Health Ethics Centre, 5-16
(2006/2011). For Levinas and Waldenfels, the ethics of a
University Terrace, 8303 – 112 Street, University of Alberta,
decision are situated not in abstract theories but in the Edmonton, Alberta, Canada, T6G 2T4.
lived experience of the face-to-face encounter. The Email:

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280 Qualitative Health Research 24(2)

happens at the bedside, where competing factors fre- care professionals in the process of decision making
quently exist. This literature also does not reveal how (Orfali). What professionals view as major decisions may
parents may be relationally informed and directed by not be important decisions for parents, and vice versa. To
their own experience of parental responsibility. In other parents, day-to-day choices such as holding, breastfeed-
words, it does not show how parents may be affected by ing, and discharge planning may constitute major respon-
the vulnerability, singularity, and alterity of their new- sibilities, activities, and effects (Alderson et al., 2006).
borns (van Manen, 2012c). Grounded theory researchers concerned with parental
Qualitative researchers have studied decision making decision making have discussed issues such as ambiva-
from various methodological perspectives. The findings lence, information, communication, inclusion, and
of perception studies, open-ended interview, and struc- responsibility (Brinchmann, Førde, & Nortvedt, 2002;
tured survey studies are similar to quantitative epidemio- Carnevale et al., 2007). These studies, however, are
logical studies. Faith, religion, and spirituality; parents’ aimed at theory development, using codification tech-
childhood, education, and profession; perception of the niques that fail to provide a rich portrayal of the actual
child’s pain and suffering; and perceived prognosis and lived experience of decision making.
reported hope may guide decision making (Boss, Hutton, Existing studies of the phenomenological tradition
Sulpar, West, & Donohue, 2008; McHaffie, 2001; Meyer, have tended to focus more on issues related to decision
Burns, Griffith, & Truog, 2002; Meyer, Ritholz, Burns, & making than on the phenomenon of decision making
Truog, 2006; Vandvik & Førde, 2000). Researchers also itself. For example, Kirschbaum (1996) focused on fac-
discuss parents’ desire for good communication; accessi- tors and values that may impact on parents’ ethical deci-
ble, sufficient, and accurate information; genuine rela- sions: life; pain and suffering; quality of life; not self;
tionships; honesty, compassion, and hope; and respect for person or best interest; family; faith and
involvement, encouragement, and support during deci- nature; and, technology. Other phenomenological studies
sion making (Boss et al., 2008; Brosig, Pierucci, Kupst, seem to have moved into explorations of parental–physi-
& Leuthner, 2007; Kavanaugh, Savage, Kilpatrick, cian role engagement, communication, emotional reac-
Kimura, & Hershberger, 2005; McHaffie; Meyer et al., tions, and the general contextual experience of the NICU
2006; Pepper, Rempel, Austin, Ceci, & Hendson, 2012; (Payot, Gendron, Lefebvre, & Doucet, 2007; Pinch &
Wocial, 2000). Spielman, 1989, 1990, 1993; Wiegand, 2008).
Ethnographic studies have provided insights regarding Unfortunately, many of these studies focus primarily
the sociocultural context of decision making. It is clear on parents’ reflective rather than their prereflective expe-
that professionals and parents approach collective deci- riences. In other words, they focus on what parents think
sion making differently. Physicians tend to be concerned about decision making in the NICU rather than on the
with “distancing aspects” such as giving honest informa- actual lived sensibilities of the parental experience of an
tion and warning parents of possible problems that may ethical decision. It appears that the parental experience of
result in poor outcomes (Alderson, Hawthorne, & Killen, the ethical encounter with his or her child in the NICU, a
2006, p. 1320). Parents, however, tend to emphasize relational ethics perspective of decision making, is a rela-
“drawing together aspects” such as sharing knowledge, tively unexplored subject.
understanding, and planning to hopefully foster mutual
trust in a decision-making space (Alderson et al., p.
1320). In difficult decisions, communication between
physicians and parents is important because the prognos- The aim of this article is to explore the phenomenon of
tication of outcomes may be ambivalent or indeterminate the ethical decision from the perspectival experience of
(Abel-Boone, Dokecki, & Smith, 1989; Einarsdóttir, parents caring for their child. In particular, the focus is on
2009). How health care professionals express medical parents of premature or sick infants requiring hospitaliza-
certainty may control or even “erase the very ethical tion from the time of birth in an NICU.
nature of uncertainty” (Orfali, 2004, p. 2018). A context-sensitive form of interpretive inquiry, phe-
Parents may not understand what it means to be nomenology of practice, was employed (van Manen,
involved or to take part in a decision (Einarsdóttir, 2009; 2007). Phenomenology of practice is a reflective study of
Vermeulen, 2004). The meaning of involvement need not prereflective experience that carries the capacity to culti-
narrowly consist of parents explicitly voicing their opin- vate ethically sensitive understandings and morally
ion. Rather, involvement for the parent may be experi- appropriate actions in the caregivers of children. The
enced as being present (Orfali, 2004). Parents may methodology is well suited to serve practitioners who in
simultaneously desire and resent having to exercise con- their day-to-day practice may be unaware of or insensi-
trol over choices affecting their child’s life, acutely expe- tive to the depths and subtleties of other people’s experi-
riencing the presence or absence of the support of health ences. Although the aim of phenomenological research is

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van Manen 281

to draw near to understanding a particular phenomenon, it which underlying patterns and structures of meaning may
should be acknowledged that phenomenological research be drawn (van Manen, 1990). Gathering examples of a
is always incomplete and tentative because the researcher lived experience is not an isolated research practice. The
cannot possibly capture a given experience in its entirety activity is woven into the explorative questioning of a
nor describe how all people will experience a particular particular phenomenon of interest.
event. As a human science research methodology, phe- For the purpose of this study, parents were recruited
nomenology of practice represents a blending of philo- for interview from four local hospital nurseries in a west-
sophical, human science, and philological methods (van ern province of Canada spanning the scope of acuity seen
Manen, 1990). in neonatal intensive care. Parents were sought out who
had a premature or sick infant requiring hospitalization
from the time of birth in a NICU whereby direction-of-
Philosophical Methods
care decisions were anticipated. More specifically,
The focus on lived experience is an application of the attending neonatologists were asked to identify parents of
philosophical method of phenomenological inquiry: the children for whom they foresaw a high likelihood of a
reduction. It is a method of “leading back” (reducere) to decision regarding limiting life-support therapies (e.g.,
the way in which a recognizable phenomenon is experi- mechanical ventilation, cardiovascular support, or artifi-
enced, before the experience is conceptualized, abstracted, cially delivered nutrition) or a decision marking a shift
or theorized. In effect, the reduction involves taking up a toward a particular direction of care (e.g., tracheostomy,
questioning attitude of radical, reflective attentiveness to complex congenital heart disease surgery, or organ
the way in which we experience the world. Merleau- transplant).
Ponty (1945/1962) wrote, “I posit the stuff of knowledge Parents were invited to participate in the study only if
when . . . I adopt a critical attitude towards it and ask, and when both attending neonatologist and research staff
‘what I am really seeing.’ The task of a radical reflection felt it was morally appropriate after giving consideration
. . . consists, paradoxically enough, in recovering the to such issues as parental psychosocial distress and
unreflective experience of the world” (p. 280). involvement in multiple studies. In total, 14 parents par-
As a physician working in multiple NICUs, I am con- ticipated in the study. Admitting diagnoses of their chil-
tinually confronted with the task of talking with parents dren varied, including extreme prematurity, complex
when situations call for ethical decision making. Still, I congenital anomalies, and neurologic compromise.
tend to be removed from much of the conversations, Parents ranged in age, ethnicity, education, and socioeco-
reflections, and deliberations that parents engage in away nomic background. This number of participants is in
from medical professionals. Clearly, although I have keeping with other studies of this methodology to allow
existing knowledge about ethical decision making in neo- gathering of sufficient experiential material to write a rich
natal intensive care, I have significant inexperience with phenomenological text (van Manen, 2012a).
the actual experience of ethical decisions from a parental Experiences of ethical decision making were elicited
perspective. As a clinician researcher, the phenomeno- by interview. In empirical phenomenological human sci-
logical reduction requires a continual reflexive effort to ence research, the interview serves the purpose of gather-
“lead back” to question, Is this indeed what the experi- ing and exploring experiential narrative material (van
ence of an ethical decision may be like for a parent? This Manen, 1990). Therefore, although the interview is
investigating of lived experience should be conducted in “unstructured,” it is clearly “oriented” to opening up the
a manner that is critical and rigorous, yet also open and lived experience through uncovering meaningful stories
tentative. and anecdotes. Timing of interviews was sensitive to the
Evidently, the notion of the reduction is quite com- situational stresses and personal preferences of the indi-
plex, articulated in a variety of ways in the philosophical vidual parents such that parents were interviewed concur-
literature. To those familiar with continental philosophy, rently and/or retrospectively to their decision-making
this is neither surprising nor necessarily problematic experiences. Most parents participated in multiple inter-
because the philosophical tradition of phenomenology is views spanning the duration of their child’s admission to
eclectic, constantly questioning and rediscovering itself the NICU, allowing revisiting of their experiences and
(see Lewis & Staehler, 2010, for a concise introduction). exploration of certain meanings and significances of their
experiential descriptions. Parents often described multi-
ple decisions that provided a broad range of varieties of
Human Science Methods
ethical decision experiences. Interviews were audiore-
A central feature of phenomenology of practice is a reli- corded and transcribed verbatim.
ance on qualitative empirical methods to gather a field of In keeping with this phenomenology of practice, ana-
descriptive evidence: lived experience descriptions, from lytic–reflective methods (thematic analysis, guided

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282 Qualitative Health Research 24(2)

existential reflection, linguistic tracing, and exegetical and situated epiphany (van Manen, 1990). Therefore,
reflection) were used to identify and reflect on variant drafts of the text were reviewed with diverse groups of
and invariant meaning aspects of the phenomenon as a health care team members (physicians, nurses, respira-
starting point for phenomenological writing (van Manen, tory therapists, dieticians, social workers) and parents of
1990). Thematic analysis involved wholistic and line-by- children who had been cared for in the NICU to ensure
line readings of transcript material attending to the mean- the descriptions and reflections resonate with lived life,
ings embedded in the text. Through guided existential triggering instants of recognition and evoking immanent
reflection, fundamental lifeworld themes were used as (subjectively felt) phenomenological evidence.
heuristic guides for reflecting on parental experiences:
lived space (spatiality), lived body (corporeality), lived
time (temporality), lived things and objects (materiality),
Ethical Issues
and lived human relation (relationality). Linguistic trac- Permission to conduct this study was obtained from the
ing involved attending to the conceptual and etymologi- university health ethics review board and appropriate
cal aspects of the language used in ethical decision administrative authorities. Strategies to diminish the pos-
making. Exegetical reflection involved the study of sibility of participant identification included use of
related and sometimes seemingly unrelated literary and pseudonyms, careful selection of anecdotal examples,
phenomenological texts. and alteration of specific information that might increase
the likelihood of identification. To avoid conflict of inter-
est between my roles as researcher and clinician, I neither
Philological Methods enrolled nor interviewed families at a time when I was
Phenomenology of practice is a textual form of qualitative involved in their care.
inquiry such that writing is closely fused to the research
process. The goals of the writing are not only to describe,
to explicate, and to question phenomena of the lifeworld
but also to evoke understandings that may be beyond the The inquiry into the phenomenon of the ethical decision
reach of propositional discourse (van Manen, 1997). In yielded the following interpretive themes around which
other words, the ambition of phenomenological writing is the research text has been composed: (a) a decision that
contact: to touch the lived meaning of a phenomenon to be was never a choice; (b) a decision as looking for a way
able to be touched by it (van Manen, 2002). out; (c) a decision as thinking and feeling oneself
Thematic statements were formulated as “figures of through the consequences; (d) a decision as indecision;
meaning” in concert with the above analytic–reflective and (e) a decision as something one falls into. These
methods to help point to possible eidetic meaning aspects themes are treated as figures of meaning that help to
of the phenomenon (van Manen, 1990). Eidetic refers to point to the manifolds of lived meaning that may relate
the unique or more invariant patterns of meaning that to the phenomenon of the ethical decision. In reading
may make a particular phenomenon distinct (“what it this phenomenological text, the reader may ask ques-
is”). These thematic statements were used to structure the tions such as the following: What may the experience of
presentation of anecdotes and research text. an ethical decision be like for a parent? What may a par-
Phenomenological anecdotes were drawn from the ent encounter in an ethical decision situation? And how
interviews to assist the reader of the research to access the may parents uniquely or commonly experience ethical
subjectivity of the experience of an ethical decision (van decisions?
Manen, 1989). Anecdotes were constructed from the
interview material and refined to attend to the subjective
rather than objective aspects of experience. No effort was
The Ethical Decision as the Decision That
made to verify whether a parent’s description of an event Was Never a Choice
was in keeping with the way things actually happened. Sometimes it is the outcome of an investigation that
The aim was simply to portray the experiential event as announces the urgency of a decision, such as a head ultra-
the parent may have felt and experienced it. Thus, the aim sound showing severe brain injury in an ill infant. Other
was to arrive at plausible descriptions of possible human times, it is the constellation of intensive therapies being
experiences. utilized in the deteriorating condition of a child that sig-
The aim of phenomenological writing is to find rigor- nals a decisional juncture. In such moments, health care
ous and rich language sensitive to a phenomenon such professionals may call on parents to consider options—
that the reader may experience heuristic questioning, the possibility of a decision. The alternatives may include
experiential richness, interpretive depth, strongly incar- initiation, limitation, or withdrawal of medical therapies.
nated meaning, reflective rigor, evocative awakening, For parents, the choice is not always seen:

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van Manen 283

The doctors kept on asking us about withdrawing care. We and even meditation. The parents are looking for evi-
felt pressured to decide, almost hounded, to take Sam off dence to clear away uncertainty.
life-support. It was as if they thought that we did not get it.
But we knew that he could be severely disabled, that his The choices were that we could keep her on the ventilator
chances were so poor. Yet, how could we kill him? How without giving her dexamethasone knowing she was going to
could we have a part in ending his life? We avoided the staff deteriorate slowly; that we could give her the dexamethasone
to avoid the discussion. We avoided coming in to see our and see where that takes us; or, that we could withdraw
son, just to avoid being confronted with the predicament of treatment. The first was not a decision for us. We did not want
having to face some kind of impossible decision. We just her to suffer. We so wanted to help her, but at what cost? I
wanted to let him have a chance. If he was to die, he would remember taking a walk with my husband after talking with
die on his own. We did not want to take his death away from the doctors. We talked about quality of life. We knew that
him. while the dexamethasone could be good for her lungs, it
could be bad for her brain. We talked about what we were
From the health care professionals’ catechizing call, “to prepared to live with. We knew that if she was severely
take Sam off life-support,” and the parents’ inability to disabled that we would be unable to handle that. We did not
respond in consideration, “how could we?” we may dis- want that for our child. We talked about what we knew and
cern that sometimes an ethical decision is experienced as what we didn’t know—the uncertainty of it all. It really felt
a choice without choice. like there was no clear right answer. And we felt like we did
The notion of choice seems to imply some degree of not have time, there was no time to make a clear decision.
Time was pressing; we almost decided to withdraw treatment.
free decision. But there is a contradiction to the power of
But we really did not want to let her go. Perhaps we were
choice: it is not fully free. To decide for others means a kind of looking for an excuse to give her the dexamethasone.
responsibility for the “other” and for the sake of the other As we were walking back, still unsure, my husband brought
experienced as a demand on “me” (Levinas, 1961/1969). up, well, what about if we ask for a head ultrasound to
As such, we could say that there is accountability to an confirm that she does not have a brain bleed? ‘Cause if she
ethical decision that emerges from the demand of respon- had had a brain bleed, we were not going to go on with it,
sibility. The decision presents weight, burden, and charge. ‘cause then we would know that there was brain injury. So we
So as the parents are being asked to make a decision for said if there is no brain bleed, we will go ahead with it. We
their child, “to take his death away from him,” we may felt that this would be a way out of having to decide.
wonder, how is this choice within their control? Is decid-
ing to take part in ending their child’s life a choice? Are As the parents try to work a way out, the sense of the
the health professionals asking too much? need for an ethical decision may be forestalled. What the
There is also a normative sense to choice: it is good, parents may look and long for is not just the raw informa-
right, or proper. When health professionals present treat- tion of how a drug, such as dexamethasone, may affect the
ments as options of choice, each treatment may be marked lungs and brain. The parents look to anticipate the inevita-
by the trace of benefit. In other words, each treatment fore- bility of an unavoidable course of action or inaction.
seeably has a potential advantage for the patient—other- The existential meanings of choice options are cru-
wise there would be no option to present. Therefore, it may cial—to cause our child suffering, to let our child go, or
be difficult to say, “No, stop, or discontinue” a therapy. to carry on with our child. So the parents wonder: What
Sometimes there is no choice option that aligns with a will life be like for our child? What will life be like for
parent’s values. The possibility of choice may be con- us? What can we live with? Looking for a way out, the
strained by religious or cultural convictions. It may also decision moment is not really experienced as a choice.
happen that an offered choice is just too different from The decision is deferred by surrendering to the “fateful”
what a parent can envision for his or her child. The deci- outcome of an investigation, the head ultrasound. Perhaps
sion to withdraw treatment may be incommensurate with the ultrasound provides the parents with a different pic-
what a parent may feel that he or she can do as a parent. ture, a hopeful situation where everything may still turn
There simply is no choice. So it may happen that in such out all right, by showing them a child who has no defini-
a moment when we think we are dealing with an ethical tive evidence of brain injury. But the ultrasound has
decision, for the parent there exists no real choice except turned into a fateful coin that is tossed to find a way out
to continue on: to let the child have a chance at life. of an impossible choice.

The Ethical Decision as Looking for a Way The Ethical Decision as Thinking and Feeling
Out Oneself Through the Consequences
There are ethical situations that seem to demand informa- In deliberating a decision, rational calculation may not
tion. The decision is not resolvable in the moment but resolve uncertainty. Instead, one may need to feel oneself
instead may require reasons, calculation, deliberation, through what is to come.

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284 Qualitative Health Research 24(2)

They told us that it would be for the best if we were to dis- We were asked to make a decision about Isaiah. We needed
continue life support. Our answer was “No.” We were just not to decide whether to carry on, or whether to stop. They told
ready. It was a shock. And we had not had time to discuss it. us that, if he survived, he would almost certainly be severely
We felt so rushed, pushed to come to a decision. They wanted impaired: never walk, never talk, and likely never see. He
an answer. We went back to our room. I was thinking, he is my would not share our world, at least in the way that we live it.
little boy. I pictured him in the isolette as I stared at the pictures Thinking of Isaiah, I thought of my other children. I remem-
of him on the table. He was with us in that room. We searched bered their faces when they were young. I thought of the
the Internet, pulled everything up on the computer on what he dreams we had for them. I thought about what continuing on
had and what the outcome could be. We looked at the worst with Isaiah would mean for them. We would have less time
of the worst given his brain injury. We asked ourselves, can for them. There would have to be sacrifices. Sacrifices that I
we handle it? It is going to be a daily-life thing for us, and if would never want my children to have to make. Still, Isaiah
that is how he is going to be, can we deal with it continuously is also my child. His face is also my child’s face!
day-in and day-out? We started talking about different home
situations and stuff—even to the point of bedroom space and What ought to be decided for Isaiah? How much is too
such—room colors, pictures, bedding. We were putting him much for Isaiah’s siblings to bear? How many challenges
at home in our thoughts. I don’t think we were deliberating are too many for any child? The ethical appeal of each
and weighing medical alternatives, it was just, can we do this?
child transcends rationality; the father is faced by the
And it was at that point, as his parents, we knew we could do
anything, that, no matter what, we could handle it. And if he
faces of all of his children.
wanted to go, he would have to go on his own. The etymology of “decision” means “to cut off” and
derives from the Latin de- caedere. Cutting, inevitably,
As the parents pass from hesitation to choice, the ethical deselects (an)other option. Each decision divides each
decision may be experienced not so much as a delibera- time, existentially located between what can and cannot
tive affair of weighing alternative benefits and burdens, be resolved, what is anticipated and unforeseen, and what
but rather an asking, “Can we do this?” is tentative and decisive (Derrida, 1999/2008). A truly
Paul Ricoeur (1950/1966) wrote, “There are no deci- ethical decision is more than a cognitive or deliberative
sions without motives” (p. 66). Motives are not simply affair. An ethical decision cuts between responsivities.
causes, instincts, or drives. Motives are in the sensible In the father’s ethical response to his children’s faces
core of the ethical decision regarding my child: the child lies a deep sense of responsibility. He knows himself to
with hair that has never been brushed; the child with skin be responsively responsible for Isaiah, and he is also
that has not seen the sun; the child who, although being responsible for all of his other children. The responsibil-
marked by profound illness and scared by medical inter- ity does not originate from himself but from the others:
ventions, is still innocent to the parent. The decision only his children. Consequently, the significance of the deci-
has sense, only has meaning, in relation to the child as my sion may be felt in the experience of being held in indeci-
child. As such, the answer to “Can or should we do this?” sion: the father cannot satisfy the demands of responsibility
may not simply be a response to a question of feasibility. for all his children at the same time. Perhaps all the father
Rather, the answer involves feeling the weight of the can responsively and responsibly do is defer the decision
decision “day-in and day-out” for this child. The eidetic as indecision, to endure the indecision.
meaning of the ethical decision is found in the neverend-
ing experience of the appeal of this child’s being and this The Ethical Decision as Something One Falls
child’s face.
Feeling oneself through the consequences of an ethical
decision may result in consenting to the appeal: “putting A difficult decision may haunt the parent and refuse to
him at home in our thoughts.” Consent is not simply the settle:
outcome of a deliberated judgment. Consent is in “the act
of the will which acquiesces to a necessity” (Ricoeur, I find myself coming back to the decision. I go to brush my
1950/1966, p. 341). As the parent feels him- or herself teeth, and I find myself thinking about it. It is like a mood
through the daily traumas of the consequences, an initial that does not seem to go away. Even though I made my
decision. I still think of it as not closed, not finished, not
decision may unravel from what was initially perceived
done. I still see it as a possibility. This morning we were
as an option. eating our breakfast, but I just found myself distracted. Their
conversation seemed to interrupt me as some kind of
The Ethical Decision as Indecision deliberation goes on and on. Really, whatever activity I am
caught up in—eating, drinking, driving, whatever—I am
The decision moment may be experienced as an ethical still in this moment of decision. It is exhausting but I am just
encounter that places the parent in a predicament of not ready to accept my decision. To remain decided. I am,
impossible responsibility. and I am not, where I need to be. I am back there beside the

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van Manen 285

incubator looking at her. I am back there looking at her face. particular child. Nor does it resolve the health profes-
I am reliving the discussions, reliving the decision. I am sional’s need for consent from parents to support a deci-
revisiting the decision as if unmaking it. It is like the decision sion that they wish to pursue. Rather, understanding an
is a place that I cannot get settled in but also cannot leave ethical decision as a nondecison may prompt profession-
als to reconsider their approach to a particular moral–
ethical situation.
Here is an NICU situation where a mother still seems Other decisions may be experienced by parents as
to live in indecision: distracted, preoccupied, and torn. problems in need of deliberation and information. In such
The decision will not settle. Still, when a child continues situations, professionals clearly need to meet the infor-
to get worse and an ethical decision is forced, we may mational needs of parents in a caring and compassionate
wonder if the decision—uncalculable and unthinkable— way. These situations require not only a “thinking
may sometimes be resolved not by thinking but rather by through” but also a “feeling through.” Resolution requires
falling into it or by taking a sudden leap: not just the weighing of benefits and burdens but also the
resolve from parents to ask themselves: What do we feel
I do not know at what moment it was, but at some point, I
comfortable with? Does the decision feel right? And ulti-
stopped hearing the risks of transplantation, and I finally
knew what we had to do. We had been struggling, trying to mately, can we live with it? This manner of proceeding
understand what we should decide. We were going through does not necessarily position an ethical decision away
the process again—how they would qualify her for listing, from the “best interests of the child.” Instead, it may situ-
what being listed would mean, the risks of transplantation, ate the decision relationally in the parent’s encounter with
the benefits—all of it. I was listening to what they were his or her child as the parent asks: What ought “I” to do
saying when I remember suddenly feeling settled. It was for my child? Recognizing that reasoning or calculation
done, completed. I was moving on. The decision between may not resolve uncertainty may also call into question
palliative care and heart transplantation was made. I had to how we support such parents and resolve decisions that
give her the chance of transplantation no matter the risks, no need to be made. The practitioner should recognize that it
matter what she may have to go through, even if she died on
is not only information that informs a decision.
the waiting list. I had to do that as her mother. I went back to
Although contemporary health law may dictate that
her bedside after the meeting and sat there, looking in her
eyes, seeing her face. She was my daughter needing a decisions be made in the “best interests of the child,” we
transplant. need to be aware of the subtle and complex reality of ethi-
cal decision making that may involve considerations
It is at the moment when a decision refuses to settle that beyond the child: How are the parents to live their own
suddenly the unexpected may happen. One falls into a lives? What can they bear? What are the effects of deci-
decision that suddenly seems utterly decisive and final. sions on other important people in their lives, their other
children and family members? An ethical decision deals
with responsibilities not only to the child but also to the
Discussion self as an “other” and others as “other.” Such an under-
This study shows how parents may experience ethical standing, while illuminating the reality of ethical decision
decisions in a complex variety of ways. For some parents, making, also highlights the importance for ongoing
there are ethical decisions that are not quite decisions. research into the moral–ethical implications of various
And if there is no perceived choice, the health care pro- health care practices.
fessional’s need for a decision may turn into a moment If in the end a parent cannot settle into a decision—
when the parent can only express his or her wants and necessitating the appeal to technology, nature, or fate—
desires for his or her child. So although the decision may the health professional may find him- or herself drawn
come from the parent, owned as “my” decision, we may deeper into the ethics of the decision. Such situations of
wonder if the decision is truly a decision at all, or rather indecision are likely to become more common as the
simply a documentation of the wishes of a parent for his medical landscape changes, incorporating advanced tech-
or her child. nologies, often in the context of differing or conflicting
Of course, from a rational perspective, this kind of cultural values, and so forth. Situations of indecision
“nondecision” or “indecision” can be seen as a decision emphasize the need for a collaborative, or even at times a
as well. But the point is that health professionals need to delegated decision making whereby the professional
understand that this kind of nondecision decision is a pos- assumes a greater role (Madrigal et al., 2012).
sible situation that parents may encounter. By no means Collaborative and delegated decision making may also
does this acknowledgment resolve the potential moral benefit from policy-level deliberations as resources
impasse or distress that may occur when parents and pro- become limited even in highly technologized health care
fessionals truly disagree on what is “good” or “best” for a systems.

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286 Qualitative Health Research 24(2)

Insights into parental experiences of decision making Arad, I., Braunstein, R., & Netzer, D. (2008). Parental religious
need not lead to generalization but instead an acknowl- affiliation and survival of premature infants with severe
edgment that different parents may experience the intraventricular hemorrhage. Journal of Perinatology, 28,
moments of ethical decisions contingently in different 361–367. doi:10.1038/jp.2008
Beauchamp, T. L., & Childress, J. F. (2001). Principles of bio-
ways. And just as an ethical decision may be a complex
medical ethics (5th ed.). New York: Oxford University
predicament for the parent, much is also demanded from
the health professional confronted with the responsibility Boss, R. D., Hutton, N., Donohue, P. K., & Arnold, R. M.
of helping a family navigate difficult life predicaments (2009). Neonatologist training to guide family decision
(Boss, Hutton, Donohue, & Arnold, 2009). Additional making for critically ill infants. Archives of Pediatrics &
research is needed to gain insight into the experiences of Adolescent Medicine, 163, 783–788. doi:10.1001/archpe-
health professionals who support patients and families diatrics.2009.155
faced with difficult decisions. Boss, R. D., Hutton, N., Sulpar, L. J., West, A. M., & Donohue,
P. K. (2008). Values parents apply to decision-making
regarding delivery room resuscitation for high-risk new-
Conclusions borns. Pediatrics, 122, 583–589. doi:10.1542/peds.2007-
Although ethical decision making tends to be understood Brinchmann, B. S., Førde, R., & Nortvedt, P. (2002). What
theoretically as a rational, emotional, and deliberative matters to the parents? A qualitative study of parents’
process based on the patient’s best interests, the actual experiences with life-and-death decisions concerning their
lived experience of this event may be more ineffable and premature infants. Nursing Ethics, 9, 388–404. doi:10.119
difficult to grasp. Decision experiences may not lend 1/0969733002ne523oa
themselves to be conceptually simplified for generaliza- Brosig, C. L., Pierucci, R. L., Kupst, M. J., & Leuthner, S.
tion nor be fitted into a procedural schema or resolution R. (2007). Infant end-of-life care: The parents’ perspec-
framework. Instead, health practitioners may do well to tive. Journal of Perinatology, 27, 510–516. doi:10.1038/
develop critical yet nuanced understandings of the possi-
Buchanan, A. E., & Brock, D. W. (1989). Deciding for others:
ble experiences that parents may undergo in an ethical
The ethics of surrogate decision making. Cambridge, UK:
decision in the NICU. Cambridge University Press.
Carnevale, F. A., Canoui, P., Cremer, R., Farrell, C., Doussau,
Acknowledgments A., Seguin, M. J., . . .Lacroix, J. (2007). Parental involve-
I am very grateful to the parents who generously shared their ment in treatment decisions regarding their critically ill
experiences for this study. I also thank Wendy Austin, Paul child: A comparative study of France and Quebec. Pediatric
Byrne, Catherine Adams, Po-Yin Cheung, and the staff of the Critical Care Medicine, 8, 337–342. doi:10.1097/01.
John Dossetor Health Ethics Centre for their ongoing guidance PCC.0000269399.47060.6D
and support. da Costa, D. E., Ghazal, H., & Al Khusaiby, S. (2002). Do not
resuscitate orders and ethical decisions in a neonatal inten-
sive care unit in a Muslim community. Archives of Disease
Declaration of Conflicting Interests
in Childhood Fetal & Neonatal Edition, 86, F115–F119.
The author declared no potential conflicts of interest with doi:10.1136/fn/86.2.F115
respect to the research, authorship, and/or publication of this Derrida, J. (2008). The gift of death and literature in secret.
article. (D. Wills, Trans.). Chicago: University of Chicago Press.
(Original work published 1999).
Funding Doron, M. W., Veness-Meehan, K. A., Margolis, L. H.,
The author disclosed receipt of the following financial support Holoman, E. M., & Stiles, A. D. (1998). Delivery room
for the research, authorship, and/or publication of this article: resuscitation decisions for extremely premature infants.
Canadian Institute for Health Research–Frederick Banting and Pediatrics, 102, 574–582. doi:10.1542/peds.102.3.574
Einarsdóttir, J. (2009). Emotional experts: Parents’ views on
Charles Best Canada Graduate Scholarship [201110GSD].
end-of-life decisions for preterm infants in Iceland. Medical
Anthropology Quarterly, 23, 34–50. doi:10.1111/j.1548-
References 1387.2009.01036.x
Abel-Boone, H., Dokecki, P. R., & Smith, M. S. (1989). Parent Kavanaugh, K., Savage, T., Kilpatrick, S., Kimura, R.,
and health care provider communication and decision mak- & Hershberger, P. (2005). Life support decisions for
ing in the intensive care nursery. Child Health Care, 18, extremely premature infants: Report of a pilot study.
133–141. doi:10.1207/s15326888chc1803_2 Journal of Pediatric Nursing, 20, 347–359. doi:10.1016/j.
Alderson, P., Hawthorne, J., & Killen, M. (2006). Parents’ pedn.2005.03.006
experiences of sharing neonatal information and decisions: Kirschbaum, M. S. (1996). Life support decisions for children:
Consent, cost and risk. Social Science & Medicine, 62, What do parents value? Advances in Nursing Science, 19,
1319–1329. doi:10.1016/j.socscimed.2005.07.035 51–71.

Downloaded from at UNIVERSITY OF ALBERTA LIBRARY on May 2, 2014

van Manen 287

Ladd, R. E., & Mercurio, M. R. (2003). Deciding for neo- care. Journal of Advanced Nursing, 15, 712–719.
nates: Whose authority, whose interests? Seminars doi:10.1111/j.1365-2648.1990.tb01895.x
in Perinatology, 27, 488–494. doi:10.1053/j.semperi. Pinch, W. J., & Spielman, M. L. (1993). Parental per-
2003.10.008 ceptions of ethical issues post-NICU discharge.
Leuthner, S. R. (2001). Decisions regarding resuscitation of Western Journal of Nursing Research, 15, 422–438.
the extremely premature infant and models of best inter- doi:10.1177/019394599301500403
est. Journal of Perinatology, 21, 193–198. doi:10.1038/ Ricoeur, P. (1966). Freedom and nature: The voluntary and the involuntary. (E. V. Kohák, Trans.). Evanston, IL:
Levinas, E. (1969). Totality and infinity: An essay on exteriority. Northwestern University Press. (Original work published
(A. Lingis, Trans.). Pittsburgh, PA: Duquesne University 1950).
Press. (Original work published 1961). van Manen, M. (1989). By the light of anecdote. Phenomenology
Lewis, M., & Staehler, T. (2010). Phenomenology: an & Pedagogy, 7, 232–253.
Introduction. London: Continuum International. van Manen, M. (1990). Researching lived experience: Human
Madrigal, V. N., Carroll, K. W., Hexem, K. R., Faerber, J. A., science for an action sensitive pedagogy. London, ON,
Morrison, W. E., & Feudtner, C. (2012). Parental decision- Canada: Althouse Press.
making preferences in the pediatric intensive care unit. van Manen, M. (1997). From meaning to method.
Critical Care Medicine, 40, 2876–2882. doi:10.1097/ Qualitative Health Research, 7, 345–369.
CCM.0b013e31825b9151 doi:10.1177/104973239700700303
McHaffie, H. E. (2001). Crucial decisions at the beginning of van Manen, M. (2002). Writing in the dark: Phenomenological
life: Parents’ experiences of treatment withdrawal from studies in interpretive inquiry. London, ON, Canada:
infants. Abingdon, UK: Radcliffe Medical Press. Althouse Press.
Merleau-Ponty, M. (1962). Phenomenology of perception. van Manen, M. (2007). Phenomenology of practice.
(C. Smith, Trans.). New York: Routledge & Kegan Paul. Phenomenology & Practice, 1, 11–30.
(Original work published 1945). van Manen, M. A. (2012a). Carrying: Parental experience
Meyer, E. C., Burns, J. P., Griffith, J. L., & Truog, R. D. (2002). of the hospital transfer of their baby. Qualitative Health
Parental perspectives on end-of-life care in the pediatric Research, 22, 199–211. doi:10.1177/1049732311420447
intensive care unit. Critical Care Medicine, 30, 226–231. van Manen, M. A. (2012b). Technics of touch in the neo-
Meyer, E. C., Ritholz, M. D., Burns, J. P., & Truog, R. D. natal intensive care. Medical Humanities, 38, 91–96.
(2006). Improving the quality of end-of-life care in the doi:10.1136/medhum-2012-010204
pediatric intensive care unit: Parents’ priorities and rec- van Manen, M. A. (2012c). Ethical responsivity and pediatric
ommendations. Pediatrics, 117, 649–657. doi:10.1542/ parental pedagogy. Phenomenology & Practice, 6, 5–17.
peds.2005-0144 Retrieved from
Miller, G. (2007). Extreme prematurity: Practices, bioethics, view/100
and the law. New York: Cambridge University Press. Vandvik, I. H., & Førde, R. (2000). Ethical issues in parental
Moseley, K. L., Church, A., Hempel, B., Yuan, H., Goold, S. decision-making. An interview study of mothers of children
D., & Freed, G. L. (2004). End-of-life choices for African- with hypoplastic left heart syndrome. Acta Paediatrica, 89,
American and White infants in a neonatal intensive-care 1129–1133.
unit: A pilot study. Journal of the National Medical Vermeulen, E. (2004). Dealing with doubt: Making deci-
Association, 96, 933–937. sions in a neonatal ward in The Netherlands. Social
Orfali, K. (2004). Parental role in medical decision-making: Science & Medicine, 59, 2071–2085. doi:10.1016/j.socs-
Fact or fiction? A comparative study of ethical dilemmas in cimed.2004.03.010
French and American neonatal intensive care units. Social Waldenfels, B. (2011). Phenomenology of the alien: Basic
Science & Medicine, 58, 2009–2022. doi:10.1016/S0277- concepts. (T. Stähler & A. Kozin, Trans.). Evanston, IL:
9536(03)00406-4 Northwestern University Press. (Original work published
Payot, A., Gendron, S., Lefebvre, F., & Doucet, H. (2007). 2006).
Deciding to resuscitate extremely premature babies: How Wiegand, D. (2008). In their own time: The family experi-
do parents and neonatologists engage in the decision? ence during the process of withdrawal of life-sustaining
Social Science & Medicine, 64, 1487–1500. doi:10.1016/j. therapy. Journal of Palliative Medicine, 11, 1115–1121.
socscimed.2006.11.016 doi:10.1089/jpm.2008.0015
Pepper, D., Rempel, G., Austin, W., Ceci, C., & Hendson, Wocial, L. D. (2000). Life support decisions involving imper-
L. (2012). More than information: A qualitative study iled infants. Journal of Perinatal and Neonatal Nursing,
of parents’ perspectives on neonatal intensive care at the 14(2), 73–86.
extremes of prematurity. Advances in Neonatal Care, 12,
303–309. doi:10.1097/ANC.0b013e318265b3d5
Author Biography
Pinch, W. J., & Spielman, M. L. (1989). Parental voices in the
sea of neonatal ethical dilemmas. Issues in Comprehensive Michael A. van Manen, MD, FRCPC(Peds, NICU,CIP), PhD,
Pediatric Nursing, 12, 423–435. is a clinician researcher in Neonatal-Perinatal Medicine,
Pinch, W. J., & Spielman, M. L. (1990). The parents’ per- Department of Pediatrics, University of Alberta, Edmonton,
spective: Ethical decision-making in neonatal intensive Alberta, Canada.

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