We will argue here that after more than 30 years of talk, theory, and
clinical practice, we bioethicists still know far too little about what
patients, subjects, and healthcare professionals are up to, morally.1
Both of the authors emerged from graduate school
at the time bioethics was being established as a discipline. One of us has
worked in medical settings ever since. The other has taught in liberal
arts colleges and worked in a variety of nonprofit healthcare delivery
organizations. Both of us wrote cautionary essays as the new field began
to emerge. Schenck was the lead author for a review of the
Encyclopedia of Bioethics with Charles Reynolds and Glenn Graber
in the Religious Studies Review 1981;7(1):5–14. With his
coauthors, he argued that, “Rather than utilizing the awareness
reflected so scrupulously in the Encyclopedia of the diverse
resources for reflection on ethical matters offered by, for example,
religious traditions and the social sciences, ethicists continue to return
to the unreconstructed canonical works of Kant and Mill time and time
again.” And further, “Another missed opportunity [in the
Encyclopedia and in the field of bioethics] is the failure
to grasp the intricate rootedness of values and principles in specific
social contexts, e.g., the professional practice of medicine.” Which
led to the plea, “Can we learn in bioethics to be more sensitive to
the context in which ethical decisions must be made, with particular
attention to those who are deciding?” Churchill wrote about
“The Ethicist as Stranger” [rather than moral
expert] in The Hastings Center Report 1978;8(6):13–5;
and “Bioethical Reductionism” in Man and Medicine
1980;5(4):229–2 in a similar vein, arguing that “standard
problems of bioethical analysis will not lead us to insights about human
beings if they are isolated from the moral sensibilities that first shaped
them as problems. If the task of bioethics is compressed into the analysis
of the goodness or rightness of actions at the decisional edge, the
leverage it might have on the moral life of practitioners and patients
will be forfeited.”
Those concerns
expressed in our early essays remain with us to this day—and have
been dramatically amplified by our participation in, and observation of,
30 years of bioethical practice and reflection. In this way our
experiences—though vastly different in other ways—share
something with those of pediatric neurologist John Freeman. The quotation
on the opening page of this essay is taken from Freeman J. On learning
humility: A thirty-year journey. The Hastings Center Report
2004;34(3):16.
Bioethics is still near the beginning in grasping
what it means to understand, much less to honor fully, the moral power and
perspicacity of those bioethics is designed to serve. This is, of course,
a serious charge, but one we will endeavor to show has merit. However, we
want to be clear from the start that we do not gainsay the important work
that has been done in and through the influence of bioethics, both as a
field of practical engagement and as a cultural movement, in improving how
healthcare is delivered and how human subjects are treated. Thirty or 40
years—depending on how one marks the beginning point—is a very
short time, and it is hard to imagine that wholesale changes, all of them
in the right direction, could be the outcome for a field this young.
2 See Jonsen AR. The Birth of Bioethics.
New York: Oxford University Press; 1998.
Hence, we do not intend
the title, “One Cheer for Bioethics,” as a wholesale
indictment, but as an indication that there is a great deal of work yet to
be done, and that following the currently dominant direction of the field
is not likely to get us there. Our aim is to indicate just where future
work should be focused, and to do so we will need to be critical of some
of the preoccupations of the last three decades.
Further, we will argue that it is not just on the fringes or in the
places where bioethics hasn't made inroads into medical practice that
the moral perspectives of patients and practitioners elude us. It is,
arguably and to the contrary, right where bioethics has made its most
dramatic impacts on institutional policy and practice that a different
approach is needed: in appreciating and understanding issues involved in
death and dying and in policies and procedures designed to establish and
safeguard informed consent. We will examine each of these areas in detail.
Our aim here is to note and describe just where it is that patients and
subjects and healthcare providers reflect, decide, and act in ways that
bioethicists do not expect and too seldom appreciate. In the short space
of this article we can do little more than draw a sketch, but we hope it
is one sufficiently clear that the outline for a different approach to
bioethics will be evident.
One clue as to why bioethics is sometimes, perhaps often, unhelpful
lies in the observation that many people are morally wise though not
ethically learned. By “not ethically learned,” we mean that
they don't have formal training in ethics; they know nothing of Kant
and Mill, Kohlberg and Gilligan, or Beauchamp and Childress, much less
possess Ph.D. training in ethics. Their moral wisdom often shows up in
hospitals and clinics as people become patients or research subjects and
face major decisions about their care or the care of family members. What
is this sort of moral wisdom? How do we account for it? We are confident
that many of our readers have observed this very thing, though without,
perhaps, giving it its due weight. There is a great deal to learn from
these persons—persons who are “ordinary” only in the
sense that they lack the training and credentials of a professional
expert, but who are not, to be sure, ordinary in other ways.
To put it another way, we have found that the things that make ethical
decisions challenging are not attributable to the difficulties in
mastering the writings of moral experts. When dialogue goes sour or
decisions go wrong, it seems it is not because ethics as an
activity requires highly specialized knowledge or recondite theories
available only to a select few. Ethical problems that are chronic,
particularly vexing, or that seem insoluble may signal that we have not
paid enough attention to the groundwork of moral encounter—and that
what is needed is practical wisdom, not more and better theories. And here
our patients may be far more reliable guides than we have yet
realized.
We will proceed in the following way: We first focus closely on two
sets of examples to establish our minimum contention. Following that, we
sketch alternative approaches drawing from a wide range of philosophical,
literary, and ethnographic literature to elucidate the phenomenon of
patient and practitioner perceptions of moral significance that elude the
customary approach. As we close the essay we suggest that attending to
what we call “common moral wisdom” would go a long way toward
countering the hegemony of outmoded Enlightenment understandings of human
persons as rational decisionmakers and as moral beings.
Bioethical Approaches to Death and Dying:
Defining and Redefining the Issues
A few years ago one of us (LRC) joined an interdisciplinary group to
make a film about end-of-life decisions.3
Churchill L, Doron M, Rothman E, Yarger L. Those Who Stay
Behind. Fanlight Productions; 1999.
The aim was to help
families who serve as surrogates for a decisional incompetent relative.
For example, spouses routinely have to make or approve medical choices for
their incapacitated partner, and children are sometimes pressed into
service to select or confirm treatment options for one or both parents.
Such decisions can span a wide range, but are typically focused on how
aggressive to be in seeking an improvement in the patient's condition
in the face of uncertainty and less than fully effective treatments.
Whether to enroll the patient in a clinical trial that might offer some
hope for improvement, whether to readmit the patient to the Intensive Care
Unit (ICU), whether to write a DNR (Do Not Resuscitate) order, or whether
to place or remove a feeding tube or a respirator are typical
examples.
Making such decisions for others can be a daunting responsibility,
especially when the patient is severely or terminally ill. There is, of
course, a substantial bioethics and legal literature on how this should be
done, but our aim was different. Rather than consulting the professional
experts, we were seeking to make a film that would provide some guidance
and support from the experiential experts—people who had been in
these situations as families rather than as professionals. Our tentative
working title was Families Helping Families, and the overall
design was to ask family members who had recently acted as surrogate
decisionmakers for their relatives to speak on film about how they had
approached the problems they faced and what resources they drew from and,
in general, to share their experiences with those who are currently
burdened with this task.
To select the families for the film and to help us better understand
the issues, we held three focus group meetings with persons who had had a
death in their family within the past year and who had served in a
surrogate decisionmaking role. A local hospice helped to identify many,
but not all, of the focus group participants. By contacting the majority
of focus group participants through hospice we reasoned that we would
engage families that had already thought through some of the tough issues
about aggressive treatments and had weighed these in comparison with the
hospice focus on symptom management, patient and family control, and
emotional/spiritual needs. We were also mindful of the results of the
recently released SUPPORT study, which showed how difficult it can be to
resist aggressive interventions in tertiary care hospitals.4
See, for example, The SUPPORT Principal
Investigators. A controlled trial to improve care for seriously ill
hospitalized patients. JAMA 1995;274:1591–8; Lynn J, Teno
JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al. Perceptions by
family members of the dying experience of older and seriously ill
patients. Annals of Internal Medicine
1997;126:97–106.
We held the focus groups on successive Saturday mornings. We
anticipated that we would learn new content from these families, but we
were very clear in our assumption about the kinds of issues that would
frame our discussion. And we did learn, but in a more radical way than we
had imagined. What the first focus group revealed, and which persisted
throughout each of the Saturday morning discussions, is that the issues
were not what we had thought. What we considered the main problems in fact
were remote and tangential to the central themes of the family
members' comments and stories. The big issues, from their
perspective, were not whether to withdraw the feeding tube or to readmit
to the ICU or have the risky surgery. The big questions were things like:
“How can Mom be reconciled with her estranged stepdaughter?”
Or “Has Dad made his peace with God, is he ‘ready’ to
die?” One participant, speaking of her late husband, said: “I
knew what he wanted; my problem was getting the children to accept
it.” These types of considerations formed the core of their
surrogate decisionmaking experiences. Of course they were concerned with
doing what was appropriate medically, but it was clear that they did not
couch this responsibility in terms of medical or bioethical idioms. Their
primary language was personal, familial, existential, and sometimes
spiritual.
The focus of the film-making process shifted entirely following these
focus groups, as we began to understand that the critical issues were ones
of how families become reconciled, construct a meaningful narrative, do
the spiritual work of care, and provide appropriate rituals of exit.
Medical decisions and bioethical quandaries were all secondary to the
larger issues of how to make meaningful choices in the face of
uncertainty, suffering, and loss. Ethics at the edges of life, insofar as
it involves surrogate decisionmaking, has to do primarily with whether to
call the sister in California for a possible bedside reunion or the church
pastor for a final communion, or if, when, and how to tell one's
father a final story of gratitude, or give one's dying mother
permission to leave. Readmission to the ICU or placement of the feeding
tube may well ride on whether it facilitates or prohibits such ritual
enactments. This consideration is often of more importance than the
medical focus on the patient's electrolytes or APACHE score, or the
usual bioethical focus on the many ways to calculate “good” or
“best” for another person. Indeed, the theoretical soundness
of surrogate decisions regarding medical interventions was remote to the
concerns we heard expressed and should be recognized as a bioethical
priority, but not a patient or family concern.
Bioethical Approaches to Death and Dying:
The Story of Two Deaths
In one of those curious turns we invoke fate to “explain,”
one of us (DS) recently was present in an ER as decisions about
end-of-life care were being made for his father-in-law, in circumstances
that were eerily similar to the ones involving his father at another
hospital nearly 35 years ago. This rather startling coincidence provides a
view of “death and dying issues” before and after the advent
of bioethics as practice and institution. It shows one of the greater
impacts of bioethics on medical culture—and yet it also shows, we
believe, that this impact has not yet penetrated to the most significant
level of moral experience for patients and families. We will change the
narrating voice to first person at this juncture to give the story its
full sway.
Let's begin with a quick sketch of the relevant facts: Both men,
my father and father-in-law, had been transported from their homes by
ambulance after cerebral hemorrhages. Both men were treated initially in
the ER of their respective hospitals. Both men were accompanied to the
hospital by their spouses, and both had at least one child present. In
both cases, the “decision” to be made was whether to put the
patient on a ventilator or not. And here the similarities end.
When my father went into the ER in 1970, he was 43 years old, and no
papers had been prepared ahead of time—no living will, no DNR, no
healthcare power-of-attorney. For my 73-year-old father-in-law in 2004,
all the papers had been prepared. In 1970 my father died, after failed
surgical intervention, alone in a small room in one of the back and
out-of-the-way wings of the upper floors of the community hospital. In
2004 my father-in-law died in the same room in the ER he had initially
come in to, surrounded by family—his wife, youngest daughter, a
grandson, and myself.
In 1970, the two neurosurgeons came out of the OR to speak with my
mother and me who were awaiting news. They had come out only 20 minutes
after going in—clearly the news would be bad. One of the
neurosurgeons was a local physician who had been on call that night at the
hospital. There had been a horrible bus accident, and he had been up all
night working on patient after patient. The other neurosurgeon was my
father's cousin and a nationally acclaimed leader in his specialty.
He had driven over very early that morning from a nearby and very
prestigious university teaching hospital. Outside the OR, standing in the
hall with many people walking by, the local doctor said: “There is
nothing we could do. His brain is completely destroyed. I don't think
he'll ever recover—but we can't be sure. So you have to
decide about a ventilator.” The visiting doctor gasped in horror and
hurriedly asked if there weren't a more private place we could talk.
The local doctor found us a dressing room used by residents, little more
than a closet, and left us there with our kinsman. He explained things
more fully and more carefully, and left us to make our
“decision.” Even for a stunned 18-year-old son and a
40-year-old wife in total shock, the “decision” took no time
at all—no vent.
In 2004, the ER physician carefully explained the symptoms first to my
mother-in-law and then to me. He reviewed the patient's health and
the history of the incident. He spoke of the virtual certainty of death
within 24 hours. He then outlined three different levels of aggressiveness
for possible interventions. And he made—clearly, but with
deference—his own recommendation that the least possible
intervention be done. Reference was made to the DNR order and the other
legal documents. For the wife and daughter, there was no decision—it
was simply a reality that death was now here. I communicated this
succinctly to the ER doctor and he accepted it with a brief statement of
condolence. After that nurses came in and out to see what was
needed—but mostly we were left alone in the room for the next eight
hours until the patient died. After the death, we remained in the room for
about 30 minutes saying goodbye. The entire staff displayed a marked
sensitivity, even tenderness, about the approaching death throughout our
time in the hospital. There was a clear recognition, shared with and
communicated to the family, that something immensely powerful, even
sacred, was taking place here. It should also be noted that this dying
took place in a small rural hospital in South Carolina—a measure of
just how far-reaching the changes in medical culture surrounding dying
have gone.
There is no doubt in my mind that the differences in care here owe
much to the bioethical focus on end-of-life issues over the past 30 years.
Just here is where the decisional considerations that ethicists have
rightly focused on for so long have come, albeit indirectly, into play.
The bioethical stress away from paternalism and toward shared
decisionmaking, the use of advance directives, and the advent of greater
skill and comfort in dealing with terminal illness have set the context
for a different kind of medical management of death, as these two
experiences vividly illustrate. And yet the “big decision,” to
vent or no, was made in both cases virtually instantly, with no
recognizable “decision process.” It was more a matter of
recognition—almost of perception—than a matter of decision.
This is death that is coming: Yes it is.
What distinguished the two cases had nothing to do with the “big
decision”—it had everything to do with the shame and sense of
failure around death and the unwillingness to be in the presence of the
dying in 1970, and the relative openness to death and dying in 2004. And
here bioethics has only scratched the surface.
∗∗∗
We, the authors, are aware, of course, that in many, many cases the
“decision” that was hardly a decision in these two instances
can loom very large indeed. And yet we would still argue that bioethicists
would likely have, in both these cases, been looking almost exclusively at
the “decision” and hence would have been looking at the moral
feature of this situation that mattered least. Another way to put it would
be: It is “quality-of-death concerns”—not
“end-of-life issues”—that are most significant to the
dying and their families. The phrase “end-of-life issues” (and
its assumption that this is fundamentally a phenomenon best understood as
points for decisions) reflects the bias of the medical
profession—one which bioethics, for the most part, continues to
accept.
For both of us, many years of involvement with patients in hospital
and hospice settings in varying capacities—including 10 years of
volunteer hospice patient care (DS)—have reinforced this learning.
Sometimes patients took no time at all to “decide” that they
wanted nothing to do with a feeding tube—so quick that we needed to
lean down into their faces to be sure that they knew what that refusal
meant. Invariably, they did. They knew their death was at hand and they
wanted to face it. Again, a matter of recognition, not decision. And there
were the patients who were ready to go, but were held back by families who
couldn't face the death. And families who were ready for the relief
of death, but were still caring for parents who hadn't yet finished
saying good-bye. There was the very pious man, not sure he was saved and
afraid to die and face the Judgment, who hung on for weeks in a coma.
There were those in the hospital who had to get home to die surrounded by
family—and those in crowded rooms who had to wait for everyone
present to leave to die in peaceful solitude. In all these instances, and
scores more, it was the quality of the departure that was central.
To put our point another way, and echoing our thesis in the filmmaking
scenario depicted above, what families need help with in many end-of-life
situations is not a buffing up of their decisional capacities, but
compassionate attention to how the events unfolding before them can be
made meaningful or bearable. This is ethics, not on the decisional edge of
big choices, but in the full human sense of how people get around their
world and orient themselves in life-changing situations. If bioethics does
not attend to this, it has missed a great deal.
Bioethical Approaches to Informed Consent:
Experimental Maternal–Fetal Surgery
During 2000–2001 12 couples were interviewed to better
understand their reasons for seeking enrollment in a clinical trial and
their comprehension of the trial's design, risks, and potential for
benefit. One of us was involved in the interviewing, and both of us have
been involved in reading and interpreting the transcripts of these
interviews.5
A full accounting of the
research on parental perceptions of maternal–fetal surgery for spina
bifida from which we draw here can be found in Rothschild B, Estroff S,
and Churchill L. The cultural calculus of consent. Clinical Obstetrics
and Gynecology 2005;48(3): in press. Rothschild served as the
principal investigator for the study, which was supported in part by the
Greenwall Foundation.
The trial was a feasibility study of the
safety and efficacy of prenatal closure of the back in fetuses diagnosed
with spina bifida. The hope was that closing the lesion before birth,
rather than postnatally, would lessen or reduce hydrocephaly and thereby
reduce or eliminate the need for shunts. Shunts often become infected or
occluded, requiring additional operative procedures to repair or replace
them. Reducing or possibly even eliminating this problem, if it could be
achieved, would be a significant gain.
Yet, since its inception, surgery that requires imposing risk on the
woman for the possible benefit of the fetus has been controversial, and it
has been justified mainly in situations in which the fetus had a lethal
anomaly. By contrast, maternal–fetal surgery for spina bifida
involves intervening for a nonlethal anomaly. It also incurs substantial
risk to both the otherwise healthy and viable fetus and the woman, and
therefore involves a different risk/benefit calculus.
The couples we interviewed had been referred to the academic medical
center by their local physicians, and they typically arrived filled with
apprehension and hope. They spent two days in educational and counseling
sessions designed to inform them of the risks and potential benefits of
the experimental procedure, as well as the developmental prognosis for
spina bifida and the resources available for dealing with the medical and
social problems that children with spina bifida typically encounter.
The local Institutional Review Board (IRB) and the Principal
Investigator (PI) for this study requested an ethics monitoring process in
an effort to ensure that these couples understood that the procedure was
experimental, that they understood its risks and the potential benefits of
participating, and also to ensure that a free and authentic informed
consent was obtained. The ethics consultants formulated their task not
only as consent monitors, but also as researchers and obtained IRB
permission to record and analyze the taped interviews they conducted. Our
comments below come directly from these interviews. Although our primary
aim as IRB monitors was to ensure a valid consent, our primary research
aim was to learn how these couples decided whether to participate in this
prenatal research—that is, to map the moral contours of their
decisions. Most of these couples were young, roughly mid- to late 20s,
and, for most of them, the decision about enrolling in this clinical trial
was one of the most momentous and complex decisions of their lives to
date.
One of the most striking findings from our interviews is that moral
decisionmaking was seen as a search for overall coherence and integrity in
life, not just a right action for this occasion. This is illustrated by
the quote below from one of the women as she explained her overall
approach to the decision: “I believe there's a reason for
everything, whether it's a higher power, whether it's me being
stubborn and trying to be true to myself or to my beliefs. But something
happens for a reason. Why does it happen to us? I don't know. I truly
don't. But it's my job to get through it the best I can and, you
know, with Jim's help, maintain our household, our lifestyle, and
family and my sanity.” Other couples gave similar responses.
In the search for overall coherence, the couples looked for signs and
signals to interpret both their situation and their choices in a wide
range of places, many of them surprising and unpredictable. For example,
one young woman gave the following account: “This may sound weird to
you, but since my grandfather passed away, I've felt his presence
like he's watching over us, and in my heart and in my mind, I felt
he's going to be watching over me if I have this procedure done, and
he's not going to let anything happen.”
Another woman reflected on how her decision was grounded in her
religious beliefs and indicated how something that would have otherwise
been insignificant became a sign of how to proceed, thereby carrying
special meaning. “Our first experience, this was really kind of
interesting, I have no problem saying I am a Christian. I believe in the
Bible. You know, that's where we're at. Friday when we found
this out and we're having all these horrible visions in our
minds…. We're questioning, ‘Gee, if we bring a child
into the world with this horrible ailment, you know, life is going to be
horrible.’ We were debating that. I will tell you that it was
interesting to look in our mailbox. And I pull out my
magazine—It's Decision Magazine, it's called
Decision Magazine. And it says ‘Your strength in the
storm,’ and this is our faith. And so when I got that, I immediately
felt ‘Whew. OK, all right. My faith, you know, this is why I have
faith, for these types of situations.’ ”
Yet another couple was thrust into a deeply reflective mode when they
discovered that their hotel near the medical center was located on
“Mt. Moriah Church Road.” This connected in their sensibility
to the story in Genesis and to the site on which Abraham is commanded to
sacrifice his son Isaac, only to be reprieved at the last minute.
Questions about responsibilities to children, born or unborn, figured very
deeply into the decisions for all the couples. But who would have
predicted that a road sign—or a magazine retrieved from the mail
box—would provide a key for understanding a decisional process?
For all the couples, making good decisions meant fulfilling a
role, playing a part well. Deciding what the role entailed was not a
deliberative process, but seemed spontaneous, like an act of recognition.
This is not to say it was unthinking or reactive, but it seemed to flow
naturally out of what was already self-evident to them. One father,
speaking about his rationale for participating in the trial, said:
“It's the way I was brought up with my parents. They did
everything possible to help their kids. Their parents did the same thing.
It's just what you do.”
For these couples, the role that provided the proper perspective was
clearly that of parent. From this vantage point, narrative lines were
imaginatively cast into the future in terms of gauging a good or
acceptable choice. For several couples, their story included an
anticipated conversation 10 years in the future in which the couple is
trying to explain to the child the reasons for the choice to accept or
decline the prenatal surgery. A slight variation of this story line was
the projection of the child's future view of the decision in terms of
parental motives. This is captured in the following: “I don't
want our child to grow up and say: ‘Well, Mom and Dad could have
done something, but they didn't want to risk their own selves
[sic] to do it.’ ” The implication is that
the good parent is the one willing to sacrifice a great deal, even risk
one's own life and health to benefit the child.
Some of the decision processes we observed strained the meaning of the
term decision, at least as typically understood. Choosing well
for these couples meant aligning their actions with their authentic selves
and being faithful to their deepest perceptions about the situation. In
this sense, the couples didn't “decide,” but sought to
discern their proper place in the scheme of things. Sometimes this
discernment involved letting go of the sense that one has final authority
or power to affect the outcomes through a decision. One couple put it this
way: “Well, you know, regardless of what happens, if we decide not
to have the surgery or to have the surgery, if we lose the baby, well,
then that was God's will. So we're just going to have to stay
with that.”
Of course, not all the couples expressed their convictions in frankly
religious terms, although it is true that couples who took the time and
energy to investigate the trial were couples who had already decided
against terminating the pregnancy, and in that sense, might have been an
atypically religious sample. But even with those couples for whom religion
did not play an explicit role in their decision process, there was a sense
that the higher wisdom may be in acknowledging limits on what one can
control, and therefore the need to select a course and stay with it.
In sum, we think it is accurate to say that the decisional model most
often endorsed by bioethics practitioners was not in evidence in the
thoughts of these couples. They did not follow any of the classic patterns
of deliberating on the options, sorting out the values involved in each
option in a logical way or deducing courses of actions from the
interpretation of rules or principles. Nor were their decisions any worse
for this deviation from the bioethical standard. Decisions were for them
less “made” in the sense of constructed than “arrived
at,” reached after a journey, and sometimes the path of the journey
was seen as already mapped. The task was to find the path. Reaching
resolution was less a matter of deciding than of following rituals and
practices that would allow them to locate the right way for them, and by
so doing, to reaffirm themselves as being certain kinds of people, viz.,
“good parents,” “Christians,” or, more simply,
“responsible.”
Stated in its positive form, decisional capacity for these couples
emerged from a condition of being oriented, an ability to draw from
one's customary moral resources, and a demeanor of confidence in the
face of uncertainty and ambiguity. One of the critical questions that
confronts anyone who enters the foreign turf of a large academic medical
center, especially one away from home, is how does one marshal resources
to find one's moral bearings in this strange, and often intimidating,
place. The task for these couples could be fairly described as how to get
grounded in a new place in a very short time and with strangers who are
striving to be helpful, but may or may not share the same customs or
values. Here it is important to acknowledge that bioethicists typically
worry about decisions being grounded—about their quality,
coherence, and consistency—whereas these couples were more worried
about the prior task of how they themselves can be grounded.
These are different phenomena.
Another way to put this is to say that these couples embodied a robust
and deeply reflective ability to use the traditions in which they had
lived to help them through the current crisis. In saying these couples
were deeply reflective we do not mean that they were theoretical. They
were not probing the adequacy of the moral standards they brought with
them; rather they were seeking to work out the implications of their
commitments in the current crisis. In doing this they displayed a kind of
quiet confidence in themselves. They seemed to know somehow that their
moral resources were adequate to the decision they faced. They were
sometimes uncertain about what to do, but not intellectually puzzled about
what would be the framework for a good choice. In this sense they were not
bewildered or overwhelmed by what was happening to them. For example,
couples with whom we worked were deeply saddened by the news that their
child would have handicaps, they were often shocked and emotionally
challenged by the prospects they faced, but they were not intellectually
troubled over what standards they should use to decide what they should
do. What they arrived at was less a decision and more a
response that “fit” them and their lives; what they
engaged in was less deliberation than reorientation. In this sense, H.R.
Niebuhr seems to offer a better moral phenomenology than Aristotle, Kant,
Mill, or others in the standard bioethics pantheon.6
See Niebuhr HR. The Responsible Self. New York:
Harper and Row; 1963:47–68.
Of course, the couples we
studied did come to decisions. But decisions here seemed to be ways of
finding or affirming
meaning, not solving a problem. A quotation
from John Gardner serves to summarize this phenomenon well. “Meaning
is not something you stumble across, like the answer to a riddle or the
prize in a treasure hunt. Meaning is something you build into your life.
You build it out of your own past … out of the things you believe
in, out of the things and people you love, out of the values for which you
are willing to sacrifice something.”
7 Gardner J. Personal renewal. Western Journal of
Medicine 1992;157:457.
In sum, the parents we interviewed were like people who woke up one
day to find themselves in a different world. The children they were soon
to have were not the children they had hoped for or anticipated, and they
soon realized that they were newcomers in an astonishingly complex world,
in which healthcare and rehabilitation programs would be standard
fixtures. Their decision for or against the prenatal surgery was part of
what it was about to find their way in this new world, regaining a sense
of what is possible, how to be who they are in the new
environment—in essence, a recalibrating of self. Our main point is
that the logic of this recalibration of selfhood follows a different
dynamic than the rational, theory-driven approaches so often favored by
bioethics.
Toward Alternative Approaches
We have made allusions to the dominant model of bioethics without
specifying its features. For our purposes, it is sufficient to highlight
two major elements:
- Ethics is primarily about making decisions.
- Theoretical reflection is required for such decisions to be
“sound.”
There is, of course, an immense literature raising questions about
this dominant model, both within the field of ethics and the more
restricted field of bioethics.8
See G.E.M.
Anscombe's “Modern Moral Philosophy,” originally
published in 1958 and reprinted in her Ethics, Religion and
Politics. Minneapolis: University of Minnesota Press; 1981; see also
Murdoch I. The Sovereignty of Good. London: Routledge; 1970;
MacIntyre, A. After Virtue. Notre Dame, IN: University of Notre
Dame Press; 1981; Pincoffs, E. Quandaries and Virtues: Against
Reductivism in Ethics. Lawrence: University Press of Kansas; 1986.
Among bioethicists, see Walker MU. Keeping moral spaces open. The
Hastings Center Report 1993;23:33–40; Fins J. Commentary: From
contract to covenant in advance care planning. Journal of Law,
Medicine and Ethics 1999;27:46–51. Walker has characterized the
“dominant modern view” of ethics as “the attempt to
articulate and justify the right or best moral theory.” While
acknowledging that this model has many detractors in the history of
philosophy, she also believes that it is “thoroughly embedded in
medical ethics” (p. 33). In this view theories are important because
they provide a way of justifying, in an impersonal way, the selection of
some actions as preferable to others. Thus conceived, the person who can
wield theory most successfully stands the best chance of being able to
justify his or her choice. So Walker is appropriately worried about the
way this model privileges a notion of moral expertise, favoring those who
are facile with theory over others involved in patient
care.
Fins makes a similar case against
the dominant view in a discussion of advance care planning and healthcare
proxies. He argues that when he needs to rely on his own healthcare proxy
he doubts very much whether she will engage in “an exercise in
rationality.” Fins contends that the chief capacity to be prized in
a proxy decisionmaker is not clearheaded reasoning but a set of
virtues—“fidelity, wisdom and love”—and a deeply
attuned memory—“recalling our intertwined lives and the
challenges we had faced together” (p. 46).
Our purpose here is not to introduce yet another theoretical treatment
of the limitations of theory, but to urge that the thickness of what is
before us in our interactions with patients and healthcare providers
shows us the inadequacies of the dominant model. The striking
feature of our work with patients and subjects is the inability of the
dominant view to capture their discernment of the issues they
were dealing with and the complex ways they reached a resolution. Our work
shows us, in other words, that decisions are most often not the
primary stuff of bioethics—and that theory is not the only
way reflection can be undertaken. And it bears repeating here that the
dominant view can't account for our own personal experiences, when we
found ourselves to be patients or family members in crisis, any better
than it can account for the experiences of those we interviewed.
As a result, we have become increasingly wary of the many subtle ways
the dominant view—essentially an Enlightenment model for
ethics—discredits the moral insights that patients and research
subjects bring to their medical encounters. We are seeking to highlight
this wisdom, which, because it defies exhaustive rational analysis and
concise theoretical grounding, too often flies under the radar. Yet we are
not claiming that our patients and subjects are necessarily “wise
persons,” or that they always made the “best” choices,
but only that, in these powerful circumstances, they display what most
would recognize as wisdom—often the wisdom carried in their
families, churches, or communities. Earlier we used the phrase
“common moral wisdom” and we return to it at this juncture to
highlight a kind of moral perceptiveness we believe is evident in the
vignettes we have described. Such wisdom is “common”—not
in the sense of “held in common,” as though there were some
set of views held by everyone—but “common” as used in
the political tradition of “common sense” or in the everyday
expression “the common cold.”
Likewise, and consistent with our whole approach, we deliberately
offer no technical, theoretical, or philosophical definition of
wisdom beyond its usage here, first, because, following Ludwig
Wittgenstein, we find such inquiries to be fruitless and also beside the
point, and, second, because our usage is, we believe, well within the
common family of usages in ordinary life, as well as that in traditions of
philosophical discourse.9
For example, under
the entry “Wisdom” in the Encyclopedia of Philosophy
(New York: Macmillan; 1967;8:322–4), Brand Blanshard discusses a
wide range of views, including ancient “wisdom literature”
that is concerned with sound judgment about the living of a good life, and
what he terms “the Greek conception,” including Plato,
Aristotle, and the Stoics. Blanshard notes, relevant to our concerns here,
that the Enlightenment period marks a turn away from wisdom traditions to
more epistemological and technical metaphysical concerns in ethics. A
related but distinct understanding of wisdom can be found in Western
religious traditions, which could be roughly characterized as consisting
of moral counsel in the form of exemplary stories, parables of moral
discernment, fables of critical events, and collective sayings thought to
be vital to the well-being of communities. See, for example, Crenshaw JL.
Ethics in wisdom literature. In: Childress JF, Macquarrie J, eds. The
Westminster Dictionary of Christian Ethics. Philadelphia: Westminster
Press; 1967;662–3. Importantly, Crenshaw insists that wisdom
literature is not insulated from reflective and critical interpretation
and often contains reflexive agnostic and skeptic approaches to the wisdom
literature itself.
Still and all, it is a strong word, a
provocative word—and we have deliberately chosen it for
both of those qualities.
When we say our patients and subjects display wisdom, we mean that
they demonstrate an ability to get themselves oriented, and reoriented, in
unfamiliar and challenging settings, in the face of the many new people
and the new culture of the medical arena, in confronting huge life
changes. This reorientation is certainly not made possible by theory,
theoretical reflection, or expertise in bioethics. It is also our initial
impression that this reorientation does not occur through
narrative—at least not in any developed sense. Many who have been
critical of the dominant model, as we are, have looked to narrative to
frame an alternative account. But our experience is that patients and
subjects tell short anecdotes, quote family members or a pastor or rabbi
or priest, repeat truisms, muse philosophically, give homilies, recount
web searches, recall poignant moments—and that they do these things
in what would appear, from a theoretical perspective, to be little more
than a jumble. But if we put the term omnibus here, we might say
that this is a description of their method. They gather in what is to
hand—what they can use to reconstruct their moral world in new
settings, with new people, before new challenges. It's “a
little bit of this, a little bit of that.” Not narrative in any
literary sense, or even in the more ordinary usages of the term. And
certainly not argument.
If this is what is before us when we look closely at what actually
happens for patients and subjects, when we get outside how we as
bioethicists expect them to behave and decide, where then do we look for
resources for alternative approaches, alternative accounts—we who
are ourselves soaked in, trained up in, and captivated by this model? How
do we get a wedge in here, loosen the conceptual and linguistic cramps in
our heads—and our hearts—so that we can see what is in front
of us and learn from the patients, subjects, and healthcare providers we
work with?
What we find when we look, actually, is that there is an immense
richness of resources available to us—but a richness we have,
collectively, as a field, largely ignored in our servitude to the dominant
model. Within the analytical tradition of philosophy, there is
Wittgenstein's later work, which has provided a plethora of examples
and insights for those wanting to escape the dominant model—and
which has inspired so many probing critiques of the role of theory in the
moral life.10
Yet the impact of Wittgenstein
in bioethics has been marginal. To the best of our knowledge the only
exploration of Wittgenstein's work for bioethical uses is Elliott C.
ed., Slow Cures and Bad Philosophers: Essays on Wittgenstein, Medicine
and Bioethics. Durham, N.C.: Duke University Press; 2001.
In
the Continental tradition of philosophy, the French have been offering for
decades investigations of the limitations of theory and of the subject as
a rational agent. We think, among others, of Merleau-Ponty, Deleuze,
Foucault, Derrida.
11 For apposite remarks on
the uses of these and other Continental thinkers, bioethicists should take
a look at Zaner RM. The Context of Self: A Phenomenological Inquiry
Using Medicine as a Clue. Athens: Ohio University Press; 1981;
Schenck D. Operative dimensions of Zaner's Context of Self.
International Studies in Philosophy 1985;16:59–64. To trace the
genealogy of this inquiry in phenomenology, one should work back through
Scheler and Schutz, and then move on to Merleau–Ponty, and finally
on to Levinas, Deleuze, and Foucault. In roughly similar territory, we
would note Wittgenstein's fascination with Fraser and Freud and his
use of them and the literature that those inquiries have
spawned—including certain strands of the work of Clifford Geertz, by
way of his reading of Gilbert Ryle. And, from these starting points, it is
but a short leap to the history and sociology of medicine and various
other inquiries in the purview of the medical humanities.
Likewise, literature offers much material for reflection. Anton
Chekhov, himself a physician, comes first to mind. His stories of
medicine, doctors, and patients display a much richer awareness of what we
may call the “full-life context” of medical matters than most
anything in bioethics. It is, we would argue, this detail and
attentiveness that has given Chekhov's work its widely respected
moral authority and its reputation for wisdom.12
For instance, see Chekhov's “A medical case, Ward
no. 6” and “A dreary story.” The quotation at the
beginning of this essay is from Chekhov A. A dreary story. In: Wilks R,
ed., The Steppe and Other Stories, 1887–1891. London:
Penguin; 2001:223. See the journal Literature and Medicine for
hundreds of illustrations and elaborations of how narrative works as an
instrument of moral discernment and critique.
We have found anthropology to be most helpful in our own most recent
reflections, and so will linger here a bit longer. One may think of
anthropology as a whole discipline—like modern philosophy itself,
theoretical and Enlightenment-grounded—that has steeped itself in
non-Enlightenment, nontheoretical ways of thinking, being, and doing.
There is much to learn from fieldworkers like Keith Basso and his
investigations of the Apache notion that “wisdom sits in
places,” as well as from theorists like Levi-Strauss and his notion
of the bricoleur.
In his Wisdom Sits in Places: Landscape and Language among the
Western Apache, Basso tells the story of a portion of his own
education into wisdom as understood by the Apaches of the Cibecue region
in Arizona.13
Basso, K. Wisdom Sits in
Places: Landscape and Language among the Western Apache. Albuquerque:
University of New Mexico Press; 1996.
He recounts his efforts to
learn and to pronounce properly a vast array of place names—e.g.,
“Trail Goes Down Between Two Hills,” “Water Flows Down
on a Succession of Flat Rocks,” “White Rocks Lie Above in a
Compact Cluster.” Places of significance to the Apache have stories
associated with their names as well, stories of the people of “long
ago” that have clear moral punch to them. By exchanging the names of
places, each of which is associated with well-known stories of what took
place there—and with equally well-known moral lessons taught by the
stories—the Apache conduct moral discussions, draw moral
conclusions, and make moral judgments. There is no “theory” in
any recognizable Western sense—but there is clearly reflection,
thoughtfulness, and moral insight. And, Basso's teachers say, there
is also the wisdom that comes from meditating for years and years on these
place names and their stories and what they teach about human nature.
“Wisdom sits in places. It's like water that never dries up.
You need to drink water to stay alive, don't you? Well, you also need
to drink from places. You must remember everything about them. You must
learn their names. You must remember what happened at them long ago. You
must think about it and keep on thinking about it. Then your mind will
become smoother and smoother. Then you will see danger before it happens.
You will walk a long way and live a long time. You will be
wise.”
14 See note 13, Basso
1996:127.
The Cibecue Apache have a process for moral reflection, a method of
discernment that is not theoretical and does not focus on decisions. And,
although it depends on narrative, its force comes really from the
assembling of a variety of names and narratives and moving them quickly
among one another in dialogue.
Holding with this notion of assembly, we turn to Claude
Levi-Strauss' presentation of the activity of the
“bricoleur” in The Savage Mind:
The “bricoleur” is adept at performing a
large number of diverse tasks; but, unlike the engineer, he does not
subordinate each of them to the availability of raw materials and tools
conceived and procured for the purpose of the project. His universe of
instruments is closed and the rules of his game are always to make do with
“whatever is at hand”, that is to say with a set of tools and
materials which is always finite and is also heterogeneous because what it
contains bears no relation to the current project, or indeed to any
particular project, but is the contingent result of all the occasions
there have been to renew or enrich the stock or to maintain it with the
remains of previous constructions or destructions.15
Levi-Strauss C. The Savage Mind. Chicago: University
of Chicago Press; 1973;17. (La Pensée
sauvage—“a wildly spectacularly untranslatable
pun,” as Clifford Geertz has it.)
Suppose that the process of getting oneself oriented in situations
that require moral reflection and conducting that reflection once oriented
is something like the bricoleur's work. Thinking this way we
would find that the moral agent keeps a ready stock of resources useful
for various moral puzzlements—old stories, memories, wisdom sayings,
pithy maxims. These resources are made up of elements that have been
useful in the past, either to the bricoleur himself/herself
or to his or her people or community, to someone the bricoleur
has known, to the old ones. They are “the contingent result of all
the occasions there have been to renew or enrich the stock.” Thus
when confronted with a new setting, new people, or a new conundrum, the
moral agent rummages through the kit looking for what might be of use, a
“little bit of this, little bit of that”—looking for
what Levi-Strauss calls “operators”:
The set of the “bricoleur's” means
cannot therefore be defined in terms of a project…. It is to be
defined only by its potential use or, putting this another way and in the
language of the “bricoleur” himself, because the
elements are collected or retained on the principle that “they may
always come in handy.” Such elements are specialized up to a point,
sufficiently for the “bricoleur” not to need the
equipment and knowledge of all trades and professions, but not enough for
each of them to have only one definite and determinate use. They each
represent a set of actual and possible relations; they are
“operators” but they can be used for any operations of the
same type.16
See note 15, Levi-Strauss
1973;17–8.
Once again there is a process of assembly—though this time less
systematic than what Basso describes.17
To
go further with assembly and on into “assemblages,” all in
senses relevant to our project here, work with Deleuze G. and Guittari, F.
One-Thousand Plateaus. Massumi B. trans. Minneapolis: University
of Minnesota Press; 1987:passim.
But Levi-Strauss is
giving us a Weberian ideal type, and it is one that we can recognize as we
look at the subjects, patients, and families that we have described in
this essay: people reaching into their toolkits, their resource bags, and
pulling out elements to assemble—or rather reassemble—their
moral worlds in the face of medical culture and the huge issues of living
and dying that that culture so often serves as custodian for in
contemporary society.
But after going to and through all the immense richness of such
resources, we come back as we always must, to this: The greatest richness
is in our patients and subjects themselves. These encounters are our
ultimate resource—yet they are the ones most often overlooked,
caught as we tend to be, as a field and as practitioners, in the grip of
the dominant model. We need to do more of our own “thick
descriptions,” paying more careful attention to the wisdom
that's right in front of us.18
Geertz,
C. Thick description: Toward an interpretive theory of culture.
Interpretations of Cultures. New York: Basic Books;
1973.
We need to take Wittgenstein's admonition to heart,
and to work: “To repeat: don't think, but look!”
19 Wittgenstein L. Philosophical
Investigations, 3rd ed. Anscombe GEM. Trans. Oxford: Blackwell
Publishers; 2001:27#66. The German is sharper than Anscombe interprets
it: “Wie gesagt: denk nicht, sondern schau!”.
“To say it again: Think not, but look!”
In saying
that these encounters are our ultimate resource we are not, to be sure,
claiming that subjects, patients, or healthcare professionals always
arrive at the best or “right” decisions, nor would we claim
that they are all wise persons. But we are saying that many of them carry
a wisdom that sustains them through situations that might be deemed
“impossible.”
The broader aim of ethics calls to us here, calls on us to get in
touch with a profound place in ourselves, a deeper sense of who we are and
what our lives are about, for both ourselves and others. Ethics is less a
search for what is correct and more an effort to fathom what is deep, what
is wise. It is our task to look for such places and moments and to find
ways to train our physicians and caregivers, as well as our ethicists, to
take their cue from the wisdom of our patients and subjects, and to live
there as well.
