Resolving Disputes Between Clinicians and
Family About “Futility” of Treatment
Robert A. Burt*
Family resistance to withdrawal of life support from children presents difficult issues of clinical
practice and of principle. Legal recognition of unilateral physician authority for withdrawal on
grounds of clinical “futility”-even in the most extreme circumstance of brain death-creates inappropriate incentives for clinicians’ avoidance of prolonged, emotionally taxing interactions likely to
persuade parents to accept the reality of their child’s impending or actual death. Although unilateral
physician action withdrawing support may sometimes be necessary in response to intractable family
resistance, clinicians should nonetheless always understand this course not only as a clinical failure in
dealing with families but also as unjustified in principle.
© 2003 Elsevier Inc. All rights reserved.
n February 2003, surgeons at Duke University
Hospital erroneously mismatched blood
types in a heart-lung transplant for a 17-year old
girl, Jésica Santillán, who died following massive
rejection. The individual and institutional failures that led to this mistake received widespread
public attention. Professional concern about the
prevalence of medical errors throughout clinical
practice had only recently been highlighted by
an Institute of Medicine report.1 These convergent professional and public perspectives make
it likely that the Duke failures will not be dismissed as exceptional events but will lead to
systemic changes to combat a generally acknowledged problem.
There was another dimension of the Duke
case, however, that has not received equivalent
attention but it should also be understood as
illustrative of systemic problems in clinical practice. The initial transplant was performed on
February 7; on February 20, the Duke surgeons
performed a second heart-lung transplant with
appropriately matched organs. Two days later
the physicians declared Jésica brain-dead and
withdrew life support technology. According to
press accounts, there was strong disagreement
between the physicians and the Santillán family
about this final action.
Subsequent personal communications from
some participants suggest that this account may
overstate the extent or persistence of disagreement between family and physicians. Nonetheless, in order to explore the principles at stake in
any such conflict, the accuracy of this account is
assumed.
I
Hospital officials initially said Ms. Santillán was taken
off the respirator “without protest,” but lawyers for her
family disputed that. Duke, they said, told the family it
did not need consent once brain death, meaning an
irreversible lack of brain activity, was established.
In an interview tonight, Dr. Karen Frush, one of 2
doctors who determined that Ms. Santillán was brain
dead, described a harrowing conversation with family
members– conducted through three interpreters provided
by the hospital-who refused to believe she was dead and
felt Duke had killed their child. Dr. Frush said that once
they were told Ms. Santillán was dead, her parents asked
for a second opinion but were told that second opinions
could be used only to evaluate treatment options, not to
question a determination of death.
“I told them we were very sorry, but Jésica had died,”
Dr. Frush said. “They did say they did not believe that,
but I had to tell them the truth. She was dead.”2
In withdrawing life support from a brain-dead
person, the Duke physicians were following standard protocol, endorsed both by law on the
books and by conventional principles of bioethics. In every state, physicians are authorized to
declare death on their own authority. In all
states but 2, brain-death criteria are regarded as
dispositive.3 In New Jersey and New York, legislation provides that family members or patients
themselves in advance directives may specify alternative criteria for determining death, based
on religious convictions favoring traditional carFrom the *School of Law, Yale University, New Haven, CT.
Address reprint requests to Robert A. Burt, JD, 66 Dogwood Circle,
Woodbridge CT 06525.
© 2003 Elsevier Inc. All rights reserved.
0146-0005/03/2706-0009$30.00/0
doi:10.1053/j.semperi.2003.10.009
Seminars in Perinatology, Vol 27, No 6 (December), 2003: pp 495-502
495
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Robert A. Burt
dio-pulmonary standards; but even in these
states, physicians are authorized to apply these
traditional standards on their own and to withdraw life support without obtaining family consent. Accordingly, the physicians in Jésica Santillán’s case had clear legal authority to disregard
her family’s objections and to remove life-support technology on the grounds that she was
already dead.
Some bioethicists have maintained that physicians should also have unilateral authority to
withdraw life support or withhold new treatments when such actions would clearly be “futile” because the patient was inevitably dying.4
This invocation of a “futility” principle is controversial. In the bioethics literature, the principle
has been criticized as clinically imprecise and
unhelpful5; in any event, the principle has not
been clearly approved in the handful of legal
cases where it has been tested.6 There is, however, virtually no disagreement in the bioethics
literature that if there is any appropriate application of a “futility” principle justifying unilateral physician authority regarding medical treatment, the brain-dead patient is the paradigmatic
justified case. There is, moreover, a further dimension of Jésica Santillán’s case on which there
is also virtually unanimous agreement in both
the legal cases and bioethics literature. The issue
in Jésica’s case was withdrawing rather than withholding of treatment; but there is general agreement in authoritative legal and bioethics sources
that there is no difference in principle between
foregoing and withdrawing treatment.7
Jésica Santillán’s case should, however,
prompt us to reconsider both of these propositions–that physicians are justified in unilaterally
overriding family objections to withdrawal of
treatment even from a brain-dead patient and
that there is no difference in principle between
withholding and withdrawing treatment for a
brain-dead, or indeed for any, patient.
Whatever legal and ethical justifications
might be offered on behalf of the physicians’
final actions in this case, I believe that their
disregard for the family’s objections was an apparent failure of tact and compassion. If Jésica
and her family had been properly informed of
the risks even of her first heart-lung transplant,
they must have had considerable foreboding. In
considering the second transplant 2 weeks later,
the family must have been buffeted by even
more difficult feelings. Did Jésica have any
chance for survival? Did the willingness of the
surgeons to go forward with the second transplant imply hope, however remote, that she
might survive? Could the surgeons be trusted in
light of their gross error in the initial operation?
If the surgeons could not be trusted, to whom
should the family turn for guidance? The family’s acceptance of the second transplant surgery
must have implied some resolution of these
questions in favor of hope that Jésica’s surgeons
could save her life.
Whatever hopes the family had, whatever
hopeful signs they had drawn from the surgeons’ discussions with them and willingness to
attempt the second operation, were of course
quickly crushed immediately after the surgery.
Looked at through their eyes, the speed with
which the physicians admitted failure might
have seemed extraordinarily abrupt. As they
must have understood it, Jésica had remained
alive though desperately ill for two weeks after
the first surgery. Just two days after the second
surgery, the physicians were prepared to declare
her dead–and yet, as the family most likely experienced it, Jésica would not have looked radically different from her appearance during the
interval between the first and second surgeries,
when the physicians were still holding out hope
for her survival. As a clinical matter, Jésica’s
life-like appearance notwithstanding her brain
death was nothing but an artifact of the technology to which she was tethered. But the family
most likely saw her life-like skin color and the
regular heavings of her chest through different
eyes than the clinicians.
Even if the family–natives of Mexico who had
traveled with foundation support to Duke for
the surgery– had been sophisticated medical
consumers, the death of one’s child is invariably
a devastating and disorienting experience. As
difficult as death is in any circumstance, the
death of one’s child turns the imagined “natural
order of things” upside down and undermines
family members’ beliefs and hopes about the
benign character of their universe. The error in
the first surgery already had given Jésica’s family
ample reason to disbelieve in the benign promises of the Duke physicians. Their accusation
that “Duke had killed their child,” as Dr. Frush
recounted of her “harrowing conversation” with
the family, was accurately grounded in the initial
Futility of Treatment
mismatch of the transplanted organs. The family’s added charge that the withdrawal of lifesupport after the second surgery was itself a
“killing” by Duke physicians was not clinically
plausible; but it was an understandable belief on
their part in the context of all the terrible events.
The entire encounter between the Duke clinicians and the Santillán family became encapsulated in this final eruptive disagreement about
whether Jésica was truly dead and who was responsible for acknowledging her death. This encapsulation illustrates the general observation in
the recent report, When Children Die, of the Institute of Medicine (IOM) Committee on Palliative and End-of-Life Care for Children and Their
Families. The IOM committee found that
when parents question or disagree with the health care
team or hospital management, they may perceive some
responses as legalistic and intimidating rather than
constructive and compassionate. One goal of palliative and end-of-life care is to minimize avoidable
conflicts related to poor communication, cultural misunderstandings, deficient clinical care, and approaches to decision making that fail to assure families that they and the health care team are doing their
best for the child. Such failures can haunt family
members and clinicians long after a child’s death.8
The final encounter between the Duke clinicians and the Santillán family appears to have
been a failure in all of the senses expressed by
the IOM report.
From the clinicians’ perspective, the Santillán
case was clearly extraordinary and deeply distressing. They were indeed to blame for Jésica’s
death and their blameworthy conduct was trumpeted in news media throughout the country.
Their sense of guilt and humiliation might well
have prompted wishes to be done with this terrible experience as quickly as possible; and this
wish might in turn have led them to quick override of the family’s objections. In light of the
clinicians’ initial gross error and even the subsequent uncertainty they must have felt about proceeding with the second transplant in light of
Jésica’s realistically dim prognosis, the certainty
and legal unassailability of the brain-death diagnosis might have been something of a relief
(although obviously mixed with their own grief)
for the clinicians. Given all the circumstances, it
was understandable– even if it was a considerable
lapse in compassionate care for the family-that
497
the clinicians would move so quickly to declare
Jésica brain-dead and remove the life-support
technology notwithstanding the family’s objections. And given the extraordinary character of
the circumstances in this case, it is tempting to
conclude that no general lessons should be
drawn about the usefulness of “futility” principles for unilateral physician decision-making
and the application of those principles to withdrawing treatment from any patients. The hallowed lawyers’ maxim that “hard cases make bad
law” might seem to dictate against any attempt to
draw general lessons from the Santillán case.
I believe, however, that this “hard case” was
made even harder by the current rules and accepted principles, both in the law and in the
bioethics literature, regarding unilateral physician authority over brain death determinations.
The current rules and principles not only permitted but in effect promoted the lapses of compassionate care for the family by the clinicians
involved in the Santillán case–and those rules
and principles are likely to have the same unfortunate impact in less visible cases of clinical decision-making.
Empirical investigation of relations between
clinicians and families regarding the withholding of treatment at the end of life is not extensive, though there is support for the propositions that conflict is not uncommon and that
most such conflict is ultimately, and relatively
quickly, resolved.9 But even if most of these conflicts are in fact resolved in a way that adequately
responds to families’ needs, I believe that the
incentives provided by the currently dominant
legal rules and bioethical principles point away
from this satisfactory result.
We can see this first of all by examining the
arguments that support the existing regime of
rules and principles for overriding family protest
against withdrawing life-support technology
even in the extreme situation presented by the
Santillán case–that is, for a brain-dead patient.
Three arguments are conventionally put forward: the patient’s best interest; the waste of
medical resources from continued treatment;
and the violation of medical professionalism in
providing demonstrably inappropriate or ineffective treatment. None of these arguments,
however, adequately supports unilateral physician decision-making to override family objections.
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Robert A. Burt
It is difficult to see how a brain-dead patient is
injured by continued treatment. Certainly this
patient experiences no suffering as a result of
the continued treatment. There may be a dignitary injury, especially if the patient had clearly
indicated beforehand that he wanted all treatment discontinued if there were no reasonable
prospect of recovery–the typical language in advance directives. But most patients have no advance directive; and in the face of any such clear
indication, it is unlikely (though not inconceivable) that family members would resist physicians’ determination that treatment should be
discontinued after brain death. For patients
without advance directives–and most especially
for children who are not competent to make
such medical decisions on their own behalf–it is
difficult to see the dignitary or the practical
injury when their family is adamantly insisting
that treatment be continued. On the other
hand, it is easy to see the dignitary and practical
injury inflicted on the family who, for whatever
reason, does not believe the physicians’ diagnosis of brain death or the merits of withdrawing
treatment based on that diagnosis. Perhaps this
family is pathologically in denial about the reality of their child’s death; but it is not plausible
that in all cases, or even in most cases, this
pathology would be ameliorated by forced imposition of the result they refuse to accept.
In treating children, physicians should protect the family as well as the child; it is artificial
in psychological and ethical terms to understand
the obligations of the physician-patient relationship as restricted solely to the child. It is plausible to assert that physicians owe primary loyalty
to the child and are obliged to favor the child’s
interest as opposed to the family’s when there is
conflict between them. But where the child’s
interest are not in jeopardy-as in continued provision of treatment to an insensate child–and the
family’s welfare is at risk because they are experiencing difficulty in reconciling themselves to
the child’s actual or imminent death, protection
of the family becomes the physician’s primary
obligation. Where there is disagreement between physicians and the family regarding treatment decisions, the physicians’ obligation at a
minimum demands intensive and prolonged efforts to counsel and persuade the family–to work
tirelessly, that is, toward reaching agreement
rather than unilaterally overriding family’s ob-
jections, as apparently occurred in the Santillán
case. The legal rule construing brain-death determinations as nothing but a scientific, technical issue entirely within the unilateral authority
of physicians leads to an unethical result in such
cases.
Based on reported clinical experience, only a
very small proportion of families will persist in
disagreement when their initial resistance is met
by skilled, compassionate response from the
treatment team.10 This kind of response is timeconsuming and often emotionally draining for
clinicians, especially when distraught families
are led by their grief to blame treating physicians
for their child’s imminent or actual death. In the
face of such accusations, it is not surprising that
physicians would want to close off further conversation and are thus powerfully tempted to
invoke legal rules which appear to give them
authority for such action. This temptation must
be especially strong when the physicians have
reason to believe that the family’s accusations
are in fact true–as in the Santillán case.
There are, however, some adamantly resistant
families who will be impervious to any counseling or persuasive efforts, no matter how compassionately or skillfully deployed. Is there justification for overriding such families’ persistent
objection to withdrawing treatment? For a terminally ill child, it is plausible that continued
treatment efforts inflicts suffering that cannot be
adequately palliated (although available palliative technologies, including techniques of terminal sedation, must be explored before clinicians
can resort to this justification for overriding family objections). But, as already noted, this justification does not apply to a brain-dead child. Is it
then permissible for clinicians to override persistent family objections based solely on the
waste of medical resources involved in any treatment efforts for a brain-dead child?
There is one circumstance in which this waste
could clearly justify unilateral physician decision-making: if the treatment modalities used for
the brain-dead child were in short supply and
other needy patients were directly deprived of
those modalities because of this competing use.
This is the triage justification for allocating
scarce medical resources, which validates clinical
discretion to deprive one patient of care based
on another patient’s greater need or greater
prospects for success. But this justification only
Futility of Treatment
applies to a direct competition between patients
for specific treatment modalities which could be
immediately shifted from one patient to the
other. It is unlikely that ventilator equipment,
for example, used on a brain-dead child would
be in short supply in any given hospital. It is
more likely that this child would be occupying
scarce bed-space in a hospital intensive care
unit, and the need to free ICU beds for other
patients could justify a unilateral clinical decision transferring the child to a step-down unit
with less intensive monitoring and staffing. The
triage rationale would not, however, justify complete cessation of all treatment efforts in the face
of persistent family objections.
Use of treatment modalities for a brain-dead
patient is also a waste of medical resources in a
global sense; and global waste is, many convincingly argue, bringing American medicine into a
state of financial crisis. It is not clear that the
amount of resources either currently or likely to
be used for the treatment of brain-dead or unavoidably terminal patients represents a significant source of waste. Even if substantial resources were involved in demonstrably futile
treatment efforts, this would not necessarily justify direct, so-called “bedside” rationing decisions. There is considerable dispute about the
proper role for global rationing of medical resources; “bedside” rationing by individual physicians who would be sacrificing their patients’
interests in order to serve more abstract, global
budgetary interests of the entire health care system is the least justifiable setting for rationing
efforts.11 Rationing in this setting would transgress physicians’ traditional role of wholehearted commitment to the welfare of their individual patients. Terminating treatment efforts
for a child notwithstanding family objections in
order to save money for the overall health care
system would violate physicians’ primary service
obligation to their patients.
Physicians are not, however, merely “hired
guns” obliged to implement their patients’ every
wish, no matter how implausible. Even if no
specific harm can be demonstrated to the patients’ interest from such implementation, and
even if it is unjustifiable for physicians to refuse
implementation in order to save money for the
health care system, there is still an additional
justification available that physicians are not
morally required to use their skills in ways that
499
violate their own sense of professional integrity.
This was the proper justification for the refusal
of some surgeons to attempt separation of conjoined adult twins, in the recently well-publicized case of the Bijani sisters. Before these Iranian twins found surgeons in Singapore willing
to attempt this operation, they had been turned
down by others who regarded the risks of failure
as excessive.12 Notwithstanding the adamant insistence by the twins themselves that they wanted
the surgery in spite of these risks, no surgeons
were morally obliged to undertake the surgery
and thereby implicate themselves in the death of
these patients. The surgeons, that is, had an
independent moral justification for withholding
an intervention where the risk of an unfavorable
outcome was so great as to impose a sense of
responsibility for that outcome on the surgeons
themselves. This is not to say that the surgeons
who did attempt the surgery, which did indeed
lead to the twins’ deaths, were morally at fault
for acceding to the patients’ clear, and clearly
competent, choice. It is only to say that patients’
wishes are not the only acceptable guide for
physicians’ uses of their treatment skills and
that, in some contexts, physicians are ethically
justified in refusing to provide treatments based
on their own strong misgivings about the appropriate use of their skills.
Does this justification apply to physicians’
wishes to discontinue treatment of inevitably dying or even brain-dead children notwithstanding
family objections, as in the Santillán case? As a
general proposition, I believe that this kind of
justification lies at the heart of the debate about
the availability of a “futility” rationale for unilateral physician refusal to provide treatment for
terminally ill patients. The conventional rationalizations–that “futile treatment” violates patient interests or societal interests in saving
scarce resources– do not stand up to close analysis, for reasons that I have already suggested.
The claim of an independent justification
based on physicians’ own sense of professional
integrity–their reluctance, and even aversion, to
using their skills in ways that appear inappropriate, even if demanded by patients–is, however,
more difficult to define within precise boundaries. This justification can be articulated as a
claim to physician “autonomy”–the right to
make an independent moral judgment-regarding the use of professional skills. But phrased in
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Robert A. Burt
these terms, the claim seems question-begging–
why should the physician’s assertion of “autonomy” trump the patient’s or patient surrogate’s
claim to autonomous choice about the course of
medical treatment?
One possible direction might offer an exit
from this conundrum–to distinguish between
patient/surrogate demands to initiate treatment
and demands to discontinue treatment. It has
become a shibboleth of modern bioethics that
there is no distinction between initially withholding and subsequently withdrawing treatment.13 But most of this discussion has occurred
in the context of patient claims for a right to
forego treatment; and in this context, it is plausible to say that the patient’s right to control his
own body should extend to any kind of intervention, whether at its beginning or during its
course. When the issue is whether physicians
have a unilateral right or authority to refuse
rather than to provide treatment, however, the
distinction between withholding and withdrawing has more salience.14
If Jésica Santillán’s parents, for example, had
demanded that the surgeons perform an appendectomy to save her life, it is inconceivable that
the surgeons should be obliged to comply with
this demand since it has no plausible physiological connection with her condition. In effect,
physicians routinely apply “futility” judgments in
deciding on medical interventions or, indeed, in
deciding what options should even be revealed
to patients as potential courses of action. This
kind of “futility” judgment directly impinges on
patients’ rights to make informed decisions
about their treatment; in its modern formulation, the “informed consent” doctrine requires
physicians to inform patients about all alternatives, including the alternative of non-treatment,
regarding their medical condition. It would
make nonsense of this doctrine to say that physicians must inform Jésica Santillán’s parents of
all the treatment modalities that are utterly implausible because they have no connection with
her physiological needs. In this sense, the “informed consent” doctrine gives physicians unilateral authority to decide what options should
be presented to the patient and what options
need not even be mentioned– on the ground,
one might say, that they are “futile.”
This notion of futility does not clearly apply,
however, to the issue of withdrawing treatment.
Physicians may conclude that a patient’s condition has changed so that a treatment modality
which once had plausible physiological justification no longer does so. But the very fact that the
physicians had initiated the treatment conveys
the implication that it might still be needed
much more strongly than if the physicians had
never initiated or, indeed, had never considered
initiating the treatment. Moreover, discontinuing treatment often directly leads to an observable change in the patient’s physiological condition–as, for example, in Jésica Santillán’s case,
removal of mechanical ventilation would directly
lead to the cessation of the regular heaving of
her chest and the draining of color from her
skin (even if this removal would not lead to her
death since she was already brain-dead). Refusing to initiate treatment can also have direct
consequences for a patient’s condition, but the
direct causal connection typically appears more
attenuated or less certain in its impact.
We may only be talking about appearances in
making this distinction rather than logically irrefutable differences. But appearances make all
the difference for a family’s experience of responsibility for the death of their loved one. It
may be that this distinction between withholding
and withdrawing treatment is highly subjective
and cannot withstand close rational analysis.
Notwithstanding its logical flaws, recent opinion
surveys indicate that many clinicians (more
nurses and residents than physicians) see ethical
differences between withholding and withdrawing treatment;15 it is not surprising that large
numbers of lay people take the same view.
Moreover, it is misleading to identify “irrationalities” on the part of patients or their families
and dismiss their views on that ground as compared to the “scientific rationality” of the medical community. There is good reason to believe
that physicians’ reluctance to persist in the treatment of imminently dying patients, with what
they regard as medically futile efforts to avert
death, have an added measure of intensity because of physicians’ aversion to prolonged, unresolved involvement in the processes of dying.
The subjective dimensions of physicians’ attitudes toward death have not been systematically
explored, though there is suggestive data about
the emotional distress experienced by clinicians
in providing what they regard as futile care to
dying patients.16 Clinicians are hardly immune
Futility of Treatment
to the distress surrounding death and dying that
afflicts most people; indeed, the routine, repeated involvement of clinicians in the dying
process may intensify this distress as much as it
provides them with psychologically desensitizing
armor to keep these distressful feelings at bay.17
It is more realistic and more respectful to all
of the participants in bedside debates about the
futility of treatments for apparently dying or
even dead people to acknowledge that strong
subjective responses run parallel to, and often
compete with, objectively verifiable observations.
It is more realistic to acknowledge that the subjective experience of a family member’s death or
a patient’s death has long-term consequences
for good or ill for the survivors–and to design
legal rules and ethical principles governing bedside decision-making that respond to the emotional needs of all participants rather than encouraging some participants to disregard and
override the needs of others.
Viewed from this perspective, there is no
good reason to give priority to the needs of
physicians over patients or of patients over physicians. It might seem tempting to invoke a principle of medical ethics that physicians should see
themselves as servants of their patients’ needs
and set aside their own needs in this encounter.
But application of this principle in a context
which requires that physicians override their
sense of professional integrity and their commitment to scientific rationality will not serve patients well in the long term, or even in immediate current encounters. Such application will
promote grudging acquiescence at best with patient demands that are viewed by physicians as
patently foolish–and grudging, disrespectful
provision of medical treatment is not the “real
thing,” as patients and their families will almost
inevitably perceive.
From this perspective, there is only one principled, satisfactory resolution of the conflict
about continued treatment of dying patients–a
true resolution, that is, in which patients, families and clinicians come to agree on the proper
course of action. As noted, many clinicians shy
away from the time-consuming, emotionally
draining interactions with patients or families
that are necessary to produce this agreement. As
noted, current rules about diagnosing braindeath and proposed rules about unilateral physician determinations of “futility” provide strong
501
incentives for clinicians to act on their discomfort and avoid these interactions. These rules
and proposals must be rejected for this reason;
they endorse and promote clinician behavior
that disserve the needs of patients and their
families.
This conclusion appears to leave open a troublesome loose end. In those cases where agreement cannot be negotiated, some binary decision must be made either to persist or to
discontinue the treatment. What principle
should govern this decision? Whose perspective
is entitled to prevail? Some decision must, of
course, be made. But I believe that there is no
rationally supportable ethical principle that can
be identified to govern this decision. In the face
of persistent disagreement between families and
physicians, the honest and therefore best course
is to admit that any decision–whether to continue or to discontinue treatment– cannot be
justified in principle. Action must be taken– but
in this context, as in many others, the choice is
between two incommensurate evils and the best
course is to admit this openly and honestly.
In choosing between incommensurate evils,
the pragmatically superior course often is to
equivocate–to preserve the status quo, to buy
time in the hopes that unfolding events will
ultimately point to a principled resolution. This
solution would point toward clinicians’ acquiescence in continued treatment while persisting in
respectful disagreement and intense conversations with the family. But at some moment in
time this no longer is an equivocal result that
roughly accommodates both sides of the dispute; at some moment, this expedient becomes
too much like a permanent result that wrongly
inflicts defeat on one side in this disagreement
where the competing principles are in equipoise.
There can be no fixed formula for calculating
the moment when the lapse of time converts the
equivocal character of a resolution into an unjustifiably permanent resolution. But whenever
this moment clearly seems to appear, it would be
justified for clinicians to reassert the equivocal
character by changing some detail of the treatment arrangements without terminating it– by,
for example, reducing the intensity of clinical
monitoring or moving the patient to a step-down
unit or transferring the patient to a nursing
home (if one can be found). The resistant family
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Robert A. Burt
might construe these actions not as equivocations but as permanent resolution likely to hasten their loved one’s death. But the family is free
to reassert their position by, for example, going
to court. The immediate practical impact of this
family move to litigation is not a unilateral imposition of their will over the physician but only
another forceful equivocation about the ultimate outcome. Considerable time is likely to
pass between the filing of a lawsuit and its resolution; and during this time, the family would at
most have a plausible but far from assured
chance of prevailing.
It may be that a judge would misunderstand
the equipoised nature of the merits in this dispute and ultimately reach a definitive resolution
awarding complete victory to one side and inflicting defeat on the other. Many judges, like
many lawyers and many medical clinicians, have
a visceral aversion to irresolution and are prepared to invent imaginary resolving principles
on the question-begging premise that in all disputes, one side is clearly right and other clearly
wrong. Judges are especially prone to this illusion in disputes about death and dying because
they are no more comfortable with prolonged,
unresolved encounters with the subject than
other professionals or lay people.
The task for shaping legal rules and identifying bioethical principles is not, however, to succumb to this attractive illusion. The proper task
is to identify dilemmas of principle where they
truly exist. That is the truth about disputes regarding the futility of persistent treatment for
apparently dying or dead people.
References
1. Institute of Medicine, To Err Is Human: Building a Safer
Health System, Washington, DC, National Academy
Press, 1999
2. Archibold RC: Focus Shifts to Decisions Made at End of
Girl’s Life. N.Y. Times, February 24, 2003, p. A11, col. 8
3. Veatch RM: The conscience clause: How much individual choice in defining death can our society tolerate? in
Stuart Y, Arnold R, Renie S (eds): The Definition of
Death: Contemporary Controversies. Baltimore, MD
Johns Hopkins Univ Press, 1999, p 137
4. Schneiderman LJ, Jecker NS, Jonsen AR: Medical futility:
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5. Helft PR, Siegler M, Lantos J: The rise and fall of the
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7. Cruzan v. Director, Missouri Dep’t of Health, 497 U.S.
261, 273 (1990); President’s Comm’n for the Study of
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Treatment 73-77 (1983)
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