Medical Futility and Of: Dying Patients
Medical Futility and Of: Dying Patients
Medical Futility and Of: Dying Patients
.s ' Si L
W ith the development of new medical technologies fessionals and health care institutions are discussed with
during the latter half of this century, medicine has regard to communication with patients and families, con-
been able to keep terminally ill patients alive for longer flict resolution, and the development of professional stan-
periods of time without curing or ameliorating their dards about medical futility. In closing, I explore the
underlying disease condition. The widespread use of reasons why acknowledging the futility of life-prolonging
artificial feeding and nutrition, ventilator support, car- medical interventions can be so difficult for patients, fam-
diopulmonary resuscitation, and renal dialysis has meant ilies, and health professionals. Despite possible obstacles,
that patients diagnosed with metastatic cancer, coronary refraining from medically futile interventions is often the
artery disease, kidney failure, and other life-threatening best way to care humanely for patients at the end of life.
conditions no longer regard their diagnoses as lethal. Yet,
life-sustaining interventions have sometimes been a What Does Futility Mean?
double-edged sword. Medical treatments that extend life At first glance it might seem that, if a patient's death
may also result in patients spending their final days and is imminent, then the patient's entire situation is futile re-
weeks confused and debilitated, unable to breathe, eat, or gardless of what physicians do. On the other hand, if a
urinate without the assistance of ventilators, feeding life-sustaining treatment is working, that is, keeping the
tubes, and catheters. Although patients live longer, they patient alive, we may wonder how the question of futility
may find themselves confined to hospitals and intensive can even arise.
care units, where they are sedated and unable to interact To clarify these questions, it is helpful to note that the
meaningfully or to obtain comfort and support from the term "futile" refers to a specific medical intervention ap-
company of others. plied to a specific patient at a particular time. It does not
Under what circumstances should providers cease refer to a situation generally or to medical treatment glob-
life-prolonging efforts? When a patient reaches the final ally. Nor should "futile" be used to refer to a patient, or to
stages of a terminal condition such as AIDS [acquired im- care, as this may convey the impression that the patient is
munodeficiency syndrome], should the patient be admit- being abandoned or that comfort measures will no longer
ted to a hospital for pneumonia, receive intravenous be undertaken.
infusions for fluid loss with diarrhea, or be prescribed an- Finally, futile treatments sometimes succeed in pro-
tibiotics for a bladder infection? What about more inva- ducing physiologic effects, yet provide no benefit to the
sive procedures, such as the insertion of endotracheal patient. For example, cardiopulmonary resuscitation of a
tubes, the use of defibrillators, or surgical repair of a permanently unconscious patient may restore heart func-
bowel obstruction? When should providers attempt to tion, yet be regarded as futile because it does not confer
prolong life, and when should their efforts instead focus any benefit that the patient can appreciate. Those who re-
on palliative measures? gard the goal of medicine to be helping the patient, not
In this article I address the general problem of forgo- merely producing effects on organ systems or body parts,
ing the use of life-sustaining medical treatment in termi- accept what is thus called a "patient-centered" definition
nally ill and dying patients. I defend a patient-centered of medical futility.'
definition of medical futility, placing it in the context of A patient-centered understanding of medical futility
end-of-life care. The ethical responsibilities of health pro- involves attention to situations in which many effects can
From the Department of Medical History and Ethics, University of Washington School of Medicine, Seattle.
Reprint requests to Nancy Jecker, PhD, Dept of Medical History and Ethics, Box 357120, University of Washington School of Medicine, Seattle, WA 98195-7120.
288288
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patient or family? Or should physicians instead cede to The final decision about whether or not a particular
patients' or families' wishes? treatment is futile does not rest with any single person.
Where feasible, providers should communicate in ad- Rather, the definition of medical futility must be grounded
vance with patients (or surrogates) about decisions to in general standards of care that are first articulated by the
withhold or withdraw futile treatments. Sensitive commu- health care professions and then accepted by the broader
nication serves many functions, including making society.21'22 Guidelines about medical futility should be
providers accountable for their decisions, educating pa- based on reliable empirical data about the effects of inter-
tients and families, building trust between providers and ventions on different patient groups, as well as careful eth-
patients (or families), and averting concerns that re- ical analysis concerning patients' benefit. Whereas debate
sources are being rationed or that patients will be aban- about the meaning of futility and ethical implications con-
doned. Providers should use the occasion of discussing tinues, physician surveys show that physicians are already
the withholding or withdrawal of futile treatment to af- incorporating some concept of medical futility into deci-
firm that everything possible will be done to support the sion making at the bedside.-" Establishing general guide-
patient at the end of life, including the aggressive use of lines and standards that address medical futility is
palliative and comfort measures. preferable to delegating decisions about medical futility to
Although the ordinary obligation of health profession- individual physicians at the bedside. Bedside decisions are
als is to refrain from offering or using futile treatments, in often not thought through, not applied consistently, not ac-
certain situations compassionate exceptions should be countable to the public, not decided democratically, and
made. For example, a patient with widespread cancer not insulated from arbitrary or invidious prejudice based
whose death is imminent within a matter of hours or days on factors such as a patient's race or ethnic group. To min-
may ask to be made a "full code" because the patient imize possible abuses, institutions should develop clear
would like to live long enough to see a grandchild for the standards for withholding and withdrawing futile interven-
first time who is arriving from a distant state. Or a patient tions. Such standards serve to educate and guide not only
who will never leave the intensive care unit may want to patients and families, but also health professionals and
stay on a ventilator long enough to provide emotional courts about the limits of medicine.a6
support to a grieving spouse who is in the process of Many institutions have already begun to incorporate
slowly coming to terms with the patient's death. Agreeing the concept of futility explicitly into guidelines for the
to a time-limited trial may provide a patient or family an withholding and withdrawing of medical treatment. For
opportunity to come to terms with their situation and to example, Johns Hopkins Hospital (Baltimore, Maryland)
gain a sense of control over their fate. These examples has defined "futility" as any course of treatment that "is
make evident that the appropriate steps for implementing highly unlikely to have a beneficial outcome" or "is
general ethical guidelines to refrain from futile interven- highly likely merely to preserve permanent unconscious-
tions vary from case to case. ness or persistent vegetative state or require permanent
In the event that a patient or family persistently re- hospitalization in an intensive care unit."27 Local consen-
quests a treatment that the health care team regards as fu- sus is also developing in places like Denver, Colorado,
tile, a process of sensitively negotiating the conflict where area hospitals jointly developed criteria for decid-
should occur. Ideally, an institution's policy on withhold- ing that a treatment is futile.' Such guidelines establish,
ing and withdrawing treatment will specify steps for re- for example, that aggressive treatments, such as car-
solving conflict. These steps may include, for instance, diopulmonary resuscitation, are futile and should not be
consulting with the institution's ethics committee or indi- provided for patients who are bedfast with metastatic can-
vidual clinical ethics consultants2l*; drawing on resources cer, patients with AIDS who have had two or more
such as a chaplain or social worker to provide support to episodes of Pneumocystis carinii pneumonia, or patients
the patient or family; obtaining a second medical opinion; with multiple organ system failure with no improvement
and facilitating further communication with the patient, after three days of intensive care.
family, or both. In most cases, pursuing a process of con-
flict resolution enables the patient, family, and health care What Makes Acknowledging
team to reach agreement and bring the case to a point of Futility So Hard?
closure. Even when the parties continue to disagree about
what should be done, they may be willing to accept a Despite the importance of emphasizing patient bene-
compromise position. For example, if there is not a clear fit in the care of dying patients, health professionals often
consensus in the medical community about the futility of feel compelled to continue with nonbeneficial interven-
a particular intervention for the patient, the medical team tions. Interviews with physicians and nurses found that al-
may agree to refer the patient elsewhere. Or if a treatment most half (47%) of all respondents reported acting
is clearly futile, the patient or family may agree in ad- contrary to conscience in providing care to the terminally
vance to discontinue treatment after a certain amount of ill, with four times as many providing overly burdensome
time if there is no improvement in the patient's situation. treatment than undertreatment.29 Especially if a patient or
family member requests that "everything possible" be
*See J. La Puma, MD, D. Schiedermayer, MD, and M. Siegler, MD, "How done, the health care team may be reluctant to go against
Ethics Consultation Can Help Resolve Dilemmas About Dying Patients," on pages
263-267 of this issue. the patient's or surrogate's wishes. Unbalanced respect
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for patient autonomy, well-meaning compassion for understanding or a "feeling for the organism," scientific
grieving family members, fear of legal liability, and medicine emphasizes the empirical observation of physi-
avoidance of death are among the factors that can con- cal facts.33 Downplaying the importance of patients' expe-
tribute to the use of futile treatments at the end of life. riences and subjective quality of life can lead to the
Setting aside legal concerns and economic self- mistaken equating of survival with success.
interest, what leads health care providers to prolong pa- Third, the use of futile treatments at the end of life
tients' suffering by futile attempts to beat the odds? What may reflect our own fear of death. In modern secular so-
impels patients and families to request that "everything ciety, such fear may center on fear of the unknown, as
possible" be done when a loved one's death is clearly im- well as the loss of the comfort afforded by previous reli-
minent? Finally, why do we as a society continue to ex- gious understandings. As Callahan notes elsewhere in this
pect medical miracles, rather than viewing death as an issue, in contrast to the Puritans for whom death was a re-
inevitable, natural part of life? ligious and family event, to put in God's hands, modern
There is no single answer to these questions. Yet, the Americans tend to find little solace or meaning in death.-,
broader philosophical and historical context in which they Fourth, to the extent that the culture of medicine en-
arise may shed some light on why futile treatments are courages actions over omissions and judges attempts to
used and why acknowledging futility has been so diffi- beat the odds as "heroic," the tendency will be to continue
cult. One factor leading to the use of futile treatment is to use futile interventions. To the extent that practicing
undoubtedly our contemporary conception of disease and medicine is equated with using treatments, rather than
corresponding attitudes toward death. Western medicine with implementing a plan of care (which may include
tends to view disease as an enemy to be fought, with both actions and omissions), the tendency will be to re-
death marking the ultimate defeat in this battle against gard withholding or withdrawing treatment as "doing
disease. Such a conception has historical roots in the mid- nothing" or, worse, "abandoning the patient."35
19th century, when American medicine first began to Fifth, treatments may continue to be used beyond the
identify itself effectively with a more aggressive scientific point of benefit to patients merely as a result of not decid-
approach.?' It was also during this time that the germ the- ing what to do. One physician poignantly described his
ory of disease became predominant, with its emphasis on most frequent response when faced with decisions about
isolating and destroying a foreign organism. In contrast to using futile treatments for dying patients as
ancient Greek physicians who saw disease as an imbal- avoidance*P"791:
ance within the body, modern western physicians picture ... not to make a conscious decision at all.... the problem is
disease as a war waged against outside invaders. simply too difficult for me as a single human being to face in a
Susan Sontag depicted modern medicine in these conscious way.... On the other hand, how can I inflict the pain
terms when she ascribed the controlling metaphor in the of aggressive treatment, and the suffering of further living, and
description of fatal diseases, such as cancer, as drawn spend the scarce resources of time and money on this person who
from the language of warfare3P14': is so obviously "trying" to die? And so, all too often, I don't
[C]ancer cells do not simply multiply; they are "invasive" . .. make a conscious decision at all. I simply act, do something,
"colonize" from the original tumor to far sites in the body, first make a decision without really considering the meaning of what
setting up tiny outposts ("micrometastases").... Rarely are the I do.
body's "defenses" vigorous enough to obliterate a tumor that Finally, whereas admitting medical futility requires
has established its own blood supply and consists of billions of acknowledging that medicine is sometimes powerless in
destructive cells.... the prospects are that "tumor invasion" will the face of disease, continued efforts to beat the odds hold
continue, or that rogue cells will eventually regroup and mount out the hope, however slim, of eventually mastering dis-
a new assault on the organism. ease. As Nuland observed, fear of the loss and pain death
Likewise, the language of cancer treatment is in- portends can make it "more important to protect one an-
fused with military images: in radiotherapy, "patients are other from the open admission of a painful truth [than to]
'bombarded' with toxic rays ... chemotherapy is chemi- achieve a final sharing that might have snatched an endur-
cal warfare, using poisons"; all treatment aims to "kill ing comfort and even some dignity from the anguishing
cancer cells."31"(w fact of death."37P244' As a consequence, patients and fami-
A second factor that may contribute to a physiologic lies may keep up the charade of denial until the bitter end,
approach to end-of-life decisions is that the scientific clinging all the while to false hope, expecting to achieve
method medicine employs tends to emphasize the physi- a miraculous cure. Rather than exercising responsibility
cal signs of disease, while discounting the importance of by educating patients and families about the hazards of
patients' subjective experience of illness. According to excessive medical optimism, providers may instead pre-
some analyses, scientific medicine encourages a way of fer to put off such conversations indefinitely.
knowing in which people are seen as mechanical and
deanimated. Thus, Hunter maintained that medicine "fo- Conclusion
cuses on the measurable abnormalities of body and be- Those-dying then,
havior that, by appearing regularly in cases of illness, are Knew where they went-
They went to God's Right Hand-
the indices of identifiable disease or injury."321p531 Like- That Hand is amputated now
wise, Keller argued that rather than encouraging empathic And God cannot be found-
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9
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