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Clinical Commentary

Making Decisions About the Forgoing of


Life-sustaining Therapy
JOHN M. LUCE
Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, San Francisco, California

The incidence of withholding and withdrawal of life support from critically ill patients has increased
to the extent that these practices now precede well over half of all deaths in many intensive care
units (ICUs). Although the forgoing of life-sustaining therapy is ethically acceptable and clinically de-
sirable in certain instances, and although physicians do not have a responsibility to provide futile care
even if a patient or surrogate insists on it, they must be cautious in exercising their influence, if not
authority, over patients and surrogates in prompting the withholding and withdrawal of life support.
Such caution is particularly indicated because managed care has made patients suspicious of health-
care institutions and physicians who are rewarded for restricting access to care. Most patients and
surrogates agree with reasonable physician recommendations to forgo life-sustaining therapy. When
they do not agree, physicians should not limit care on the basis of their own personal notions of futil-
ity, but should instead rely on institutional or multiinstitutional futility policies. Such policies should
be developed by health professionals, patients, community leaders, and, when appropriate, partici-
pants in managed-care organizations. They should specify which ICU interventions are beneficial, ad-
dress potential conflicts of interest, and be available to persons who could use such information in se-
lecting the source of their care. Luce JM. Making decisions about the forgoing of life-sustaining
therapy. AM J RESPIR CRIT CARE MED 1997;156:1715–1718.

Ten years ago, my colleagues and I undertook an observa- patients or surrogates agreed with these recommendations, al-
tional study of the withholding and withdrawal of life support though reaching such agreement frequently required several
from critically ill patients in two intensive care units (ICUs) in days. Support was continued for those few patients or surro-
hospitals affiliated with the University of California, San Fran- gates who insisted upon it. For the other patients, cardiopul-
cisco (UCSF). We did so because we believed that life-sustain- monary resuscitation (CPR), mechanical ventilation, and va-
ing therapy was frequently forgone in our ICUs, and that this sopressors were the therapies most frequently withheld and
practice was ethically acceptable and clinically desirable if it withdrawn. Of those patients who were not brain dead, 70%
reduced unnecessary suffering in patients who were unlikely received analgesics and sedatives as other care was discontin-
to benefit from further treatment. We also hoped that physi- ued. Although our observations were limited to two institu-
cians elsewhere might become more actively involved in man- tions affiliated with UCSF, we speculated that forgoing life-
aging the deaths of their patients after reading about our ex- sustaining therapy would become more common throughout
perience. We learned and subsequently reported (1) that the United States because policy makers and the public were
withholding and withdrawal of life support occurred in 51% of increasingly concerned about the uncertain benefits, the possi-
the patients who died in our ICUs during a 1-yr period in 1987 ble harm, and the high cost of critical care.
and 1988, a larger percentage than we anticipated at the time. Five years after our initial study, we performed a follow-up
Physicians whom we interviewed in this study recom- study in the same two ICUs. We found and then reported (2)
mended that life-sustaining therapy be forgone primarily be- that forgoing of life-sustaining therapy preceded death in 90%
cause their patients were dead by neurologic criteria or had a of patients who died in the ICUs during a 1-yr period in 1992
poor prognosis as determined by the physicians’ clinical expe- and 1993. Death according to neurologic criteria, and a poor
rience and knowledge of the medical literature. All but 2% of prognosis, expressed in terms of futility, were again the rea-
sons cited by physicians for recommending that life support be
withheld or withdrawn. In 56% of cases in which futility was
(Received in original form May 2, 1997 and in revised form July 21, 1997) cited, physicians judged that patients had “absolutely” no
Supported by institutional funds of the University of California, San Francisco. chance to leave the ICU alive. However, in 44% of cases, phy-
Correspondence and requests for reprints should be addressed to John M. Luce, sicians applied the concept of futility despite an estimate of
M.D., Division of Pulmonary and Critical Care Medicine, San Francisco General ICU survival of between 1% and 50% (median: 5%). Again,
Hospital, 1001 Potrero Avenue, Room 5K1, San Francisco, CA 94110. almost all patients or surrogates agreed with physician recom-
Am J Respir Crit Care Med Vol 156. pp 1715–1718, 1997 mendations to limit care, and care was provided for patients or
1716 AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE VOL 156 1997

surrogates who requested it. However, as was not the case in taining therapy at UCSF is generally acceptable and desirable.
our previous study, do-not-resuscitate (DNR) orders were Nevertheless, I often ask myself whether we have gone too far
written without the consent of the surrogates of several pa- in recommending that life support be withheld or withdrawn
tients for whom other kinds of life support had been contin- from some of our patients for whom further care would not be
ued. We considered the writing of these DNR orders justifi- futile in a stringent sense of the word. I also wonder whether
able, and we questioned whether some physicians were not we have been too zealous in promoting these practices in
too passive in permitting the exercise of technology to persist other institutions, particulary because in the process we have
for so long in hopeless cases. challenged patient autonomy by suggesting that care could be
In a subsequent article (3), I argued that physicians do not forgone in certain circumstances without the agreement of pa-
have a responsibility to provide futile or unreasonable care tients or their surrogates. Challenging patient autonomy prob-
even if a patient or surrogate insists on it. My argument was ably was important at one point in the evolution of our profes-
based on the belief that physicians need not merely furnish all sion’s view of limiting care for certain critically ill patients,
services asked of them, but that they have a professional obli- because physicians were just becoming comfortable with the
gation and a social sanction to provide only therapies that are ideas that not all demands upon them must be met and that
beneficial, to avoid harm, and to allocate medical resources life, especially nonsentient life, need not be supported at all
wisely. Although physician pursuit of beneficence, nonmalefi- cost. Nevertheless, I sense that many of my colleagues in San
cence, and distributive justice may conflict with patient auton- Francisco and other cities have realized that we must be very
omy, such conflict has not prevented physicians from acting cautious in exercising our influence, if not authority, over pa-
unilaterally in limiting life-sustaining treatment. This practice tients and their surrogates in prompting the forgoing of life-
was demonstrated by Asch and colleagues (4), who surveyed sustaining therapy in the ICU.
members of the Critical Care Section of the American Tho- Some of the colleagues I refer to have been members of
racic Society (ATS) in 1990 and found that over 80% of re- one or both of two bioethics task forces established by the
spondents had withheld or withdrawn life support on the basis ATS in recent years. The first task force was convened in 1989
of futility. Many physicians reported forgoing care without the and chaired by Paul N. Lanken, M.D. After considerable de-
consent or knowledge of patients and surrogates, and some re- liberation, it recommended that patient requests to withhold
ported doing so over patients’ or surrogates’ objections. or withdraw life support should be respected, and that surro-
In 1994, Thomas J. Prendergast, M.D., and I asked physi- gates should be identified to help make decisions about life-
cians in 167 institutions associated with fellowship programs in sustaining therapy when patients lack decision-making capac-
Pulmonary and Critical Care Medicine and just Critical Care ity. In addition, however, the task force stated that a life-sus-
Medicine to classify all deaths that occurred in their ICUs over taining medical intervention can be limited without the con-
a 6-mo period into one of five defined categories (5). With 126 sent of patient or surrogate when the intervention is judged to
ICUs at 107 of the 167 sites (64%) reporting, we amassed data be futile, and that health-care institutions have a responsibility
for more than 71,000 admissions and some 6,100 deaths (9% to promote ethically sound decision making regarding life-sus-
overall mortality rate): 25% of deaths followed full ICU care taining therapy. Included among these responsibilities are writ-
and failed CPR, 23% of deaths occurred in patients who re- ten policies defining the circumstances in which it is accept-
ceived full ICU care excluding attempted CPR, 13% of deaths able to withhold or withdraw life support, and those in which
occurred in patients who had some form of life support other there may be limits to a patient’s or surrogate’s directives ei-
than CPR withheld prior to their deaths, 33% of deaths fol- ther to forgo or to request life-sustaining interventions. The task
lowed the withdrawal of life support, and 6% of patients were force’s recommendations, which were adopted by the ATS
brain dead. When the first and last categories were totaled, Board of Directors in 1991, were subsequently published in
69% of the ICU deaths were found to have followed the for- the American Review of Respiratory Diseases (7) and the An-
going of CPR and other forms of life-sustaining therapy. nals of Internal Medicine (8). They remain the boldest state-
At first glance, the results of this recent study suggest that ment by any professional medical society of which I am aware
withholding and withdrawal of life support have become so on the prerogatives of physicians and health-care institutions
commonplace in American ICUs that they are de facto stan- in restricting the application of critical care.
dards of care. Nevertheless, significant variability was found In 1993, a second ATS Bioethics Task Force was convened
among surveyed ICUs in terms of mortality rate (from 2% to under the leadership of Dr. Lanken and Peter B. Terry, M.D.,
45%), failed CPR (from 4% to 79% of deaths), and willing- to develop recommendations for the fair allocation of ICU re-
ness to withdraw support (from 0% in six ICUs comprising ap- sources. Much of this second task force’s first meeting, in De-
proximately 2,700 admissions and 200 deaths to 71% in other cember 1993, was devoted to a discussion of how President
ICUs). This variability could not be explained by differences Clinton’s plans for health-care reform would affect ICU re-
in the kind (e.g., medical versus surgical), size, or geographic source allocation. Several articles were distributed as back-
location of the ICUs. Some of it might have been due to differ- ground reading, including publications on medical triage and a
ences in the severity of illness of patients in the ICUs, which draft of an article I had prepared in advance of the meeting. In
we did not measure. However, most of the variability proba- this draft and in the Clinical Commentary (9) that was subse-
bly related to differences in the beliefs and behavior of physi- quently published in the American Journal of Respiratory and
cians, as has been suggested by another study (6). Whatever Critical Care Medicine, I argued that the President’s goals of
its explanation(s), the variability precludes the conclusion that cost containment and universal access to basic health care
true practice standards exist in the area of forgoing life-sus- could only be realized by restricting the use of marginally ben-
taining therapy, although such forgoing clearly has become eficial services, including some ICU care, and by balancing
common. It also raises the question of how to regard outliers physicians’ unrestrained advocacy for individual patients with
at both ends of the clinical spectrum: those ICUs in which a proportional advocacy for the entire population. I do not
withholding and withdrawal of life support are customary and know whether the task force members accepted my ideas at
those in which they occur rarely if at all. the time. However, I remember clearly that the task force con-
As a physician in an ICU at the “customary” end of the sidered rationing of ICU services likely, and perhaps desirable
spectrum, I still believe that our approach to forgoing life-sus- if marginally beneficial ICU care was restricted, and wanted to
Clinical Commentary 1717

provide an ethical and practical framework for such rationing Curtis and associates (13) have demonstrated that even
if and when it was required. when a quantitative and qualitative definition of futility is
More than 3 years have passed since that first meeting, and used, physicians may misunderstand the probability of sur-
the task force’s recommendations, which were adopted by the vival following an intervention such as CPR, and may fail to
ATS Board of Directors in March 1997, appear in the October determine what quality of life is acceptable to their patients.
1997 issue of the American Journal of Respiratory and Critical These authors require that quantitative futility be based on a
Care Medicine (10). Triage is mentioned in the recommenda- very low probability of survival, perhaps lower than 1%, and
tions, along with the idea that medically appropriate patients that the recommendation to limit care be preceded by a discus-
should be admitted on a first-come, first-served basis when de- sion of quality-of-life issues between physicians and patients
mand for ICU beds exceeds supply. The recommendation also or their surrogates. These requirements seem appropriate to
is made that marginally beneficial ICU care can be restricted me. I also believe that recommendations made after these re-
on the basis of high cost relative to benefit, but that decisions quirements are met need not bear any relationship to ration-
to limit care should be made only by explicit institutional poli- ing or resource allocation; they merely reflect the physician’s
cies that reflect a social consensus in support of such limita- obligation to seek benefit and do no harm.
tions. Other recommendations are that patients should have In most instances, patients and surrogates accept physician
equal access to ICU care regardless of their personal and be- recommendations to limit care if sufficient time is afforded
havioral characteristics, that ICU care should be equally avail- them to consider these recommendations (1, 2). Nevertheless,
able regardless of patients’ ability to pay, and that patients and on rare occasions, they insist that care be continued, and can-
the public should be informed of financial incentives for limit- not be dissuaded from this position, presumably because they
ing ICU care by physicians or health-care institutions. Among disagree with the prognosis we have provided them. When this
the basic principles underlying these strong recommendations occurs, I believe that we should not withhold or withdraw life
are that each individual’s life is valuable, and equally valuable support on the sole basis of our personal notions of futility,
with those of others, and that access to ICU care, when medi- but instead should rely on institutional or multiinstitutional
cally appropriate, is an essential part of a basic package of futility policies. Although their input is desirable, administra-
health-care services that should be available to all. tors, even if they are physicians, should not be allowed to im-
Once again, the ATS Bioethics Task Force has come up pose futility policies that serve primarily to protect their busi-
with a bold statement, but it is not what I would have pre- nesses’ bottom lines. Rather, the policies should be developed
dicted 4 years ago. What accounts for the statement’s deempha- by practicing physicians, nurses, and other health profession-
sis on rationing critical-care services and its emphasis on secur- als in concert with patients, community leaders, and, when ap-
ing equal access to the ICU? Although the cochairmen and other propriate, participants in managed-care organizations. This
task force members may offer other explanations, I suspect approach would replace payors in now tripartite physician–
that they would agree that changes in health care in the United patient relationships with representatives of either the com-
States have inspired, if not mandated, the ATS’s strong posi- munity in general or of the subscribers in an individual health
tion in support of the right of all patients to receive medically plan. Futility policies crafted in such a fashion should specify
appropriate ICU care. President Clinton’s goal of universal which ICU interventions are beneficial and which are not.
access to health services has not been realized since the task They should address potential conflicts of interest issues be-
force first met; in fact, more Americans lack health insurance tween physicians who are paid on a capitated basis and the pa-
today than ever before. Managed care, which many hoped tients for whom they care. Such policies should also be avail-
would contain costs without compromising quality, has be- able in advance to persons who could use such information in
come broadly identified as a tool for increasing corporate prof- selecting their care from a particular hospital, medical group,
its by denying medical services. Whether this is true or not, the or health-care plan.
traditional physician–patient relationship has been increas- One model of a multiinstitutional policy (14) on futility has
ingly complicated by the presence of a third party: the payor been developed by representatives of major hospitals in Hous-
that seemingly seeks to restrict access to health care. As a re- ton, Texas. Under this policy, when a physician determines
sult, patients have become increasingly suspicious of their that an intervention is inappropriate but a patient or surrogate
health-care institutions and of those physicians who are re- insists that it be provided, the physician must first discuss the
warded for restricting access. In this environment, it is entirely reasons for his or her judgment, the possibility of transferring
appropriate that the ATS Bioethics Task Force and the ATS care without abandoning the patient, and alternative treat-
Board of Directors have taken their stand. ments such as palliative care. If agreement is not reached at
In keeping with both ATS statements, in light of the cur- this point, the physician must obtain a second opinion from
rent health-care environment, and in accord with my own another physician who has examined the patient, and must
changes in sentiment, I propose that physicians reconsider cer- present the case before an institutional review body. If the re-
tain aspects of how they withhold and withdraw life support view body affirms that the intervention is inappropriate, the
from the critically ill. I still believe that we can and should rec- intervention is terminated, a plan of alternative care is estab-
ommend that life-sustaining treatment be forgone if we con- lished, and interinstitutional transfer of the patient to another
sider it futile because the patient’s prognosis is poor. Futility physician, in order to provide the intervention that has been
in this context need not be defined in narrow physiologic deemed inappropriate, is not allowed. On the other hand, if
terms, such as an inability to raise the blood pressure by ad- the review body finds that the intervention is appropriate, or-
ministering vasoactive agents. Rather, it should be seen as em- ders to terminate the intervention are not recognized as valid
bracing a combination of quantitative (e.g., the probability of without patient or surrogate assent.
survival following a given medical intervention) and qualita- The Houston collaborative policy is limited in that it was
tive (e.g., survival should include an acceptable quality of life) developed by institutional representatives without explicit
dimensions, as advocated by Schneiderman and colleagues community involvement, as its authors (14) acknowledge. The
(12). This definition of futility is close to the concept of “inad- legal standing of such a policy is also uncertain, in light of
visable” treatments advanced by the Ethics Committee of the court decisions such as that concerning Baby K (15), wherein
Society of Critical Care Medicine (11). the court mandated continuation of life support for an anen-
1718 AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE VOL 156 1997

cephalic infant in response to parental requests; or that involv- 3. Luce, J. M. 1995. Physicians do not have a responsibility to provide futile
ing Helen Wanglie (16), in which the court refused to appoint or unreasonable care if a patient or family insists. Crit. Care Med. 23:
760–766.
a surrogate other than the patient’s husband who might agree
4. Asch, D. A., J. Hansen-Flaschen, and P. N. Lanken. 1995. Decisions to
to a limitation of the patient’s care; and that of Catherine Gil- limit or continue life-sustaining treatment by critical care physicians in
gunn (17), whose physicians were absolved of liability after the United States: conflicts between physicians’ practices and patients’
they withdrew life support over the objections of the woman’s wishes. Am. J. Respir. Crit. Care Med. 151:288–292.
daughter. Case law is thus incomplete and contradictory in 5. Prendergast, T. J., and J. M. Luce. 1996. A national survey of withdrawal
this area, and the medical profession cannot wait for such law of life support from critically ill patients (abstract). Am. J. Respir. Crit.
Care Med. 153:A360.
to develop before clarifying its own values and methods for re-
6. Cook, D. J., G. H. Guyatt, R. Jaeschke, J. Reeve, A. Spaniek, D. King,
solving conflict between patients and providers. D. W. Molloy, A. Willan, and D. L. Streiner, for the Canadian Critical
Furthermore, it is not clear whether the Houston collabo- Care Trials Group. 1995. Determinants in Canadian health care work-
rative futility policy is workable in the ICU environment, ers of the decision to withdraw life support from the critically ill. J.A.M.A.
where decisions must often be made quickly, or that physi- 273:703–708.
cians will follow it rather than openly or surreptitiously limit- 7. American Thoracic Society Bioethics Task Force. 1991. Withholding and
withdrawing life-sustaining therapy. Am. Rev. Respir. Dis. 144:726–731.
ing care on their own. Nevertheless, the policy represents a
8. American Thoracic Society Bioethics Task Force. 1991. Withholding and
commendable approach in balancing patient autonomy and withdrawing life-sustaining therapy. Ann. Intern. Med. 115:478–485.
professional and institutional integrity, and its very presence 9. Luce, J. M. 1994. The changing physician–patient relationship in critical
seems to have prompted the resolution of disputes before insti- care medicine under health care reform. Am. J. Respir. Crit. Care Med.
tutional review bodies are required (B. A. Brody, personal com- 150:266–270.
munication, April 25, 1997). By shifting decision-making from 10. American Thoracic Society Bioethics Task Force. 1997. Fair allocation
of intensive care unit resources. Am. J. Respir. Crit. Care Med. 156:
the patient, physician, and payor to a group level, futility poli-
1282–1301.
cies such as that adopted in Houston should move us closer to 11. Ethics Committees of the Society of Critical Care Medicine. 1997. Con-
a social consensus on the issues of what is truly beneficial and sensus statement of the Society of Critical Care Medicine’s Ethics
how limited resources should be allocated. In the process, they Committee regarding futile and other possibly inadvisable treatments.
should help restore public confidence in physicians and health- Crit. Care Med. 25:887–891.
care institutions, a confidence that is severely threatened today. 12. Schneiderman, L. J., N. S. Jecker, and A. R. Jonsen. 1996. Medical futil-
ity: response to critiques. Ann. Intern. Med. 125:669–674.
13. Curtis, J. R., D. R. Park, M. R. Krone, and R. A. Pearlman. 1995. Use of
the medical futility rationale in do-not-attempt-resuscitation orders.
References J.A.M.A. 273:124–128.
1. Smedira, N. G., B. H. Evans, L. S. Grais, N. H. Cohen, B. Lo, M. Cooke, 14. Halevy, A., and B. A. Brody. 1996. A multi-institution collaborative policy
W. P. Schecter, C. Fink, E. Epstein-Jaffe, C. May, and J. M. Luce. 1990. on medical futility. J.A.M.A. 276:571–574.
Withholding and withdrawal of life support from the critically ill. N. 15. In the matter of Baby K, 16F3d 590 (4th Cir, 1994).
Engl. J. Med. 322:309–315. 16. In re: Helen Wanglie. Fourth Judicial District (Dist. Of Ct. Probates Ct.
2. Prendergast, T. J., and J. M. Luce. 1997. Increasing incidence of withhold- Div.) Px-91-280, Minnesota, Hennepin County.
ing and withdrawal of life support from the critically ill. Am. J. Respir. 17. Civetta, J. M. 1996. Futile care or caregiver frustration? A practical ap-
Crit. Care Med. 155:15–20. proach. Crit. Care Med. 24:346–351.

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