Book Review

Wrong Medicine: Doctors, patients, and futile treatment

N Engl J Med 1996; 334:60-61January 4, 1996

Article

Wrong Medicine: Doctors, patients, and futile treatment
By Lawrence J. Schneiderman and Nancy S. Jecker. 200 pp. Baltimore, Johns Hopkins University Press, 1995. $25.95. ISBN: 0-8018-5036-3

About the debate over futility, not a few have commented that the debate itself is futile. We will never establish an objective, uniform definition, so we should not try. Schneiderman and Jecker do not agree with this stance. In their book they issue a clarion call to physicians to take the lead in defining medical futility as a matter of professional duty. Rejecting definitions of futility based on the patient's goals alone, on prolonging noncognitive life, or on treatment that has only a physiologic effect, the authors offer their own definition of medical futility: “any effort to provide a benefit to a patient that is highly likely to fail and whose rare exceptions cannot be systematically produced.” Noting that their definition encompasses a quantitative component (the authors write that “a treatment should be regarded as medically futile if it has not worked in the last 100 cases”) and a qualitative component (the treatment must benefit the patient, which can mean different things for different patients and in different locations), the authors urge physicians to endorse such a definition and obtain societal support for it. They list three possible positions, once a reasonably uniform definition has been established. Physicians could simply be allowed to refrain from giving futile treatment, they could be encouraged but not obliged to refrain, or they could be obliged to refrain. The authors favor (although not emphatically) the last position. For my part, I hope the profession will settle on, and not go beyond, the middle position.

A recent case illustrates the importance of adopting the middle position. In a conversation about advance planning, a young man with AIDS declared his wish for all possible interventions, citing his conviction that death occurs with the cessation of the heartbeat and loss of breath. A recent experience with a loved one had convinced him of the value of even irreversibly unconscious life. His proxy and family agreed; his physicians did not. After extensive medical intervention and the patient's loss of consciousness, the physicians persuaded the proxy that enough was enough. The patient was weaned from the respirator and not reintubated. We stopped short of coercion, but I still worry about that. One justification we offered was that no physician in the institution where the patient was treated, or probably elsewhere, would have considered more treatment good medicine.

In fact, the empirical data suggest the contrary. Maybe it would have been hard to find a physician who would have accepted responsibility for the care of this underinsured, unconscious patient, but it probably would not have been impossible to find a physician who believed that continued intervention was the right course of action. Values vary among physicians, as well as among patients and the public, and a substantial minority of physicians and patients believe that unconscious human life is sacred and should be maintained without regard to cost (and very little would be saved anyway).

The majority may insist that such extreme views reflect immaturity or fear and avoidance and are therefore invalid. But the majority must not too readily override the minority. Of course, the views of the majority are important. These views, on the part of both physicians and patients, should be used as the groundwork for a definition of medical futility. It probably would have helped the process of persuasion in the above case if we could have told the patient how carefully the profession had listened to people and if we could have said exactly what large percentage of patients believe continued intervention is incorrect and what large proportion of physicians would discontinue treatment. It probably would have helped to be able to say that because of these data, professional and institutional guidelines recommend the discontinuation of treatment.

The question is how patients with dissenting views are to be treated when their physicians' views are those of the majority — with the recognition that it is the patient's life, and often his or her perceived relation to eternity, that is on the line. After all, America strongly values the freedom to dissent on the basis of conscience, and physicians are notorious for imposing unwanted values on patients. If we adopt the authors' middle position — encouraging the withholding of futile intervention — we will be doing our duty of affirming our professional values. If we go further and refuse to provide that which the profession considers futile but the patient earnestly believes is right, we will be engaging in coercion and domination. Broad-based and local guidelines alike should allow for patients' conscience-based dissenting views whenever possible.

This concern notwithstanding, it should be clear that the authors of Wrong Medicine have made an important contribution to the debate about futility. They are right that we need to distinguish effect from benefit and the issue of rationing from that of futility. We do need to recognize the motives that drive physicians, patients, and the public to more and more intervention. We do need to assume professional leadership. We do need to deliberate with individual patients and with the community and public at large (I would urge that this be done to define futility rather than to gain support for a prior profession-based definition, although that is a different point). But when all this has been done, let us be sure that we have not used definitions of medical futility to impose our values, when instead we should have examined patients' values, listened intently to our individual patients, responded carefully, and advocated for these unempowered people, which is our charge. Our professional duty to define medical futility does not outweigh our professional duty to advocate for the medical rights of the terminally ill.

Linda L. Emanuel, M.D., Ph.D.
Harvard Medical School, Boston, MA 02115