Overview

Robert Burt has written a provocative and disturbing book that should be read by all professionals involved in end-of-life care. He suggests that dying patients, their families, and their physicians are "all vulnerable to unruly psychological forces unleashed by the imminent prospect of death" and that self-determination by patients is an inadequate safeguard against the many surrounding "forces of evil." He uses the legal and clinical examples of physician-assisted suicide, abortion, and capital punishment to illustrate his thesis. Although I disagree with some of his conclusions and examples, the central themes deserve serious consideration. His first theme is that all persons facing end-of-life decisions are inherently ambivalent, with mixed emotions and motivations. Therefore, the notion of rational self-determination is an illusion in this context. However, the inherent limitations of rational decision making are relevant to all major medical decisions, not just those at the end of life. Because we are not purely rational beings, informed consent is always influenced by subjective and emotional factors. Yet it does not necessarily follow that informed consent and the self-determination of patients should be abandoned. Choice by individual patients, in and of itself, certainly does not preserve patients' autonomy any more than it encourages true informed consent. Clearly, the best end-of-life decisions are made as a result of the collaboration and mutual informing of the patient, the patient's family, and the physicians, each sharing his or her own expertise to help the patient make the best possible decision (often in the worst possible circumstances). Burt's second theme is the danger of secrecy, especially with regard to complex decisions that may give rise to ambivalence. This danger is particularly worrisome when the illusion of rationality is proposed as a safeguard. For example, decisions about do-not-resuscitate (DNR) orders used to be the exclusive province of physicians, until we learned that this secretive process was applied inconsistently and that physicians were unconsciously influenced by such factors as race, sex, and age. A more open, regulated practice was then developed, involving informed consent and creating additional challenges by putting more of this medical decision into the hands of patients. DNR decisions are still approached with ambivalence and are often influenced by irrational forces, but an open process ultimately offers better protection against nefarious forces than does overly simple reliance on patients' self-determination or physicians' beneficence. The third theme is that death has an "inherent aura of wrongdoing" and that it is "inherently evil." From this ominous perspective, considering death as a natural, inevitable part of the life cycle deprives it of its gravity and creates an illusion of moral neutrality. Death, it is argued, should not be accepted and certainly should not be chosen or consciously assisted. Extreme individual suffering should only be addressed by acts that involve "structured ambivalence" and not by acts that would explicitly and consciously hasten death. Burt further suggests that the psychological and spiritual toll taken on physicians by the regular confrontation of extremes of suffering and death explains some of the dark sides of medical practice, such as the seemingly irrational undertreatment of pain and the overuse of invasive medical technology in dying patients. He uses a selective reading of Freudian psychoanalysis to argue that physicians may punish patients in order to meet some unconscious psychic need to inflict added suffering. In support of this argument, he cites a study in which physicians maintained the use of paralytic drugs when they were withdrawing life support. Their motivation, in his view, was in part to protect the staff and family from witnessing the patient's struggle to breathe, but also, unconsciously, to punish the dying patient. I find the latter interpretation far-fetched. My belief is that the primary motivation for maintaining paralysis would be to help the dying patient, who is heavily sedated, to die more comfortably and quickly. Conversely, I would argue that one reason that paralytic drugs are sometimes discontinued in dying patients when life support is being withdrawn is so that ambiguity is injected back into the act, rather than because of any notion regarding protection of patients from suffering. In fact, dying patients are frequently undersedated when ventilators are being withdrawn, in order to create the kind of ambiguity that Burt is encouraging. Several examples from the broader field of end-of-life care also require the illusion of moral clarity in the face of ambiguity. For example, the rule of double effect requires that the sole intention of physicians be to relieve suffering, and that death, even when inevitable and desired by the patient, can only be foreseen and not intended by the physician. When a patient is ready to die and accepts the sedation that comes with increasing doses of pain medication, how can it be said that death is completely unintended? Similarly, when a patient is sedated to the point of unconsciousness to escape awareness of suffering and then is not provided with food or fluids, can it be realistically said that assistance in causing death is entirely unintended? Should not the patient and family be informed that death will be inevitable once the process has been started? The huge variation among hospice programs in the incidence of terminal sedation (ranging from 0 to 50 percent of deaths) should give us pause about the desirability of "structured ambivalence." One could argue that physician-assisted suicide is a much more ambiguous act than terminal sedation. After all, the physician's intent in prescribing the medication might be in part to help with sleep or to provide the reassurance that the patient could escape, but with the hope that he or she will choose not to do so. Thus, Burt's approach of creating "structured ambivalence" also carries the potential for self-deception and for manufactured ambiguity when clarity and honesty would better serve patients and families. In Death Is That Man Taking Names, Burt reminds us that irrational forces come into play in all end-of-life practices and that we deny them at peril to our patients and our profession. He persuasively argues that processes governing such practices should be open, that those involved should be accountable, and that standards should not be so unrealistic and idealized as to force the true complexity of these decisions to go unacknowledged. Although Burt applies his analysis mainly to physician-assisted suicide, abortion, and capital punishment, it has broad applicability to other aspects of end-of-life care.Timothy E. Quill, M.D.Copyright © 2003 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.--This text refers to an out of print or unavailable edition of this title.