Controversies in the Determination of Death
The President's Council on Bioethics
As we noted in the Preface and in Chapter One, although this report addresses several controversies in the determination of death, including those arising in the context of controlled DCD, its primary focus is on the debates surrounding the neurological standard for the determination of death. In its deliberations, the President's Council on Bioethics did, indeed, discuss controlled DCD and the traditional cardiopulmonary standard; it also voiced concerns about the problem of ensuring adequate end-of-life care for the patient-donor. The Council's principal concern, however, was with the question, Does a diagnosis of “whole brain death” mean that a human being is dead? In other words, does the neurological standard rest on a sound biological and philosophical basis?
Among members of the President's Council on Bioethics, the prevailing opinion is that the current neurological standard for declaring death, grounded in a careful diagnosis of total brain failure, is biologically and philosophically defensible. The ethical controversies explored in this report were first raised for the Council during its inquiry into organ transplantation: as most deceased organ donors have been declared dead on the basis of the neurological standard, questions about its validity have an obvious relevance for organ procurement. The Council concluded that, despite that connection, the two matters—determining death and procuring organs—should be addressed separately. More precisely, questions about the vital status of neurologically injured individuals should be taken up prior to and apart from ethical issues in organ procurement from deceased donors.
Two such questions must be posed and answered in light of certain clinical and pathophysiological facts and in light of the competing interpretations of those facts. First, are patients in the condition of total brain failure actually dead? And, second, can we answer the first question with sufficient certainty to ground a course of action that treats the body in that condition as the mortal remains of a human being? Most members of the Council have concluded that both questions can and should be answered in the affirmative. They reaffirm and support the well-established dictates of both law and practice in this area.
Many members of the Council, however, judge that affirmative answers to these questions must be supported by arguments better than and different from those offered in the past. Until now, two facts about the diagnosis of total brain failure have been taken to provide fundamental support for a declaration of death: first, that the body of a patient with this diagnosis is no longer a “somatically integrated whole,” and, second, that the ability of the patient to maintain circulation will cease within a definite span of time. Both of these supposed facts have been persuasively called into question in recent years.
Another argument, however, can be advanced to support the declaration of death following a diagnosis of total brain failure. It is one that many members of the Council find both sound and persuasive, for it appeals to long recognized facts about the condition of total brain failure, while doing so in a way that is both novel and philosophically convincing. According to this argument, the patient with total brain failure is no longer able to carry out the fundamental work of a living organism. Such a patient has lost—and lost irreversibly—a fundamental openness to the surrounding environment as well as the capacity and drive to act on this environment on his or her own behalf. As described in Chapter Four, a living organism engages in self-sustaining, need-driven activities critical to and constitutive of its commerce with the surrounding world. These activities are authentic signs of active and ongoing life. When these signs are absent, and these activities have ceased, then a judgment that the organism as a whole has died can be made with confidence.
However, another view of the neurological standard was also voiced within the Council. According to this view, there can be no certainty about the vital status of patients with total brain failure; hence, the only prudent and defensible conclusion is that such patients are severely injured—but not yet dead—human beings. Therefore, only the traditional signs—irreversible cessation of heart and lung function—should be used to declare a patient dead. Also, according to this view, medical interventions for patients with total brain failure should be withdrawn only after they have been judged to be futile, in the sense of medically ineffective and non-beneficial to the patient and disproportionately burdensome. Such a judgment must be made on ethical grounds that consider the whole situation of the particular patient and not merely the biological facts of the patient's condition.i Once such a judgment has been made, interventions can and should be withdrawn so that the natural course of the patient's injury can reach its inevitable terminus. Only after this process has occurred and the patient's heart has stopped beating, is there a morally valid warrant to proceed with such steps as preparation for burial or for organ procurement.
With this report, the President's Council on Bioethics seeks to shed light on a matter of ongoing ethical and philosophical controversy in contemporary medicine. Knowing when death has come, along with what can and should be done before and after it has arrived, has always been a problem for humankind, to one degree or another. But the nature and significance of the problem have changed over time, especially in the wake of technological advances that enable us to sustain life, or perhaps just the appearance of it, indefinitely. Given these changes and others that are yet to come, the Council believes that it is necessary and desirable to re-examine our ideas and practices concerning the human experience of death in light of new evidence and novel arguments. Undertaken in good faith, such a re-examination is a responsibility incumbent upon all who wish to keep human dignity in focus, especially in the sometimes disorienting context of contemporary medicine.
i. This understanding of medical futility has been developed in several papers by Edmund D. Pellegrino, the Council's chairman. In these (as well as other) works, Pellegrino argues that clinical judgments of the futility of a given therapeutic intervention involve a “judicious balancing” of three factors: (1) the effectiveness of the given intervention, which is an objective determination that physicians alone can make; (2) the benefit of that intervention, which is an assessment that only patients and/or their surrogates can make; and (3) the burdens of the intervention (e.g., the cost, discomfort, pain, or inconvenience), which are jointly assessed by both physicians and patients and/or their surrogates. For example, see E. D. Pellegrino, “Decisions to Withdraw Life-Sustaining Treatment: A Moral Algorithm,” JAMA, 283, no. 8 (2000): 1065-7; and E. D. Pellegrino, “Futility in Medical Decisions: The Word and the Concept,” HEC Forum, 17, no. 4 (2005): 308-18.