Controversies in the Determination of Death
The President's Council on Bioethics
In this report, our fundamental question has been, Are there adequate biological and philosophical reasons for considering patients who have suffered total brain failure to be deceased human beings? We have sought to respond to this question in a careful, systematic fashion. In Chapter Two, we began our re-examination of the neurological standard for death by clarifying key terms. In Chapter Three, we described the condition of “total brain failure” (commonly called “brain death” or “whole brain death”), and we explored certain clinical and pathophysiological findings that were unavailable to the authors of earlier public accounts of that condition. In Chapter Four, we presented two possible answers to the central question of the report: first, a position that rejects the neurological standard for death on the grounds that it is not possible to know with certainty that an individual with total brain failure is truly dead; and second, a position that defends the neurological standard, arguing that it is possible to know that death has occurred in such cases. Also in Chapter Four, we sought to support this second position with a novel—and, we think, more secure—rationale. Each of the two positions has implications for policy and practice, especially with regard to organ procurement. Here in Chapter Five, we offer an analysis of these implications.
I. Rejecting the Neurological Standard: The Implications of Position One
The neurological standard for death is a well-entrenched standard, having been enshrined in law and applied in medical practice for more than two decades. To conclude now that this standard is flawed and ultimately indefensible would have serious repercussions, especially for the policy and practice of organ procurement. No patient whose heart continues beating (and whose vital organs thus remain healthy) could be declared dead; there would be no legally recognized “heart-beating cadavers.” In response to such an altered approach, one of two paths could be followed: Either the link between death and eligibility for donation could be severed, or the law could be fashioned so that vital organs are only procured from non-heart-beating donors. Both of these possible paths require further elaboration.
A. Severing the Link Between Death and Eligibility for Organ Donation
The first path would entail weakening or abandoning the so-called “dead donor rule.” This could be done in such a way that the same patients who are currently designated as heart-beating donors could continue to be so designated. But they would not be seen as dead in the eyes of the law; they would instead be described as living but “heart-beating-donation-eligible.” Two steps would be required to accomplish this change.
One step would be to revise the state laws pertaining to the determination of death so that the only recognized standard would be the traditional cardiopulmonary standard. The law would then declare that only those individuals who have suffered an irreversible loss of cardiopulmonary function (spontaneous or assisted) are dead.
The other step would be to revise the anatomical gift acts that are in effect in the various states. These laws specify how individuals can express their wishes regarding organ donation if the circumstances of their death make them medically eligible. Currently, these laws uniformly stipulate that gifts of tissue, organs, or whole bodies should take effect “upon or after death.”i With the suggested revision, “upon or after death” would be changed to “upon or after the point at which donation eligibility is reached.” And “donation eligibility” would be defined as “the point at which, according to accepted medical standards, an individual has suffered irreversible cessation of all functions of the entire brain, including the brainstem.” In other words, the language currently found in the various determination of death acts (which are modeled on the UDDA), would be transferred to the anatomical gift acts, and as a result, a patient would not need to be declared dead in order to be declared eligible for designation as a heart-beating donor.
This solution would seem to preserve the integrity of the organ procurement system by maintaining the customary boundaries between those who can be used as organ donors and those who, on ethical grounds, must be protected from such use. Moreover, it would accomplish this while setting aside the dubious claim that either clinicians or policymakers know for certain where the line between life and death is.
Despite these attractions, however, this solution is deeply disturbing, for it embraces the idea that a living human being may be used merely as a means for another human being's ends , losing his or her own life in the process. For good reason, many recoil from the thought that it would be permissible to end one life in order to obtain body parts needed by another. For many observers, organ transplantation as practiced today is ethically defensible precisely because only those who are already dead are eligible to become donors. In sum, abandoning the “dead donor rule” would entail dismantling the moral foundations of the practice of organ donation.
This solution is worrisome on other grounds as well. Having created a category of still-living but “heart-beating-donation-eligible” individuals, we might have difficulty resisting pressure to expand the kinds of patients that could be included in that class. In fact, many who support moving away from the dead donor rule argue that such a step could be a boon to society by making more individuals available as heart-beating donors. If a patient need not be dead in order to be eligible for such life-ending organ donations, where would the ethical line be drawn? It has been suggested that the moral warrant for the practice could be supplied by ensuring that the would-be donor is “beyond harm.”1 In other words, the principle of non-maleficence, of “do no harm,” rather than the dead donor rule, would provide the needed ethical safeguards for procuring organs from the living—for example, from patients in persistent vegetative states or from infants with anencephaly.
Yet this proposal is both conceptually suspect and practically dangerous. What exactly does “harm” mean in this context, and how do we know who is beyond harm? Might there be a temptation to interpret the class of “patients who can still be harmed” more and more narrowly in order to increase the number of donation-eligible human beings? For very sound practical reasons, the Kantian prohibition against treating living human beings merely as means and not also as ends has been fundamental to the ethics of both biomedical research and clinical medicine, at least since the promulgation of the Nuremberg Code in 1947. If that principle is worth preserving, especially in the context of organ procurement, we would do better to restrict donation-eligibility to patients who have died, as determined by clinical tests for “total brain failure,” more commonly known as “whole brain death.”
B. Taking Vital Organs only from Non-Heart-Beating Donors (Controlled DCD)
In Chapter Six we shall more thoroughly explore the practice of controlled donation after cardiac death (controlled DCD), which is currently undergoing a resurgence. With this practice, organs are procured from non-heart-beating donors who have been declared dead in accordance with the traditional cardiopulmonary standard. For those who argue that patients with total brain failure cannot, with certainty, be declared dead, controlled DCD offers a viable alternative source for much needed human organs.
Today, controlled DCD is offered as an option to families when an injured relative does not qualify to be a heart-beating donor—that is, as an opportunity to combine the generous act of organ donation with the often painful decision to forgo life-sustaining treatment for a living, but close-to-death family member. A patient diagnosed with total brain failure is considered dead by today's legal standard, and therefore eligible for organ donation immediately; but for those who regard such a patient as a still living human being, controlled DCD would be the only ethical way for that patient's organs to be donated. From this perspective, an appropriate reform might be, not to abandon the dead donor rule, but to require that all injured patients for whom organ donation is contemplated become asystolic before allowing organ procurement surgery to begin.
Two objections have been lodged against this approach. The first has to do with the practical consequences of this approach for organ procurement: it is likely that far fewer organs of high quality would be recovered. Because organs procured from heart-beating donors are less subject to ischemic injury, the claim is often made that obtaining such organs is a key factor in successful transplantation, especially in terms of graft survival and patient survival. In other words, organs procured from donors who have been declared dead in accordance with the traditional cardiopulmonary standard are not usually as “healthy” as those procured from heart-beating donors, nor do they last as long or permit their recipients to live as long.
Plausible as this claim might sound, however, recent studies have put it in doubt it by showing that patient and graft survival rates (at one and five years) for kidneys taken from controlled DCD donors are comparable to the rates for kidneys from heart-beating donors. 2 The same cannot be said of livers obtained by controlled DCD; graft and patient survival rates for livers recovered from controlled DCD donors are not as good as the rates for livers from heart-beating donors.3 At this time, hearts, lungs, intestines, and pancreata are only rarely transplanted from patients whose hearts have stopped beating; thus, comparisons of these key rates are more difficult to make. In weighing these concerns about the comparative healthiness of organs from heart-beating and non-heart-beating donors, it is important to consider one possible result of restricting organ procurement to controlled DCD: such a restriction might well stimulate research into better methods of procuring and preserving organs and thereby lead to improvements in outcomes associated with organs from non-heart-beating donors.
A second objection raised against an exclusive reliance on controlled DCD as a means to procure organs concerns certain ethical and philosophical problems that we shall discuss in greater depth in Chapter Six. Here, it is important to mention that restricting organ donation to controlled DCD donors would inevitably intensify the demands on the physicians, nurses, and other health professionals responsible for such organ procurement. They would find it all the more challenging to responding, responsibly and compassionately, to concerns and needs for palliative care and family support while protecting potential donors from abuse. Such a restriction would also require wider acceptance of the idea that living individuals can and should be designated as organ donors prior to the removal of life support; in addition, the death of these donors (and the availability of their organs for transplant) would have to be more regularly declared in the expeditious way that this procedure requires.ii Thus enhanced public education, discussion, and deliberation would be crucial prerequisites to any expansion of the use of controlled DCD in the ways suggested here.
II. Affirming the Neurological Standard: The Implications of Position Two
If the facts and arguments explored in this report lead to the conclusion that the neurological standard of whole brain death is sound on biological and philosophical grounds, then there would be no need to change the current standard of practice. Organ procurement from donors declared dead in accordance with the neurological standard would be unaffected by such a conclusion. What would be gained by this exploration, however, is a clearer understanding of the medical facts and ethical arguments supporting the practice. We review the most important of these arguments here.
First, what we have called Position Two gives a fair hearing to, and addresses on their own terms, the challenges posed by advances in the clinical and pathophysiological understanding of “brain death.” To those who are troubled by doubts about the legitimacy of the neurological standard and the associated practices, Position Two should offer substantial reassurance as to the ultimate validity of the standard. To be sure, such doubts are neither entirely unwarranted nor easily dismissed. After the most serious sort of brain injury and a diagnosis of total brain failure, a patient's appearance may still engender considerable doubt as to whether he or she is dead or alive. Some of the body's systems may continue to work together in an integrated way, and it may be possible to sustain this level of functionality for an indeterminate amount of time. But such life-like appearances may fail to convey the true condition of the patient, a condition that is obscured by the artificial maintenance of breathing and circulation and the limited bodily integrity thus preserved. Many years of experience with total brain failure have revealed the truth of such a condition: the “brain-dead” patient will never recover the essential ability to interact with his or her environment that is characteristic of the living organism.
Second, a careful examination of the conceptual basis for declaring death in the midst of often confusing technological interventions invites deeper reflection on the moral obligations that we bear toward those who have crossed the threshold from life to death. Thirty-five years ago, William F. May used the phrase, “the newly dead,” to describe the bodies of those who still present the outward form of the living human beings they once were, even as mourning for their loss has already begun. As May wrote,
The cadaver is a kind of shroud that now masks rather than expresses the soul that once animated it. And yet—while the body retains its recognizable form, even in death, it commands a certain respect. No longer a human presence, it still reminds us of that presence which once was utterly inseparable from it.4
To realize that death has come—even in the midst of technological interventions—is to know that the time has come to think and to act in different ways toward the newly dead human being. It is time to pay the deceased our respects, to mourn their passing—and to do so in the presence of, and with careful regard for, their mortal remains. It is also time to withhold or to withdraw such treatments as would actually constitute mistreatment of the newly dead. Finally, depending on the wishes of the patient and the family, it may also be time to begin the procurement of organs for the morally defensible purpose of helping the sick.
This is, perhaps, the most valuable fruit of reflecting on the foundations of today's neurological standard for death and finding them basically sound: The death of a human being is recognized for what it is, and those who survive are enabled to accept that death with finality and to regard their loved one's mortal remains with respect.
1. R. D. Truog, “Is It Time to Abandon Brain Death?” Hastings Cent Rep 27, no. 1 (1997): 29-37; Truog, “Too Flawed to Endure,” 273-81; and S. J. Youngner and R. M. Arnold, “Philosophical Debates About the Definition of Death: Who Cares?” J Med Philos 26, no. 5 (2001): 527-37.
2. See M. D. Doshi and L. G. Hunsicker, “Short- and Long-Term Outcomes with the Use of Kidneys and Livers Donated after Cardiac Death,” Am J Transplant 7, no. 1 (2007): 122-9; J. T. Cooper et al., “Donation after Cardiac Death: The University of Wisconsin Experience with Renal Transplantation,” Am J Transplant 4, no. 9 (2004): 1490-4; and A. M. D'Alessandro et al., “Donation after Cardiac Death: The University of Wisconsin Experience,” Ann Transplant 9, no. 1 (2004): 68-71.
3. See Doshi and Hunsicker, “Short and Long Term Outcomes,” 122-9; P. L. Abt et al., “Survival Following Liver Transplantation from Non-Heart-Beating Donors,” Ann Surg 239, no. 1 (2004): 87-92; and D. P. Foley et al., “Donation after Cardiac Death: The University of Wisconsin Experience with Liver Transplantation,” Ann Surg 242, no. 5 (2005): 724-31.
4. W. May, “Attitudes Toward the Newly Dead,” Stud Hastings Cent 1, no. 1 (1973): 3.
i. The legality of donation from a healthy, living donor is not addressed by the anatomical gift acts. Yet the practice of living donation suggests a possible “middle course,” not explored in this report, which would permit the removal of a single kidney from a donor who is near death—just as it is permissible for an individual to give a single kidney while alive and healthy.
ii. The concerns of various sorts of health care providers about DCD practice were surveyed in this 2006 report: M. S. Mandell, et al., “National Evaluation of Healthcare Provider Attitudes Toward Organ Donation after Cardiac Death,” Crit Care Med 34, no. 12 (2006): 2952-8. A useful description of a conscientious program of palliative care for DCD donors and their families can be found in: C. M. Kelso, et al., “Palliative Care Consultation in the Process of Organ Donation After Cardiac Death,” J Palliat Med 10, no. 1 (2007): 118-26.