oxford handbook of bioethics

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Another problem with the higher brain definition is that while it could explain why patients who had lost all brain function were dead, its application would logically require declaring PVS patients dead. If brain-dead patients retain many signs usually associated with life, PVS patients retain even more. PVS patients, as mentioned earlier, have sustained severe damage to their cerebral hemispheres and are permanently unconscious but have fully functioning brain stems. Thus, they breathe without assistance. They even have periods each day when they open their eyes. The only technology they require is a feeding tube. Thus, to many observers, calling them dead is counterintuitive, regardless of how logical the argument that they are dead.

Public Confusion and Disagreement About the Definition and Criterion of Death

Bernat and his colleagues made an empirical claim (without any empirical evidence) that ‘what the layman actually means by death’ is loss of integrating function. However, empirical studies do not support their claim. When asked if a brain-dead patient was dead, 95 per cent of 195 physicians and nurses likely to be involved in organ procurement for transplantation said yes (Youngner et al. 1989). However, when asked why the patient was dead, 36 per cent gave loss of consciousness and cognition as the explanation while only 26 per cent chose loss of integrating capacity. Interestingly, 32 per cent gave answers such as ‘the quality of the patient’s life is unacceptable’ or ‘they will die soon no matter what you do’ — indications that they believed the patient was as good as dead, rather than dead. Moreover, fully 38 per cent of respondents believed that a patient in PVS was dead.

A more recent study of the general public had similar results. A survey of 1,351 randomly selected residents of the state of Ohio found that only 40.4 per cent personally believed that a brain-dead patient is dead, while 43.3 per cent thought they were ‘good as dead’ and 16.3 per cent thought they were alive (Siminoff et al. 2004). Similarly, to the health professionals in the earlier study, about 34 per cent of Ohio residents personally believed that a patient in PVS is dead.

The findings of the two studies hardly support Bernat’s contention that loss of integration is ‘what is commonly meant by death’. To the contrary, the studies demonstrate the persistence of a variety of personal beliefs about the definition of death, including the traditional loss of vital fluid flow. In addition, both studies found a considerable level of ignorance about factual matters related to death. Among health professionals, for example, only 35 per cent were able to identify correctly the legal and medical criteria for determining death. Among the general public, only one third knew that brain death was legal death in Ohio, 28 per cent mistakenly thought that brain-dead patients can hear, and nearly 60 per cent

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incorrectly thought that organs were retrieved from brain-dead patients after, not before, the ventilator is turned off.

This data suggests that, while brain death currently seems to be working as public policy, the public hardly has a monolithic view about what it means to be dead. Moreover, considerable confusion remains about the legal and clinical status of brain-dead patients.

Irreversibility: New Issues and New Debates

As discussed earlier, brain-dead patients provided transplanters with a valuable new source of organs. However, the increased supply of organs and the growing success of organ transplantation spawned an even greater demand. Today, there are over 80,000 people waiting for organs. As a result, the transplant community revisited the idea of taking organs from patients who died of cardio-respiratory arrest by devising a strategy for removing organs before they had suffered warm ischemic damage. The strategy, formerly called non-heart-beating donation, is now called donation after cardiac death (DCD) and works as follows (Arnold et al. 1995). Often, patients with devastating head injuries still retain enough brain function to preclude a diagnosis of brain death. Yet, the prognosis for recovery is nil and families want to discontinue ventilatory support. Sometimes they are disappointed that they cannot donate organs. DCD works as follows. Instead of discontinuing ventilatory support in the ICU, patients are taken to the operating room, where they are draped, their skin is disinfected, and they are otherwise prepared for surgery. The patients, already unconscious from their injuries, are carefully monitored with electrocardiogram machines and blood pressure censors. When all is ready, the ventilator is turned off. Deprived of oxygen, the heart soon stops. Depending on the protocol, death is declared between two and ten minutes later by cardiopulmonary criteria. At this point the surgeons quickly open the patient and remove the desired organs — most often kidneys but sometimes liver. Once removed, the organs are quickly cooled on ice.

The DCD protocols produce viable organs because they are structured to take the organs out as quickly as possible after the declaration of death in order to keep warm ischemic time to a minimum. However, there are no clinical guidelines upon which to make such a declaration. No law, textbook, or medical school lecture has indicated how long after cessation of breathing and heartbeat death occurs. It never used to matter because either death was declared after lengthy resuscitation efforts had failed, or at the end of a long dying process in patients for whom comfort measures only were being provided. In the latter cases, when there were no resuscitative efforts after cardiopulmonary arrest, there was a significant time interval when the patient was visited by the family and cleaned and prepared for transfer to the hospital morgue by the nursing staff. During this interval, if the

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heart began beating again for a few seconds, no one knew and there were no bad consequences.

With DCD, however, patients are closely monitored. It would not do for surgeons and nurses to see cardiac activity after they had begun to remove organs. There is some evidence, although incomplete, that the heart will not autoresuscitate (start beating on its own) after two minutes of stopping. More troublesome is the fact that many patients qualifying for organ removal under DCD protocols could have their hearts restarted if given external electric shocks. Of course, without ventilation, the hearts would soon stop again, but the fact remains that, however briefly it beats, a beating heart is not consistent with a pronouncement of death for patients who have not been pronounced brain-dead. This situation has forced physicians and bioethicists to revisit the meaning of ‘irreversible’.

Although irreversibility is part of every clinical and legal determination of death, it has never been defined. In order to examine this issue comprehensively, let us consider the following case.

Mr Smith is walking down the street and has a massive heart attack resulting in cardiopulmonary arrest and loss of consciousness at time T1. Four minutes later, at T2, he is discovered lying on the sidewalk, is not breathing, and has no pulse. Cardiopulmonary resuscitation is begun and a 911 call is placed. The EMS squad arrives and continues the resuscitation efforts as they transport the patient to the emergency room, where it is continued for a total of forty-five minutes following T2 when the patient was found on the street. After forty-five minutes of resuscitation, there is no resumption of spontaneous heartbeat so the emergency room physicians stop and declare the patient dead at T4. Since there is no good data on how long resuscitative efforts must continue before declaring them a failure, it is likely that the situation became hopeless sometime earlier, between T2 and T4. Let us call this time T3.

When did Mr Smith die? At T1 when he lost cardiopulmonary function? Four minutes later, at T2, when it is determined that he has lost cardiopulmonary function? At T4, when physicians decided to give up resuscitative efforts, or did he die at T3, when his arrest really became irreversible? Again, the answer cannot be found in either the law or medical texts (Lynn and Cranford 1999). And, aside from the bizarre kinds of cases used to teach law students, nothing much has ever hinged on this decision. However, in DCD cases a great deal is at stake because there is a premium on getting organs out as quickly as possible without killing patients by violating the dead donor rule. Because DCD patients are being closely monitored, T1 and T2 are the same. The critical question is about T3, the moment when irreversibility is determined.

Supporters of the DCD protocols argue that even though the cessation of cardiac beat could be reversed with electric shocks at two or five minutes, the fact that a morally acceptable decision not to do it has been made means that the cessation

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is irreversible. Is this position defensible? Most philosophers who have tried to tackle this question say no. In fact, David Cole has argued that irreversibility is not part of the ordinary concept of death and should be dropped from the definition and criteria (Cole 1993). ‘Irreversibility’, argues Cole, is hopelessly ambiguous. It belongs to a class of modal terms that have always resisted analysis in logic and philosophy of language. More specifically, ‘irreversible’ invites such questions as: By whom? When? And under what circumstances? While it is unlikely that law and medical guidelines will abandon their insistence on irreversibility, Cole outlines three different construals of the term.

The first and strongest construal of ‘irreversible’ is that ‘a lost function cannot be restored by anyone under any circumstances at any time now or in the future’. For example, if a person’s entire body is frozen upon death with the hope that sometime in the future they could be thawed and restored to life, the loss of function would not be irreversibly lost. Others reject this strongest construal of ‘irreversible’, arguing that ‘Magical, or futuristic scenarios are the sort of concepts to be contrasted with rather than being illustrative of ordinary ones’ (Bartlett 1995: 272). The philosopher David Lamb agrees with Bartlett. ‘In the real world,’ he says, ‘logical possibility without the check of plausibility is a worthless guide to action’ (Lamb 1992: 32).

The second construal of ‘irreversibility’ is that loss of function cannot be reversed by those present. This construal would preclude taking organs in DCD protocols after two to five minutes because electric shock could restore heartbeat.

The third construal, the weakest, is that a function is irreversibly lost if a morally defensible decision has been made not to try to reverse the loss. Tom Tomlinson has defended this construal, writing that patients in DCD protocols are dead after two minutes because ‘irreversible . . . is best understood not as an ontological or epistemic term, but as an ethical one’ ( Tomlinson 1993: 157). This position has been effectively attacked by others. Bartlett argues that Tomlinson’s analysis justifies active euthanasia to obtain organs but does not support a determination of death.

Youngner, Arnold, and DeVita argue that basing a declaration of death on a moral analysis rather than on ontological arguments or biological phenomena leads to several problems (Youngner et al. 1999). First, while removing a ventilator with family consent has been increasingly accepted as ethical in the United States, other countries do not turn off ventilators as a matter of social policy. Using Tomlinson’s standard, a patient who is considered dead in the United States would be alive in Spain or Italy. Second, moral judgments about the acceptability of stopping life-sustaining treatment often depend on secondary issues such as adequacy of informed consent that are themselves subjective and prone to controversy. Disagreement about non-medical details of a particular case could force discussion further and further from commonsense notions about

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what it means to be dead. Consider the following case in the context of brain death.

A 70-year-old patient with end-stage metastatic cancer is rushed to the hospital, comatose. She meets all other clinical criteria for brain death but is found to have high levels of barbiturates (a central nervous system depressant) in her blood. A note is found that says the patient took an intentional overdose and wants to be allowed to die.

According to current medical standards, such a patient could not be declared dead. If she were supported while barbiturates cleared from her system, she could wake up with no damage whatsoever to her brain. Yet, according to Tomlinson, such a patient could be declared dead while the drug is still in her system if we thought her suicide attempt was morally justified. But our society is hopelessly divided about the issue of whether or not suicide, or assisted suicide, in such circumstances is morally acceptable. Tying the decision about whether someone is dead to public opinion or individual attitudes about the acceptability of various practices would hardly make for sound public policy.

On the other hand, defenders of the DCD protocols note that when patients are not to be resuscitated, and their hearts stop beating, it is common practice to declare them dead right away. They also question whether if someone suffered cardiac arrest on a camping trip with no medical technology available, we would be obligated to wait five, ten, or more minutes to declare them dead simply because we would have had to wait longer in an ICU?

Is There a Solution?

We have seen that there are at least three competing definitions of death that are accepted by health professionals and the general public. We have seen that philosophers and bioethicists continue to defend plausible, but competing, definitions of death. We have also seen that the medical criteria and tests for declaring brain death are applied inconsistently with each other. Moreover, the term ‘irreversible’, the reassuring adjective wedded to all definitions and criteria of death, is itself hopelessly vague and context-dependent.

Is there a way to resolve these conflicts and contradictions? Will one philosophical view of what exactly constitutes death emerge that is so persuasive that competing views will fall by the wayside? Will medical science become so sophisticated that it can locate the moment of death when philosophy cannot? The answer to each of these questions is no. Proof of the correct definition will not arrive as proof that the world was round instead of flat. New medical technology and the knowledge it brings will only confound society’s understandable wish to have a definitive moment of death.

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However, death is a social construct. Medical science can better illustrate (or complicate) the biological context in which it takes place. Philosophy can present more or less cogent arguments to choose one loss of function as conceptually more important than another. But culture and context will always be the final arbiter. Brain death may have been ‘grandfathered’ into American culture, but a look at other modern societies illustrates that belief in and acceptance of brain death are not inevitable.

Defining Death in Other Cultures

If one were to assume that the course of public acceptance of brain death in other highly industrialized liberal democracies would parallel that in the United States, the assumption would prove incorrect. For example, the Danish parliament passed a law recognizing brain death only in 1990, after long public debate and education encouraged by the Danish government (Rix 1999). Surveys showed, however, that, despite the education, the public still had trouble distinguishing between brain death and PVS. Moreover, open discussion about the ambiguities surrounding brain death may well have contributed to an actual decline in organ donation.

Until the National Transplant Act in 1997, brain death in Germany was recognized de facto in clinical practice. However, the 1990s saw a tremendous debate about brain death and its inevitable connection to organ transplantation. Opposition came from several sources, but as Schone¨-Seifert (1999: 267) has observed, ‘a core objection is the claim that brain death supports a reductionistic view of human beings’. This core objection was part of a more general ‘anti-bioethics’ sentiment that accused bioethics of an unacceptable utilitarian ethic that, argued the critics, resonated uncomfortably with Germany’s Nazi past.

Of all the industrialized countries, the debate has been deepest and most bitter in Japan. In her book Twice Dead, the anthropologist Margaret Lock (2002) traces the roots of organ transplantation in the United States and Japan. Unlike the United States, problems in Japan emerged from the beginning, when, in 1968, a transplant surgeon, Wada Jiro, performed the world’s thirteenth heart transplant in Sapporo. Wada both pronounced the donor (an 18-year-old boy who had drowned) dead and performed the transplant surgery. The Japanese news media, involved from the beginning, questioned both whether the surgery was needed by the recipient and if the donor was really dead when his organs were removed. Wada was charged with intentional homicide and professional negligence. It came to light that Wada had tampered with the recipient’s discarded heart to make it look more damaged than it really was. It was also widely noted that Wada had obtained much of his training in the United States.

A second heart transplant was not performed in Japan until 1999. In the interim, an incredible public debate ensued. Lock describes it as an unprecedented effort

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to reach consensus about an issue that had caused ‘national angst’. More than 100 books for the general public were written on the topic. Brain death was the subject of numerous television news specials. The effort to debate and educate included children. Lock (2002: 143) writes:

Manga (comics) have an enormous popularity in Japan; their influence on the young is arguably as great as that of television . . . The best-selling Black Jack series . . . read by millions of Japanese, has vividly depicted the living death of brain-dead and PVS patients and the moral dilemmas they pose, and the children’s page in major newspapers put out cartoon pages educating young readers about brain death.

Such a social practice is unimaginable in the United States. Lock paints a complicated picture of the roots of opposition to brain death in Japan, including: deep ambivalence about the ‘West’; the lingering presence of animism in Japanese culture; the absence of Christian charity as practiced in the West; mistrust of medicine; and that death is seen as more of a process in Japan, with the family more fully in control. As proof of its deep ambivalence, Japan did not legally recognize brain death until 1997, and then only grudgingly. Brain death must not only be rigorously established (in contrast to the United States, where the diagnosis is less and less rigorously conducted), but if the patient or family does not accept brain death, the medical diagnosis is not enough to take organs or even to declare death. Both donor and family must have signed donor cards. It is not surprising that the new law has yielded only a handful of donors in the seven years since its inception.

Lock argues that while brain death is seemingly accepted in North America and Europe, ‘historical and multi-sited ethnographic research make plain the ambiguities and doubts that have surrounded living cadavers during nearly half of century of existence’ (Lock 2002: 42).

The Japanese have an unnerving word for taking organs from brain-dead patients, autaguari, which means harvesting green rice. While no such word use exists in the United States, the stubborn persistence of the term ‘brain death’ may be a less jarring version of the same phenomenon.

For two decades transplant surgeons and organ procurement personnel have been arguing that the adjective ‘brain-dead’ should be dropped in favor of the simpler ‘dead’. After all, the argument goes, if you call patients brain-dead instead of dead, it implies that they are different categories. Perhaps the implication is intentional, if not always conscious, and the persistence of the term ‘brain death’ represents a deep-seated sense among lay persons and health professionals that they are not the same. Our use of language often betrays other instances of the ‘ambiguities and doubts’ to which Lock refers. For example, it is commonplace for news reporters, families, and health professionals to talk about ‘brain-dead’ patients being ‘kept alive’ by machines.

Perhaps, as the neurologist Alan Shewmon has written, we have simply not developed the proper language with which to understand death in the modern ICU. ‘Instead of proceeding via logical deduction from some preconceived,

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a dramatic redefinition of death to include patients in PVS as a way to ‘quell’ the controversy that taking organs from them would cause. This is not likely. Vehement objections from religious fundamentalists and disability rights activists such as the group Not Dead Yet would make any major gerrymandering of the line between life and death impossible. Even the late Pope John Paul II declared there should be no judgments about the quality of life of PVS patients and that removing a feeding tube from patients in PVS is immoral and constitutes ‘true euthanasia by omission’. The implications of the Pope’s pronouncement for end-of-life care in PVS are uncertain, but is unlikely that the Catholic Church will embrace taking organs from PVS patients anytime soon.

A second choice for social policy is to have a public discussion about whether the dead donor rule can be violated under circumstances in which: (1) the donors or their surrogates have authorized removal; and (2) no tangible harm (e.g. pain and suffering) can come to the donor as a result of organ removal. This course would be likely to galvanize the same religious and political forces mentioned above who are wedded to the notion of clear dichotomies — between life and death, killing and letting die, and good and evil. Furthermore, public acknowledgement that patients were being killed by organ removal would likely alienate other groups who already have great mistrust of the health care system.

In fact, public discussion about either choice, redefining death yet again or abandoning the dead donor rule, is likely to erode what has appeared to be a workable social consensus, however flawed, about brain death. Most probably, the ongoing shortage of organs will force a gradual erosion of the line between life and death so that ambiguous states are increasingly and quietly included in the dead category or that little fuss occurs when severely compromised but living patients are killed by organ retrieval. The general acceptance of DCD protocols is an example of how this has happened already. If our society really insisted on maintaining a bright line between life and death and between killing and allowing to die, it would reject a twoto five-minute waiting period after heartbeat ceases because there is no proof or agreement about irreversibility at that point. There seems to be a passive acceptance that not much is lost either way.

Perhaps, as Shewmon has suggested, we will begin adopting new words or phrases to describe such states and contexts. Perhaps these new words will allow us to avoid the traditional battles about who is ‘alive’ and who is ‘dead’ and whom we are ‘killing’ and whom we are ‘allowing to die’. The new words might improve on current phrases such as ‘good as dead’, ‘euthanasia by omission’, ‘morally irreversible’, and ‘critical function’, which, to some degree, reflect human feeling and practice, but, in the end, fail to capture the complexities of life and death as they are experienced in the modern intensive care unit.