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Journal of Medical Ethics logoLink to Journal of Medical Ethics
. 2006 Oct;32(10):609–611.

Authors' reply: A body at will

A Ravelingien 1,2,3, J Braeckman 1,2,3, F Mortier 1,2,3, E Mortier 1,2,3, I Kerremans 1,2,3
PMCID: PMC2563301

We thank Robert Sparrow1, Steven Curry1, Heather Draper3, Janna Thompson4 and Neil Levy5 for their contributions in discussing the difficulties and possible implications of our defence of willed body donation for xenotransplantation (and, plausibly, other types of) research on bodies in a permanent vegetative state (PVS). We will deal with four crucial objections raised in their commentaries.

Firstly, there is hesitancy about the claim that the PVS can be regarded as death. Secondly, the moral weight of the prior consent of “the deceased” is questioned in the light of conflicting interests of the living. Thirdly, the opinion is held that our utilitarian motivation to conduct the research cannot but defend an ultrautilitarian denial of the importance of prior consent. Finally, it is thought to be preferable to argue for the use of terminally ill patients rather than bodies in a PVS.

Our reply rests on the assumption that the requirements we listed in the original formulation of our suggestion—certain diagnosis of the irreversibility of the state; sufficient and relevant functioning of a body in a PVS to obtain useful results; and prior informed consent6—can be maintained along with an additional condition pointed out by one of the commentators that a sufficient number of consenting adults can be obtained in advance.

Firstly, the objection is raised that the PVS either cannot or should not be regarded as death. We are said to believe that “PVS patients are in fact dead”. The commentators hold this seemingly straightforward and objective claim to be either factually untrue—an assumption that leads several authors to argue that we are dealing with living patients, “albeit with a very poor quality of life”—or logically inconsistent with the way in which we leave room for subjective judgement.

In response to the question of whether patients in a PVS are in fact dead, we want to make the following remarks. Speaking of a “patient” in a PVS (let alone, of a “person” in a PVS, an equally unfortunate choice of words used in some of the commentaries) is a contradiction in terms and impedes the discussion. We argued that the word “patient” is inappropriate in relation to the condition because it generally refers to a living person, whereas the bodies we conceive of are permanently devoid of all forms of personhood, even of the minimum requirement for the capacity of personhood, although the body is still biologically active. Given that the person no longer exists, it makes sense only to speak of—indeed, living—bodies in a PVS.

That the person is dead whereas the body remains alive is the essential requirement of our proposal. It is neither a matter of opinion nor a matter of ethics. That a demonstrably irreversible vegetative state implies that the person has died leaving behind a living human body is a fact that is in keeping with the specialisation of the brain (eg, cerebral cortex v brainstem function). The question that remains, however, is of what value can be attributed to such a living, person‐void body. It is only with regard to this question that we leave room for subjective judgement.

The fact that the person in a demonstrable and irreversible PVS is dead explains why we cannot accept the alternatives offered by both Curry2 and Draper3. According to Curry, provided that prior informed consent is sought, “living PVS patients” may be enrolled in xenotransplantation experiments—just as healthy subjects may enrol for phase I and II drug trials—because they are “in exactly the right kinds of ways” not like other patients:

It just so happens that PVS patients do not have any of the interests listed by the authors. Persons who are in a PVS will never wake up, they feel no pain or discomfort, and have no continuing interest in their own survival. Even if one thinks that PVS patients have a right to life (on even the most contentious meaning of this term), these patients must also have a right to risk that life for the common good. [the italics are ours]2

Similarly, Draper argues that if a person in a PVS wishes to participate in xenotransplantation research, this is a matter of life‐style choices, a matter for him or her alone.3 Curry explicitly claims that this move bypasses the need to agree on whether they are dead while maintaining the motivation to use bodies in a PVS. In effect, however, such claims miss the point. They presuppose personhood and as such fail to strengthen our argument. A person in a PVS cannot decide to risk his or her life for the common good, for there no longer is a person who can consider taking a risk. He or she can only decide in advance (t1), and to a certain extent, the fate of his or her body once he or she, as a person, ceases to exist (t2).

The decision of what may happen to the body at t2 is dependent on the importance attached to the death of the person at t1. Various scenarios of how to dispose off the bodily (living) remains, comparable to scenarios of how to dispose off the corpse, are conceivable in relation to the prior sensed value of the person‐void body. These include the decision to keep the body alive or to allow it to die. In the case in which the body is allowed to die, it becomes a cadaver and wishes about retention of non‐living bodily remains become applicable. In the case in which the body is to be kept alive, we can choose to either have it left untouched or—the option that we open up—donate it for research purposes.

Whether the person is dead or alive is not, or should not be, contestable. Whether the death of the person (or, alternatively, his or her existence) is what matters in valuing life, however, is contestable. This question of determining what it is to be dead (or non‐existent) lies at the definition or concept level. This fundamental level is subject to philosophical and theological beliefs, whereas the other more objective levels—the levels regarding the criteria and medical diagnostics—are essentially a matter of natural sciences.7 Disagreement at each of the three levels remains, but that at the level of definition has the greatest effect, which explains why people may hold different opinions on what it means for a human being to be dead.

That there can be very different ways of understanding among people does not mean that there are no limits to which concepts of death can be applied. If that were the case, we would need to accept an endless possibility of alternative definitions of death, as one commentator points out. It is, however, reasonable to claim that the death of the person is a sufficient condition for what it means to be dead. This is because of the common ground with the current concept of brainstem death. It is the irreversible loss of consciousness and thus of any capacity for personhood rather than the loss of brainstem functioning that lies at the base of accepting whole brainstem death. The death of the person is a necessary condition for meeting certain wishes regarding treatment of the body, and this is, by definition, the case for both whole brain death and cortical brainstem death.

Janna Thompson,4 in stating her reluctance to treat bodies in a PVS as dead, contests this conceptual consistency. According to her, treating bodies in a PVS in the manner we suggest would cause the public to reach the “breaking point”, given the current tensions between social and medical perceptions of death. It is unclear how Thompson can be certain about this, for she gives no indications to support her claim. The general and important point that she makes, however, is that the use of bodies in a PVS for research purposes would cause great discomfort and inconvenience to the surviving relatives, an issue that we have also raised and one whose significance we surely do not mean to undervalue. Nevertheless, the idea that this inconvenience and distress should overrule prior consent for the body in a PVS raises the question as to what the value of personal autonomy and informed consent is and to what degree it needs to be respected—a second vexing point in this symposium.

Thompson is outspoken in defence of the idea that “the wishes of the deceased” are less deserving of respect than the wishes of surviving relatives and may thus be discarded. Most of the other authors seem to agree with this view. It is, however, confusing to speak of the wishes of the dead or deceased (or, alternatively, of the right of the living dead) and to use this claim as the starting point to morally weigh the significance of those wishes. The dead have no wishes to be disrespected. Rather, what is at stake is the right of the living to decide in advance how they should be treated when dead, and the question of whether that prior decision should be respected after the person has died.

The default position, that testamentary wishes should be respected to a certain degree, is generally limited only in those cases in which honouring these prior wishes would disrupt other values or judicial requirements without a counterbalance. For instance, a desire to display one's decomposing cadaver in a public area as an artistic statement would disrupt the tradition‐bound value of properly putting a body to rest, and is not counterbalanced by the satisfaction that would result from this exposure. This does not mean, however, that there are no circumstances under which one's cadaver can be publicly exposed; on the contrary, there can be very good reasons for doing so. In the “body farm” (officially known as the University of Tennessee Forensic Anthropology Facility), bodies lie in the open as a source of information for the science of decomposition,8 the results of which permit a more accurate understanding of the process of decomposition and thus a more precise determination of the time of death, which is crucial to crime solving.

Although our suggestion can disrupt the value of properly putting a body to rest, there is also a weighty counterbalance. The use of a body in a PVS would serve a great societal purpose, comparable to the purpose that impelled the shift in policy to the whole brainstem death standard (making organs more available for transplantation). This is not an outrageous thing to wish. The family will know exactly where the body is located and what will take place, and when the desire to offer one's living body to science in the event of a PVS is discussed with family members in advance, the surviving relatives will not necessarily be distressed. In fact, the relatives may even be consoled by the donation of the body of the deceased, in that it gives some meaning to the death and that the donors will be remembered for their nobility and altruism. Moreover, Thompson's concern that the bodies cannot be put to rest in an appropriate manner should be equally relevant with regard to current postmortem body donation, for which a body may be kept for up to 3 years.

Robert Sparrow1 questions the role we attribute to prior consent in the light of our motivation to promote a public benefit. He claims that we cannot but defend that prior consent is outweighed by the sum of benefits the research on their bodies would give rise to for the general public (and the patient population, more specifically). Presumed consent, rather than explicit consent, and even a full discarding of the significance of consent is, according to Sparrow, a logical implication of arguments in favour of the greater benefit that we expect. He argues that in such a consequential perspective, whether the research is conducted in accordance with the prior wishes is not pertinent.

It is, however, not true that we have to go along with the implications that Sparrow lists. It is false to claim that a utilitarian motivation necessarily implies an ultrautilitarian account that cannot be restricted in any way; the radical utilitarianism that Sparrow conceives of would not, in a utilitarian calculation, bring about the best consequences.

Sympathisers of consequential motivations do not necessarily have to accept that—in terms of a popular thought experiment—a sheriff must turn over an innocent man to an angry mob for the benefit of avoiding a riot. One can still choose not to turn the man over, because that would be wrong in principle or because of a realistic anticipation that it would not bring about the best consequences (eg, the riot that would result when the mob found out that justice has not been served). Some of the negative consequences of the unauthorised use of bodies in a PVS are indicated by Sparrow himself. The scope of the outrage that disclosing the clandestine misuse of bodies in a PVS would cause can easily be predicted even without empirical research. Moreover, in principle, we stand by personal autonomy and do not agree that it can be thwarted by public benefit. We can defend presumed consent if it is in accordance with personal autonomy—that is, if the public does in fact largely consent and knows that the consent is being presumed in the absence of an explicit objection. This is certainly not the case at this stage of our suggestion. A defence for carrying out the research without the willingness of the person is out of the question.

If our argumentation were of a radically utilitarian nature, we would not have arrived at the proposal to begin with, for we would not be looking for ways to avoid the ethical problems arising from using patients as research subjects. The harm to them, and the unacceptability of such reckless research, would—to a radical utilitarianist—be outweighed by the greater good that would derive from the research. That we do not follow this path, then, seems to be the subject of another criticism.

Neil Levy5 points out that our proposal excludes from participation in the research those people who can benefit from it most directly, those who would otherwise die and may, therefore, gladly accept the risks and harms incurred for a chance to lengthen their lives, however stripped of fundamental rights.

We share Levy's concern for the patients who are terminally ill and are hopelessly awaiting an organ, and who are indeed the very people that xenotransplantation research most urgently needs to benefit. We can also accept that such extreme cases may require extreme considerations. Moreover, there is little ground for objecting to the claim that people may waive their rights if they are fully aware of the consequences of doing so. Nevertheless, there is more in place to defend the scenario that this author suggests. For one, Levy's aim to benefit the patients is one of groundless optimism. Secondly, by accepting hasty applications on desperate patients, it will prove to be extremely difficult to avoid a problematic turn away from ethical considerations meant to safeguard patients participating in clinical trials.

The experiments we suggested in our original article were—at the time of writing—of a non‐therapeutic nature, and in want of results that showed whether the xenotransplants were sufficiently safe for trials on patients. The motivation for using bodies in a PVS is that current research is confined to animal models which, we believe, cannot obtain the best results about the effects on a human body. The suggestion of xenotransplanting solid organs in patients—without indicating that we have arrived at the stage at which the patients may be benefited—is not supported by a harm–benefit balance.

Without a harm–benefit balance, Levy's suggestion implies that, no matter what the phase of research, the slightest chance of patients with no other alternative benefiting is deserving of a trial run. That leaves the door open to various situations in which people beyond hope volunteer for unwarranted and questionable “therapies”. That certain patients have no other alternative is not always clear cut and it is also highly questionable whether their informed consent—granted that the patients do fully appreciate and understand the facts and implications of that consent—is sufficient. Problematic research in the past has indicated that desperate people will consent to almost anything. As such, patients are made vulnerable to experiments with purposes other than purely medical or scientific ones.

It seems as though the reluctance to conduct experiments on terminally ill patients at a premature stage is what ultimately causes their death. It would be wrong to suggest such a direct connection. A real chance exists of patients dying when they could in effect have been helped by hasty trials, but that is the price we pay to protect the patient population at large against malpractice and irresponsible research.

Footnotes

Competing interests: None declared.

References

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