This stimulating and provocative paper by Professor Appel, Defining death: when physicians and families differ, asks us to consider (in the context of United States health care where, we are inclined to suppose, autonomy enjoys a primacy among moral considerations) “whether patients’ families should be permitted to opt out of widely accepted definitions of death in favour of their own standards”. This is a striking question in many ways. It reminds us that, as a simple description of fact, there are indeed different standards for human death in so far as different groups or communities (which can be professional as well as geographical or cultural) have accepted and continue to accept varying notions of what constitutes human death. The question’s reference to “opting out” suggests, perhaps reasonably, that it seems prima facie odd to think of adopting a definition of death as being a matter of individual choice. The reference to “permission” invites us to suppose limitations, primarily legal, upon the extent to which such a choice could be tolerated. Also, the question ascribes to certain “definitions of death” (note the plural) the authority of being widely accepted. The definitions thus favoured are, we learn, the various formulations of death referring to the state of the brain, chief among them “whole brain death” although the author is troublingly vague over whether all such formulations are morally, legally, or conceptually equivalent; and the relevant communities of acceptance turn out to consist of many—but, as the author admits, not all—physicians labouring under varying and inconsistent jurisdictions in the United States.

My preface to the criticisms that follow is a welcome for the author’s reminding us of the importance and, from time to time, the topicality, of a genuinely philosophical question in technological medical practice. That said, I hold a position substantially different from his, and it is best expressed in terms of my specific disagreements with what he has to say and with what he from time to time implies.

1. The author describes—in what I think are contestable terms—the way the definition of death has evolved in the United States. “Until the middle of the twentieth century”, he says, “the medical community, the legal system and an overwhelming majority of the public understood death to be synonymous with a cessation of circulation and pulmonary respiration. These attitudes changed as new technologies enabled patients with minimal or no brain function to remain breathing on ‘life support’.” This account seems to me to embody an important non sequitur, namely that the maintenance of people lacking brain function should cause us to review a definition of death based on breathing and heartbeat. If people lacking breathing or heartbeat (or both) were maintained on “life support” then this would indeed be striking reason to rethink a definition of death based on those now absent functions. That is not, however, what the author says. The puzzle he presents to us, in the form of people remaining on “life support” with “no brain function” (a state of affairs in need of considerably closer description, of course), seems better suited to making us give up a conception of life and death centred upon the brain—the opposite evolutionary direction to the one he detects.

2. The author reviews various kinds of opposition to the “widespread acceptance worldwide” of “brain death”, but says most about religiously grounded opposition, and presents the Koochin case in the context of the Koochins’ religious beliefs. We must, however, note that one need not hold a particular set of values, religious or otherwise, in order to acknowledge that values are embedded in any conception of death. Our concepts of human death (here I would agree with Pallis, one of the foremost British champions of “brain stem death”¹) stand prior to the particular sets of criteria and evidence, including scientific evidence, that express those concepts. Neurological evidence for the satisfaction of the criteria for “brain death” is meaningful only if we have already decided, on other grounds, to regard what the brain does as central to our conception of what is important in human life. Those who think that, for instance, the capacity for consciousness is the key characteristic of human life are expressing an intelligible view, but it arises from a culturally based conception of what is important rather than from what science demonstrates; the science comes later, when one has chosen one’s view of human life. Alternative conceptions of the key characteristic of human life are possible; Dawkins shows how one could regard humans as important for being vehicles for their genes (reminding us that not all value systems are religious).² Those basing their support for particular forms of brain centred conceptions of death upon the role of the brain in, say, integrating bodily systems, and/or supporting consciousness, are giving the brain a plausible instrumental role in upholding their chosen key characteristics of human life, as I have elsewhere shown.³

3. Conceptual issues are unfortunately admixed with considerations of cost, from time to time, in the paper. For instance, the variety of juridical views among the various state legislatures is “troubling because the stakes are extremely high”. The stakes are high of course—they amount to the life and death of a human being—but the author’s illustration of the stakes seems to concern other sets of interests: “[T]he girl was sent home on a ventilator at the hospital’s expense”, and “[d]eterminations of death impact [upon] the distribution of property, the disposition of life and health insurance, and the dissolution of marriages.” Now expense and financial hardship are certainly important issues, but these consequences of the patient’s life or death are different issues from the question of whether or not the patient actually is still alive. The cost of “life support” may determine how long we can afford it, but it is irrelevant to whether or not the patient on the machine is alive or dead while still connected to it. An unintended conflation, I am sure, but such conflations do little to dispel the sceptic’s anxieties that the search for conceptual revision of our notion of death comes from a variety of motives, not all of them wholesome.

4. I share the author’s dislike of the “patchwork” of different views in different jurisdictions, but we need to remember that while inconsistency as such is usually a bad thing, it is not as bad as a bad consistency: I would rather a patchwork in which at least some of the relevant legislatures enacted a view of death that I could support than a legal monoculture in which none of them did: so, I take it, would the author.

5. Jesse, we are told, is already dead despite the fact that “the boy’s heart may continue to beat for weeks or even months on ‘life support’” [my emphasis]. It might appear from this that the author is here considering an essentially upper brain conception of death, a state more usually regarded as irreversible coma and not officially accepted as constituting death in the United Kingdom. The permanent loss of lower brain function would normally be followed readily by loss of bodily integration, systemic collapse and organic dissolution well within such a period of time, although survival for months is possible. Many people remain surprised, however, to learn that even when “brain stem death” [“lower brain death”] criteria are satisfied, the heart may continue to beat spontaneously for some time (hours or days) provided that the blood it pumps is oxygenated by the artificial maintenance of breathing. What a continued spontaneous heartbeat does or does not “count for”⁴ in one’s conception of human life is a matter of the beliefs and values held by the onlooker. Science can tell us whether or not a heartbeat is spontaneous, and what other physical functions support it or are supported by it, but science cannot tell us what such a heartbeat is worth.

6. It is symptomatic of the author’s sense of urgency, perhaps, that he draws on a lurid and I think perverse analogy for the child on a ventilator. Even under his own conception of when one is “already dead”, it is question begging in the extreme to identify a ventilated patient with a notorious mummified corpse as in: “His parents are seeking to take home and ventilate a corpse—a child as dead as Tony Perkins’s mother in Psycho. If the couple believes otherwise, they are in denial.” I beg to differ, even though I might agree with the author’s unspoken presumption that death is all or nothing, and that there are not degrees of death. One corpse truly is as dead as another corpse. All genuine corpses can legitimately be cremated, for instance: but that in itself shows how cautious we must be in reclassifying a patient as a corpse. A child genuinely “as dead as Tony Perkins’s mother” could, from the point of view of the meaning of “death”, be cremated in precisely the condition in which she then lay. I think, however, that a parent who doubted the legitimacy of cremating anyone, let alone a child of theirs, in a clinical condition capable of months of “life support”, might protest vehemently at having such doubt dismissed as “denial” in the sense the author intends of self imposed delusion (obviously the whole point of the reference to the psychotic Perkins). There is a perfectly respectable sense of “denial”, of course, as an active repudiation of what one holds false. The parents are entitled to denial in this sense, and in the case as described I would have every sympathy with them.

7. The same question begging applies to the claim that “carving out an exception for the Koochins may do long term societal damage by undermining the perceived validity of brain death” (here the author relinquishes the quotation marks he previously reserved for the expression “brain death”, though he does not say why). Those opposed to, for instance, upper brain conceptions of death (as being constituted by irreversible coma) can argue with equal reason that long term societal damage is done by that wholesale revision of the concept of death which legitimises the cremation of still breathing human beings or, in the case of lower brain dead patients, by the cremation of human beings with persistent spontaneous heartbeat.³ The long term societal damage the author fears takes, moreover, a somewhat commodified form: “Organ donation programmes, which rely upon brain dead cadavers, will inevitably have a more difficult time obtaining familial consent”. Well, perhaps they should have a more difficult time, if they cannot convincingly resist the central charge: namely, that they benefit from the convenience of a revision of the concept of death when that revision falsely purports to rest on purely scientific grounds—as though the concept of death were not (as set out above) prior to the scientific description of the processes identified as relevant to the concept in question.

I would like to end on a note of part agreement with the author. He urges that the different states take action “either to forbid families overtly from opting out of majority death standards or to set rules governing opt out procedures”. In the end, death standards ought to command majority assent in a given society; there is something terrible about a situation where they did not. I do not believe that there really is an informed, open eyed, consensus in the USA or in the UK in favour of regarding as dead—and hence crematable (if I may be permitted so uncouth an expression) in precisely that condition—those patients who still breathe or whose heartbeat persists. If, however, there were indeed such a consensus, then, perhaps, fair enough, and not all exceptional views deserve respect: we would not tolerate a parent’s wish to keep at home a child who had not yet met their idiosyncratic equation of death with total putrefaction. But this can be addressed in how we govern opt out procedures. Some grounds for opt out will not deserve respect; some will. Pertinently, the Koochins’ grounds do, given their child’s clinical condition as described in this paper. There may be a place in some contexts for high handed, “blanket” legislative prohibitions on dissenting views. But that context is not here.