Although the phrase the dead donor rule was not coined until 1988, Arnold and Youngner consider it to be “an unwritten, uncodified standard that has guided organ procurement in the United States since the late 1960s” (1993, p. 264). It represents two moral commitments that guide the retrieval of organs. The first is that healthcare professionals may not harm, kill, or hasten the death of a patient in the pursuit of organs. This is, of course, a basic moral commitment of medical practice—first, do no harm—that is being reiterated in the context of donation and transplantation. The second commitment is that the donor must be dead prior to retrieval and therefore beyond any possible harm that might result from doing so. Whilst this rule is obviously contravened in the cases of live donation of non-vital organs, it is maintained at the end of life. For example, the kidney of a dying patient would not be removed even if the patient wishes to be a (post-mortem) organ donor and doing so would not hasten their death.

The importance of the dead donor rule is not restricted to its role in the structural arrangements of healthcare practices, in conditioning the treatment of patients who are potential donors, or in constructing the ethics of donation. It is also an important part of what we might call the moral landscape of donation. For example, it plays a vital role in producing and maintaining the trust of the donating public. However, the existence of the rule and its role in the maintenance of trust should not blind us to the fact that our concept of death has not developed in a manner fully independent of organ transplantation. It is well known that whole brain death and the accompanying criteria for its assessment were conceived, at least in part, for the purposes of facilitating the post-mortem donation of organs.¹ Whilst there was rapid cultural acceptance of this definition of and approach to death by the medical profession and Western societies more generally, it did not receive a universal welcome.² Furthermore, since its introduction there have been on-going concerns about the validity of brain death³ and the dead donor rule,⁴concerns that have increased following the introduction of protocols for Non-Heart Beating Donation (NHBD), also known as Donation after Cardiac/Circulatory Death (DCD).⁵ Whilst one can read the cessation of respiration as a proxy measure for brain death it requires a certain degree of contortion to think that the latter occurs within the time surgeons must allow to elapse following the final heart beat before commencing the retrieval of organs.⁶ Consequently, whilst in the normal course of events we may be pronounced dead following brain death determination or due to cessation of cardiac function, we can be sure that one rapidly follows the other and that very little will happen to us in the intervening time. However, in the event of post-mortem donation, rapid retrieval of organs will take place following the pronouncement of death .

It is clear that there is an increasing degree of strain on the dead donor rule.⁷ Brain activity can be present when individuals are dead by cardiac criteria and cardiac activity can be present in patients who are brain dead. Given our normal assumptions about death then, in the first instance, it seems counter intuitive that there are two independent but, nonetheless, necessary and sufficient criteria for the medical diagnosis of death. Furthermore, it is legal to treat the body of the post-mortem organ donor in ways that one is not allowed to treat the living—e.g. the harvesting of organs—but often under conditions that do not seem necessary if the body is truly dead—NHBD protocols often require the use of a shunt to cut off the blood supply to the brain. The strain on the dead donor rule is the result of conceptual confusion about human death. In this chapter, I will examine this confusion and argue that it cannot be entirely avoided. This introduces a moral or ethical dimension to the way we choose to define and determine death. It would seem that if post-mortem organ donation is to be ethical then, for the purposes of ensuring the informed consent of those registering to be donors, this aspect of death must be openly discussed. This means introducing a greater level of complexity to Organ Donor Registers (ODRs) and requires what we might call a biopolitical response to the bioethical concerns about the dead donor rule.

Death, one might say, is as much of a concern for philosophy as it is for medicine. However, whilst the latter is primarily concerned with how to tell if someone is dead, the epistemology of death, the former is focused on the metaphysics of death, with what it really is. Beyond determining what death might mean—whether or not death is nothing to us or a great evil, ⁸ the concerns of philosophy are usually ontological and directed towards the nature of human being (soul, person or organism) and, therefore, whether or not death should be considered: the severing of the soul from the body;⁹ the end of personhood or personal identity; ¹⁰ or the dissolution of the human organism.¹¹

In contrast, the primary concern of biology and, therefore, medicine is with the epistemology of death, with how to determine that death has in fact occurred in particular individuals or organisms. In the past, this has meant awaiting the first signs of biological decay. In 1833, Dungison advised “the only certain sign of real death is the commencement of putrefaction” (Cited in Ewin 2002, p. 109). However, at the present time death is determined in one of two ways: first, the irreversible cessation of respiration, most often determined by the irreversible cessation of cardiac function and, therefore, the circulation of the blood; second, via an assessment that the brain is no longer functional, so-called brain death or whole brain death. In such instances respiration is maintained, often mechanically, in order for a diagnosis. Given a diagnosis of brain death, ventilation is withdrawn and the remaining signs of life cease.

However, neither determination precisely reflects the ontological perspectives offered by philosophy. There is simply no empirical way to determine when the connection between a non-material object (the soul, the mind, or the essential component of personhood) has been severed from a material object (the body). Whilst we might connect personhood with brain function, the matter is not as simple as one might think. Some deny personhood to the fetus and even neonates, nevertheless their brains function in such a way as to not meet the criteria for brain death. We can think similarly for many other higher organisms. Furthermore, it is not clear that concepts of personhood can accommodate cases where there is a radical discontinuity in an individual’s personal identity, cases of radical memory loss for example. Finally, it is likely that the cessation of personhood is primarily associated with neocortical function rather than with brain function per se. Although some might argue that they should be, patients who suffer an irreversible loss of neocortical function are not considered dead. Whilst the criterion for whole brain death seems to demand more than the loss of personhood those for respiratory death seem unconnected to anything of metaphysical significance.

In fact, the metaphysics that underlies the biological perspective of modern medicine is likely Becker’s (1975) understanding of the bodily integration/disintegration of human beings, or organisms than with the metaphysics of philosophical personhood. However, this biological ontology does not provide for a clear and bright line between alive and dead. Thus, it does not accord with our normal, everyday, or ordinary ¹² intuitions (or ‘folk philosophy’) about death occurring at a precise point in time, albeit at the end of a process called dying. Nevertheless, we cannot simply abandon the determination made at specific points in time that death has occurred. First, there are strong cultural, epistemic and philosophical pressures to do so. This includes the need of medical professionals to decide when to stop medical treatment, particularly emergency treatment. Second, if we were to do so it may well rule out virtually all post-mortem organ donation. If organ retrieval teams were required to wait until all potential signs of life were absent the organs would no longer be in a condition suitable for transplantation. Consequentially, it is unavoidable that the epistemology used by biomedicine to pronounce that death has occurred conflates a variety of metaphysical views.¹³

Unfortunately, there is no obvious way for us to clear up this confusion. As more than 2000 years of philosophy and medicine demonstrate, the ontological and epistemic puzzle presented by death is not amenable to an easy solution. Some have responded to these problems by suggesting that death is not simply an ontological or epistemic category but also a moral or ethical category.¹⁴ Such approaches do not obviate or supersede the ontological or epistemic analysis of death but, rather, reveal that there is another layer to the debate. The question of when a human being, as opposed to any other biological organism, is dead is not simply a search for an objective answer but also a question concerning their treatment. If an individual is dead then medical treatment can be withdrawn. If the individual is a registered donor then their organs can be retrieved for the purposes of transplantation. Whether or not someone is considered dead is an ethical event with ethical consequences.

It is widely acknowledged, although complex, truth that the arrival of brain death criteria was not unrelated to the arrival of transplantation technology Belkin (2014). The potential good that could be served by the technological achievement of transplanting organs from one individual to another required a supply of viable organs. For organs to be sufficiently viable they must be retrieved a short time following death or, more accurately, following the cessation of an oxygenated blood supply to the organs. The contemporary technological achievements of the Intensive Care Unit (ICU) and mechanical ventilation had produced patients whose respiratory and circulatory function could be maintained but, due to traumatic brain injury, were understood to have no prospect of recovery. Thus, the concept of brain death emerged from the moral challenge produced by this technology. However, further motivation to define criteria for its assessment was produced by a realization that brain dead patients could provide a source of transplant-viable organs. The respiratory and circulatory functions of brain-dead donors could be maintained until the last possible minute before organ retrieval, meaning that they would be in good condition for subsequent transplantation. For almost three decades, post-mortem organ donors were all patients who had been declared brain dead. However, in the mid-1990s protocols for NHBD began to be introduced.

Prior to the introduction of NHBD, the process of post-mortem donation involved a declaration that a patient was brain dead. Such patients are very likely to be undergoing mechanical ventilation and are in an ICU following some form of traumatic brain injury. The process of assessing a donor, consulting the family, allowing the family to say good-bye, making arrangements for a recipient, etc. could all be accomplished. Certainly it is not an easy time, but nevertheless there is time, and this is the process most people imagine when they register to be a post-mortem organ donor.

In cases of NHBD, this process can be quite different. There are two kinds of NHBD, controlled and uncontrolled. In the first, a patient is mechanically ventilated but is assessed as having no prospect of recovery. Although they may be dead neocortically they are not brain dead. In such instances there is enough time for the various processes that surround donation to be accomplished and the family can say good-bye to a patient who is still alive. In most cases, life support is withdrawn from the patient in the operating room where, according to the dictates of the local protocol, the surgical team will wait between 2 and 6 min following a final heartbeat before commencing retrieval. As a recent document concerning the legal issues surrounding NHBD acknowledged:

[T]he care and treatment that a patient receives around the time of death may need to be adjusted if the patients’ potential to donate is to be maintained or optimised. Such adjustments may include the timing and place of death (DHSSPSNI 2011: § 1.9).

Elsewhere I have argued that if it is to be reintroduced, the fact of elective ventilation ought to be brought to the attention of potential donors as part of the process of registration.¹⁵ It seems important to do so if we are to secure the fully informed consent of donors. In light of such information, it may be that different individuals would make different choices and that they may do so for reasons they see as ethical. We can think similarly in cases where individuals donate following brain death or cessation of cardiac function. Potential donors should be made aware of the different protocols and given an opportunity to assent or dissent. Or, rather, to provide their active consent.