EV, organ donation and the politics of death

EV is an attempt to delay the occurrence of cardiac arrest, which would be the result of the respiratory arrest it actually inhibits. This is done as there is an expectation that the criteria for Brain Stem Death (BSD) will be met if sufficient time is allowed for a determination to be made. As Manara and Jewkes put it, in the case of EV, ‘invasive treatment is not simply prolonged after BSD to allow organ donation. It is specifically started for no indication other than to allow the fulfilment of the criteria for BSD and organ donation’.27 As such, EV is a procedure that exists between the epistemology of BSD and cardiac death. However, when EV was first conceived, organ donation could only occur in cases of BSD and was, therefore, solely concerned with facilitating a BSD determination for the purposes of donation. As DCD is now practiced, EV fulfils some other, slightly different, functions.

First, EV may be pursued in locations where, primarily due to a lack of resources for the rapid removal of organs, DCD procurements are not an option but can facilitate donation in circumstances of BSD. As originally practiced in Exeter, a potentially BSD patient may be subject to EV so that they can be assessed and, if appropriate, donation can be pursued. Second, in locales where DCD is an option patients who are at risk of imminent respiratory arrest and whose treatment is deemed futile may still be electively ventilated in order that a BSD determination might be made or, indeed, in order that BSD might occur. Third, EV may be used to delay cardiac arrest such that an ‘uncontrolled’ DCD might be turned into a ‘controlled’ DCD.7 As better transplantation outcomes are achieved in donations that occur in the context of BSD rather than DCD and in the context of controlled DCD rather than uncontrolled DCD one can see why this practice would be pursued. Thus EV may not simply facilitate organ donation per se but a preference for one form of death over another and for particular forms of donation over others because doing so may increase and improve donation rates and outcomes in specific locales and circumstances.

Lock argues that a ‘ventilator, together with responsible intensive care unit staff, becomes, in effect, a simulacrum for much of the functioning of the lower brain stem, and takes over the involuntary task of breathing for patients who are no longer able to cope independently’.29 EV will enact this simulacrum in specific locales, such as district general hospitals, where DCD is not possible. Where EV protocols previously aimed to facilitate a BSD determination and, thereby, a donation that could not otherwise have occurred, current practices mean that EV may be used to facilitate organ donation in one set of circumstances (BSD) instead of another (DCD). EV may be used to improve donation outcomes by enabling clinicians to prefer one epistemological form of death to another. In such a context, not only dying but also death becomes a process that is inextricably intertwined with the social organisation of medicine and transplant services.

Since its inception, organ transplantation has continually challenged the definition of death and its determination. EV raises further questions. In a comment on the original EV protocol, Wallace suggested that EV is incompatible with the proper diagnosis of death, while McHale considers whether EV might require or imply a third category of death, cognitive death.23 ,28 Introduced, at least in part, for the purpose of facilitating organ donation, BSD criteria are not simply a ‘more objective’ criteria for establishing that death has occurred.30 As BSD criteria cannot be applied to all biologically alive organisms, they cannot be understood as reflecting biological death per se, but as capturing some conceptual, ontological and, perhaps more significantly, moral boundary of a human being.31 ⁱⁱⁱ A comprehensive biological conception of death challenges the notion that death occurs at a point in time. Here, death involves the dissolution of the organism. It is not simply the conclusion of a process called dying, but is, itself, that process.32 In response, Holland argues that our ‘ordinary concept of (human) death’ extends beyond any biological criteria, and recognises the important of consciousness and subjective experience. He concludes that it ‘is not that one or other of the prominent definitions—biological and consciousness-based, respectively—is wrong; rather, the problem lies in the mistaken assumption that death must be defined exclusively in terms of one or the other’.33

In the contemporary milieu, there is no clear ontology of death, rather, there are various philosophical, theological, biomedical and biological perspectives. We must acknowledge the challenges this controversy presents for organ donation and, specifically, the ‘dead donor rule.’ Mistry suggests the rule is little more than a convenience that ‘allows us to keep public policies simple’,15 while Holland notes that it is unclear how the rule applies to those who ‘are in a sense dead and in a sense not dead’.33 Such concerns indicate that death cannot simply be understood purely as a matter for professionals, be they philosophers, bioethicists and/or medical scientists. Questions around death must be recognised as having an ethico-political dimension.

As such, our concern should be with how we respond to individuals who are in such liminal ‘dead and not dead’ states—what Lock calls ‘living cadavers’,29 and what Agamben calls ‘bare life’.34 Our concern should be with how, given the circumstances, these individuals wish to be treated and, therefore, with how those wishes might be given expression and recorded. The questions surrounding the nature and determination of death that are raised by organ donation and EV should be regarded as aspects of our contemporary ‘politics of death’. The controversy regarding death is no longer simply an epistemic or ontological concern, but is now also a moral problem, and it would now be unethical for the state, professional biomedicine or bioethics to impose a determinate definition in an attempt to produce a ‘convenient’ and ‘simple’ policy. Such debates should, therefore, appear in contemporary political discourse about organ donation and, furthermore, be reflected in the structural arrangements we make for donation, such as the ODR.

EV and limitations of the ODR for biocitizenship

The way in which organ donation and transplantation is socially structured and culturally institutionalised is not simply a matter of (bio)ethical analysis, but also of democratic legitimacy. It concerns the relationship between the state and its citizens and is, therefore, a political matter. This much is evident in the 2000 and 2012 reports of the BMA, in some arguments against opt-out ODRs, and in broader calls for greater ‘public engagement’ on the part of bioethics.1 ,2 ,35–37 In the context of a democratic society, the normative arguments of applied (bio)ethics and bioethicists must obtain a broader political, that is, public and professional, legitimacy in order that they might be accepted and instantiated in practice. The ways in which such things might occur range from the single-issue referendum to the local adoption of a policy following consultation with various publics to various degrees. For instance, in the case of moving to an opt-out ODR, it is likely that a broad democratic mandate will be required. Despite the fact that there appears to be a high degree of democratic legitimacy for donation per se, this may not translate into support for specific policies or approaches to donation. It is likely that there would have to be a (renewed) process of consultation, discussion in parliament (likely followed by a free-vote) and, possibly, a referendum before the ODR could be reformed on the basis of an opt-out system.^iv

Actual donation rates—64.5% (BSD) and 50.8% (DCD)—lie somewhere between the percentage of the population who reports a willingness to donate, and the percentage that is registered with the ODR.1 ,17 It would be simplistic to point to this disconnect and argue for an opt-out ODR on the assumption that undertaking decisions about donation in or around the point of death is suboptimal. Having 30% of the UK population registered as organ donors is greater than many other national contexts, such as Spain, which have higher actual donation rates.17 As Holland suggests with regard to attitudes towards death,33 we might suppose that the simplistic nature of the ODR and surveys on attitudes towards donation may hide the complexity of public opinions. Therefore, as a recent Nuffield Bioethics report argued,38 it may be that the ODR should be reconstituted such that it can record a more complex array of attitudes towards donation.

Taking note of public attitudes regarding organ donation can lead to the development of more complex frameworks for donation. Consider, for instance, the way in which Israel prioritises the allocation of transplantable organs to those who have previously registered to donate their organs.39 Such an approach demonstrates how the social structures of organ donation can be configured according to broader ethico-political concerns, such as solidarity, and not simply on the basis of individualist bioethics.40 However, on the basis of the information given in the article, one might think that a greater degree of public debate and deliberation may have been warranted. Wall et al provide an example of such engagement in the development of a protocol to govern the uncontrolled DCD of potential donors who die outside of a clinical setting. Their article also provides evidence of the potential offered by social scientific research to further bioethical ends. Their approach involved a ‘three-way partnership with government officials, subject experts and the community [who were mutually engaged through a series of] … informal consultations, expert panels, focus groups and town hall style meetings’.41 The data collected was used to derive a ‘clinically appropriate, ethically sound protocol for out-of-hospital settings … [that] is likely to be accepted by NYC residents’41 precisely because of the manner in which it was produced.

What such discussions indicate is that what is required is not simply a more sophisticated ODR. Rather, what is required is a greater level of public and political engagement with the issue of organ donation. A more responsive ODR is one aspect of this engagement. In the first instance, we might note that it is highly regrettable that the UK ODR does not register the negative attitude of individuals towards donation. In official discourse, non-registration is not taken to mean a lack of willingness to donate. Nevertheless, it may be taken as such by the family of the deceased when asked about the potential donor's wishes. Furthermore, the ODR should be structured to record the uncertainties of individuals who simply do not know if they want to donate, or who may wish for their families (or other ‘next-of-kin’) to make a decision on their behalf if donation became a possibility. In addition, as there are now two distinct ways in which one might become an organ donor, we might consider whether all individuals are equally willing to donate under DCD and BSD protocols. If not, then the ODR should record the willingness of individuals to donate in each circumstance. It is also likely that the willingness of individuals to donate under EV protocols will vary. It may be that there should be a wider public debate about, and appreciation for, EV before any attempt to institutionalise the practice is made. Such a debate might uncover such a diversity of opinion that the ODR must be reconfigured in order to record the explicit consent of individuals to EV. Present contemplation of EV not only adds weight to calls to reform the ODR along the lines suggested in the Nuffield Council on Bioethics, but also exposes the need for biopolitical, as well as bioethical, debates on the issue of EV.38