© Springer International Publishing Switzerland 2016
Ralf J. Jox, Galia Assadi and Georg Marckmann (eds.)Organ Transplantation in Times of Donor ShortageInternational Library of Ethics, Law, and the New Medicine5910.1007/978-3-319-16441-0_1414. Advance Commitment: Rethinking The Family Veto Problem in Organ Procurement
(1)
Institute for Health and Social Policy, McGill University, Montreal, Canada
(2)
Sussex Law School, University of Sussex, Brighton, UK
Reproduced from [Journal of Medical Ethics, Advance commitment: an alternative approach to the family veto problem in organ procurement, Jurgen De Wispelaere/Lindsay Stirton, Volume 36, Issue 3, p. 180–183, 2010] with permission from BMJ Publishing Group Ltd.
Jurgen De Wispelaere
is a Researcher at the Institute for Health and Social Policy, McGill University. An occupational therapist turned political philosopher, he holds degrees in occupational therapy and moral sciences. Previously, he held positions at the University of Montreal (CREUM), Trinity College Dublin and University College Dublin. His main research is in the philosophical aspects of social policy and institutional design, with specific application to unconditional basic income, disability policy, parenting, and public health and health policy. He has a strong interest in the ethical and policy implications of family objections to posthumous organ donation.
Lindsay Stirton
is Professor of Public Law at the University of Sussex. He has previously held academic positions at the University of Sheffield, the University of Manchester, University of East Anglia, the London School of Economics and Political Science and the University of the West Indies. His research interests span public administration and public law, and his recently published work covers competition in health services, the implementation of basic income policies, comparative legal history, regulation of utility services in transition and developing countries. He holds a PhD from the University of London. His doctoral dissertation examined the regulation of health services in the United Kingdom since the 1980s.
14.1 Introduction
It is a well-known fact that the demand for transplant surgery significantly outstrips the supply of available organs. In the UK alone, 506 patients died in 2007–2008 awaiting a transplant, while many more patients continue to suffer significant loss of quality of life for lack of a much-needed organ transplant.1 In an attempt to increase the number of available organs, many countries have begun to rethink their approach to cadaveric donation. Controversial proposals include the use of financial incentives or advancing the case for compulsory organ donation.2 More practically, a number of countries (e.g., Belgium and Sweden) have recently switched their organ procurement policy from a system of opt-in (informed) consent to a system of opt-out (presumed) consent, which sanctions posthumous organ removal unless the donor has explicitly objected. The precise benefits of presumed consent remains in doubt, however: there would likely still be a significant shortage of organs even if we accept optimistic estimates that a move towards presumed consent laws would lead to an increase of around 25–30 % in donation rates.3
With family members reportedly blocking about half of the available donations, we believe the key to increasing the availability of cadaveric organs lies in effectively addressing the family veto.4 In contrast with proposals that aim to restrict the impact of family members on donation, we outline a scheme which gives families a positive role in the decision-making process, provided the donor values their involvement. Under our scheme, donors would appoint a designated second consenter (DSC), in most cases likely to be a family member, who would as part of the organ donor registration process signal their advance commitment to uphold the donor’s decision after the death of the latter. Our proposal gives moral weight to the distress caused to family members (and medical staff) in seeking permission for organ harvesting at a time of sorrow, while at the same time respecting the autonomy of donors and the needs of patients awaiting a transplant. We should make it clear from the outset that, under our proposal, the right of the family to veto organ donation would not be indefeasible. It does however offer donors and families the opportunity of a deliberative space in which the decision to donate can be taken at a moment which is likely to be less distressing and more conducive to the making of a genuinely informed decision.5 Our proposal has a number of pragmatic advantages that should appeal to those who disagree on ethical grounds with an approach that affords validity to the claims of family members.6 In particular, disregarding the views of donors’ families, even if morally defensible, would be politically unpalatable and could lead to a significant decrease in organ donors. Our proposal, by contrast, is politically feasible and effective in increasing the number of available organs for transplant.
14.2 Family Veto Matters
The existence of a widespread family veto may seem puzzling given that families typically have no real legal right to a say, once the deceased has validly expressed her intention to donate. In the UK, for example, the Human Tissue Authority Code of Practice on Consent advises clinicians to encourage family members and others close to the deceased to accept the wishes of the deceased, emphasising that they have no legal right to veto or overrule those wishes.7 Any reluctance to proceed with cadaveric organ removal against the wishes of the family may be due less to fear of legal liability than to an understandable reluctance on the part of medical practitioners to add to the distress of grieving family members. Medical staff routinely acknowledge the added distress or loss of control of family members confronted with requests to remove body parts from a recently diseased spouse, child or parent.8
The belief that requests to approve organ donation may cause distress to grieving families explains not only reluctance on the part of transplant staff to proceed with organ harvesting without explicit consent by next-of-kin , but similarly reluctance on behalf of medical staff to even approach families at this difficult time. Unfortunately, delay is problematic because the chances of a successful organ transplant decrease significantly as the period from the time of the donor’s death increases. While some commentators believe medical staff should be held under a required request obligation to enquire routinely about possible organ donation, it is also acknowledged that this puts staff under considerable emotional pressure.9 Needless to say, the combined effects of reluctance by medical staff to request family consent and reluctance by next-of-kin to give consent has a deleterious effect on the supply of cadaveric organs.
One obvious solution would be to proceed with a policy of routine salvaging or the compulsory removal of donor organs independent of family’s objections.10 In some cases this may involve a subtle policy of distinguishing between informing family members of harvesting but not actively requiring their consent.11 While there is some evidence that such a policy could improve organ supply, it remains unclear how one would deal with families that persist in their objection. The proposal of allowing next-of-kin to register their objection while nevertheless proceeding with harvesting smacks of cheap symbolism and will likely contribute to families’ feelings of disrespect and loss of control. Ignoring the complex emotional dimension associated with cadaveric organ donation is also likely to backfire on the supply of organs. This was vividly illustrated when, in February 2007 in Singapore, the kidneys and corneas of Sim Tee Hua were harvested against the family’s explicit objections. Because Sim had not signed a statement refusing to donate his organs, the hospital decided to go ahead with organ removal and ended up having to restrain the distressed family members by force while whisking away Sim’s body for harvesting. The Sim case caused a massive public outcry and resulted in a significant subsequent drop in potential donors.12
If ignoring family distress—either by instituting required request policies or by ignoring the family perspective altogether—amounts to bad policy (as well as, perhaps, poor ethics), are there any alternatives that take the family veto seriously whilst also addressing the organ deficit? In the next section we outline one such alternative, based on a weak form of advance commitment.
14.3 Advance Commitment As an Organ Procurement Policy
Suppose you wish to donate your organs. You sign onto the organ donor register and make a declaration of intent that your organs may be posthumously removed and used for transplant purposes. In our proposal, however, you are also asked to nominate a designated second consenter (DSC), who will be notified of your decision to become a donor and asked to register her agreement to allow your organs to be harvested upon death. While there is a superficial similarity between our proposed DSC and the nominated representatives envisaged under S.4 of the UK’s Human Tissue Act 2004, there are also crucial differences.13 When the DSC agrees to undertake this responsibility she receives an explicit request to support the posthumous removal of the donor’s organs, under the conditions stipulated by the donor (if any). Importantly, in view of ensuring donor autonomy , the DSC cannot add or alter any of the stipulations of the donor’s consent.
After being fully informed and ideally having discussed key aspects of the decision with the donor, the DSC next registers a statement of intent to agree to organ removal upon the event of the donor’s death. The DSC may of course refuse to do so after having reflected on the request, in which case the donor would be entitled to designate another person to fulfill this role. Similarly, if the DSC first agrees but then later on formally rescinds her decision, again the donor is informed and may choose to reassign the DSC responsibility to another person.
Upon the death of the suitable donor, the local donor coordinator would normally inform the DSC. In most cases, we envisage that it would then be straightforward to proceed with organ removal, and less harrowing for both medical personnel and family members than under current arrangements. In the event that it is not possible to contact the DSC, the fact that advance commitment has been obtained would be a prima facie reason to proceed with organ removal. Another possibility is that the DSC raises an objection to organ removal after the death of the donor, perhaps under pressure from the immediate family in the hospital. Under our scheme the local donor coordinator would have to accept that decision and abort the process of organ removal. It is true that this would, in some sense, violate the wishes of the donor as well as ignore the impact of this decision on the organ recipient. Our proposal in this sense offers only a weak form of commitment. Although it is possible to envisage a scheme in which the DSC’s assent, once given, would be difficult or impossible to revoke, this may be self-defeating if it discourages second consenters and perhaps even donors from signing up in the first place. Alternatively, we might consider combining the scheme outlined here with the use of financial incentives for those signing up to the scheme. Elsewhere we propose that such incentives could take the form of an organ transplant tax credit.