Presumed consent in organ donation
Nathan Emmerich asks whether we should we presume consent to post-mortem organ donation in Northern Ireland and the UK as a whole?
Whilst the 5 years from 2007/08 to 2012/13 saw the number of postmortem organ donors rise by over 50% – meeting a target set out in the Organ Donation Taskforce Report of 2008 – the rate fell back by 3% in 2014/15, the first fall for 11 years. The publication of this data led, once again, to calls for NI, and the UK as a whole, to adopt an approach where consent to postmortem donation is presumed. This is the approach that will be implemented in Wales this December, following a decision by the National Assembly in 2013. As a devolved matter it is something that Northern Ireland could also pursue. Those who campaign for such a change suggest that it will increase the number of postmortem organ donors and, therefore, the number of lives that can be saved through the transplantation of organs.
Whilst this view is not unconvincing the evidence is not as clear as it might be. The problem is that it is difficult to compare directly the donation rates across different national contexts as factors other than the approach taken to consent can have an impact. The change in Wales offers an opportunity to get a clearer picture of this issue as, whilst other factors may be still be at play, any change in donation rates can be compared to those elsewhere in the UK with a greater degree of validity. However, it will be some time before the relevant data is available.
My own view is that such changes are unlikely to have a significant impact. The approach taken in Wales is one of a ‘soft opt-out.’ This means that in the absence of an officially registered view to the contrary, there will be a presumption that Welsh citizens consent to post-mortem organ donation. Nevertheless the families of potential donors will be able to object. This means that, regardless of any registered views, families may refuse their consent and prevent donation. Given that the alternative – a hard opt-out – means that families of dying patients may, in some cases, need to be forcibly removed from the bedside, allowing families a say in postmortem organ donation seems, despite the arguments of some, the only ethical approach.
However, considering the views of donor’s families does not mean simply asking them for a decision. A significant part of the rise of UK donation rates can be attributed to the work of Specialist Nurses for Organ Donation (SN-OD). Employed by NHS Blood & Transplant (NHSBT) they work with clinical staff and, in particular, the Clinical Leads for Organ Donation (CL-OD) and endeavor to ensure all potential organ donors are properly identified. When such individuals are identified they are available on call in order that they might engage with families, guide them through the details of donation, and secure their consent. SN-ODs offer families a single point of contact with which they can discuss all aspects of donation and raise any concerns they might have. By offering patients a professional, sympathetic and available face SN-ODs do more than solicit a yes / no answer from families, they provide support by providing assurance throughout the process.
Changes to the Process of Registration
Some recent changes to the process of registering as an organ donor will, I think, help SN-ODs in their task. Somewhat ironically these result from the introduction of an opt-out system in Wales. The UK has a single Organ Donor Register (ODR) that, regardless of which of the four nations they live in, covers all citizens. The legislative changes that will imminently take effect in Wales has required NHSBT, the body that maintains the register, to update the way the register works. Until recently it only recorded positive decisions regarding organ donation. Now it also registers negative decisions. Whilst the portals offered by Organ Donation Scotland and Organ Donation NI do not yet offer this facility, those who live in these jurisdictions can register by using the NHSBT portal. One would hope that the other portals will be updated in due course and that healthcare professionals involved in organ donation will be able to make use of all the information held on the register.
Registering the views of those who do not wish to donate is a facility that should have been made available before Wales decided to move to an opt-out; it should be part of an opt-in ODR, or so I have argued. The reason I have argued for this point is that, following its introduction, SN-ODs can now assure families that a potential post-mortem organ donor has had the opportunity to register an objection but had not elected to do so. Prior to this option becoming available, SN-ODs could tell families that an individual had given their positive consent to organ donation but they could not provide any further information.
Of course it will be some time before this assurance can be considered meaningful – suggesting that NHSBT should publicize the fact that the ODR now records refusal to consent – nevertheless, will soon become legitimate for SN-ODs to tell families that nothing can be concluded about the view of those who do not appear on the ODR. Registering the fact that an individual does not wish to become a donor may remove some of the uncertainty felt by families, a feeling that may have led some to err on the side of caution.
Nevertheless registering the views of those who do not wish to donate their organs does not eliminate all the uncertainties families might feel nor does it eliminate the need to keep the public informed about the ODR or about the process of postmortem donation more generally. Such considerations indicate that NHSBT and SN-ODs will continue to have an important role in promoting and facilitating organ donation both through ongoing publicity campaigns and through engaging with families.
Is it still Legitimate to Presume Consent?
Moving to a system where consent is presumed does not eliminate the need for these activities. Indeed, an opt-out approach can be seen as increasing the need for ongoing publicity campaigns; a system of presumed consent must ensure the public is informed and thereby provided the opportunity to register their dissent. Furthermore, a recent – and continuing – facet of NHSBT’s campaigns has been to encourage families to express and collectively discuss their wishes regarding postmortem organ donation. NI even has a day dedicated to having such discussions. Regardless of whether we have an opt-in or opt-out approach, it is important that we continue to promote such discussions as in either case family members can object to donation.
Maintaining respect for family objections also indicates that the role of SN-OD will remain vital if we are to continue in our attempts to increase – or even just maintain – current rates of donation. Again, presuming consent will not remove the need for SN-ODs. Given the perspective I have set out it is, at least to my mind, difficult to see how a ‘soft’ opt-out system can be expected to increase rates of donation, let alone do so significantly. Furthermore, given the widespread expectations that such a system would have the effect of increasing donations rates, it is possible that making such a move will be followed by a reduction in NHSBT resources for publicity and the work of SN-ODs. If the recent fall in donations rates can be attributed to the increasing pressure on the NHS and NHSBT, it would clearly be deeply counterproductive were that to happen.
Finally, given the recent debate regarding the Liverpool Care Pathway, we might think that the public are increasingly aware of not only postmortem organ donation but of issues at the end of life more generally. Indeed there are many who would like to see a greater – and more sophisticated – level of discussion and debate about care at the end of life. Whilst the public seems to be aware of organ donation in general, there is also a lack of awareness about the different pathways to donation. In the UK postmortem donation may occur following the cessation of cardiac, circulatory or respiratory function and not only following ‘Brain Death’, the declaration of death using neurological criteria.
Donation after Cardiac (or Circulatory) Death (DCD – sometimes called Non-Heart Beating Donation, or NHBD) is less common than Donation after Brain-stem Death (DBD) and the public is significantly less aware of the existence of this pathway. At the moment NHSBT provides relatively little information about these pathways, at least as part of the process of registering one’s wishes regarding postmortem organ donation. This may need to change as the public becomes increasingly aware of and involved in decisions regarding the end of life care. Furthermore, it may be that some individuals are willing to donate under protocols for DBD but not DCD or vice versa. In addition the Organ Donation Taskforce recommended that Elective Ventilation be considered for reintroduction, an idea supported by others including the BMA. Although it does not apply in NI, the Metal Capacity Act (2005) has likely settled concerns about the legality of the practice, at least in England and Wales. It would be relatively simple to recommence treating potential donors in this way. If so it may be that existing information that is provided about postmortem organ donation needs to be expanded to include this topic. Doing so may result in some individuals declining their consent to be treated in such a manner.
These considerations not only indicate that the ODR might be in need of further revision but that we should reconsider if consent to donation can be validly presumed at all. If consent to donation is not simply a yes/ no binary, but a more complex matter, then what might the default presumption be? Presuming consent under complex conditions risks undermining public confidence in postmortem organ donation. If we are to maintain rates of donation these issues may need to become a matter of public discussion. Certainly more information should be made available to the public and, if appropriate, the relevant options may need to become part of the ODR. For these reasons, without further evidence for the potential of an opt-out register to significantly increase donation rates, both Northern Ireland and the UK as a whole should not adopt an opt-out approach to postmortem organ donation. Furthermore, if there is not a significant increase in donation rates attributable to the introduction of presumed consent, the Welsh Assembly may wish to reconsider its stance.