Does a Fall in Organ Donation Rates Justify a move to an Opt-Out Organ Donor Register? 

NHS Blood and Transplant service (NHSBT) recently published their Organ Donation and Transplantation Activity Report for 2104/15. It shows that there has been a 3% fall in the number of individuals who become post-mortem organ donors. This is the first time in 11 years that there has been a fall and reporting of the figure has been accompanied by calls for the UK as a whole to move to an ‘opt-out’ system of registration; a system in which consent to donation is presumed. The context for this call is that against expectations a 2008 report by the Organ Donation Taskforce took the view that it would be premature to change the UK’s system of registration to one where consent was presumed. Instead it recommended that other methods of increasing the number of organs available for transplant should be pursued. Subsequently, between 2008/09 and 2013/14, there has been a 50% increase in the number of post-mortem organ donors. Thus, whilst this recent fall is discouraging it comes on the back of significant progress, progress that has met the targets set out in the 2008 report.

As this suggests the Taskforce did not deem a system of presumed consent to be unethical, rather it question the potential consequences of its introduction and if its effect on donation rates would be uniformly positive. Nevertheless, following a debate and vote by its devolved government, Wales will adopt such a system this December. As a recent report the Nuffield Council on Bioethics suggested, this presents an opportunity for researchers to develop a robust evidence base regarding the relative efficacy of opt-out and opt-in registers. Whilst it will be a number of years before the required data exists many bioethicists now consider presumed consent to be the common sense position.

However, if we take a moment to reflect on the numbers presented in the Transplantation Activity Report we can get beyond initial reactions in which the decline – or the fact that the post-mortem donation rate remains ‘stubbornly’ below 60% - is ascribed to the contemporary decline in altruism or an un- or anti- scientific ‘superstition and squeamishness’ about becoming a donor. Comparison and analysis of the figures contained in the NHSBT Annual Activity Reports has further illumination to offer. Whilst fewer potential donors were identified in 2014/15 than compared to 2013/14, a greater number were deemed to be medically eligible. The reported 3% decline in deceased donors pertains to the number of potential donors who medically eligible to donate, the number who were subsequently approached about donation, and the number who subsequently gave their consent.

This is the domain of Specialist Nurses for Organ Donation (SN-ODs). As recommended by 2008 Organ Donation Taskforce these individuals have been trained to identify potential donors and successfully engage with them and, in particular, their families in order to secure their consent to donation. They are widely recognised as having been central to the 50% increase in donation rates mentioned above. If this is the case, and SN-ODs have played an important role in increasing the number of organs available for transplantation, then we might consider if the recent decrease is related to increasing demands on their time. Many areas of the NHS are facing increased levels of pressure, it seems reasonable to think that Organ Donation services are not immune from this.

Unfortunately the figures alone do not allow us to come to a determinate conclusion. What we can safely conclude is that even if the rest of UK were to follow Wales by moving to a system of presumed consent, it would still be necessary to support SN-ODs in the work that they do. Even under an opt-out system built in safeguards mean that families will be consulted about possible donation and, ultimately, able to veto the retrieval of organs. The work done by SN-ODs and other healthcare professionals involved in organ donation is vital. We must not risk the recent increase in donation rates their efforts have directly contributed to by thinking that an opt-out system will mean they are no longer required.

In my view we should build on the fact that the support they offer has demonstrably increased donation rates by applying this thinking to the process of registration itself. I have previously argued that individuals should ensure that they make their wishes regarding donation known to their family. Over the past few years the NHSBT have conducted a campaign on precisely this point. I have also argued that the UK’s Organ Donor Register should record the views of donors in a more comprehensive manner. Whilst it probably has more to do with the imminent changes in Wales, rather than the eloquent strength of my arguments, the UK’s Organ Donor Register has recently been redesigned and now records the views of individuals who are unwilling to become donors.  

Nevertheless, not only are there are a number other ways in which the system could be made more comprehensive any expansion will require an on going campaign to inform the public and encourage registration. The most obvious topic in need of wider public discussion is the distinction between Donation after Brain Death (DBD) and the more recently introduced protocols for Donation after Circulatory (or Cardiac) Death (DCD – sometimes called Non-Heart Beating Donation or NHBD). Individuals should be able to express a view on their willingness to donate in both of these circumstances. If the practice of elective ventilation is to be reintroduced, then individuals should be able to express a view on this too.

Arranging this will not only require a radical redesign of the Organ Donor Register it also rules out the possibility of opt-out system of registration precisely because it is not clear if answers to these questions can be legitimately presumed. It will also require further engagement with the public on the part of the NHSBT. Over the past few years they have been working hard and doing an excellent job. Engaging in a larger discussion will be challenging. However, the same was true in the case of SN-ODs, and they have met with success. The concern that presenting a complicated picture about organ donation to the public might lead to a decline in donors is not illegitimate. Nevertheless, this fear should not prevent us from trying to develop strategies for a fuller engagement.