Guest Post by David Shaw
Re: The untimely death of the UK Donation Ethics Committee
Most people I know want to donate their organs after they die. Why wouldn’t they? If you have to die, you might as well do your best to save several other lives once you’re gone. But organ donation is a more ethically complex topic than many people realise. From Spring 2014 until April this year I was a member of the UK Donation Ethics Committee (UKDEC), which advised NHS Blood and Transplant and the various UK health departments on the ethics of organ donation and transplantation. The committee included doctors, lawyers, nurses, ethicists like me, and ‘lay’ members – ordinary members of the public. In my JME article, I discuss the committee’s work and why it came to an end.
UKDEC dealt with a wide variety of topics. We advised the Welsh Government on the ethical implications of a switch to ‘deemed consent’ to organ donation in Wales, undertook an analysis of the role of the family in donation, and engaged with ethnic minorities and religious groups to facilitate discourse about donation. Most of all, our work was important because we provided practical ethical guidance to healthcare professionals who were often unsure about the ethics and sometimes the legality of new developments in organ donation. Every year new technologies emerge that can enable donation where it was previously impossible, or which can improve the viability of donated organs. Sometimes doctors would approach UKDEC for our advice on their protocols that wished to make use of these new innovations. One of UKDEC’s final publications was a discussion paper concerning so-called “elective ventilation”, where a patient is placed onto on life support not because it will physically benefit him or her, but in order to facilitate organ donation.
But perhaps the most important contribution UKDEC made concerned organ donation after circulatory death (DCD). Nowadays, over 40% of UK donations involve DCD. But until around a decade ago, almost all organ donation in the UK took place after neurological determination of death – in other words, you had to be “brain-dead” before your organs could be donated and transplanted into recipients. In contrast, DCD involves organ donation after a patient’s heart has stopped beating. This might sound relatively straightforward, but in fact many doctors and nurses objected to DCD because of concerns about the potential reversibility of death, the burden on families and perceived conflicts of interest. Indeed, with the use of new technologies, heart donation after circulatory death is even possible, which might seem paradoxical.
Although DCD has radically increased the number of organs available for transplant, the considerable reluctance amongst healthcare professionals once seemed difficult to tackle. In response to this problem, UKDEC spent over a year discussing DCD and producing guidelines on the practice. These guidelines made it clear that DCD is entirely compatible with good clinical and ethical practice. Following this formal, independent ethical support, those working in donation around the UK soon came to offer the option of DCD to more families as an end of life opportunity, enabling many more patients to donate, and many more patients to become recipients of organs.
Why am I writing about UKDEC in the past tense? Because the committee is no more. Despite the continuing support of the three other UK health departments, the English Department of Health stopped UKDEC’s funding with only a few month’s notice at the end of 2015, declaring its work complete. Unfortunately, this is not the case: we had plans to explore several topics over the next few years, including the ethical principles used to allocate organs, the robustness of the consent system for donation, and the concept of reciprocity in donation. And of course, there are always new technological and clinical innovations which require ethical input before they can be put into practice. Further ethical review of heart DCD is one such example.
Because of UKDEC’s work, hundreds more patients have become donors and thousands more patients have been saved or had their lives improved by transplantation. Had UKDEC not existed during the debate about DCD, it is likely that doctors and nurses would have continued to be wary of that type of donation, meaning that many of these lives would have been lost. In the absence of UKDEC, there is no comparable authority, leaving healthcare professionals with nowhere to turn for advice regarding practical, ethical and legal issues regarding innovations in donation. This means that such innovations are less likely to be used, or even worse, continue without any ethical oversight or review, threatening the whole donation and transplantation programme. It is unfortunate that the committee is no more, but like a deceased organ donor, UKDEC has left behind a lifesaving legacy.
Note: all of UKDEC’s publications are available for free at this link: http://www.aomrc.org.uk/all-publications/reports-guidance/ukdec/