Organ Donation: Presumed Consent and Focusing on What Matters

Recent newspaper reports covered the story of Jemima Layzell, a 13 year old who died suddenly of a brain aneurysm in 2012. According to reports, shortly before Jemima died, the subject of organ donation had come up in discussions with her family, prompted by the death of a family friend in a car accident. As a result, Jemima’s family were confident she would have wanted her organs to be donated. Subsequently, Jemima’s kidneys, liver, lungs, pancreas, small bowel and heart were transplanted. This meant that a record eight people’s lives were saved, prolonged or dramatically enhanced as a consequence of Jemima’s and her family’s decision.

Decisions about organ donation are extremely difficult. Family members are approached about the prospect of donating their loved one’s organs at a time of extraordinary distress. Uncertainty about the wishes of the person who has died, along with confusion or scepticism about brain death criteria, religious or other spiritual beliefs about bodily integrity, fear about how donated organs will be used, and inability or unwillingness to engage with any form of decision-making can result in the refusal of family members to allow organs to be donated. In England, family members can prevent donation even when the individual has expressed a wish to donate her organs, for instance, by signing up to the organ donor register.

For some time, discussion around how to increase rates of organ donation has centred around whether or not a system of presumed consent should be adopted. Presumed consent systems are in place in a number of countries, including Spain, Belgium, France, Austria and, as of late 2015, Wales. Presumed consent is sometimes described as an ‘opt-out’ system for organ donation. It works by assuming that, unless people express a wish otherwise, they are willing to donate their organs. In England, there is currently an opt-in system, which means that unless someone provides explicit consent for her organs to be donated, it is assumed that she does not consent. The organ donor register is used to record consent or refusal to donate. Presumed consent systems often have a lot of support, with people citing higher donation rates in countries with such systems, and the fact that many  actually sign up to the organ donor register.

It makes intuitive sense that presumed consent systems would increase organ donation rates, and those who fail to support their introduction often come under criticism. Such criticism tends to assume that failure to support presumed consent is due to a failure to properly recognise the importance of organ donation or a sentimental or squeamish attitude towards bodies as well as oversensitivity towards those who are hesitant about organ donation. Yet, even if one is very concerned with increasing organ donation rates, there are grounds for scepticism about the helpfulness of presumed consent systems as a means of achieving this.

First, it is worth recognising that presumed consent systems may, essentially, be no different from opt-out schemes. An excellent article by John Fabre and colleagues, published in the BMJ in 2010, describes in detail the Spanish system for organ donation, which is often held up as an example of a presumed consent system which results in very high rates of donation. The authors describe how, although Spain is often said to have a presumed consent system, in practice, the requirement to make sure people haven’t (at some point) expressed a desire to opt-out means that the deceased’s family is always asked for consent, and if they refuse then this is always respected.

In fact, almost all countries with presumed consent systems adopt a similar (sometimes called ‘soft opt-out’) system whereby family members are always approached to confirm that the deceased would not object to their organs being donated. This creates the opportunity for ‘family overrule,’ even where an individual has expressly signed up to be an organ donor. Rarely do countries adopt a system where the family has no right to overrule the presumed or declared wishes of a donor (Austria is one such exception).

Fabre et al point to a number of other factors that could be important contributors to Spain’s high donation rates relative to the UK: for various reasons, Spain has more potential donors than the UK (including number of road traffic accidents and provision of intensive care); infrastructural systems to promote openness and trust in the donation system; and the introduction of transplant coordinators who play an important role in all aspects of donation, including approaching family members at an early stage in order to begin discussions about the potential for donation.

It is difficult to tease out what is important and what isn’t in determining how to improve organ donation rates. Presumed consent systems may have virtues, such as signally a national commitment to increasing organ donation and helping to shift social norms towards donation and away from refusal. However, they may ultimately have little impact, and there is a risk they could reduce donation rates. I was at a talk by a transplant surgeon who was urging the audience to sign up to the organ donor register. He described how, when approaching family members after the death of a loved one to discuss donation, the information that someone had expressed a wish to donate their organs could be very helpful in supporting families to make a decision to donate: “It’s something concrete we can take in to the room and say “here: this is what they wanted””, the surgeon said. The same surgeon was also enthusiastic about the move to a presumed consent system. Yet, it seems to me, where presumed consent is adopted, the imperative for people to actively agree to donate their organs is lost (or significantly weakened). The fact that someone is on the register doesn’t express their wishes to donate in the same way if there is no opt-in: it just means they never opted-out. One worry, then, is that medical teams will be less likely to have this information about someone’s wish to donate.

Practical ethics encourages us to use reason to inform decisions about how we set up our social institutions. Sometimes the most useful thing philosophers can do is to identify unimportant and misleading lines of argument that distract from more important debates. Engaging with empirical evidence is often essential to such efforts. There is currently particular interest in organ donation and the impact the change in Wales’s policy is having on donation rates. It is vital that science-literate ethicists and philosophers attend carefully to the data emerging from Wales, questioning whether the explanations given for changes in behaviour are justified.

So far, newspaper reporting has been enthusiastic, claiming that “dozens” of lives have been saved as a result of the new system. Yet, as pointed out in an article by Margaret McCartney, and a series of responses in the BMJ, the data from Wales actually shows a small reduction in deceased donors when compared with donation rates during the same period the previous year, although caution is required interpreting these data: Wales is a small country, organ transplantation is relatively rare, and presumed consent has been in place for less than two years. Still, this has not held back excitable editors and campaigners presenting evidence from Wales in a way that indicates presumed consent is an effective way of promoting donation. This may be having an effect: the Scottish Government Minister for Public Health has announced plans to introduce presumed consent in Scotland, and there is increasing pressure for its introduction in the remainder of the UK. If presumed consent really is an efficient way of promoting organ donation, this may be an excellent move. But it will be a shame if intuitive reasoning and political expedience prevent proper collection and scrutiny of evidence vital to understanding how to increase organ donation and, ultimately, save lives.

This post has also been published on the Journal of Medical Ethics blog site, available here.