Individual and Family Consent for Organ Donation

I presented some initial thoughts on the conflict between individual and family consent for organ donation at Friday’s conference, which I will briefly detail here.

Ireland has an organ donation rate of 21.2 donors per million population (pmp), higher than the United Kingdom (16.3 donors pmp) but lower than the current world leader, Spain (33.8 donors pmp). Despite these figures, in 2009 there were 515 people on the waiting list for donations. Of the 154 donors available for referral in 2009, 90 ultimately donated their organs, 42 were deemed medically unsuitable and in 22 cases the family refused consent.

There are three main systems of eliciting individual consent for organ donation. The first is informed consent, wherein consent is not assumed and individuals must consciously decide to become donors by opting into the system - for instance, by getting a donor card, telling their relatives or signing up to a registry. Ireland, the UK and Germany all operate informed consent systems. An alternative system is presumed consent, wherein consent for donation is assumed, and individuals must opt-out by signing a register or informing their next of kin if they do not wish to donate. Spain and Austria currently use a presumed consent system. Finally, mandated choice makes no assumptions about consent, and instead simply requires that individuals make a choice either way. Such a system is currently being trialled in the UK. When applying for driver’s licenses, applicants are now required to answer a question about donation before they can proceed with their application.

Behavioural economics research has suggested that changing from an informed consent to a presumed consent system would increase the number of donors available for transplant by harnessing the tendency people have to stick with a default. For instance, in a UK Transplant survey, 17 per cent of respondents intended to sign up to the register but 'hadn't got around to joining', as the default option is not to be on it.  It is argued that presumed consent systems avoid the low levels of take up seen in opt-in systems, which are a product of procrastination or inertia. By assuming consent while allowing those who object to opt out of donating, you should increase the number of donors by including those who would otherwise put off signing up into the system automatically. Some research papers have found 25-30 per cent differences in rates between informed and presumed consent countries, even controlling for other factors which may influence rates (Abadie and Gay, 2006).

However, a closer analysis of consent for donation carried out by Healy (2006) suggests that the solution to increasing donor rates may not be so simple. In all but one OECD country investigated, the family of the deceased are offered a veto in deciding about donation; their consent is sought before any harvesting takes place. As a result, ultimately, it is the next of kin who decide whether the deceased’s organs will be transplanted or not. Indeed, Minister for Health James Reilly recently stated that “No organ removal will ever happen against the wishes of a family. Full Stop." Research on family consent suggests that actions like signing up to a registry or getting an organ donor card may serve as important signals to family members about donation preferences, UK data shows that families refuse consent in 10 per cent of cases when they knew the wishes of the deceased, but in 40 per cent of cases where they did not know.

These findings have a number of implications. Firstly, the role of insights from behavioural economics in a family consent framework compared to an individual consent structure is less clear; cultural factors such as the role of family in society may play a more important part in determining levels of donation. Abadie and Gay (2006) suggest that the two different systems may still produce different donation rates, as they provide different cues for families, and thus influence consent levels. If most people in these two systems stick with the status quo, families in informed consent systems may infer that if the deceased did not opt-in, they did not have strong preferences to donate, whereas under a presumed consent system those who did not opt-out are not likely to have had strong preferences not to donate. Families may be more likely to conclude that the deceased would have consented to organ donation in a presumed consent system because of the framing.

Secondly, it is an open question as to whether it is possible or desirable to eliminate the role of the family in decision making around consent. It is hard to imagine a doctor knowingly going against the wishes of a family, particularly during what is surely a very stressful, high-pressured environment. However, the scope for individual autonomy in such a system is unclear; as it does not seem to be possible to ensure that your organs are or are not transplanted in the event of death, beyond asking family members to honour your wishes. Is it possible to retain a sense of individual autonomy within a system that also allows for family consent? Pete Lunn suggested at the conference that organ donor cards or registries could allow for people to state whether they wish for their family to have a right to make a decision about donation for them.  Again, it is not certain whether this would make doctors more likely to follow the wishes of the individual over those of the family in the event of conflict, but it may reduce instances of such conflict by convincing the family of the deceased’s wishes.  

Finally, the extent to which people are aware of the organ donation system (and a recent Eurobarometer survey would suggest that they are not - only 25 per cent of Europeans know the regulations governing organ donation in their own country) in place may also influence individual opinions on this issue. Many people I have discussed this with are unaware that their wishes regarding organ donation do not have to be upheld.  The role of organ donor awareness campaigns could also be rethought, is it worth launching campaigns which aim to increase levels of family consent rather than individual consent, given the current system?

We are currently building on this work by designing surveys to get a better understanding of the feelings of members of the public about consent for donation. The Fine Gael/Labour Programme for Government contains a commitment to introducing a presumed consent system in Ireland, though a 2009 consultation on such a change indicates that most bodies that deal with organ donation oppose such a change. Any thoughts or opinions are most welcome.