Ian Barker: Why we should all move to an opt-out system for organ donation

ian_barkerOn 1 December 2015, Wales will be the first country in the UK to introduce an opt-out system for organ donation. This means that patients will need to actively opt out of organ and tissue donation—otherwise consent will be assumed. This change is significant and one to be welcomed. As an advocate of organ donation, I hope the rest of the UK soon follows suit, having witnessed the benefit of transplantation and the solace it can bring to families involved.

The benefits of an opt-out system are clear, with such legislation increasing donations by tipping the balance of consent in favour of donation. Most people when asked for their preferences report to be in favour of donation, yet only 29% of the UK population are on the donor register. At present, with hundreds of people dying each year while awaiting transplants, any measure we can take to encourage people to donate should be welcomed. When such a system was introduced in Belgium, donation rates increased by 55%.

However, many challenges would need to be overcome. Firstly, although the majority of people are in favour of donation, an opt-out would rely on the assumption that people are adequately informed about the process—at least enough to make a decision either way. This ignores the possibility of ignorance or lethargy with regards to finding out about donation. The reality is that many organs would be retrieved without true informed consent, as the process of consent is traditionally seen as an active process and not a result of inaction. The fact that the opt-out system was repealed in Brazil only a year after it began demonstrates the problems such a system would face, especially when families were not allowed to overrule decisions—so called hard opt-out systems, in which doctors are still allowed to remove organs even if relatives know that the deceased would object to donation but had failed to opt out during life.

We should look to the system in France, which has a soft opt-out system, one were family consent is still sought. Such a system, with its respect for family rights, must surely still help to reduce the decision burden on the family, at the same time as respecting their opinions.

Presently in the UK, much of the decision burden is placed upon the family, and those who didn’t wish to donate may have their preferences vetoed by the family as no formal system exists to recognise their objection. So, ironically, an opt-out system may strengthen the rights of those not wanting to donate.

Problems may arise if families are not in agreement with the presumed consent; and I would be of the opinion that if families are against the donation it should not occur, as donation in the face of objection would destroy the trust between the doctor and the family, and could have an adverse long term impact on donation rates. I would follow the BMA’s support of an opt-out system, but with caveats that donation should not occur in the face of family disagreement or if it’ll cause distress to the family unit.

It will be interesting to see how the soft system of opt-out soon to be introduced in Wales pans out—hopefully the rest of the UK will follow its lead.

Ian Barker is an anaesthetic registrar with an interest in transplantation. He is currently in the final year of a LLM (medical law) programme at the University of Edinburgh.

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None declared.

  • Mike Davis

    I am a fortunate recipient of a liver transplant and I realise how difficult the decision is for relatives to opt in to a tranplant decision. It is a great shame that so many relatives cannot bring themselves to agree to transplant, despite donation cards and intentions.

    Part of the challenge is to encourage potential donors to have the discussion with relatives as they sign up to the donor schemes. In that way, the decision could be so much easier when the possibility is raised.

    There are many more people on the transplant list than their are actual donors. Realising the intentions of potential donors would go some way to reduce the inevitable disappointment when through non availability of organs, illness or death, people lose the chance for productive life.

  • That an opt-out system would lead to more donors is not justification enough. The ends do not always justify the means. I do not accept that presumed consent is ethically sound.

    In the long term, a more rational attitude toward cadavres – in which people have no say over the use of their bodies after they are dead – would be a better justification for such a policy; in which case ‘consent’ would become an irrelevance.

    In the short term, far more effort could be expended trying to convince people to opt-in or otherwise capitalise on indifference. This could take the form of compulsory statement of donation preferences when applying for official documents.

  • steve black

    There is a subtle difference between presumed consent systems and other forms of opt-out systems that makes a huge difference to acceptability and consent.

    Currently we are presented with many opportunities to opt-in to the register (e.g. on driving licence forms). But they have low response rates as people are highly likely to go with the default option (which is not to register). A simple switch to make opting in the default option (and possibly providing the option in a wider range of official forms) would probably get far more pope on the donor register without making any presumptions about their consent.

    This is a system where you opt-out when given the change and has most of the benefits of the Welsh system but none of the concerns around consent. Why has this not been tried?