David Lock: Organ donation and presumed consent—not a complete answer?

Organ donation presents a unique problem for those concerned with the rationing of medical treatment. Unlike almost any other area of medical care, the constraint on supply of NHS medical treatment is not money to fund services, but the supply of donated organs. The NHS will provide all the funds needed to undertake transplant operations, but cannot use organs to save the lives of patients unless there are organs to donate. This needs patients to sign up to organ donation during their lives, or relatives who are prepared to allow the organs of a deceased person to be used for transplant purposes.

This week NHS Blood and Transplant announced that the NHS had increased the number of donated organs by 50% since 2008. This is a remarkable increase over a short period, and was the challenge set by the Organ Donation Taskforce. It has been achieved by a planned strategy to drive up donation rates, including employing a network of 250 specialist nurses in organ donation who are able to influence the decisions family members make at the crucial time when a donation decision has to be made. The strategy has also sought to promote donation and the need for society and individuals to commit to becoming organ donors through what they describe as “hard-hitting public awareness campaigns.” This is a fantastic NHS success story and should be celebrated. 3,100 more people have had their lives saved as a result of the increase in donated organs over five years.  The numbers on the Organ Donation Register are increasing daily and hence the increase in donated organs looks set to continue. But, hard as it may be to accept this, there are still people dying each day because families refuse to allow the organs of a donated relative to be used to save the lives of others.

The media coverage of the fantastic NHS success story was astonishing.  It did not celebrate the fact that a multi-factorial strategy devised by those who know the organ donation world best and delivered across the NHS had saved so many lives by a steep rise in donated organs.  Instead journalists demanded further changes in policy on the basis that the system was still not working.  The assumption appeared to be that a magic wand should be waved to create a perfect world where everyone who needed an organ would get one.  If only life were that simple!  One of the magic wands that the reporters kept coming back to was the issue of “presumed consent.” This was presented as an obvious answer which government was refusing to accept for inexplicable reasons.  The radio listener was left with the feeling that if only government was run by journalists (and taxi drivers) all these problems would be solved in no time at all!

I was a Member of the Organ Donation Taskforce which looked at the issue of presumed consent for organ donation in 2009.  Presumed consent means that the state assumes the right to take organs from the body of a deceased person unless that person has signified their opposition to organ donation during their lifetime. There are a whole series of legal and practical problems with presumed consent.  What about recently arrived visitors to the country who have not had a chance to register their opposition to organ donation?  What happens to people who change their name (perhaps by marriage) and move house, but have registered on the opt-out register under a previous name and address? What is the position with children? How would the legislation apply to those with learning difficulties who lack the ability to opt out?  These are practical problems which can be solved, but putting in the architecture to deliver these solutions is not cheap. Substantial NHS funds would be needed to ensure that the opt out registers were kept up to date and accessible by anyone who might need to make a decision.

The key issue, as I see it, is whether it is morally right for the state to assume the right to take the organs of a deceased person without their consent just because that person has not taken the trouble to indicate their opposition during their lifetime. The answer to that is that it would be justifiable if there was evidence that presumed consent pushed up donation rates.

I went into the Organ Donation Taskforce process thinking that presumed consent would be bound to drive up the numbers of donated organs, and left it thinking that the case was unproven.  There is a temptation for lawyers to think that changing the “law” will be an answer to a societal problem.  This can be true but is not always the case.  The international evidence on presumed consent showed that changing the law does not in fact drive up donation rates—or does so only very marginally.  It is not clear why this should be the case, but perhaps it is because, in practice where countries have presumed consent, organs are still not taken from a deceased person in the face of family opposition. That means that NHS funds that would be spent on creating the presumed consent system would be much better spent on specialist nurses to persuade relatives rather than invested in legal processes which lead to compulsion forced upon non-consenting relatives.

Wales is moving to a system of presumed consent and it will be interesting to see if this increases donation rates. I suspect it may help at the margins, but will not be justified by the costs of bringing in such a system. However the presumed consent debate is another example of the invariable rule in health policy—the intuitive feeling by the public and politicians about how the “right thing” to do in a difficult health policy problem is almost always wrong. Good health policy is so often counterintuitive.

David Lock is a barrister and QC, No5 chambers. He is a board member of of Brook Sexual Health, a member of the BMA Ethics Committee, and a Honorary Professor at University of Birmingham.

Competing interests: I am a member of the Labour Party and Chair the West Midlands Branch of the Labour Finance and Industry Group. I am due to become a non-executive Board Member of Heart of England NHS Foundation Trust which is due to commence on 1 June 2013. My wife is a doctor who is employed by Worcestershire Partnership NHS Trust.

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