The British Medical Association today (Tuesday 28 June) rejected a motion calling it to reconsider its position on presumed consent for organ donation. This has happened just as the Welsh Assembly has announced it is introducing a bill to legalise presumed consent. The BMA supports presumed consent but Welsh doctors were trying to get it to rethink its position for both practical and ethical reasons. I believe these doctors were right and that the BMA has made a bad decision.
In the UK, the law regarding removal of organs from people after their death is set out in the Human Tissue Act 2004, covering England, Wales and Northern Ireland, and the Human Tissue (Scotland) Act 2006.
Both Human Tissue Acts state that if a person has, while alive and competent, given consent for some or all of their organs or tissue to be donated following his or her death (by joining the NHS Organ Donor Register or by other means, such as discussing their wishes with those closest to them), then that consent is sufficient for the donation to go ahead.
Once consent is established, relatives or other relevant people should be advised of the fact and encouraged to respect the deceased’s wishes. They will be treated with the utmost sensitively but advised that they have no legal right to veto or overrule them.
The Organ Donation Taskforce established a series of expert working groups to help gather evidence and advice on all these areas. The resulting report was delivered in November 2008. It recommended that the current system of opt-in be retained.
Presumed Consent (PC) for organ donation is presently utilised in 22 countries. With a PC law, all are deemed organ donors after their deaths unless they opt out of the system.
Wales aims to be the first UK country to introduce such a system.
Under the proposed ‘soft’ system of presumed consent, health professionals would still consult with families on whether they wish their relative to donate an organ after death.
The Welsh First Minister Carwyn Jones said last year that he hoped the move would increase the number of organs available for transplant.
And earlier this month he announced a bill in the Senedd’s legislative programme for the coming parliamentary session in the Welsh Assembly.
The British Medical Association (BMA) supports presumed consent but it remains controversial amongst doctors and many transplant surgeons oppose it.
Earlier this year CMF made a submission to the House of Commons Welsh Affairs Committee consultation on the matter.
The consultation was launched under the grandiose title of ‘Pre-legislative scrutiny of the proposed Legislative Competence Order in Council on Health and Health Services: Presumed Consent for Organ Donation’
Our submission expressed ethical and public policy concerns about the concept of presumed consent for organ donation and concluded that presumed consent should not be introduced anywhere in the UK.
The motion the BMA debated today at its annual representative meeting in Cardiff read as follows:
Motion (303) by WEST GLAMORGAN DIVISION:
That this Meeting calls on the BMA to reconsider its policy on presumed consent for organ donation in view of the experience in Spain, where the evidence shows that presumed consent has had no effect on organ donation rates.
So why should delegates have supported this motion calling for the BMA to rethink its position?
Figures released just last week show that the number of people on the NHS Organ Donor Register has now reached a record 18 million. This means that in the UK as a whole, nearly 30% of people are registered to donate their organs after their death. There has been a 26% increase in organ donation since 2007 and we are on course to deliver the 50% increase by 2012-13 targeted by the ODTF report [NHS Blood and Transplant, Thursday 23 June].
This increase is to be welcomed. However, we know there is still a shortage of organ donors and, as a result, long waiting lists for transplant operations in the UK.
The BMA current policy on presumed consent assumes that changing legislation in the UK from an opt-in to an opt-out system, or presumed consent, will significantly increase the number of potential donors.
But this assumption is significantly flawed.
There are many factors beside legislation which affect donor rates. These include public awareness, religion, cultural attitudes to donation, hospital processes, provision of intensive care beds and numbers of road deaths, to name a few. In Spain, an important factor is ensuring that the relatives of potential organ donors are always approached by someone specifically trained for the purpose.
The experience of Spain is interesting. It does have a higher number of donors than the UK, and has presumed consent legislation but this is not a simple causal relationship.
It is acknowledged by the director of the national transplant organisation in Spain that the increase in organ donation during the 1990s could not be attributed to a change in legislation which had remained the same since 1979. In fact, the improvements in donor rates in Spain followed the implementation of a comprehensive national procurement system. (NHSBT statement 2008).
Moreover, although some European countries with opt-out systems do have higher donation rates than the UK there is no clear evidence that opt-out is the sole factor. Sweden has an opt-out law but their donation rate is lower than that of the UK. And within almost all countries, large local variations exist in donation rates, despite a common legislative background.
Moreover we should remember that the increase we have seen in the UK has been achieved without presumed consent but by implementing some of the recommendations from the Organ Donation Taskforce, especially improved promotion and public recognition of organ donation.
The issue of presumed consent is about more than donor numbers though. We cannot ignore the ethical and practical concerns it raises. These include concerns around the ascertaining and timing of a diagnosis of death, concerns that treatment before death could be influenced in some way by the preservation of organs after death, concerns for some about the value of bodily integrity, and what is sacred about bodily death, and concerns that presumed consent undermines donation as a gift and erode trust in professionals – a concern equally held by recipients and their families. And of course concerns that silence indicates a lack of understanding rather than informed consent to the policy.
In short, there is no convincing evidence presumed consent legislation would make a difference in the UK to donation rates. However we do know it would generate ethical concerns by assuming consent even when it has not been given.
Instead we should be welcoming the increase in donors registered since 2007 that has been achieved through other means and discuss how we can build on that success.