Is presumed consent the answer to organ shortages? YesBMJ 2007; 334 doi: http://dx.doi.org/10.1136/bmj.39199.475301.AD (Published 24 May 2007) Cite this as: BMJ 2007;334:1088
In the UK in the year to 31 March 2007, 440 people died waiting for a donated organ (UK Transplant, personal communication). At the same time bodies were buried or cremated intact—it seems likely that this was not because those people objected to donating their organs but simply because they never got around to making their wishes known. Surveys show that 90% of the UK population support organ donation,1 yet our current law assumes, when people die, that they are in the minority who do not wish to donate. By changing the default position to presumed consent—assuming people want to donate unless there is evidence to the contrary—we can help save and transform more lives while respecting the wishes of those who want to donate and protecting the rights of those who do not.
Although 90% of the population support donation, only 23% have registered their wish to donate,2 and so the decision falls to the family when they have just been told that their relative has died or is dying. Not surprisingly, when they do not know their relative's wishes a large number (40%) opt for the default position, which is not to donate.3 Despite major efforts to improve transplantation rates over the past decade—through publicity and education, simplifying the registration process, and changes in legislation—the gap between the number of organs available and the number of people needing a transplant shows no sign of narrowing and the waiting list for organs stands at an all time high.4
How would presumed consent work?
Presumed consent is often portrayed in its extreme form where, if an individual has not opted out, the organs will automatically be available for donation. However, the system proposed for the UK would continue to involve the family.5 Before a change to presumed consent there would be extensive publicity advising people how to opt out. Mechanisms must be in place to ensure all sections of the public are informed and can register an objection easily.
With the new system in place, when a person is identified as a potential donor doctors must check the opt-out register. If the person has not opted out, the relatives are informed of this and, as an added safeguard, are asked if they are aware if the person has any unregistered objection. If the answer is no, the relatives are informed of the intention to proceed with donation. However, the organs would not be used if it would cause severe distress to the relatives. In this way, relatives are still involved but the approach is easier for all concerned.
Of course, the key question is does it work? It is notoriously difficult to prove a causal relation between particular determinants and donation rates and to extrapolate from the experiences of one country to another. Nevertheless, careful analyses seem to indicate that presumed consent improves donation rates. Analysis of 28 countries found that those countries that consistently implemented a policy of presumed consent had higher donation rates than those that did not.6 Abadie and Gay did a detailed regression analysis comparing 22 countries over 10 years taking account of determinants that might affect donation rates: gross domestic product per capita, health expenditure, religious beliefs, legislative system, and number of deaths from traffic crashes and cerebrovascular diseases.7 They concluded that “When other determinants of donation rates are accounted for, presumed consent countries have roughly 25-30% higher donation rates than informed consent countries.” One explanation is that, even if the family has the final say, countries with presumed consent legislation have fewer refusals.
Spain has the highest recorded donor rate in the world, at 35.1 donors per million population (compared with 12.8 in the UK).8 So what can we learn from there? Spain has a presumed consent system (although in practice relatives are consulted) and has invested heavily in transplantation9: over a decade the number of transplant coordinator teams increased from 25 to 139.10 This combination of a system of presumed consent, which portrays a positive attitude towards donation, major financial investment, and good organisation, seems to be the way forward.
Any such change must have public and professional support. This seems to be increasing in the UK,11 although we have yet to see the sustained education and debate that is required. It is not acceptable for the government to continue arguing that there is a lack of support for presumed consent without any serious attempt to test this assertion.
We all have the same aim: to improve donation rates. Current efforts to achieve this should be supported, but how long should we continue to doggedly pursue the same strategy that has failed, so dramatically, to improve donation rates over the past decade? We cannot afford to wait another five years before beginning to consider alternatives because the longer we procrastinate the more lives are lost unnecessarily. Now is the time for a public debate about presumed consent so we are ready to implement it when, as seems likely, we are having the same debate in five years' time.
A move to presumed consent is the way forward. It would be
Good for those who support donation—because they have to make no effort to ensure their wishes are followed
Good for those who oppose donation—because their wishes will be formally recorded and must be followed
Good for families—because they are relieved of the burden of decision making when they have just been told their relative has died or is dying
Good for those who need a transplant—because with more organs available more lives can be saved.
Competing interests: None declared.