the trouble with opt-outs

‘Organ donation is in crisis’ declared a recent headline in The Observer, as the number of people in the UK waiting for a transplant exceeded 8,000 for the first time last year, and is likely to rise higher. ‘When the rules for organs were altered in England in 2020 – Wales adopted them in 2015 and Scotland in 2021 – expectations were high,’ the paper reports.

While expectations from politicians were indeed high in 2017, when the then Prime Minister, Theresa May, announced at the Conservative Party Conference that England would change its organ donation laws from an opt-in to an opt-out system, there were also many who were urging caution at the time. Claire Williment, the then NHS chief responsible for transplant development at National Health Service Blood and Transplant (NHSBT), said ‘there was “no magic formula” to cutting down the tally of three people a day who currently die while waiting for a donor organ’, and predicted switching to a system of presumed consent may only yield 100 extra donors each year.

An opt-in system for deceased organ donation requires foresight and action on the part of individuals to register their decision in advance. But an effective soft opt-out system also requires action because relatives are consulted after the presumed donor’s death and may deny permission for organ removal. It is therefore essential, even in an opt-out system, that people should actively inform family members of their decision to donate. Inertia in taking such action would almost inevitably mean that some people who wanted to donate would be denied the chance to do so.

Despite such reservations about its likely effectiveness, an opt-out system was duly introduced in May 2020 and became known as Max and Keira’s Law after the respective child recipient and donor of a heart in the wake of a fatal car accident.

Since then, The Observer notes, ‘The number of donors….has been crashing: in the past year, 1,403 people gave their organs after dying, down 7% on the year before. As a consequence, many will die waiting for a phone call.’ This data needs careful unpacking, however. Since the 2020 Covid pandemic, the number of deceased donations has, in fact, increased slightly from 101 in 2020-21 to 154 in 2023-24. However, there is still a backlog of cases of organ failure who survived the pandemic but could not have a transplant during it. Covid infection has also directly led to an increase in the number of patients requiring transplants, particularly of lungs.

Living donors are also an important source of organs for transplant and arguably a preferable source for kidney transplantation due to reduced ischaemic times. A recent study from the University of Nottingham showed that although ‘opt-out policies did increase deceased organ donors by a small, non-significant amount of 7%, the number of living donors dropped significantly by 29%. Overall, the opposite effects of deceased and living donors on the supply of organs result in no additional benefit in donor numbers from moving to an opt-out policy.’

Nevertheless, the total numbers of both living donors and deceased donors for the latest reporting period of 2024-25 are still in fact higher than they were in 2015-16 so to suggest they are ‘crashing’ currently is somewhat misleading. They have fallen back to almost where they were a decade ago.

The finger of blame for decreased rates of deceased donation is often pointed at relatives refusing consent. However, the commonest reasons that relatives give for refusal are either their loved one had expressed to them a clear wish not to donate, or they were not sure what they would have wanted (34.5 per cent according to the most recent data). An opt-out system still needs continual efforts to get people to discuss their wishes, even if they don’t actually have to take any other action to register their intention. Introducing a hard opt-out in which relatives’ wishes are overridden by the state is unlikely to improve the situation.

Indeed, a hard opt-out will almost certainly make things worse because public trust in transplantation medicine is a key factor in determining the number of voluntary living and deceased donations in any nation. Before the pandemic, the waiting list for transplants had been steadily falling for years and had reached a low of 5699 in 2019-2020. Perhaps post-pandemic, public trust in the NHS as a whole has never been regained. Should assisted suicide and euthanasia be legalised in the UK, concerns about people being influenced to die sooner for the purpose of donating their organs to save others will pose a further threat to public trust in organ acquisition.

Organ donation is a great advance in medical progress, but the factors affecting decisions to donate are complex and very sensitive to public perception of what has been dubbed ‘organ greed’. Christians, overall, should be supportive of transplantation medicine, but as Scripture cautions, ‘haste makes mistakes’. Reflexive political ‘quick fixes’ often rebound if warnings are not heeded.