Jeremy Hunt launches opt-out organ donation plans in England

This article was taken from: https://www.theguardian.com/society/2017/dec/12/jeremy-hunt-launches-opt-out-organ-donation-plans-in-england-and-wales

By: Sarah Boseley Health editor

System would presume consent but experts criticise plans, saying there is no yet evidence that opt-out policies increase donation

The health secretary, Jeremy Hunt, is to launch plans for an opt-out system of organ donation, asking people to overcome their “fatal reluctance” to discuss the issue with family and friends.

Under the plans, everybody in England would be presumed to be happy to donate their organs on their death, unless they have signed up to a register stating that they do not want that to happen. In practice, however, it is unlikely that organs would be taken against the wishes of the family.

The government’s ambition to change the NHS organ donation programme was announced by Theresa May in her Conservative party conference speech in October. Last year, she said, “500 people died because a suitable organ was not available. And there are 6,500 on the transplant list today.”

NHS Blood and Transplant’s figures show that 1,100 families in the UK decided not to allow organ donation because they were unsure, or did not know whether their relatives would have wanted to donate an organ or not.

“Every day, three people die for want of a transplant, which is why our historic plans to transform the way organ donation works are so important. We want as many people as possible to have their say as we shape the new opt-out process,” said Hunt.

“As well as changing the law, we also need to change the conversation – it can be a difficult subject to broach, but overcoming this fatal reluctance to talk openly about our wishes is key to saving many more lives in the future.”

The consultation will ask three questions: how much say should families have in their deceased relative’s decision to donate their organs? When would exemptions to “opt-out” be needed, and what safeguards will be necessary? How might a new system affect certain groups depending on age, disability, race or faith?

There are particular shortages of organs for people from ethnic minority backgrounds. Only about 6% of donors are black or Asian, although those groups make up about 10% of the population. Orin Lewis, chief executive of the Afro-Caribbean Leukaemia Trust and co-chair of the National BAME Transplant Alliance, said: “As a parent of a young man who sadly passed away from multiple organ failure, I gladly welcome the prime minister’s decision to instigate a much-needed public consultation on the relative positive and negative merits of England having an opt-out donation policy.”

There is still debate over how well an opt-out system works. Spain is often hailed as a success story and has a good supply of organs. However, the opt-out was introduced at the same time as big investments in the transplant programme, and in particular the appointment of transplant coordinators who instigate conversations with the family of a dying patient. If families refuse, their wishes are always respected.

Wales launched an opt-out system in December 2015 and the following June it was announced that it had already been a success. Half the 60 organs transplanted in the six months came from people whose consent had been presumed. But a recent year-on-year comparison showed little difference, with 101 donors under the old system and 104 under presumed consent.

In Wales, 6% of the population have signed the opt-out register. The policy requires that the consent of next-of-kin must always be sought.

Hugh Whittall, director of the Nuffield Council on Bioethics, said there were concerns that the government was asking how an opt-out system should be introduced, rather than whether it should. “The government should not be making this change until there is evidence that it works, and until we are confident that it won’t undermine people’s trust in the system in the long-term,” he said.

“That evidence is simply not there yet, though we do know some things that do work. Key amongst those is raising public awareness, encouraging family discussion, and better support and communication between specialist nurses and bereaved families.

“Even in systems where an opt-out approach has been adopted (such as Spain), it is generally recognised that these are the elements that have made a difference, rather than the legal basis of the donation.”

Keith Rigg, consultant transplant surgeon, said too many people were waiting and he welcomed the opportunity for discussion. “Encouraging people to talk openly with their families about their organ donation wishes is really important. There are strong feelings for and against opting out and there is no convincing evidence from Wales yet that this had made a difference. It is important that any proposed changes are based on evidence, encourage the wishes of individuals to be known and acted on, and support families to make the right decision about their loved ones at the time of their death,” he said.