New campaign aims to increase donor and family consent from 57% to 80% by asking: ‘is it fair to take if you don’t give?’
Far more families must give consent for their relatives’ organs to be taken when they die if the transplant programme in the UK is to be world class, its organisers will say on Thursday.
At the launch of a major new strategy, NHS Blood and Transplant will call for a public debate, asking whether it is fair for people to accept a transplant if they or their families would not agree to organ donation.
Without a change of attitude, three people a day will continue to die on the transplant waiting list, it says. It wants to push up the consent rate from the current 57% to over 80%.
Winning families over at a moment of emotional turmoil after the death of a loved one is a key to success, campaigners say. Some families say no even though their relative was on the organ donor register.
“We urgently need a radical change in donor and family consent,” said Sally Johnson, director of organ donation and transplantation. “Almost everyone would take an organ if they needed one – but only 57% of families agreed to donation when they were asked. Fewer than 5,000 people a year die in circumstances where they can donate, so we want everyone to be proud to donate when and if they can.
“That means we need to have a serious debate in our society about our attitudes – is it fair to take if you won’t give? Is it acceptable that three people a day die in need of an organ? Is it right to allow our organs to be buried or cremated with us when they could save or improve the lives of up to nine people? Why, when the majority agree with donation, don’t we act?”
The tough new rhetoric from Johnson and colleagues is intended to help bring about a change of attitude that will make organ donation the default position – what most who die and their relatives will expect to happen. In some countries – for example Israel – those who are on the donor register have priority on the transplant list.
Wales has just taken a radical step by introducing an opt-out policy. The Welsh Assembly voted through a law that will require those who do not want their organs removed to register while they are alive. But Johnson said that presumed consent was not necessarily the best way forward for the UK.
“We need to watch what happens in Wales,” she said. “The evidence [for the effectiveness of presumed consent] is very mixed.” In Spain, she said, it was not the introduction of presumed consent but a new system to ensure families are always asked about donation by well-trained staff that made the difference. In Brazil, she said, an opt-out policy has not had the same success.
Communication is regarded as important: only about 60% of people on the donor register tell their families. Families then feel they still have to make a decision about the real wishes of their relative because they have never had a discussion about it.
A big improvement in the donor rate has been achieved over the last five years: since 2008, donations have increased by 50%. There are now specialist nurses who will talk with the families of prospective donors in every major hospital and nearly 20 million people are on the donor register.
But the needs of patients, particularly with diabetes and heart problems, and medical advances in transplantation mean that there is a growing need for more organs. Deaths from brain injuries, particularly in road acidents, have dropped. Organs from older people, even at the age of 75, can now be used in some circumstances, which means, acording to NHS Blood and Transplant, that it is never too late to register as a donor.