Families saying no to donation results in missed transplant opportunities for UK patients
Friday, 15 Jan 2016
More than 500 families in the UK have said no to organ donation taking place since 1 April 2010 despite knowing or being informed their relative was on the NHS Organ Donor Register and wanted to donate. These family refusals have resulted in an estimated 1,200 people missing out on a potentially life-saving transplant.
Family refusals result in missed transplant opportunities
NHS Blood and Transplant has released the figures to draw attention to the fact that family refusals mean that people either wait longer for a transplant or die on the transplant list. There are currently 6,578* people waiting for an organ transplant across the UK. When a family says no to donating, someone waiting for a transplant may miss out on their only opportunity for a transplant. Around 1,000 people die in need of a transplant across the UK each year.
Although registering a decision to donate on the NHS Organ Donor Register is a legally valid decision to donate your organs, in practice if your family strongly feel that they cannot support donation, despite staff answering their questions and concerns, donation doesn’t go ahead. That is why it’s vital to tell your family that you want to be a donor and to register your decision on the NHS Organ Donor Register.
Is overriding acceptable?
Some families refuse to support a relative’s decision to be an organ donor in spite of the fact that the majority of people find the idea of someone overriding a decision to donate unacceptable. 73% of respondents to a survey carried out by NHS Blood and Transplant said they thought your next of kin shouldn’t be able to overrule your decision to donate after you have died, whereas only 11% thought it was acceptable to do so.
Steps NHS Blood and Transplant is exploring
The organisation, which is responsible for the NHS Organ Donor Register and for matching and allocating donor organs, is now exploring whether there are further steps it could take when approaching families to ensure more potential donors’ decisions are honoured by their relatives. This includes making clear to families that consent or authorisation has already been provided by the individual themselves.
The relationship hospital staff build up with families at this time is very important, particularly given that the family members of potential donors provide a lot of important information about their relative’s medical, travel and behavioural history before donation takes place.
NHS Blood and Transplant is looking at ways to reduce the number of families who feel unable to support their relative’s decision to be a donor. Ideas being explored include:
Providing families with a leaflet that explains that consent (or authorisation in Scotland) rests with the person who has died and not the family left behind. These leaflets have been produced by the Human Tissue Authority for Wales, Northern Ireland and England.
Continuing to ask a potential donor’s family to help assess the risk of their relative donating organs (for example by providing information about their loved one’s medical and travel history), but not actually asking the next of kin to confirm consent or authorisation. Consent or authorisation from the next of kin is not required in law if someone had registered a decision to donate on the NHS Organ Donor Register, if they had expressed a decision in life to donate or if their consent can be deemed in Wales. The current way of approaching families, and paperwork NHS Blood and Transplant asks families to complete, may be adding to a family’s confusion at a stressful time and leading them to think they need to make a decision themselves.
Asking families to sign a document confirming their reasons for overriding their relative’s decision in the hope this might help a family to discuss and consider their relative’s decision and hopefully honour it. In Scotland families are already required to complete a retraction form to record why they overturned a relative’s decision to donate. A similar form could be rolled out elsewhere across the UK.
Sally Johnson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “We understand that families are approached about donation at a very challenging time and that it can come as a surprise to find out a relative had made a decision to donate. This can make it difficult for families to support donation going ahead and their relative saving lives. “We want to draw attention to the fact that while most families approached about donation support their relative’s decision to donate as recorded on the Organ Donor Register, a number of families each year override a previously made donation decision. We hope that by raising this issue we will prompt more families to talk about donation and reduce the number of families overriding their relative’s decision to donate. “Isn’t it important that the dying wishes of as many people as possible are honoured by their families so more lives can be saved and transformed through transplantation? We know that donor families take enormous pride from knowing that their relative helped others. We also hear that some families have gone on to regret overriding a relative’s decision to donate. “We think our proposed changes would make the existing legal situation clearer to families and hopefully help them support their relative’s decision. But I urge you to act too if you want to be a donor. Register a decision to donate on the NHS Organ Donor Register and talk to those closest to you about donation. The more we all talk about organ donation, the less ambiguity and room for misunderstanding there will be. So please talk to your relatives and tell them that should the time come, you want them to support your decision to save lives after your death.”
*UK Active transplant waiting list as of 7th January 2016.
NHS Blood and Transplant is currently exploring how it can reduce family overrides, as across the UK the number of people that donated organs fell for the first time in 11 years in 2014/15. Each year, only around 5,000 of the half a million people who die across the UK die in circumstances where they are able to donate their organs. In 2014/15, 1,282 people donated organs after their deaths, resulting in 3,341 deceased donor organ transplants. It is important that the organisation continues to work with the rest of the NHS and families to increase donation so more lives can be saved through transplantation.
Legal situation:
The following legislation regulates organ donation across the UK:
England and Northern Ireland: Human Tissue Act 2004
At the heart of the law is the principle that the decision to use your organs for transplantation rests first and foremost with you. If your decision to donate, or not donate, is registered on the NHS Organ Donor Register, then as long as no one forced you to make the decision, you were aware of your actions and had the information you needed, your decision is legally valid.
England and Northern Ireland leaflet
Wales – Human Transplantation (Wales) Act 2013
At the heart of the law is the principle that the decision to use your organs for transplantation rests first and foremost with you. Unless you have registered or expressed a decision not to donate your organs after your death, you will be regarded as having no objection to donation. Your consent will be deemed to have been given unless you fall into one of the exemptions or if your family and friends can show that you did not want to be a donor. If you have registered a decision to donate, there is no legal right for your family to override your consent; however families are still involved in discussions about organ donation.
Wales leaflet in English
Wales leaflet in Welsh
Scotland - Human Tissue (Scotland) Act 2006
Any adult, or child aged 12 and over, who is able to make their own decisions can give authorisation for their organs or tissue to be donated. If you want to donate your organs or tissue after you die, you can add your name to the NHS Organ Donor Register. Or you can let someone close to you know your decision – simply telling someone counts as a form of authorisation under the Act.
Leaflet produced by the Scottish Government to set out the legal situation in Scotland
Populus survey:
Survey of 2,072 UK adults carried out by Populus on behalf of NHS Blood and Transplant. People were asked: Do you think that after you’ve died your next of kin should be able to overrule your decision to be an organ donor.
218 (11%) responded yes,
1,519 (73%) responded no
335 (16%) responded I don’t know.
