It's good to talk: organ donation and the importance of making your wishes known

NHS Blood and Transplant estimates that since April 2010, family refusals have resulted in 1,200 people missing out on a potentially life-saving transplant. Despite knowing or being informed that their relative was on the organ donor register more than 500 families have said no to donation. However, the vast majority of the public think that the wishes of somebody who wants to be an organ donor should be honoured after their death, even if their family disagrees. So what is going awry?

At the end of last year, the law was changed in Wales from an “opt in” to an “opt out” system. This means that doctors could use organs from any adult who had not made it clear that they didn’t want this to happen by “opting out”. Campaigning by the British Medical Association for an opt out system to be rolled out across the UK has pushed issues around consent for organ donation back up the agenda.

Current legislation in Britain, including new legislation in Wales, lays decisions around organ donation firmly at the door of the individual. While decisions around organ donation may revert to next of kin where the individual’s wishes are not known, there is little if any provision in British Transplant bills for the wishes of the individual to be overturned by their family.

The message of this legislation seems to reflect public opinion. An Ipsos survey run on behalf of King’s College London (KCL) earlier this year shows that the vast majority of the British public believe that the wishes of those who want to donate their organs after death should be followed, even where their family objects. The telephone survey asked one question to half of the participants and a differently-phrased question to the other half. One question emphasised the potential rights of the donor and the other the rights of the family, to see if this made a difference to the answers. Asked if the family “should or should not be able to block the use of organs from an adult who had agreed to be a donor before they died”, 88% said that the family should not be able to block their use and only 9% said they should. When the question asked if “doctors should or should not respect the wishes of the family”, 82% said that they should not, compared to 14% who said they should.

Despite the fact that legislation allows for doctors to follow through with donation even if the next of kin disagrees - and despite public opinion seeming to back this - doctors in the NHS will not use organs if the individual’s next of kin objects.

NHS Blood and Transplant is exploring ways to help ensure that the wishes of donors are honoured by their families. This points towards a wider need for us as a society to talk more openly about sensitive topics like organ donation, wills and power of attorney, so that wishes can be made clear and respected. However, this lack of conversation may be linked to a lack of preparation and knowledge about these topics which has been picked up in other research. For example, in a survey of those aged 45 and over, 45% had never heard or knew nothing about lasting powers of attorney. Our longstanding tracking survey for the Department of Health shows that a relatively small proportion (27%) of the public has already begun preparing financially to pay for the social care services they might need when they are older. 

Organ Donation Week (Monday 5th - Sunday 11th September 2016) will help to raise awareness of potential issues around organ donation consent. Against a backdrop of falling levels of organ donors it’s more important than ever to make your wishes known to your next of kin and for us as a society not to shy away from talking about such important and sensitive topics.

• Download the survey topline (PDF)
• Download the computer tables (PDF)

This blog was written by Charlotte Simms, Senior Research Executive and Josie Lloyd, Research Executive, Ipsos.

Technical note

• Ipsos interviewed a representative sample of 1,001 GB adults by telephone on 13-16 February 2016. Data is weighted to match the profile of the population. The questions were included on Ipsos’s Political Monitor survey for February.
• The survey was conducted for the Polling Club at King’s College London. The Polling Club, run by Professor Roger Mortimore, allows students to increase their knowledge and understanding of survey research and public opinion by helping to design and analyse the results from a poll carried out by Ipsos. For further details about the Polling Club, contact Professor Mortimore