In 2015 Wales became the first UK country to switch from a system of people opting into organ donation, to an opt-out system in which everyone in Wales is presumed to support organ donation unless they express that they do not want to be a donor. That pioneering change aimed to increase consent rates and the scale and speed of organ donation and transplant – the best treatment for organ failure.
Thanks to research funded by Health and Care Research Wales, the NHS in Wales has gained powerful insight into the impact of opt-out system on the families involved. That work, exploring donor families’ attitudes, actions, decisions and experiences of the new system has provided the evidence for further developing Wales’ approach to organ donation for the benefit of all.
The gift of life
Over 3000 people each year in the UK are given the chance to live longer and fuller lives through organ donation, but the system has traditionally relied on individuals registering their consent to donate. However, since the introduction of the Human Transplantation Act (Wales, 2015) everyone who lives and dies in Wales is now presumed to support organ donation unless they have opted-out during their lifetime, a system known as ‘soft opt-out’. If a person in Wales decides not to express their decision, then their consent can be presumed. This is called deemed consent. But while the law aims to make organ donation the default, it also ensures that consent for donation is still sought ethically and appropriately from family members or spouses – and it is here that potential donations are lost.
Dr Leah McLaughlin, research officer at the Bangor University arm of the Wales Kidney Research Unit explains: “We wanted to understand more about what’s needed to bring about a behaviour change to make organ donation the default position for people in Wales. What are the key tipping points that lead to a decision about organ donation during the discussions at these difficult times?”
Chief Investigator, Professor Jane Noyes and the research team worked with NHS Blood and Transplant specialist nurses in organ donation and members of the public to design and deliver a study looking at consent rates, and exploring families’ views on the process. Results were encouraging, with the new ‘soft opt-out’ system showing positive but not statistically significant improvements in organ donation consent rates.
Of the 205 potential organ donor cases reviewed, 46 had not registered a decision either verbally or on the official NHS Organ Donor register, meaning that their consent could be deemed to be given under the new system. The families of 18 of these potential donors were not happy to support donation resulting in 28 donors having their consent deemed. Overall, 15% of families did not support their relative’s decision to donate their organs.
The role of the family
“Under the new Act, the role of the family has changed and family members are asked to put their own views aside to support the organ donation decision of their relative. And in deemed consent, ‘doing nothing‘ is considered a positive decision in support of organ donation” said Professor Noyes.
“We found that family members didn’t accept or understand that they were no longer the decision makers and there was a consensus that ‘doing nothing’ (deemed consent) was not yet considered a clear decision to be an organ donor. Families would have preferred to know their relative’s decision by a direct conversation or by knowing that they had registered to ‘opt-in’ on the organ donor register.”
Other reasons why family members did not support the donation decision included disagreements within the family, length or time frame to organ donation, lack of specialist nurses, and their own negative views on organ donation.
Families whose relative’s consent was deemed and where the family supported deemed consent, felt helped by the changes in Wales to do the right thing for their loved ones. Some said they were able to put their own views aside and support their relative’s organ donation decision because of the new opt out system.
The way forward
The original awareness campaign, before the opt-out system was introduced, focused on encouraging individuals to make a choice about organ donation but didn’t explain the role of the family. It was clear from the Bangor team’s research that family members needed more information and education about their changed role in decision-making.
The impact of those findings was immediate with the Welsh Government launching a new campaign focused on the importance of sharing your organ donation decision with family and the family’s role in honouring the organ donation decision of their relative.
The research team also made recommendations to address some of the other issues raised by families including: improved facilities for donor families at Welsh hospitals to make it easier for them to stay with their relative and bereavement support services to be increased for all families approached about organ donation. A new ‘befriending’ service has already been developed by specialist nurses to address the last of these.
Leading the way
Following the success of the study, the team are sharing their results with organ donation colleagues across the globe. They recently presented in Australia, who are in the process of considering introducing opt-out, and their findings are expected to have an impact on developments in England and Scotland as both countries make plans to move to a system of presumed consent.
“Understanding why people do not register on the organ donor register or why family members still feel unable to support the deceased person’s decision will have an impact on the design of future interventions to improve organ and tissue donation rates in Wales and the UK” said Professor Noyes.
“Our findings have been shared with policy makers in England and Scotland and they are considering the results when they implement similar systems in the near future.”
You can read more about the organ donation project on the study website http://organ-donation-project.bangor.ac.uk/index.php.en