Organ donation has increased in the UK, however, the demand for organs for transplant exceeds the number of organs available. One way of increasing organ donation is by changing the way people consent to donate organs after death by adopting a ‘soft opt-out’ system. This is where it is presumed that people are happy to donate their organs after their death unless they have indicated otherwise, by registering their decision to opt-out. People will still be encouraged to register their decisions to donate as usual. This way, decisions about organ donation are given to individuals to make during their life, not to their families after they die. By changing to a ‘soft opt-out’ system, it is hoped that more people will donate their organs and more transplants can happen.
Wales moved to a soft opt-out system in December 2015 – meaning that since 2015 most adults living in Wales are presumed to want to donate their organs unless they opt out on the NHS organ donor register, or tell a relative or close friend that they do not want to be an organ donor. Consent rates in Wales have improved. However, implementation of the new system was not straightforward and consent rates were increasing before the law change. Specialist Nurses in Organ Donation found the new system difficult to navigate; people in Wales did not fully understand the changes; and family member(s) continued to think that they were the decision makers for organ donation after their relative died.
In 2020 England also implemented a ‘soft’ opt-out system of organ donation similar to Wales. The Department of Health and Social Care commissioned PIRU to undertake an evaluation of the new legislation – the Organ Donation (Deemed Consent) Act, 2019.
The purpose of the study was to learn more about the impact of the legislation in England on: consent rates; number of transplants; public attitudes and behaviour; and the experiences of family member(s) and close friends who are approached about organ donation after their relative dies. The evaluation also explored the impact of the change in legislation on NHS staff, clinical and managerial; and families of potential donors from minority ethnic groups.
The research comprised:
There was a high level of patient and the public involvement throughout the evaluation.
The law change has not yet produced an increase in the rate of consent to deceased organ donation. Deemed consent is not generally viewed as being equal to a decision explicitly made and recorded by the deceased during their life. Deemed consent has made the donation process even more uncertain and ambiguous as families are being given mixed signals as to whether they are the decision makers or not. Given the traumatic circumstances which often precede deceased organ donation, the (very) ‘soft’ opt-out policy adopted in England is thus unlikely to help families at their most vulnerable support organ donation decisions.
The research has generated a number of recommendations designed to improve the current system of deceased organ donation without resorting to another change in the law.