Organ donation in the UK: what can we learn from the British?

Dr. Dale Gardiner works as an intensivist at the Nottingham University Hospitals NHS Trust. His interests lie in the fields of medical ethics, the diagnosis of death, and organ donation after death.

In 2018, he took on the role of National Clinical Lead for Organ Donation for NHS Blood and Transplant. We asked Dale Gardiner what lessons the Netherlands can draw from the British success story.

Cultural shift following Taskforce report

Dale Gardiner: ‘In 2008, an Organ Donation Taskforce government report was published. This report called for making donation a standard part of end-of-life care. As a result, donation became an important part of patient care in the ICU, rather than purely a transplantation issue. That required a major cultural shift in thinking, talking, and acting regarding donation and transplantation.’

Introduction of specialized nurse (SN-OD)

‘A recommendation of the taskforce was to introduce the SN-OD: the Specialist Nurse Organ Donation. This is a nurse who specializes in the donation process. SN-ODs receive 6 months of training, making them better trained than doctors in conducting the donation conversation. They also have more knowledge in the field of organ donation.’

‘Previously, we had transplant coordinators who dealt with both donation and transplantation. With the introduction of the SN-OD, these matters were completely separated. The SN-OD is already in contact with the family before donation has even been mentioned. The SN-OD is present, along with the intensive care physician and the ICU nurse, during the conversation in which it is explained that treatment is no longer meaningful.’

‘After that, the SN-OD maintains intensive contact with the family. The SN-OD is also the one who, together with the intensivist, brings up donation at the appropriate moment. The SN-OD is always available for additional information and follow-up conversations. The SN-OD has a lot of experience with grief and loss. This ensures that communication regarding the end of life improves for all patients in the ICU, whether or not donation takes place after death.’

Differences in role implementation

Differences in brain death diagnosis

'Determining brain death in the UK is separate from organ donation. We also make the diagnosis for people who are not potential donors. It changes the conversation with family members. You tell them that their loved one has passed away, rather than that 'it is a multidisciplinary medical decision to stop treatment'.

In addition, it provides legal certainty: there are nationally agreed-upon criteria for brain death that are also accepted by courts. The UK and the Netherlands differ slightly in this regard. In the UK, it is brainstem death, and in the Netherlands, it is 'whole-brain death', which includes not only the brainstem but also the cerebrum and cerebellum.

We offer family members the opportunity to be present during the testing of whether someone is brain dead; this can help them accept the diagnosis. Incidentally, it still only concerns 1,500 people per year in the ICU for whom a brain death diagnosis is made, compared to 600,000 total annual deaths in the UK.'

Read also: brain death protocol

Adjustment of legislation in the UK and the Netherlands

'The UK has had an opt-out consent system since May 2020. This followed Wales, which had already switched to an opt-out consent system in December 2015. This means that in the UK, it is assumed that adults have no objection to becoming a donor unless they register a decision regarding organ or tissue donation.'

'In the Netherlands, the Donor Act was amended in July 2020. Everyone aged 18 and older is now a donor unless they have indicated otherwise. If you do not make a choice in the Donor Register, you give consent based on a 'no objection' registration for organ and tissue donation.'

Posthumous award for donors

'The task force stated that we needed to find a way to recognize and celebrate donation. The Order of St. John is a British order of chivalry that revolves around generosity and charity. A local representative of the Royal House presents the award posthumously to the donor's surviving relatives.'

'By now, 10,000 surviving relatives have received the award. This means something extra for many people. The Royal House is, after all, an institution that stands 'above the parties' and signifies something historical and lasting. I can imagine that this could also be of value to you.'

What can the Netherlands learn from the UK?

‘If I have to choose one thing, it is the success of the SN-ODs. They have brought about a cultural change in our ICUs. The UK and the Netherlands are both individualistic societies, in which we prefer to make end-of-life decisions that align as closely as possible with the patient's likely wishes. The introduction of DCD donation, for example, is partly a result of the willingness to stop treatment when it is no longer in the patient's best interest. Controlled withdrawal of treatment subsequently makes the execution of DCD donation slightly less complicated.’

‘In addition, I think we can draw the same lesson from the introduction of the opt-out consent system. We have seen in both countries that a change in the law does not immediately lead to different behavior. You are not obliged to donate, and a change in the law does not automatically lead people to think differently about donation. What we really need is a cultural shift in how we think about donation.’

What can still be improved in the UK?

‘Following the task force's recommendations, consent for donation increased for years. After the coronavirus pandemic, there was a decline, possibly due to social dissatisfaction with the national healthcare system and a general distrust of authorities. We have to work hard to regain that trust.’

‘Over the past 10 years, we have succeeded in making donation normal. It is no longer unusual to donate organs or tissues after death. In the coming years, we want to move from ‘normal’ to ‘expected’. This means that family members are not surprised when a doctor brings up donation, but expect it and have therefore already discussed it with each other. In this way, we hope to make donation a truly widely supported part of our culture.’