Organ donation after euthanasia still rare

They are almost a generation apart in age; one a professor, the other a PhD candidate; one a manager in the intensive care unit, the other an anaesthetist in training. Yet they share a close bond, as becomes clear during a joint interview in the professor’s cramped office. They finish each other’s sentences without interrupting, tease one another gently and share anecdotes from the last four years.

“We’re very similar”, says Van Mook, internist/intensivist at the Maastricht UMC+ and coordinator of the southern Netherlands branch of the Dutch Transplant Foundation. “Like me, Jan has a quick mind, broad interests and likes to look beyond traditional disciplinary borders. We got to know each other well during the PhD project. Every student, every PhD candidate is dear to me. But Jan’s cum laude was a real gift.”

Parallels

As striking as the differences between them are the parallels. Van Mook studied Medicine in Maastricht, as did Bollen, albeit after a bachelor’s in European Law. Both were drawn to the PBL system. And both found the time, during their studies, for all kinds of extracurricular activities and side jobs, including working as ambulance paramedics.

Their lives intersected in 2015, when Van Mook emailed an article about euthanasia and organ donation to the medical ethics committee of the Maastricht UMC+. Bollen, then a fourth-year medical student, fielded the email. Shortly thereafter, they joined forces to draw up a protocol for people who wish to donate their organs after being euthanised at the Maastricht UMC+.

Taboo

“It’s a complex question with thorny legal issues”, says Bollen. “But it was something I was very interested in, where law and medicine come together. I was intrigued by the fact that few people who undergo euthanasia become organ donors. Why not? We should at least have a good protocol for that group here at the Maastricht UMC+. That way more people would donate their organs and more lives could be saved.”

This protocol, which now forms the basis for the national standard in Dutch hospitals, provides a streamlined legal and medical procedure whereby suitable organs are removed and transplanted immediately after euthanasia. More than 60 cases have since been registered. But Bollen and Van Mook were not yet ready to let things lie. “We kept investigating the topic”, the professor says.

“As an intensivist and regional coordinator for the Dutch Transplant Foundation, I’m confronted with the shortage of donor organs every day. At the same time, more and more people are opting for euthanasia and often want to help other people after they die, for example by donating their organs. I have great respect for that – and yet it’s still rare. Jan started doing research, we published in leading journals, the American Journal for Transplantation and JAMA, we attended conferences in Europe, America and Asia. It wasn’t easy. Euthanasia is gradually becoming more accepted in the Benelux, but in most countries it’s still taboo – organ donation after euthanasia even more so. We’re sometimes verbally attacked for our views. But I think the tide is turning. Self-determination is a very topical issue, and not only in the Netherlands and Belgium.”

Two faculties

Eventually they hit upon the idea of turning the research into a PhD project. The process still wasn’t straightforward, Van Mook continues. “The research was relevant to both the law and the medical faculties. In the end, we were able to put together a combined assessment committee and celebrate a rare inter-faculty PhD. Not for the last time, as far as I’m concerned. In healthcare, law, economics and medical science overlap. It’s nice to be able to make those combinations and connections.”

Bollen successfully defended his dissertation on 1 November last year, amid a great deal of media attention. “A large group of potential donors still flies under the radar”, he explains, summarising a key finding. “In 2018, more than 8,100 people were euthanised in the Netherlands and Belgium. This figure increases every year. Ten per cent of these people would be suitable as donors, but most of them don’t realise it. GPs aren’t allowed to draw their attention to it for fear of pressuring them. And yet, we know that many patients want to make some sort of difference when they’re gone. We also know, from another study of ours, that the quality of kidneys donated after euthanasia is better than in regular donations.”

With Bollen’s dissertation and their joint publications, professor and PhD candidate hope to feed into the ethical debate on organ donation after euthanasia. “And to raise awareness”, concludes Van Mook. “There’s still a lot of room for improvement. For example, the law doesn’t permit the heart to be donated after euthanasia. As a doctor, I’d like that to change.”