Blind spots in the euthanasia debate

When Belgium legalised euthanasia in the early 2000s, scientific research conducted by the VUB played a crucial role in this process. In the late 1990s, Professor Deliens and his research group on End-of-Life Care demonstrated that there were already more than 1,000 cases of euthanasia per year in Belgium — even before a legal framework existed. “That was about 1 per cent of all deaths at the time. Everyone was shocked by that,” he says. “Suddenly, parliament realised that this practice already existed and needed to be properly regulated.”

Those studies made an international impression. The research method was innovative: a large sample of deaths was analysed using anonymous questionnaires sent to doctors about their medical decisions at the end of a patient’s life. The results were published in leading international journals. In 2013, the research group established that euthanasia was already present in 4.6 per cent of all deaths — higher than the official figures at the time. Since then, no further funding has been found to repeat such a mortality study. 

But according to Deliens, that is precisely where the problem lies today. “We demonstrated at the time that doctors in our country under-report cases. Not all cases of euthanasia are reported to the federal monitoring committee. That problem probably still exists today, but it has not been investigated recently.” He sees a greater reluctance to officially report cases of euthanasia, particularly in Wallonia. “Many doctors there feel that what happens between them and their patients is nobody else’s business.”

According to Deliens, this also partly explains why the official figures differ so greatly between Flanders and Wallonia. “Around 80 per cent of reported euthanasia cases come from Flanders, whereas you would expect a 60/40 ratio there. Nobody is making a political issue of this, even though ethical and deontological questions need to be raised.”

What bothers Deliens most is that, in his view, the current debates on possible legislative changes are based on hardly any proper evaluation research. “People keep saying that everything has been sufficiently studied. But that’s not true. The government has never made any systematic investment in evaluation research on euthanasia.”

The last large-scale study by the VUB dates from 2013. Since then, it has become increasingly difficult for researchers to gain access to data. “Even the department that manages death certificates has refused to cooperate with these major studies for more than 10 years.”

Deliens compares the situation in Belgium with that in the Netherlands, where the government invests more than 2 million euros every five years in a multidisciplinary review of the euthanasia law. “There, lawyers, doctors, sociologists, epidemiologists and ethicists work together. Any discussion about potential legislative changes is based on scientific reports. That is a completely different way of working.”

According to him, Belgium and the VUB have, ironically, been overtaken by countries that started much later with euthanasia legislation. “Around the turn of the century, we were pioneers. Now you see a huge research dynamic emerging in Canada, New Zealand and Australia, supported by the government. We can only be envious of that.”

At a recent global conference on assisted dying in Australia, Deliens saw just how extensively the monitoring and registration systems there have been developed. “At that conference, it was said half-jokingly that doctors and various other parties involved there have to fill in as many as 20 forms for a single euthanasia procedure. That is probably an exaggeration, but it does mean they have virtually complete reporting.”

In Belgium, he believes, public oversight remains very limited. “Here, it is essentially the performing doctor who is the only one to fill in and submit a form after the procedure has been carried out. That system provides absolutely no insight into how many people and exactly who has made a request for euthanasia, or how many have been refused, and it encourages under-reporting. To improve this, at the very least, the request for euthanasia should also be reported, and the second doctor and pharmacist involved should also report to the supervisory committee.”

One of the most sensitive issues in the current debate on euthanasia is dementia. This topic came back into the spotlight following the euthanasia of Lode Deconinck, one of the participants in the TV show Restaurant Misverstand on the VRT . That programme follows a group of people with early-onset dementia who run a restaurant together, showing in a warm, human way how they continue to function despite their condition.

According to Deliens, the debate risks focusing too narrowly on patients with advanced dementia, whilst there are many more situations in which people lose their mental capacity. He refers, for example, to patients with brain tumours who fully meet all the conditions for euthanasia, but who, due to rapid deterioration, become mentally incapacitated before the procedure can be carried out. “That happens regularly. But our law currently states that a patient must be competent at the time of the procedure.”

According to him, Canada has developed a more interesting model. There, a so-called waiver exists: a pre-established consent that allows euthanasia to still be carried out if a patient loses their capacity during the process. “That is regulated much more clearly in legal terms.”

In recent years, legal debates have arisen in the Netherlands concerning patients with advanced dementia who had previously drawn up a declaration of euthanasia but reacted with confusion or resistance during the procedure. “If a patient pulls their arm away at that moment or says ‘you want to kill me’, it is psychologically and morally almost impossible for a doctor to proceed, even if it were legally permissible at that moment. In Quebec, where euthanasia is permitted in cases of advanced dementia, the legislature has resolved this by explicitly stipulating in the law that the procedure is unlawful if a patient with dementia resists.”

Deliens also warns against another misconception: that people with dementia are, by definition, no longer capable of making decisions. “Just because someone forgets their keys or no longer knows their address does not mean that person can no longer think meaningfully about the end of their life.”

He believes that neurologists and memory clinics urgently need to develop clear euthanasia guidelines on how doctors should deal with capacity in cases of dementia.

Deliens emphasises that euthanasia is just one aspect of a wide range of medical decisions at the end of life. Research by the VUB suggests that there is likely to be an interplay between euthanasia and palliative sedation.

“When euthanasia increases, palliative sedation decreases, and vice versa. But palliative sedation remains much more common.” The latest major study from 2013 showed that palliative sedation still accounts for around 12 per cent of all deaths — far more than euthanasia. Yet there is no legislation governing this in Belgium, whereas in Quebec, in particular, it is regulated by law alongside euthanasia and assisted suicide.

According to him, assisted suicide also remains a legal grey area in Belgium. The main difference lies in the doctor’s role; we speak of euthanasia when the doctor administers a lethal substance that causes the patient’s death, whereas in the case of assisted suicide, for example, the doctor merely prescribes a substance that the patient must collect from the pharmacy themselves and take or administer to themselves. Unlike the Netherlands and Canada, Belgium has no separate legal framework for assisted suicide. “The Euthanasia Act defines only euthanasia. However, the Euthanasia Commission treats a limited number of instances of assisted suicide as cases of euthanasia. As a result, many potential cases of assisted suicide fall entirely outside societal scrutiny because they are not reported.”

According to Deliens, there is a need for a broader legal framework covering all medical decisions at the end of life. “If you change the law, you have to look at the whole picture. Euthanasia, palliative sedation, assisted suicide: these are interconnected.”

Despite the VUB’s international reputation in the field of end-of-life research, Deliens has seen funding dry up in recent years. Major research projects on euthanasia receive hardly any support anymore.

“We do still carry out studies, for example on euthanasia among psychiatric patients, but often with limited resources from organisations such as DeMens.nu or smaller VUB funds. There are hardly any large structural funds left.”

He finds this problematic, especially now that the public debate is raging once again. “Politicians are talking today about legislative changes, but without proper evaluative research, this remains largely ideological and offers no guarantee of reliable public oversight.” For Deliens, the conclusion is clear: Belgium needs a new, broad and multidisciplinary research programme on medical decisions at the end of life.

“We were once a leading nation. But if we take our legislation seriously, we must invest once again in science, transparency and quality control. Otherwise, we risk becoming blind to what is really happening.”