“The Dutch carried out the first nationwide survey using the death certificate methodology,” Deliens explains. Instead of writing to random physicians to ask them to recall specific cases, this method starts from consolidated data drawn from death certificates to reach the physicians involved in end-oflife decision-making – so the sampling is more complete and accurate.
Deliens and colleagues carried out this type of study in Flanders and found that about two percent of all deaths in the region were in fact cases of euthanasia. “In any country in the world, you have believers and nonbelievers,” Deliens asserts. In the case of euthanasia, “believers said that euthanasia was an existing medical practice and that we needed to regulate it, whilst non-believers said it was only a marginal issue, and regulation would create more problems than solutions.”
The results of this initial study showed that euthanasia was a reality involving around 1,000 deaths every year in Belgium – so something needed to be done. The research group published its first findings in the prestigious medical journal The Lancet in 2000. “The impact was enormous,” Deliens recalls. “Even before publication, we were invited into the Belgian parliament to present the results of the study.”
However, Deliens has always refused to take part in the political debate. “I just presented my results and said to the members of parliament: it’s up to you now. It’s not for scientists to find political solutions,” he states. “The strength of my research is that we never took a position in favour of, or against, the law.”
Two years later, the Belgian Parliament passed the Euthanasia Act. This seemed to reflect public opinion: a study by Joachim Cohen and Deliens showed that, between 1981 and 1999, citizens of nearly all European countries were increasingly in favour of euthanasia.
About 10 years after its creation, in Brussels, Ghent and Antwerp, the End-Of-Life Care Research Group still explores a range of issues in public health, epidemiology, bioethics, pharmacology and criminology. For instance, the group is interested in finding out where people die (at home, in the hospital, in a nursing home) and why – in particular, the place of death varies strongly between metropolitan areas like Brussels and smaller Flemish towns. Also, the group is studying medical care and death in nursing homes and developing indicators to monitor the quality of end-of-life care.
Even though the legal system and basic health care infrastructure is shared in Belgium, the group’s recent research confirms there are strong regional differences. In the Dutch-speaking community, life-shortening euthanasia is more frequent, while medical doctors in the French-speaking community seem to favour continuous deep sedation. In that respect, the French-speaking community of Belgium is closer to the Latin-French culture of southern European countries, and the Dutch-speaking community closer to its Dutch, Germanic and Nordic neighbours.
Since the law was passed, “the actual practice hasn’t changed, but its quality has,” Deliens notes. “I know clinical practice is not ideal – but it’s better than in most countries of the world, where secrecy brings risks.” Deliens is glad that the medical culture in Belgium now allows physicians to discuss the issue more openly and concretely with their colleagues and patients.
In the 2002 Belgian Act, euthanasia is defined as intentionally terminating life by someone other than the person concerned, at the latter’s request. The physician who performs euthanasia commits no criminal offence when he or she ensures that: the patient has attained the age of majority and is legally competent and conscious at the moment of making the request; the request is voluntary, well considered and repeated and is not the result of any external pressure; the patient is in a medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from a serious and incurable disorder caused by illness or accident. The act also describes the medical doctor’s duty to hold several conversations with the patient to discuss possible therapeutic and palliative courses and to consult another independent physician. In addition, any physician who has performed euthanasia is required to fill in a registration form, drawn up by the Federal Control and Evaluation Commission within four working days.
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