Do we, as humans, have the right to decide when to end our own lives? Treating suicidal patients is a crucial responsibility for psychiatrists, but what do we do when there are no more treatment options available, and the suffering becomes unbearable? In many countries, patients with terminal illnesses now have the right to seek assisted dying, and in some, even for non-terminal conditions. In Belgium, euthanasia has been legal since 2002, both for somatic and psychiatric conditions. The most well-known cases involve patients with diseases like ALS or other neurodegenerative disorders who wish to end their lives. In Sweden, where euthanasia is not legal, the issue gained attention in 2020 when a patient with ALS received assistance from the Swedish doctor Staffan Bergström (though it was not classified as euthanasia).
In the fall of 2023, I traveled with a group of resident psychiatrists from Sahlgrenska University Hospital to Ghent, Belgium, to visit both a psychiatric clinic and a voluntary organization (Vonkel) that handles requests for euthanasia. Joining me on the trip was Mikael Sandlund, a senior professor of psychiatry and an active member of SMER (the Swedish National Council on Medical Ethics).
What's the situation in Belgium?
Belgian law stipulates that doctors do not commit a crime if they assist a patient in dying, provided that several conditions are met.
The patient must be legally competent, have a repeated desire for euthanasia.
The patient must suffer from an untreatable and unbearable condition, which may or may not be terminal.
If the disease is not terminal, a second doctor must also approve the request.
This means that even those suffering from psychiatric illnesses can request euthanasia.
Initially, there was little interest in psychiatric euthanasia in Belgium, and it wasn't something offered by regular healthcare. Today, euthanasia for terminal illnesses is entirely accepted and is often performed by general practitioners. However, psychiatric euthanasia remains less common and much more challenging to obtain. It was for this reason that Vonkel was founded when a patient donated money and was approved for euthanasia. However, one of Belgium's most renowned psychiatrists, Lieve Thienpont, who evaluates euthanasia requests, was recently charged and later acquitted. This has made many doctors hesitant to engage in psychiatric euthanasia and has led them to refer patients to Vonkel.
Vonkel was started as a voluntary project and is still run by dedicated individuals. This is evident in the setup, as the premises are designed to be home-like, and the staff is highly engaged. Patients and their relatives can visit Vonkel without prior appointments and even remain anonymous. No medical records are kept at this stage; the essential thing is to listen to the patients' stories and answer any questions. This is done by volunteers without specific medical training. It is reported that many patients feel a great sense of relief from sharing their suffering. They also do not “risk” involuntary commitment or receiving unsolicited advice.
If a patient wishes to continue the process and appears to meet the legal requirements, they are scheduled for an admission interview with a nurse. This interview aims to gather information for the doctor's visit, which can be delayed by up to a year due to a shortage of psychiatrists. It is during the doctor's visit that the patient's decision-making capacity and perceived suffering are assessed. Using medical records from regular healthcare providers, a diagnostic assessment is made, and the treatments that have been attempted can be reviewed. This process often takes a couple of years because it's necessary to make the aforementioned assessment and ensure that the desire to die remains constant over time. When the psychiatrist eventually approves, the patient can consult another doctor to plan the euthanasia. This doctor, in turn, makes their assessment, but since they are rarely psychiatrists, it largely relies on the judgments of others.
Psychiatric assessment
Personally, I find it challenging to distinguish between a genuine, chronic desire for death and more acute suicidal tendencies that may be a symptom of an illness. According to the doctors at Vonkel, this distinction is made by following patients over an extended period. The most common patients have mood disorders, personality disorders, and PTSD. In a report of the 100 first cases, 48 were approved, and 35 proceeded with euthanasia (Thienpont et al BMJ Open. 2015). Out of the 13 who were approved but did not follow through, 8 withdrew their request when the mere possibility of death made them feel better.
In recent years, it has been noticed that a significant proportion of those seeking euthanasia have autistic traits, even if they have no previous diagnosis. The most typical patient is relatively young, has childhood trauma, and has made numerous suicide attempts over the years as well as many different treatments with questionable effectiveness. Many have difficult relationships and have experienced numerous failures during their illness. It involves chronic suicidality that does not (in theory) seem significantly affected by external circumstances. However, "severe" diagnoses like bipolar disorder or schizophrenia are not very common.
Witness accounts
The most emotional part of the day was listening to the four patients - who sought and received approval for euthanasia - tell their stories. They were all articulate and could share their stories. Two of the four were feeling better and no longer wished for euthanasia, one due to treatment and the other because the COVID-19 pandemic provided a natural pause. One of the four had a date for the procedure later in the fall. It was a strange experience to hear her talk about it and know when it would happen. She seemed to have suffered significantly for several decades and had multiple diagnoses. Was it the right decision? I don't know. At least she seemed to think so, as did the staff at Vonkel. What struck me was how confident the staff seemed that this was the right choice. I am more skeptical, as a few of the patients were very young and significantly influenced by external factors. How can we be sure that maturity itself won't improve the symptoms? Have all treatments really been attempted?
Difference between Sweden and Belgium
We also visited a psychiatric clinic at the university hospital in Ghent. It emerged that they seem to have many more inpatient beds than we have in Gothenburg, but, on the other hand, they have less developed outpatient care. Their legislation on psychiatric compulsory care placed emphasis on a patient being a danger to themselves or others, making compulsory care seem less common than in Sweden. Additionally, they were more cautious with forced medication and especially restraints. Agitated patients were managed by isolating them. The question is which approach is more invasive in terms of personal privacy. However, our Belgian colleagues were quite surprised that we have no euthanasia in Sweden at all! Perhaps there are significant cultural differences, where Sweden is somewhat more paternalistic and collectivistic? However, they did not think that the availability of euthanasia significantly affected healthcare. In regular healthcare, the treatment path was followed, and it was only when the patient requested it that they were referred to the euthanasia pathway through Vonkel. They believed that assessments of acute suicidality were not affected, and the issue mainly revolved around chronic suicidality.
A comprehensive impression
I take with me a multitude of impressions, especially from Vonkel. I am struck by how kindly they spoke about the patients and how much they cared about them. At the same time, I found it almost grotesque to allow such young people to go through with euthanasia. But who am I to judge? The population in Belgium seems satisfied with its legislation, as do the patients and doctors. I believe it is unlikely that Sweden will introduce similar legislation, but we might get closer when it comes to terminal illnesses. In any case, I will take away a multitude of new impressions and experiences that will likely strengthen my role as a psychiatrist and as a human being.
A variant of the text was previously published on Substack of Erik Smedler (“Can the brain understand itself?”). □