Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition
A study by Belgian researchers and published in the Journal of Medicine and Philosophy on January 25, 2021, examines the practise of euthanasia in Belgium and concludes that legal requirements are being undermined and safeguards ignored. The study concludes that:
there are shortcomings in the Belgian euthanasia law, the application of that law, and the monitoring of euthanasia practice. This leads us to conclude that several of these shortcomings are structural and thus require more than simply increased oversight.
The study was conducted by Kasper Raus, Bert Vanderhaegen and Sigrid Sterckx from Ghent University and examines the official Belgian euthanasia data within the context of other studies that examine the application of the Belgian euthanasia law. This study is done by Belgian researchers who have been examining the Belgian euthanasia data for many years. One may disagree with the conclusion of the study but the data is impeccable.
Looking at key issues.
The study points out that since euthanasia was legalized in 2002 in Belgium, the debate on the issue has continued. There has been several legislative proposals to change the law since 2002. The study states:
All but two proposed amendments were voted down. The Euthanasia Law was first amended in 2005 to provide legal protection for pharmacists dispensing the lethal medication for the performance of euthanasia (Law of 10 November 2005). In 2014, the Euthanasia Law was amended again, this time to allow euthanasia for minors who are judged to have “capacity for discernment,” without setting an age limit (Law of 28 February 2014).
The study points out that there is a yearly increase in the number of euthanasia deaths, but the number of actual euthanasia deaths is unknown due to high percentage of unreported euthanasia deaths. The study states:
According to the latest official report, 2359 cases of euthanasia were reported in 2018 and 2656 cases in 2019 (Federal Control and Evaluation Commission for Euthanasia [FCECE], 2020). Given that 108.745 people died in Belgium in 2019, reported euthanasia accounts for 2.4 percent of all deaths. By contrast, the most recent anonymous physician survey study suggests that, for Flanders (the Dutch-speaking part of Belgium) in 2013, the number was 4.6 percent of all deaths (Chambaere et al., 2015). A follow-up study looking more closely into the euthanasia cases reported in the anonymous survey showed that only around 60 percent of them were reported to the FCECE (Dierickx et al., 2018). There is thus a significant extent of under reporting.
The study points out that the characteristics of those who die by euthanasia has changed. Euthanasia has become more common for people over the age of 80 who live in nursing homes. The study states:
The official reports of the FCECE likewise show a shift in euthanasia characteristics. The latest report (covering 2018 and 2019) shows an increase of reported euthanasia cases not only for unbearable psychological suffering, but also for so-called “polypathology,” which accounts for 17.4 percent of all euthanasia cases reported in 2019 and represents the second most common indication for receiving euthanasia (after cancer, which accounts for around 62 percent of all reported euthanasia cases) (FCECE, 2020).
Euthanasia based on "polypathology" means that the person is not necessarily dying but has multiple chronic conditions. The study defines "polypathology" as:
“the co-occurrence of multiple chronic or acute diseases and medical conditions within one person”
The study states that the growth in the practice of euthanasia does not necessarily signify a concern, but rather all people should be concerned about how the:
legal requirements of the euthanasia law that are intended to operate as safeguards and procedural guarantees in reality often fail to operate.
The researchers focus on three kinds of safeguards or procedural guarantees:
(1) the legally defined due care criteria for eligibility for euthanasia;
(2) the consultation of a second (and sometimes third) physician; and
(3) the reporting of euthanasia cases to the FCECE.
The legally defined criteria for eligibility for euthanasia.
The first issue is voluntariness. The study states:
How the voluntariness and well-considered nature of the request should be assessed is not stipulated in the Euthanasia Law, and no standardized tool is provided either by professional medical organizations or by the FCECE. This has given rise to the criticism that it is unclear how reliable the physician’s assessment of voluntariness can be in the absence of standardized assessment tools (Kim, De Vries, and Peteet, 2016).
The study points out that the requirement that the patient experience constant and unbearable suffering is a subjective criteria that can only be assessed by the patient. Physicians can be involved with the assessment, and can suggest ways to alleviate suffering, but the patient is not required to accept effective treatments. This is a subjective criteria.
The study discuss the criteria that a person must be experiencing a serious and incurable disorder caused by illness or accident. This does appear to be less subjective, but the study points out, who is to determine if the condition is serious? This is subjective because one person may consider their condition serious, while another may not consider the condition to be serious. There are also many incurable "disorders" that are related to disability. People with disabilities have rightly pointed out how these definitions focus on them.
The study questions the definition of the terminal illness. They point out that the Federal Control and Evaluation Commission for Euthanasia (FCECE) use a broad definition for the term illness.
Illustrations of potential overstretching
The study examine how the law has been interpreted and they suggest that there are three areas of overstretching of the law. They state:
The first illustration pertains to the criterion of incurability, the second concerns the legal requirements for patients experiencing psychological suffering, and the final illustration is that of so-called polypathology.
The first issue that the study examines is the application of the incurability requirement. They point out that euthanasia is being permitted for people who are curable but are refusing treatment. The authors refer to the recent FCECE report which stated:
When considering whether suffering can or cannot be alleviated, one has to take into account the patient’s right to refuse treatment or even palliative care, for example when this treatment has side effects or involves methods of administration he/she considers unbearable. (FCECE, 2020, 20; authors’ translation)
Similarily the Oregon assisted suicide law does not require a person to be terminally ill (within 6 months), but rather requires that a person would be terminally ill without treatment within 6 months.
The authors are not questioning the right to refuse treatment, they are questioning the approval of euthanasia, when effective treatment is possible. They stated:
Of course, we are not arguing that it would be permissible to interfere with patients’ rights to refuse treatment, which is a fundamental moral right (and is also enshrined in the Belgian Law on Patients’ Rights, 2002). Patients always maintain the possibility to refuse treatment, without having to justify this decision. However, such refusal should never automatically make a patient qualify for receiving euthanasia.
Psychological suffering caused by a psychiatric condition is also a contentious question. The law allows euthanasia for physical and psychological suffering but it does not define psychological suffering. The authors suggest that psychological suffering is being interpreted in an increasingly broader way. The study states:
Available empirical evidence and reports show that euthanasia is performed increasingly frequently in cases of psychological suffering (e.g., for schizophrenia, borderline disorder, or depression) (FCECE, 2020).
In 2017, the Flemish guideline stated that euthanasia for psychological suffering can only be done after the patient has tried all possible treatments. It recommended at least one year must pass before euthanasia for psychological suffering can be approved and it stated that if the patient refuses effective treatment, that this would invalidate their request for euthanasia. The authors point out that this is a new directive and its effect cannot be evaluated.
Polypathology
As stated earlier, "polypathology" that is, a combination of various conditions, has become the second most common reason for euthanasia in Belgium. The authors suggest that the problem with polypathology is the wide interpretation of its use.
The study explains that conditions included within the definition of polypathology include:
reduced eyesight which could result in increased social isolation, polyarthritis, reduced hearing to complete deafness that inhibits the person’s ability for human contact, early stage dementia, and incontinence (FCECE, 2020).
Several of these conditions are normal for elderly people to experience. Remember, approval for euthanasia, based on polypathology, does not require the person to be terminally ill. It is possible that someone who is losing their eyesight and hearing would be approved for euthanasia, as happened with the Belgian twins who were otherwise healthy but died by euthanasia out of fear of becoming blind.
The study points out that euthanasia based on "tired of living" is already being approved under the concept of euthanasia for polypathology. The study states:
Based on a broad understanding of polypathology, some commentators argue that the concept can also cover tiredness of life. In an interview with a Belgian newspaper, health law Professor Herman Nys argued that persons who are tired of life are able to receive euthanasia under the current Euthanasia Law because, due to their older age, they are likely to have several age-related conditions. In that same interview, the president of the FCECE admitted that such cases of euthanasia for tiredness of life are indeed already being reported to the Commission (Beel, 2011). This is problematic because these cases are likely not to meet the legal criteria.
A priori control: Consultation of one or two independent physicians.
The Belgian euthanasia law, like other euthanasia laws, requires that two independent physicians must be consulted before a euthanasia is approved, and in the case of psychiatric or child euthanasia, a third independent physician must be consulted with expertise in the area of concern.
The study points out that there are some serious concerns with the application of the law. According to the study:
In its 2018 report, the FCECE states that for polypathology, it considers any GP to be a specialist (FCECE, 2018). This has far-reaching implications. In 2019, polypathology represented 17.4 percent of all reported euthanasia cases and a staggering 47 percent of all reported nonterminal euthanasia cases (FCECE, 2020).
By way of example, we can refer to cases of euthanasia for psychiatric disorders. Because most patients suffering from psychiatric disorders are not imminently dying, two physicians will have to be consulted in such cases. The Euthanasia Law requires that the second consulted physician must be either a specialist in the condition the patient is suffering from, or a psychiatrist. In the case of euthanasia for psychiatric suffering, this frequently boils down to the same, as a specialist in the psychiatric condition will likely be a psychiatrist. However, if a patient with psychiatric suffering is diagnosed with another condition, the case can be reframed as a polypathology case; hence according to the FCECE, any GP can be the second consulted physician. Under these circumstances, euthanasia could thus be performed without any involvement of a psychiatrist; some research suggests that this is indeed occurring. A recent study by Dierickx et al. into the reported cases of euthanasia for psychiatric disorders found that: “Although it is a legal requirement to do so, a psychiatrist was not consulted in all cases with a diagnosis of psychiatric disorder” (Dierickx et al., 2017, 7).
The study suggests that since the FCECE allows a GP to be a specialist for conditions defined as polypathology, this has led to more conditions being defined as polypathology.
The study also points out that a 2015 court decision found that the opinions given by the consulted physicians are not binding. The outcome of this decision is that the attending physician is legally allowed to go ahead with the euthanasia, even if the consulted physician says No. This means that unless the case requires a psychiatric or pediatric assessment, there is no purpose for the second assessment. The study states:
Indeed, the fact that a physician could perform euthanasia and be in conformity with the legal requirements even when the consulted physicians report that in their opinion the patient blatantly is not suffering continuously and unbearably without prospect of improvement or clearly does not have a serious and incurable condition, has raised concern.
The concern about the lack of consultation in euthanasia deaths is found in the empirical data. The study states:
The occurrence of a lack of consultation of an independent physician is also confirmed by the most recent empirical study on the frequency of euthanasia. In a supplementary appendix to their article, Chambaere et al. (2015) report that in 2013 no independent physician was consulted in 7.4 percent of all cases under study (which amounts to 26 cases of a total of 349) (Chambaere et al., 2015). These cases were not reported to the FCECE because it claims that a second and third physician was consulted in every reported euthanasia case (FCECE, 2018).
Reporting to the Federal Control and Evaluation Commission for Euthanasia (FCECE)
The next concern examined is the posteriori control or after the death reporting system. The Belgian law, like the Netherlands, Canadian and American assisted suicide laws, require the physician who carries out the euthanasia to also be the physician who sends a report to the FCECE. This is a self-reporting system that is designed to protect physicians from the fear of prosecution. The study stated:
Taking into account that euthanasia concerns the intentional termination of someone’s life, from a legal perspective it would be perfectly logical to require a systematic notification of euthanasia cases to the medical examiner and the Public Prosecutor. This had, in fact, been the approach followed in The Netherlands from the early 1980s. However, when at the end of the 1990s initiatives were taken in The Netherlands and Belgium to draft a legal framework that would decriminalize euthanasia, that particular approach was considered too problematic. Practice in The Netherlands had shown that less than half of the estimated total number of cases of euthanasia were reported. It turned out that physicians dreaded the administrative burden and the high risk of prosecution (Gevers, 1996).
The study uses the phrase "high risk of prosecution" when in fact prosecution was rare in the Netherlands in the 1980' and 90's. Nonetheless, the study describes the current system of reporting in this way:
In Belgium, the Euthanasia Law requires that all euthanasia cases be reported to the FCECE. This Commission, which is neither a court nor an administrative body, is supposed to check for each reported case whether the legal criteria were met (Dierickx, 2003). It is composed of 16 members: eight physicians, four legal experts and four experts in the care for incurably ill patients.7 The requirement to report cases of euthanasia to a Commission of which half the members are physicians and which will not result in an automatic notification of the Public Prosecutor was considered essential to elicit the collaboration of physicians who perform euthanasia (Vansweevelt, 2003; Balthazar, 2003).
The study explains that the Belgian reporting system requires two parts, an anonymous part and the nonanonymous part. If the majority of the FCECE express concerns related to the anonymous part, the FCECE will examine the nonanonymous part that provides the names and information related to the death. The study explains that in 24.8% of the deaths the nonanonymous part of the report was examined in 2018/19. A referral of the report to the public prosecutor will only occur if two-thirds of the FCECE committee members agree. The report states:
In the 18 years since the law entered into force, only one case has been referred (FCECE, 2020). Important to note is that this euthanasia case was televised as an episode of the Australian show Dateline; hence, the specifics of this case came to public attention. Since the TV show made clear that at least one of the legal criteria for euthanasia had not been met, it would seem that the FCECE was left with no alternative but to refer the case to the Public Prosecutor.
The study later refers to the problem of the composition of the Committee. It is well-known that Dr Wim Distelmans is both the chair of the FCECE and one of the leading euthanasia doctors in Belgium. Clearly this is a question of "conflict of interest" since many of the most controversial euthanasia deaths are done by Dr Distelmans.
The study then examines the lack of response to the under-reporting of euthanasia in Belgium. The study points out that recent studies indicate that at least one-third of all Belgian euthanasia deaths go unreported. The study states:
Recent research suggests, for example, that roughly one in three cases of euthanasia is not reported (Dierickx et al., 2018). Moreover, comparisons of reported cases of euthanasia with unreported cases have found that “Unreported cases were generally dealt with less carefully than reported cases” (Smets et al., 2010, 4). The FCECE should be aware of this empirical research. One could wonder whether the FCECE or the Belgian Parliament should not acknowledge this as a problem that should be addressed.
More concerns about the Belgian reporting system. As stated before, Belgium requires an Anonymous and a Nonanonymous reporting system that was designed to encourage a higher rate of euthanasia reports being submitted, and yet, Belgium has a higher rate of unreported euthanasia deaths, than the Netherlands, even though the Netherlands does not have an anonymous part of the report. The study points out that approximately 80% of the Netherlands euthanasia deaths are reported, while in Belgium it is estimated to be 67%.
In the 2018 report the FCECE acknowledges the unreported deaths when they state:
they are unable to compare the number of reported cases to the number of actually performed cases.
The study points out that Anonymous reporting makes it difficult to ensure that the basic legal requirements have been met. The study quotes the FCECE statement that:
“the demand for a strict and full independence of the consulted physician is already very difficult and in reality unattainable”
The study states:
When the attending and consulted physician share a last name, the familial tie could perhaps be suspected, but in other cases (no therapeutic relation and no hierarchical link), checking their dependence or independence is much less evident.
The study points out, as I stated earlier, that most of the Commission consists of practicing physicians who are monitoring their own cases. Since the Anonymous part of the report does not include the name of the physician, therefore it is impossible to know when a conflict of interest has occurred.
Another concern is the concise nature of the euthanasia report.
The study explains that compared to the Netherlands reporting system, the Belgian reports are very concise. The study illustrates the problem:
In one example, the attending physician reported only the following as a reason why the suffering could not be alleviated: “Illness was unsusceptible to further treatment. Further deterioration and decline were to be expected” (FCECE, 2016, 25; authors’ translation). However, such an answer amounts to a mere declaration that the suffering could not be alleviated and does not therefore provide a reason why the suffering could not be alleviated. The answer to the question “why could the suffering not be alleviated?” cannot simply be “because the suffering could not be alleviated.”
The study points out that the concise nature of the reporting misses key elements. It states:
More specifically, elements that cannot be directly checked include whether or not the patient was conscious at the time of the request, whether, for adult euthanized patients, the person was not legally incompetent, and whether or not the result of the consultation of the consulted physician(s) was communicated to the patient (Delbeke, 2012; Nys, 2016).
Another concern with the Belgian reporting system, as stated earlier, the opinion of the consulting physician does not need to be included. The study states:
A third matter of concern regarding the reporting form is that it does not require for the report of the consulted physician(s) to be included. The reporting physician merely summarizes the report of the consulted physician(s). The Commission is thus obliged to rely on the reporting physician to truthfully represent the advice of the consulted physician(s) (Balthazar, 2003).
The composition, role, and powers of the Commission.
As stated earlier, the FCECE is primarily made up of practising physicians, most of whom are directly involved in euthanasia. I also stated that the chair of the Commission is Dr Wim Distelmans, who is the leading euthanasia doctor in Belgium. The study states:
In its 2018 report, the FCECE describes a controversial case where life was terminated without the patient’s request. According to the FCECE, this case was heavily debated, with nine members in favor of referring the case to the Public Prosecutor and seven members against referral. As the two-thirds majority required for referral was not reached, the case was approved by the FCECE (2018). Hence, the question arises as to whether, instead of operating as a mechanism for societal monitoring, the Commission could operate as a control device of physicians, by physicians, for physicians, or perhaps even as a protection device?
...From the enactment of the Euthanasia Law to the end of 2019, 21,126 cases were reported to the Commission,10 yet the first time a case was ever referred to the Public Prosecutor was on 27 October 2015 (Nys, 2017).
The study reinforces its concerns by referring to the FCECE resignation letter from one of its members. The study states:
The fear that the FCECE operates as a shield that prevents problematic cases from being referred was fueled by the recent resignation of neurologist Dr. Ludo Vanopdenbosch (2018). In this letter of resignation, Dr. Vanopdenbosch, who stressed that he has no principled objections to euthanasia and that he has performed it several times, doubted both the FCEC’s objectivity and its independence. He explained in his letter that this could be illustrated with a striking example of a euthanasia case involving a patient suffering from advanced dementia and Parkinson disease. This case was reported to the FCECE and was discussed there on 5 September 2017. According to Dr. Vanopdenbosch, not a single legal criterion was met (e.g., there had not even been a request from the patient). After several hours of debate, the two-thirds majority required to send the case to the Public Prosecutor could not be found. This, Vanopdenbosch argues, proves that the Commission is obsolete. ... In the case at issue, nobody disputes the fact that the physician indeed intentionally ended the patient’s life and, moreover, that this was done at the request of the patient’s relatives. However, as far as we know, the judicial authorities have not taken any action against the physician in question.
The FCECE has prevented possible prosecutions by approving the death, even when legal requirements were not met. More recently, Belgian citizens are petitioning the public prosecutor to investigate cases that were already approved by the FCECE. There was the case of Tine Neys, who died by euthanasia for psychiatric reasons and the case of Tom Mortier's mother, who died by euthanasia based on depression.
The study points out that the FCECE admits in their 2018 report that they do approve cases that do not fit the criteria of the law. The study states:In the 2018 FCECE report, one can read that: “Although in some rare cases one or more procedural requirements were not followed correctly, the euthanasia reports were nevertheless approved by the Commission after, every time, having assured itself that all the ‘essential conditions’ of the law were fulfilled: a competent patient, a written request, a medical condition without prospect of improvement, constant and unbearable suffering that cannot be alleviated and is caused by a serious and incurable condition” (FCECE, 2018, 26; authors’ translation). It should be noted that this claim is odd in view of the fact that, as mentioned above, in the same report the FCECE describes a case in which there was no written request.
The study concludes that the lack of oversight with the Belgian euthanasia law is structural. The study states:
Euthanasia, which involves the deliberate ending of a patient’s life, is a far-reaching and irreversible act that should be closely monitored. In this article, we have argued that there are shortcomings in the Belgian euthanasia law, the application of that law, and the monitoring of euthanasia practice. This leads us to conclude that several of these shortcomings are structural and thus require more than simply increased oversight.
First, the scope of the Euthanasia Law has been stretched from being used for serious and incurable illnesses to being used to cover tiredness of life. Second, the obligatory consultation of one or two independent physicians may fail to provide a real safeguard...The final authority to perform euthanasia lies with the attending physician who can perform it even against the (negative) advice of the consulted physicians. Third, the a posteriori control by the FCECE also raises concerns. The Commission is unable to check the fulfillment of various legal criteria, and it has substantial authority to (re) interpret the Euthanasia Law as it sees fit.
Due to the anonymity and the concise nature of the reporting form, the Commission is unable to check whether particular legal criteria are in fact met, even though that is its main task. Furthermore, due to the Commission’s composition and the authority it has taken upon itself, it might actually function as a shield, rather than a monitoring body. We have expressed the concern that the FCECE de facto has the power to change the interpretation of the Euthanasia Law unhindered by parliamentary, judicial, and societal control.
Furthermore, the observation that up until now the FCECE has only referred one case to the Public Prosecutor despite various indications that the legal criteria are not always met may lead one to question whether the a posteriori control mechanism is adequate.
After reading this exhaustive study, one must conclude that the Belgian euthanasia law is out-of-control. This is not only important for Belgium, but it is also important for other countries that are considering the legalization of euthanasia. Clearly, the Canadian euthanasia reporting system is inadequate, as it follows the same "self-reporting" system that is used in the Netherlands and Belgium. The Canadian system will likely never lead to a possible prosecution, and in the same way, unreported euthanasia deaths will likely run rampant in the system.
Unlike Belgium, there has yet to be a "third party" academic study to examine the compliance with the legal requirements in Canada. I make this statement while fully acknowledging that the Canadian government is currently expanding the scope of the euthanasia law without first doing a proper study of the original implementation of the law. This is completely irresponsible.
Belgium is not the only jurisdiction with oversight concerns, nonetheless, this study explains how the Belgian euthanasia law is currently the most abused death making law.Link to the study (Link).
