Letters From a Bioethics Student in Belgium: Meet Simon Czajkowski

Simon Czajkowski is currently pursuing a Masters degree in bioethics at the Catholic University of Leuven (KU Leuven), in Leuven, Belgium. Simon has agreed to be a correspondent for the deVeber Institute and share with us his research, experience and insights on bio-ethical issues in Belgium and here in Canada.  

Introduction

As per my ongoing email correspondence with Elaine Drake and Martha Crean of the deVeber Institute for Bioethics and Social Research in Toronto, I am writing my first letter to the Institute about my experience of studying bioethics and living in Belgium.  As agreed upon, I will specifically focus on writing about bioethics-related issues in my letters to the Institute, drawing from both published sources and anecdotal information acquired through my lived experience in Belgium.  I will begin this letter by introducing myself and answering some of the questions posed to me by Martha Crean in our most recent email exchange.  I will then proceed to addressing some of the other issues of interest to the Institute, namely the current state of euthanasia in Belgium, including legislation on patient access and physician participation, the quality of palliative care here, and the current state of other bioethics issues.  I will conclude the letter with a brief discussion on the previously mentioned topics in which I will attempt to develop a better understanding of them and connect them to the certain themes surrounding the practice of euthanasia in Canada.

 

About me

My name is Simon Czajkowski.  I was born and raised in Toronto, Canada.  I completed a Bachelor of Science degree in Psychology and Human Biology, as well as a research-based Master of Science degree in Physiology, both from the University of Toronto.  Over the past several years, I had developed a keen interest in bioethics.  I suppose that this happened mainly because of my engagement with the bioethics club at the Newman Centre in Toronto and my leisurely reading of philosophy texts.  This August, I had to figure out what to do with myself for at least the next year, and based on the information that I had available to me, I decided that it would be best to follow through with enrolment in the Master of Bioethics program at the Catholic University of Leuven (KU Leuven), in Leuven, Belgium.  The Master of Bioethics program at KU Leuven is a one-year master’s that is 70% course-based and 30% thesis-based.  For the thesis component, students are required to write about a bioethics-related topic of their choosing under the guidance of an assigned mentor, and with the intention of submitting their paper to a peer-reviewed journal at the end of the year.  For my paper, I have decided to write about how policies ought to reconcile legally mandated assisted suicide in Canada with the freedoms of conscience and religion of healthcare practitioners who might object to delivering and otherwise participating in this intervention.  In addition to describing several considerations for sound policy-making in this area, I will attempt to elucidate a common understanding of ‘participation’ in interventions by healthcare practitioners, specifically in the context of euthanasia and physician assisted death in Canada.  For the course component of the program, I am enrolled in the following courses: Law and Healthcare; Public Health Ethics & Ethics in Health Policy; Foundations of Bioethics & Principles of Clinical Ethics; Introduction to Ethics; Developments in Theological Ethics; Ethical Issues in End-of-Life Care; Ethics & Law in Biomedical Research; Human Genetics, Ethics & Policy; Philosophy of Science; and Psychology of Individual Judgment & Decision-Making. The program began in September 2017 and will end in June 2018.

 

My stay in Belgium for the duration of the Master of Bioethics program marks the first time that I am visiting this country.  I have however visited other countries in Europe before, most frequently Poland, where my parents were born and where some members of my extended family still reside.  So far, I have thoroughly enjoyed my stay in Belgium – I have adapted to living here without any challenges.  Also, contrary to some stereotypes, I have experienced Belgians to be friendly and accommodating people.  Belgium is geographically divided into two main regions: Flanders, which lies in the north, and Wallonia, which lies in the south.  Dutch is the main spoken language in Flanders, while French is the main spoken language in Wallonia. To answer Martha Crean’s question about the number of languages I speak: I speak English and Polish at the ‘native or bilingual proficiency’ level, as well as French at the ‘professional working proficiency’ level. The vast majority of people in Flanders, however, speak English sufficiently well, so communication is not a problem.

 

Euthanasia in Belgium

Current Legislation: Definitions, Access & Physician Participation

In 2002, the Belgian parliament passed law that legalized euthanasia – the intentional termination of a person’s life by another person.  Belgium became the second country in the world to legalize euthanasia (after the Netherlands). Belgium’s original euthanasia law specified the eligibility criteria for providing the intervention – any person seeking euthanasia had to meet the following conditions: (i) be over the age of 18, be competent to consent, and make a request that is voluntary, well-considered, and repeated, and (ii) be in a medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, and which results from a serious and incurable disorder caused by illness or accident.  Furthermore, the legislation specified that physicians were to administer the intervention and were to follow a set of procedural rules, such as informing the patient about all other available options (including palliative care), obtaining the opinion of at least another physician regarding the patient’s medical state and wish to die, and sending the patient’s data post-mortem to a commission that is specially assigned to review the legality of each and every act of euthanasia.  While physicians were designated the role of administering euthanasia, Belgian law does not oblige conscientious objectors to participate besides having to explain their decision to the patient in a non-obstructing way.  The main logic behind this is that physicians, as persons and citizens of both Belgium and the European Union, are given equal protection under laws relating to privacy and liberty.  Since the euthanasia law’s conception in 2002, several important developments have taken place.  Most notable was the extension of euthanasia to minors in 2014.  Much of the eligibility criteria that was set in place for adults was applied to children; however, a restriction relating to the nature of the medical condition was made – only children with physical suffering of a terminal character would be eligible for euthanasia (psychological suffering and non-terminal physical suffering would alone be insufficient).

 

Perhaps somewhat surprisingly, physician-assisted death, whereby physicians provide consenting patients with lethal drugs but do not administer them themselves, is technically illegal in Belgium.  Some say that this is due to the fact that there was no political will to introduce the kind of legislation that would effectively make physician-assisted death legal mainly because it was already widely practiced and not prosecuted.  One of my bioethics professors confirmed this fact in conversation saying that there is a de facto unwritten agreement not to prosecute physicians who participate in physician assisted death.

 

Public Sentiment and Trends

Since the legalization of euthanasia in Belgium in 2002, its prevalence has risen among patients experiencing both physical and psychological suffering.  In 2013, euthanasia accounted for 4.6% of deaths in the Flanders region, whereas in 2007, that statistic was 1.9% [1].  This increase can be explained by the fact that patients are increasingly requesting euthanasia and physicians are less reluctant to provide it: in 2013, euthanasia was requested in 6% of deaths in Flanders, of which 76.8% were granted, whereas, in 2007, euthanasia was requested in 3.5% of deaths, of which 56.3% were granted [1].  A similar trend was observed for the psychologically suffering population.  A study showed that patients suffering from one or more psychiatric conditions or dementia represented 0.5% of all euthanasia cases in Belgium between 2002 and 2007 and 3% of cases between 2008 and 2013 [2].  This rise can at least in part be explained by an increase in euthanasia for patients suffering from mood disorders like major depressive disorder [2].

It can be somewhat difficult to gauge exact public sentiment in a country that you do not make your home for a longer period of time.  However, based on available data and the limited discussions that I did have with Belgians about euthanasia, I can say that public support is strong.  One piece of information that perhaps attests to this fact was the lack of desire to report instances of illegal euthanasia and the lack of interest in prosecuting transgressors before decimalization happened in 2002 [3].  It is estimated that at least 4.5% of deaths in Belgium before 2002 can be attributed to illegal euthanasia [3].  Other evidence for the high degree of public support for euthanasia comes from the European Values Study – a survey conducted in 2008 in 47 European countries about the ideas, beliefs, preferences, attitudes, values and opinions of citizens [4].  Study participants were asked to answer the following question: “please tell me whether you think euthanasia (terminating the life of the incurably sick) can always be justified, never be justified, or something in between.”  Participants had to answer by selecting a whole number on a scale that ranged from 1 to 10 (1 representing the ‘never justified’ option and 10 representing the ‘always justified’ option).  The results showed that Belgium ranked second among all nations for euthanasia acceptance – Denmark was the only country that ranked higher.  Furthermore, when overall tolerance towards freedom of personal choices was accounted for in the results, Belgium reported a degree of euthanasia acceptance higher than was expected.  Finally, when euthanasia was legalized for minors in Belgium in 2014, the general public overwhelmingly supported this change in legislation [3].

 

Palliative Care in Belgium

Although one might expect the quality of palliative care to decrease in countries that legalize euthanasia – perhaps due to euthanasia being perceived as a partial substitute for palliative care by the countries’ constituents – this in fact does not seem to be the case in Belgium.  In a study of European member states that followed the development of palliative care between 2007 and 2013, Belgium ranked second, only after the United Kingdom, in a composite score of currently available palliate care services and potential for future development [5].  Furthermore, a right to palliative care was written into Belgian law in 2012 with the intention of providing patients and their families with the maximum quality of life possible in the end stages of life [6].

 

Other Bioethics Issues in Belgium

Underlying European Legislation: Rights To Life and Privacy

As a European member state, Belgium is subjected to European laws besides the ones it enacts at the national or regional level. Generally speaking, for European member states, human rights fall under the jurisdiction of the Council of Europe – an organization whose primary aim is to uphold human rights, democracy, and the rule of law in Europe, as well as to promote European culture.  For issues relating to bioethics, two pieces of legislation are especially noteworthy – Articles 2 and 8 or the European Convention on Human Rights: Article 2 protects everyone’s right to life while Article 8 protects everyone’s right to respect for his private and family life.  Both of these articles also prohibit the deprivation of rights without due process.  The interpretation of the exact meaning of human rights under the European Convention is somewhat vague however.  For example, case law based on Article 2 of the European Convention on Human Rights tends to avoid the issue of whether preborn children ought to be protected.

 

Abortion Laws

Elective abortion was legalized in Belgium in 1990 when the Belgian Parliament approved an amendment to the penal code, which placed a blanket prohibition on abortion except in cases where the pregnant woman’s life was endangered.  The 1990 law permitted women to have abortions in the first 12 weeks of pregnancy, which were to be performed by physicians under good medical conditions in healthcare establishments.  For abortions to be performed in this period of pregnancy, the attending physician must be convinced of the woman’s will to terminate the life of her developing child and her being “in a state of distress as a result of her situation”; however, the latter is entirely dependent on the woman’s own judgment.  In addition, the woman determined to terminate her pregnancy must be provided with sufficient information about her rights, the possibility of adoption, counseling, and other support services, after which she must undergo a reflection period of at six days before following through with the termination.  It is possible for women to obtain an abortion in Belgium after 12 weeks of pregnancy; however, in such cases, two physicians must agree that the continuation of the pregnancy would gravely endanger the woman’s health or would certainly result in the birth of a child with a serious pathological medical condition, recognized as incurable at the time of diagnosis.  In practice, many women determined to end their pregnancy after the 12-week period, who do not meet the exemption criteria, travel to the Netherlands, where elective abortions are available up to 20 weeks of pregnancy.

 

Stem Cell Research Laws

The European Convention on Human Rights says that one cannot create embryos for research purposes.  Although it is becoming increasingly possible to do meaningful research using induced dedifferentiation technologies or stem cells obtained from cord blood, much of the research up to date has utilized the surplus of embryos from in vitro fertilization procedures.  Surplus embryos from in vitro fertilization either get used for research or are discarded (relatively few are given to other couples looking for assistance in reproduction).  There are a number of general regulations that govern stem cell research in Belgium, such as the research having to be done in the first 14 days of embryonic development, it being related to therapeutic development or the advancement of ‘useful knowledge’, it being done based on the most up-to-date scientific knowledge and techniques, and it being done out of necessity – this is to say that there must be no other means for accomplishing the same research aims.  Additional conditions include the acquirement of consent of the persons’ embryos/fused gametes, the research being limited to university institutions, and it being subjected to oversight by local and national ethics commissions.

 

Human Tissue Laws

Any activity related to the handling of human tissue is also legislated and must be done with special care as it can easily undermine the dignity of the persons involved and their rights to life and privacy (by, for example, not affording adequate protection to the genetic information associated with tissues).  From a legal point of view, cells, embryos, and organs are all considered to be ‘human tissue’ (the handling of human blood is governed by separate legislation).  Human tissue can be used for many purposes, including transplantation and testing.  European law prohibits any profit being made form the exchange of human tissue; only costs incurred for handling can be reimbursed.  Special ‘banks’ that are usually associated with hospitals and universities handle human tissue.  As is the case with most other activity relating to the dealings with human persons, informed consent of those involved must be obtained.

 

Discussion

Although there is certainly enough substance to discuss that falls under any of the aforementioned topics, I will limit this section of the letter to euthanasia.  My main reason for doing so is because the Institute had asked me to relate my analysis to current bioethics issues in Canada, and since assisted suicide was recently legalized in Canada, a broader discussion might be less relevant and helpful.

Before making any direct statements about ‘medical assistance in dying’ in Canada (a euphemism for euthanasia and physician assisted death), I would like to point out several disconcerting developments relating euthanasia in Belgium.  In addition to the previously reported trends showing an overall rise in euthanasia in recent years, the fastest growing population affected by euthanasia in Belgium are those potentially vulnerable to discrimination and stigma – psychiatric patients, women, people older than 80 years, those with less educational attainment, and nursing home residents [2, 7].  While one of the criteria for euthanasia eligibility is being in a “medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated”, a highly cited 2015 New Yorker article told a story of a depressed woman who was chatting and laughing on the way to her euthanasia appointment and mentioned that other Belgians have been euthanized for such conditions like autism, anorexia, and chronic fatigue syndrome (a condition that is only now coming to the fuller attention of the medical community) [8].  Furthermore, for a few years now, patients are allowed to list ‘tiredness of life’ in their euthanasia requests and there have been findings of speeding of patients’ deaths [7, 9, 10].

All of this is to show that the ‘slippery slope’ argument against euthanasia may be a valid one.  None of the consequences mentioned in the previous paragraph were probably intended or desired by the first authors of euthanasia policies in Belgium.  With this observation in mind, the public debate surrounding the legitimacy and scope of euthanasia in Canada seems to have been especially superficial and shortsighted (both before the Supreme Court’s landmark ruling in 2015 in the Carter v. Canada case and afterwards).  Pro-euthanasia arguments in this debate have been more or less defined either by an appeal for compassion or an appeal to personal autonomy.  The first popular line of charge describes opponents of euthanasia as lacking compassion because they deprive some people of an effective way for alleviating pain.  This argument would in fact be quite moving if it were true; however, it is simply not the case that medical means for alleviating even the most severe pain do not exist. Continuous palliative sedation, for example, is in theory a viable option for those experiencing the most severe pain in the end stages of life.  It is true that providing such therapeutic options on a greater scale would be more costly, but discussion about what costs a society would be willing to bear is different from discussion about availability of pain-management options (or a purported lack thereof).  Cost analysis relating to ‘medical assistance in dying’ (MAID) and palliative care seem to have altogether been missing from public discourse until recently [11], which in my opinion at least, significantly undermines the ideal of a liberal democracy, in which citizens make well-informed decisions about their future.  The appeal to personal autonomy on the other hand, might seem more compelling; however, it too has its limitations.  I certainly do think that societies ought to place significant value on self-determination – value that at least provisionally should exceed that assigned to certain other principles and ethical considerations.  Respect for personal autonomy is, for example, instrumental in protecting individuals from tyrannical majorities and acts as a safeguard against the absurdity of collective judgement and punishment.  It also establishes the conditions for genuine love – the free giving and receiving between distinct persons.  Nonetheless, personal autonomy is not absolute – it is situated in the greater context of existence and therefore should not be regarded as the only important consideration in ethical dilemmas.  Besides having a need for autonomy, human beings are relational beings, both in terms of their need for relationships and by virtue of their mutual contingency.  A person’s actions are never absolutely private, and very often, restrictions that are put into place to limit the effects of personal decisions from infringing on the dignity of others do not suffice.  The previously mentioned developments related to euthanasia in Belgium are testimony to this.  The situation in Canada should be no different.  While both the Supreme Court’s ruling in Carter and subsequent federal legislation made note of the importance of protecting society’s most vulnerable, I wonder to what extent this will be possible in practice.  For one thing, it can be quite difficult if not impossible for clinicians to determine whether a suffering patient is attributing their wish to die to a grievous irremediable medical condition, as the eligibility criteria for MAID specifies, or perhaps to an experience that accompanies their main diagnosis; it is often the case, for example, that patients who experience chronic physical pain also experience depression [12].  Correct attribution is important especially considering that the consequence – death – is irreversible.  Furthermore, fulfilment of the requirement to experience suffering that is intolerable in order to qualify for MAID is entirely dependent on the patient’s individual judgment, which raises concern about the kinds of ‘suffering’ that some people would judge to be unbearable, especially in a society pervaded by a culture of victimhood and largely operating on the pleasure principle – whereby value in suffering of any kind is not acknowledged and the avoidance of discomfort often amounts to the doing away with the human person.  The long-term threat to the psychiatric population also cannot be understated.  Very little public attention is given to the potential long-term consequences associated with individuals with suicidal ideation interpreting the availability of MAID for the psychologically suffering as a mixed signal of sorts.  Would their perceptions of society’s regard of suicide (which for centuries has been consistent) not at all be affected by the recent embrace of MAID for a subset of the psychiatric population? A similar line of inquiry can be applied to the elderly population that might begin to perceive MAID as a socially prescribed intervention for those past a certain age or level of utility.  These are only a few examples of issues left largely unexplored and missing from public discourse about the legitimacy and scope of MAID, thereby, in my opinion, making that discourse rather superficial and shortsighted.

The way in which euthanasia and medically assisted death were legalized in Canada is different from other jurisdictions.  Unlike Belgium, where euthanasia was introduced by parliamentary motion, legalization in Canada originated from a constitutional challenge in the courts.  One might therefore wonder whether discussion about the quality of public discourse is relevant in this case.  However, both the Supreme Court’s and lower court’s decision to revisit the constitutionality of assisted suicide in Carter and not be bound by the 1993 Rodriguez v. British Columbia precedent case, which upheld the prohibition on assisted suicide, was significantly influenced by perception of social views on the matter.  For anyone opposed to euthanasia, these developments serve as yet another example of the importance of civic engagement and participation in public discourse. While assisted suicide in Canada was introduced by judicial ruling in 2015, the social circumstances that enabled this case have developed years prior.  For anyone concerned about the future scope of assisted suicide in Canada and the real possibility of actualizing the ‘slippery slope’ scenarios, the need for engagement in public discourse could not be more obvious.  There are legitimate reasons for retreating from conventional society, such as concern for the upbringing of children, the nature of one’s vocation, or other personal circumstances.  Such retreats, however, should not be indefinite.  By virtue of our shared humanity and co-existence under similar social structures and the same rule of law, participation in social life and labouring for the common good are not merely civic duties, but moral obligations.  These often require us to abandon our sense of comfort and illusion of security; trusting that all will be well, we must not be afraid to do so.  Personal and honest encounters with other members of society, especially those of different backgrounds and points of view, are the beginning of love of neighbour and good starting points for changing public opinion about the dangers associated with assisted suicide that face our country.

 

References

 

  1. Chambaere K, Vander Stichele R, Mortier F, Cohen J, Deliens L. Recent trends in euthanasia and other end-of-life practices in Belgium. N Engl J Med. 2015; 372(12): 1179-81.

 

  1. Dierckx S, Deliens L, Cohen J, Chambaere K. Euthanasia for people with psychiatric disorders or dementia in Belgium: analysis of officially reported cases. BMC Psychiatry. 2017; 17(203): 1-9.

 

  1. Saad TC. Euthanasia in Belgium: legal, historical and political review. Issues L & Med. 2017; 32(2): 183-204.

 

  1. Cohen J, Van Landeghem P, Carpentier N, Deliens L. Public acceptance of euthanasia in Europe: a survey study in 47 countries. Int J Public Health. 2014; 59: 143-156.

 

  1. Woitha K, Garralda E, Martin-Moreno JM, Clark D, Centeno C. Ranking of palliative care development in the European Union. J Pain Symptom Manage. 2016; 52(3): 370-377.

 

  1. Van Beek K, Woitha K, Ahmed N, Menten J, Jaspers B, Engels Y, Ahmendzai SH, Vissers K, Hasselaar J. Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (results from the Europall Research Group): a descriptive study. BMC Health Serv Res. 2013; 13: 1-11.

 

  1. Lerner BH, Caplan AL. Euthanasia in Belgium and the Netherlands: on a slippery slope? JAMA Intern Med. 2015; 175(10): 1640-1641.

 

  1. Aviv R. The death treatment: when should people with a non-terminal illness be helped to die? The New Yorker. June 22, 2015.
  2. Siegel AM, Sisti DA, Caplan AL. Pediatric euthanasia in Belgium: disturbing developments. JAMA. 2014; 311(19): 1963-1964.

 

  1. Smets T, Bilsen J, Cohen J, Rurup ML, Deliens L. Legal euthanasia in Belgium: characteristics of all reported euthanasia cases. Med Care. 2010; 48(2): 187-192.

 

  1. Malone K, Medically assisted deaths could save millions in health care spending: report. CBC News. January 23, 2017.

 

  1. Bair MJ, Robinson RL, Katon W, Kroenke K. Depression and pain comorbidity – a literature review. Arch Intern Med. 2003; 163(20): 2433-2445.

 

 

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