Book Review: Legal Euthanasia: 15 Years On

May 15, 2019

Reviewer: Dr Megan Best

Euthanasia and assisted suicide: Lessons from Belgium

David Albert Jones, Chris Gastmans and Calum MacKellar (eds). 2017. Cambridge: Cambridge University Press.

Euthanasia and assisted suicide is sobering reading. As euthanasia legislation is debated repeatedly across Australia, we hear many claims about the likely consequences from those for and against a change in the law. Euthanasia was legalised in Belgium in 2002. As the editors point out, we don’t have to speculate about what might happen anymore (p1). Here is an empirical example of the impact of the euthanasia experiment, and it should give us pause.

The book is an academic volume in the Cambridge ‘Bioethics and Law’ series, with multiple references offered to justify statements made in the text. A panel of experts has been gathered to contribute analyses of different aspects of the legislation. There are a range of views both for and against legislation, so a comprehensive picture is built. Yet despite this, there are common themes. We discover the impact of the growing phenomenon of assisted dying, which is described on the cover as ‘one of the most challenging ethical questions of our time’.

The euthanasia and assisted dying laws of Belgium, Holland and Luxembourg are described and compared. Similar to the 2018 Victorian legislation in Australia, the euthanasia law in Belgium was passed with commendation for the strict legal requirements which were in place. As in Victoria, it was claimed that the legislation would bring regulation and transparency to the euthanasia practice already occurring underground. It is pertinent to investigate whether these claims were realised.

The Belgian Act defines euthanasia as intentionally terminating life by another person than the person concerned, at this person’s request. Safeguards were included, such as requiring the doctor involved to ensure that the patient is legally competent and conscious; that the request is voluntary and well-considered; that the patient is in a ‘medically hopeless situation’; and to report the death to the government’s oversight Commission within four working days of the act. The Commission are tasked with reviewing the completed registration document and determining whether the euthanasia was performed in accordance with the Act (p22).

However, in practice, the safety conditions fail the patients involved, as they are applied a posteriori. Problems with lack of transparency in reporting are evident. It is left to the doctors involved to self-report, and the rate of under-reporting is estimated to be 50% (p28). Not surprisingly, it is extremely rare for a doctor to be referred to the public prosecutor for investigation. In fact, at the time of writing, there has only ever been one case since 2002 (p23). After the act, it is impossible to ascertain whether all available treatment options were accurately and empathically provided and whether coercion was involved with the final decision for euthanasia (p29). So it has turned out that the much-proclaimed safeguards cannot be monitored or enforced. Any wrong-doing will only be detected when the checks and balances come into effect after the death (when the euthanasia Commission reviews the doctors’ reports—if they can get through the thousands of reports a year). Then it is too late to help the patient involved. They are not protected if the legal requirements are found to be breached. In Belgium, euthanasia remains in principle a crime. Only a doctor may practice euthanasia, which is without penalty if all legal requirements are met. Control of the legal conditions would therefore seem to be critical if the population is to be protected from abuse of the law. This is not the case in Belgium.

The legislation in Belgium was passed with the understanding that it would only apply to mentally competent patients with serious and incurable disorders caused by illness or injury, who experience constant and unbearable physical or mental suffering that cannot be alleviated. As one reads through the chapters, one learns the different ways in which pressure has been brought to bear to widen the application of the legislation. In the name of justice and equality, once the euthanasia law existed to deal with a category of lives considered to be ‘not worth living’, other groups claimed similar rights. These include elderly people who do not have a serious and incurable disorder, but instead have accumulated numerous ailments which, in combination, are subjectively perceived as causing ‘unbearable suffering’ and therefore justify euthanasia. This group is reported to be increasing in both numbers and as a percentage of euthanasia deaths (p31). Similarly, while the Belgian Act was initially described as excluding patients with psychiatric disorders, dementia or depression, patients with these disorders have also claimed access to euthanasia on grounds of mental suffering—representing a confusion between mental illness and mental suffering that the Commission has approved (p33). The question of how well-considered a decision for hastened death in a patient with neuropsychiatric disease can be, remains.

The decision regarding what is suffering ‘that cannot be alleviated’ has also been interpreted by the Commission in a way which the original legislators may not have intended. From the beginning they felt that whether suffering was unbearable was a subjective decision (p32). The Commission then suggested that, even though there may be treatment available that could alleviate the suffering, the patient has the right to refuse therapies such as palliative care or treatment for depression (p32). As there is no requirement that the patient actually trial potentially helpful treatments, this means that the interpretation of ‘unalleviated suffering’ can be applied more widely. One would think it prudent to treat depression, particularly, before allowing access to euthanasia, given that desire for hastened death is one of the symptoms. One cannot help but wonder if relief of suffering is really the goal of legal euthanasia, or whether another agenda is in motion. The practice has been expanded to include those without a serious or incurable disorder or whose competence is compromised or even absent. Even anticipated future suffering can justify euthanasia (p35). It is not a failure of medicine that has precipitated these changes. Evolving societal values such as the growth of individualism and autonomy and the loss of belief in the intrinsic value of all human lives have no doubt contributed, and in a society that has lost sight of the meaning of suffering, there is, understandably, a loss of the will to endure it.[i]

The number of euthanasia cases, and the proportion of overall deaths from euthanasia, has steadily risen since 2002. It is suggested by one of the authors that the introduction of state-endorsed euthanasia has led many people to assume it is therefore ethically acceptable, and that this, in turn, has led to it occurring more frequently—to the point of being routine. Yet even the authors endorsing legal euthanasia express concern that ‘euthanasia, once the barrier of legalisation is passed, tends to develop a dynamic of its own and extend beyond the agreed restrictions, in spite of earlier explicit reassurances that this would not happen’ (p76). It is possible that, while euthanasia was previously seen as a ‘solution’ for unbearable suffering, that suffering is now perceived as unbearable because the option of euthanasia exists. It is suggested that those requesting euthanasia tend to reflect a particular personality type that is fixated on being in control, and that it is this subgroup of the community that are driving the demand for legal euthanasia in the United States (p52). Euthanasia, previously seen as an exception in end of life care, is now seen as a right, and increasingly more patients are requesting it in preference to undergoing lengthy cancer treatments. Yet the lack of meaning in life that can drive the fear of death is treatable; patients can be supported in their despair, and palliative care treatments are available to relieve suffering should it occur. In fact, in palliative care units, most deaths are peaceful.

Another aspect of concern addressed in the book is the integration of palliative care and euthanasia. It is noted that the World Health Organisation and the World Medical Association both consider euthanasia as unethical medical behaviour and inconsistent with palliative care. Yet increasingly, doctors in Belgium refer patients requesting euthanasia to palliative care units to avoid the uncomfortable discussions themselves. Therefore, some hospices are now viewed as ‘euthanasia centres’. A Belgian oncologist reports having seen patients who would benefit from palliative care reluctant to engage due to fears of the euthanasia threat (p105). Continuous deep sedation until death, used less aggressively in other countries as a way to reduce end of life distress, is now consciously used in Belgium as a euthanasia alternative, which further confuses the line between euthanasia and palliative care. The normal death trajectory is seen as tedious and unnecessary. No wonder patients are worried.

While the Victorian legislation specifies that requests for assisted dying should not be coerced, it is difficult to see how this could be policed. On a societal level, there can be unspoken expectations that one should not be a burden on one’s family. This could be because a society that fears its own suffering and death wants to eliminate reminders of that possibility from its environment. These pressures exist in Belgium, and as a result, elderly patients can autonomously request euthanasia, even though it is not what they really want (p232).

Uncommon, but legal, extensions of the Belgian legislation include the practice of organ donation after euthanasia (now becoming euthanasia by organ removal, with the suggestion that it would be preferable to do the deed in an operating theatre to improve organ quality) (p124); extending the law to include children (chapter 10); and allowing older people who are not terminally ill, but have a number of health problems and/or social isolation and feel ‘tired of life’, to end it all (chapter 11). Death from euthanasia is no longer seen as the exception requiring special justification, but a normal death that should be accessible to all who desire it. Bills to relax the laws appear regularly before parliament, to allow access for those with dementia (including by Advanced Directive), and newborns (p203). There are even calls to legalise life-ending of the sick without their request (p43).

Euthanasia requires a doctor-patient interaction, often witnessed by family members. The psychological impact on the physicians and family members involved is often ignored. However, a survey in the Netherlands reported psychological discomfort in 75% of doctors who had performed euthanasia (p52). No formal psychological testing of involved doctors has occurred, but it is possible that the cost is high. It is possible that factors such as the desire to relieve their own sense of helplessness in the face of patient suffering, to alleviate carer burden, and the influence of counter-transference may encourage them to subconsciously communicate to patients that the time has come to make the request. Some doctors are finding lengthy euthanasia discussions taking time away from other patients who need care. They are frustrated that they are not using their time for the work for which they trained. Research has shown that a request for euthanasia is in fact usually a cry for help.[ii] Legal euthanasia changes the doctor’s role from suicide preventer to suicide facilitator. In view of the increasing number of non-medical indications for euthanasia, some doctors in Belgium are calling for their profession to be relieved of euthanasia duty and resent the fact that those doctors refusing to perform euthanasia are considered inhumane for denying their patients ‘death with dignity’ (chapter 6).

Families are also impacted. Post-traumatic stress disorder is reported to be as high as 20% in family members witnessing assisted suicide (p52). There is no requirement for family members to be informed of the patient’s request for euthanasia, and families can suffer from pathological bereavement if they are robbed of the opportunity to give their farewells (p109).

I have only touched on some of the issues raised in this disturbing volume, and those interested in the debate are encouraged to study the details. As the editors conclude,

Belgium offers clear lessons for other jurisdictions which are considering the legalisation of assisted suicide or euthanasia. One of these is that legislation that was promoted as giving greater clarity, transparency and control to end-of-life practices, has not fulfilled its expectations. Independent research into end-of-life decision making in Belgium offers some insight into what is occurring, and other jurisdictions should consider doing similar research. There is no independent research in Oregon, for example, which could assess what proportion of physician-assisted suicides are, in fact, reported. However, in contrast to this independent research in Belgium, the system of official reports and the work of the Federal Commission offer neither transparency nor control. It seems to provide only the illusion of control. (p282)

This book illustrates that, once the barrier of legislation is passed, the practice of euthanasia and physician-assisted dying seems to develop a dynamic of its own. It may not be inevitable, but the only way to ensure it does not happen here is to avoid legalisation, or retract that already in place. In Belgium, legal euthanasia has not solved the problems it was meant to solve. Some commentators believe it has created more problems than solutions (p113). If euthanasia were not legal, it would be less common, and doctors would need a very good reason to perform it. Was legalising euthanasia in Belgium worth the experiment?

We would be naïve to think these things could not happen in Australia. I highly recommend this volume as a warning before euthanasia becomes normalised here.

[i] For a further discussion of this point see Megan Best, ‘Assisted Dying Laws: Is suffering still the main problem?’ Case Quarterly #49, 2017, pp8-13.

[ii] P. B. Bascom & S. W. Tolle, ‘Responding to Requests for Physician-Assisted Suicide: "These Are Uncharted Waters for Both of Us. . . ."’. Journal of the American Medical Association, 2002, Vol. 288(1), pp91-8.