Confusion and misinformation about assisted dying

Even at The Lancet

When it comes to assisted dying, even one of the world’s leading medical journals can get caught out. It’s curious in this age of ‘precision medicine’, that leading commentators and thought leaders in the medical field can still struggle with crucial terms and definitions about assisted dying. Whatever your views on the subject, there is no doubt that clarity about terminology is vital, but as we shall see, not always present.

The debate on assisted dying is intensifying in many places and an increasing number of legislative proposals are being put forward and new laws are being enacted. For example, in 2019 the Voluntary Assisted Dying Act came into force in Victoria, Australia, and on February 20, 2020 several Bills were passed in Portugal decriminalising euthanasia.

Our Glasgow End of Life Studies Group is monitoring these developments closely. As part of Prof David Clark’s Wellcome Trust funded study ‘Global Interventions at the End of Life’, we have investigated specifically the relationship between assisted dying and palliative care in: Flanders, Belgium; Oregon, USA; and in Québec, Canada. This relationship is varied and contested, particularly in Canada as exemplified by a prolonged standoff between the health authority of British Columbia and a hospice which is refusing to provide assisted dying. A very recent publication from our group is Gerson SM, Koksvik G, Richards N, Materstvedt LJ, Clark D. (2020). «The relationship of palliative care with assisted dying where assisted dying is lawful: A systematic scoping review of the literature». Journal of Pain and Symptom Management; Journal Pre-proof available.

What is ‘assisted dying’?

Based on international convention, on laws regulating assisted dying, and with reference to concept usage and definitions in prominent research designs and publications across the world (especially those of Dutch origin), there are three different forms under the umbrella ‘assisted dying’ (AD):

• euthanasia (E)
• physician-assisted suicide (PAS)
• assisted suicide (AS)

Hence, we have the following ‘formula’: AD = E + PAS + AS. For further detail – including how euthanasia (i.e. lethal injection upon patient request) is defined by the Dutch medical association KNMG, which has for many years supported the practice – see my «‘Assisted dying’ – what it is, where it’s practised, and what the future might hold». Discover Society, February 6, 2018.

Confusion and misinformation about assisted dying is widespread

I have been a researcher within the field of euthanasia and palliative care for more than 20 years. I have conducted interviews with terminally ill cancer patients at a palliative medicine unit concerning their attitudes towards, and wishes for, euthanasia on behalf of the NGO The Norwegian Cancer Society. I have written many academic works, including a chapter titled «Ethical issues in physician aid-in-dying» in the forthcoming Oxford Textbook of Palliative Medicine (2021). I am also a former Chair of The Ethics Task Force on Palliative Care and Euthanasia of the European Association for Palliative Care (EAPC) that produced this position paper: «Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force». Across the years, I have witnessed considerable confusion and misinformation about what amounts to ‘assisted dying’, whether that be in public polls (in particular), amongst politicians, in the thinking of physicians and nurses, or in the scientific literature. For example, I have pointed out in Journal of Medical Ethics that a recent article in this very same journal, about Belgium, gets several central concepts and definitions wrong.

World report of The Lancet

On March 5 2020, confusion and misinformation about assisted dying reached the pages of The Lancet. In their world report “Germany overturns ban on assisted suicide“, it was stated that “euthanasia and assisted suicide are legal not only in Switzerland, but also in Belgium, Luxembourg, and the Netherlands”. However, euthanasia is illegal in Switzerland; indeed, it’s explicitly prohibited in the penal code.

Another flaw in the Lancet world report is more serious: “In a medical context, euthanasia refers to a doctor using painless means to end a person’s life, providing the patient and the patient’s family agree.” But family has no such role in the case of adults accessing lawful euthanasia. In the case of minors, the situation is a little bit different.

The Netherlands

In The Netherlands, family must agree in cases of newborns, who obviously are unable to agree to being injected with lethal drugs. The Dutch government writes on its web site that as regards newborn infants, “The parents must have given their consent for the termination of life.” But that would by definition not be euthanasia due to a lack of a request from the patient.

With regards to family involvement, the Dutch law on euthanasia says the following: 

“3. If the patient is a minor aged between sixteen and eighteen and is deemed to be capable of making a reasonable appraisal of his own interests, the attending physician may comply with a request made by the patient to terminate his life or provide assistance with suicide, after the parent or parents who has/have responsibility for him, or else his guardian, has or have been consulted.”

In other words, in such cases (patient being 16-18 years old) family are not required to agree, however they must be consulted/informed. (Furthermore, the Dutch government adds, “Euthanasia can be performed only at the patient’s own request, not at the request of relatives or friends.”)

The Netherlands has the longest history of euthanasia practice in the world, dating back at least to the 1973 court ruling in the Postma case, and the Dutch government makes it abundantly clear that, “From the age of 18, young people have the right to request euthanasia without parental involvement.”

Only if the patient is 12-16 years old do next-of-kin have a say, and may also block the carrying out of euthanasia or physician-assisted suicide should they choose to:

“4. If the patient is a minor aged between twelve and sixteen and is deemed to be capable of making a reasonable appraisal of his own interests, the attending physician may comply with the patient’s request if the parent or parents who has/have responsibility for him, or else his guardian, is/are able to agree to the termination of life or to assisted suicide. Subsection 2 shall apply mutatis mutandis.”

Victoria, Australia, Canada and Belgium

Another example where families must take a back seat when adults request assisted dying is the new law on euthanasia and physician-assisted suicide in Victoria, Australia – a place not mentioned in the Lancet world report, nor is Canada where euthanasia is legal too – which states that “the co-ordinating medical practitioner must, if the person consents, take all reasonable steps to fully explain to a member of the family of the person” that assisted dying is about to take place (italics added). And it is emphasised that when it comes to the process culminating in assisted dying, “an interpreter who assists a person in relation to requesting access to or accessing voluntary assisted dying … (b) must not—(i) be a family member of the person” (italics added). As regards the declaration by a physician who carries out assisted dying, he or she may only inform family “with the consent of the person”.

Likewise, Belgium’s euthanasia law stipulates that as far as adults are concerned, the attending physician is at liberty to, “if the patient so desires, discuss his/her request with relatives appointed by the patient” (italics added).

Children are a different matter. An amendment made in 2014 to the 2002 Belgian law did away with a lower age limit for euthanasia (which, we saw, by contrast is 12 years in The Netherlands). Terminally ill children (a 5 year old, say) may request euthanasia, however they must have the support of a parent or legal guardian, who has a right of veto.

Inadequate corrections made by The Lancet

On March 6 2020, one day after the world report was available online, I emailed the Lancet‘s Editor-in-Chief making them aware of the flaws. Yet the following message first appeared on March 16 2020:

“Hyde R. Germany overturns ban on assisted suicide. Lancet 2020; 395: 774—This World Report incorrectly stated that agreement of the patient’s family is needed for euthanasia. Also, the article stated that euthanasia is legal in Switzerland; it is not, although assisted suicide is. These corrections have been made to the online version as of March 16, 2020.”

It took The Lancet ten days to put things right – although not quite: as shown, in rare exceptions family must agree. I informed The Lancet about that too, quoting the above section of the Dutch law concerning patients 12-16 years old, but they did not take the opportunity to inform readers about exceptions – not in the message, nor in the edited article itself.

While the markedly different laws which operate in different jurisdictions can be difficult to track by non-specialists, it is imperative that key clinical, ethical and legal information about assisted dying be presented accurately to the public, health care professionals, and not least legislators who pass laws that quite literally concern matters of life and death. The Lancet’s errors indicate that we cannot even trust high-ranking journals in this respect and we need to be vigilant of distortions and inaccurate generalisations.

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Lars Johan Materstvedt, PhD, is Professor of Philosophy & in Medical Ethics at Norwegian University of Science and Technology (NTNU), Trondheim, Norway, and Visiting Professor, Glasgow End of Life Studies Group, School of Interdisciplinary Studies, University of Glasgow, Dumfries Campus, Scotland, UK.

Academic home page: www.materstvedt.net

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