Lars Johan Materstvedt, a professor of philosophy working in medical ethics, writes in response to Professor David Clark’s post Assisted suicide, euthanasia and the European Association for Palliative Care (EAPC). Lars Johan is former Chair of the Ethics Task Force on Palliative Care and Euthanasia at the EAPC.
The EAPC on euthanasia, 2003 and 2016
After reading Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care, the EAPC paper published in Palliative Medicine in February 2016, my initial reaction was quite similar to David Clark’s:
“Comparing the documents of 2003 and 2016, although the second is more detailed, it is hard to detect any substantive change in the position of the EAPC. In places the drafting of the second paper looks sloppy.”
I would like to add that repeatedly the 2016 paper is simply made up of portions of our 2003 paper without the formulations having been altered at all; this is “copy & paste” to a very large extent – I counted about fifteen places where this occurs. Accordingly, it often feels like you are reading the 2003 paper when it is in fact the 2016 paper that is before you. We wouldn’t allow such plagiarism in a graduate student, and I think it reflects badly on the EAPC.
What is new in the 2016 paper – on “palliative futility”
Clark notes that “this time” he “wasn’t involved in the process, and nor it would seem was Lars Johan Materstvedt”.
That is correct; I was asked to participate, but declined. Still, the 2016 paper makes use of certain formulations of mine in connection with statement no. 13: Palliative care is provided up until the end of life and is by definition never futile.
Their reference 39 here is to an article by me that was published in 2013, with the title Palliative care ethics: the problems of combining palliation and assisted dying. Clark finds no. 13 to be the only “new point” that “is added” in the 2016 paper.
The 2016 paper is indeed new in specifically addressing the Belgian model of so-called integral palliative care, which is rejected. Although new, in my reading this primarily serves to emphasise the position of the 2003 paper (also pointed out by Clark) that, “The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care”.
The sentence in the 2016 EAPC paper, “based on a false understanding of what palliative care is”, is however not mine, even though it is easy the get the impression that it too is drawn from my 2013 article. Clark concludes at this point that “the commentary goes on to assert (rather than explain) that the term ‘palliative futility’ is a ‘misnomer’.”
My own explanation of this in the referenced 2013 article is the following:
“There are several problems with [the idea of palliative futility]. I pointed out … that palliative treatment is never discontinued as it is provided up until the very moment of death. So whereas life-prolonging measures may be found to be futile, palliation never is. It does not matter if the patient thinks otherwise; this in itself does not make palliation a futile undertaking. It simply means that the patient rejects such treatment. While not futile, palliative care may vary in quality and effectiveness, ranging from optimal to good, acceptable, and poor. In extreme cases of refractory suffering in the dying, deep and continuous palliative sedation (DCPS) can be offered as a last resort. This is not, however, to deny that a patient may see DCPS as futile and want euthanasia instead. Several clinical, ethical, and philosophical issues are associated with this controversial treatment. But it is not futile; quite the contrary: it is important and effective. Against this background, the very concept of ‘palliative futility’ is therefore a misnomer as well as a contradiction in terms and hence incoherent, and it also fails to mirror clinical reality.”
In the Oxford Textbook of Palliative Medicine, 2015, in the chapter “Euthanasia and palliative care” with Swiss physician and bioethicist Georg Bosshard as co-author, I take this a step further in stating that, “the idea of palliative futility … should be discarded, and palliative care personnel should ignore it altogether.” Hence I agree with the contents of the EAPC’s 2016 formulation that it presents “a false understanding of what palliative care is”.
What is more, I see the term “palliative futility” as ideological. I would even, in the vein of British author George Orwell, tag it Newspeak invented by those behind the “integral” model. It has been noticed that, “Orwell’s fictional language can subtly take control of characters’ actions, their moods, and even their minds.” Which is my point (and warning) exactly in this connection.
Canada: opening up for the Belgian model
The very recent euthanasia law in Québec, Canada requires that,
“Every institution must adopt a policy with respect to end-of-life care” [and that its annual] “report must also state, where applicable, the number of times … medical aid in dying were administered … in the premises of a palliative care hospice by a physician”.
In other words, this law explicitly paves the way for a practice akin to the Belgian model, and accordingly presumes that euthanasia may “be part of the responsibility of palliative care”.
Cicely Saunders’ rejection of euthanasia
In her commentary on the 2003 paper, the late Dame Cicely Saunders emphasised that, “Where the provision of euthanasia or physician-assisted suicide is possible, the [EAPC] Task Force points out that these should not be the responsibility of palliative care”. Clark’s 2002 book on Saunders, published by Oxford University Press, has the telling subtitle “Founder of the Hospice Movement”. Presumably the founder, whom Clark also knew in person, would have rejected the Belgian model. In her 1959 article, “Care of the dying 1: the problem of euthanasia”, she wrote: “my whole point being that firstly euthanasia is wrong, and secondly it should be unnecessary if terminal cancer patients are properly cared for.” Also, one wonders what Dr Saunders would have said had she lived to witness the several and ongoing attempts to legalise assisted dying in the UK.
The ideology of autonomy
Being a philosopher whose main research area is within end of life medical ethics, I nevertheless find the Belgian model of much interest in several respects. I have “plunged” quite deep into some of the fundamental, and extraordinarily complex, issues raised by the model in the chapter Caring and killing in the clinic: the argument of self-determination, in the collection The Patient’s Wish to Die. Research, Ethics, and Palliative Care, published in 2015 by Oxford University Press.
One key issue that I explore is “autonomy as self-determination” and, further, what it means to claim that people are “the best judges of their own interest” – a conception I demonstrate borders on being meaningless; at the very least, it is hard to defend both in principle and in practice, in the healthy as well as in the seriously ill. I also point out that in clinical practice, self-determination can be hampered due to a whole lot of factors, including that wishes to die tend to fluctuate and be ambivalent.
Clark writes that, “In the contested central ground each side struggles for dominion over ‘autonomy’, ‘choice’ and ‘dignity’ in dying.”
I concur. But it is worth mentioning in this connection that the WHO definition of palliative care, which entails a rejection of euthanasia – while simultaneously being critical of overtreatment; the formulation that palliative care “intends neither to hasten or postpone death” – completely avoids the topic patient autonomy. This is surprising since, as we stress in the EAPC 2003 article, “Respect for autonomy is an important goal of palliative care, which seeks to strengthen and restore autonomy and not to destroy it.”
Complexity of requests for euthanasia
We there also observed that, “Individual requests for euthanasia and physician-assisted suicide are complex in origin and include personal, psychological, social, cultural, economic and demographic factors.” Later on, these complexities have been given increasing attention in the literature, and an expanding amount of both quantitative and qualitative research has confirmed and elaborated the picture we painted back in 2003.
A key obstacle, however, has been the lack of a well worked out and agreed upon definition of what a “wish to hasten death” (WTHD) is, and which would prove useful in this kind of research.
In early 2016, an expert panel that I participated in, made up of clinicians and researchers from several European countries and the USA, published the open access article An international consensus definition of the wish to hasten death and its related factors. It is our hope that it will prove helpful in both research and clinical practice.
What does the future hold?
Sociologist Clark finds the Belgian model intriguing: “Only among a small, but interesting minority”, he writes, “is the ‘integral’ approach adopted in which palliative care becomes part of the process of looking after people who are also seeking to end their lives.” And he goes on to wonder whether Belgium “will … prove a model for other countries to emulate? Or will the European palliative care establishment continue to see the ‘integral’ approach as unwelcome and based on a ‘false understanding’?”
Ahead are indeed interesting times for the palliative care movement. I think the EAPC is wise in not making “a principled statement in opposition to euthanasia”, as Clark puts it. Both because it would direct attention away from palliative care as such, and because – I predict – euthanasia legislation will happen anyway across the Western world. In our strongly individualistic culture you can’t turn back the ticking clock of an ever-increasing self-determination in nearly all areas of life. And so the heaviest pressure for legalisation comes from outside medicine; the pressure is of a cultural nature, if you will, mainly in the form “whose life is it, anyway?”
Why the EAPC should keep opting out
The question then becomes: “what to do?” In the future, I believe the EAPC should stand by its rejection of “integral” palliative care and comparable arrangements. If not, it could enter a slippery slope at the end of which palliative care might play a minor part in care of the dying, expensive palliative care having been replaced by inexpensive euthanasia in the face of economic crisis and a tsunami of elderly ill people. Additionally, this slope might be more greasy still due to the phenomenon that from the institutionalisation of a medical practice oftentimes follows its normalisation.
That would be a huge failure indeed and, almost literally speaking, palliative care’s “death kiss”. And personally, I would resist strongly being an inpatient at a palliative medicine unit that also practices medicalised killing.
Terminally ill patients who are approaching death can be extremely vulnerable in a whole lot of respects, and their decision-making capacity seriously compromised by severe symptoms of the illness itself as well as due to side effects of the treatment they undergo. Furthermore, feelings of little worth and also existential suffering can be profound challenges.
Add to this the experience of being a burden to next of kin as well as to health care personnel, and then add the self-critical thought that one is an economic burden on society. Additionally, a Dutch study found that the risk to request euthanasia for terminally ill cancer patients with depressed mood was 4.1 times higher than that of patients without depressed mood at inclusion.
What you get is not exactly the image of a fully rational person who chooses continued life or death by lethal injection as if he’s in the supermarket choosing among goods from different shelves.
“I’ll make him an offer he can’t refuse“, says Al Pacino’s mafia character in The Godfather. How might we rest assured that death by lethal injection for those who face the biggest crisis of their life is an offer they can refuse? Are they actually completely free to do so? Furthermore, will patients think that not only is there a right to die, but also a duty to die?
British moral philosopher, and former cross-bench member of the UK’s House of Lords, Mary Warnock asks (in an article with that very title) whether there is “A duty to die?” (PDF), to which she answers that there may be. In other words: occasionally medicalised killing is an offer one shouldn’t refuse.
From a scientific perspective, and contrary to what has been claimed by leading researchers, we do not know whether vulnerable patients feel pressure that they ask for euthanasia. But is the hypothesis that this doesn’t happen even remotely plausible? Do we really need science to inform us about the obvious psychological and social mechanisms that will be at work here?
Let there be euthanasia clinics
In a society having legalised euthanasia, there is the option of establishing external or outside euthanasia clinics where patients can go to have their lives ended by lethal injection, performed by doctors who believe (strongly) in such acting – much in the same manner that abortion clinics function in the USA. Those who differ could then work within palliative care being a “euthanasia free zone”.
In a European context, and in Germany in particular, for obvious historical reasons the name “euthanasia clinics” doesn’t sound good at all – to understate the point … But the clinics so-called were not about euthanasia; they were murder clinics.
This we make clear in our 2003 paper also:
“Medicalised killing of a person without the person’s consent, whether nonvoluntary (where the person is unable to consent) or involuntary (against the person’s will), is not euthanasia: it is murder. Hence, euthanasia can be voluntary only.”
This categorisation is congruent with Dutch law: In a more recent example of involuntary medicalised killing, physician Wilfred van Oijen was convicted by the Dutch Supreme Court in 2002 of murdering one of his patients. Not only had this patient not requested a lethal injection, she had even made it clear that she did not want to die.
Professor of palliative medicine, Baroness Ilora G. Finlay, has recently written a paper with the title Assisted suicide has no place in medical care, and earlier the paper Assisting suicide is no therapy (PDF). The latter is a factual statement which is plainly true.
Nonetheless, it needs to be uttered as an important reminder in the debate about “integral” palliative care. If you have come to believe that mixing fire with water is a good idea, it’s probably time to think again.
Lars Johan Materstvedt, PhD
Lars Johan is Professor of philosophy and former Chair of the Ethics Task Force on Palliative Care and Euthanasia of the European Association for Palliative Care (EAPC) and is currently professor of philosophy at the Norwegian University of Science and Technology (NTNU) in Trondheim, Norway, where he works within medical ethics. He wrote the chapter ‘Euthanasia and palliative care’ in the fifth edition of the Oxford Textbook of Palliative Medicine in 2015.