When this month’s issue of the journal Palliative Medicine dropped through the letter box, I was interested to see that the headline article is a ‘white paper’ from the European Association for Palliative Care (EAPC) – on euthanasia and physician-assisted suicide.
I often remark that there is no consensus on how we should die. The debates that swirl around euthanasia, assisted dying and the place of palliative care are striking illustrations of the differences of view that exist in various cultures and contexts.
Too often it is hard to get beyond oppositional stances on these issues. Fundamentally, palliative care activists oppose assisted death. Those who support assisted dying and euthanasia, by contrast, point to the limits of palliative care and argue that it cannot be useful in all contexts.
In the contested central ground each side struggles for dominion over ‘autonomy’, ‘choice’ and ‘dignity’ in dying. Only among a small, but interesting minority 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.
In 2001 I participated in a task force appointed by the EAPC to review the organisation’s position on this same subject. The group consisted of physicians, ethicists and me as a social scientist.
I remember working hard to encourage EAPC to move away from its then high-toned position on the issue which had been expressed in a paper (Regarding Euthanasia) published in 1994. In that statement the organisation had made a strong link with ideas developed about euthanasia during the 1920s in Germany, the subsequent role of the Nazi death camps, and the ongoing potential for disastrous unintended consequences that would inevitably follow any legalisation.
That 1994 paper was extremely clear on one central point: ‘We should, firmly and without qualification, oppose the legalisation of euthanasia as both unnecessary and dangerous’.
Our group produced an updated paper on the issue Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force which was published in 2003. We produced a report that the EAPC board endorsed and also circulated member organisations for their reaction to the paper, receiving 53 sets of comments, which were also published. The paper remained the adopted position of EAPC for more than decade.
Unlike the 1994 paper, the 2003 publication did not make a principled statement in opposition to euthanasia or assisted dying. Instead it set out 10 statements explaining that debate on the issues should be encouraged across Europe, that better quality research was needed, that requests for euthanasia arise from complex situations and should be treated with respect and responded to with the offer of palliative care. It then clearly stated that ‘The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care’.
It went on to distinguish ‘terminal’ or ‘palliative’ sedation from euthanasia. It listed the perceived negative consequences that might flow from the legalisation of euthanasia. It argued for more active approaches to advanced care planning to avoid problems at the end of life. It concluded by calling on EAPC to engage in more dialogue with those who support the legalisation of euthanasia and assisted dying – and to seize any opportunity to promote the extension of access to palliative care as a key goal for the mainstream healthcare systems of European countries.
In 2014 the leader of our group, the Norwegian professor of philosophy and ethicist Lars Johan Materstvedt returned to the issue. In an editorial in BMJ Supportive & Palliative Care he asked what now is the view of the EAPC on euthanasia? He pointed out that one of its member organisations in Belgium, the Federatie Palliatieve Zorg Vlaanderen, saw no contradiction between the combined practice of euthanasia and of palliative care. He also noted that the head of this organisation was a member of the EAPC board.
Materstvedt went on to point out that EAPC in a report for the UK Commission on Assisted Dying had been insufficiently clear in stating its position to the effect that euthanasia should not be part of palliative care. His editorial provoked a robust response from EAPC board members who restated the position of 2003 and indicated that the organisation was again reviewing the issue and would report in due course.
The latest report
Now, in February 2016, the position of EAPC has been reviewed and made public. This time I wasn’t involved in the process, and nor it would seem was Lars Johan Materstvedt, but I found the resulting position paper from EAPC interesting reading.
The paper begins with a summary of historical trends and the current situation regarding legalised euthanasia and assisted dying in various jurisdictions around the world. If this is comprehensive, then there is certainly a patchwork of approaches being adopted in different legal settings. More striking was the variable quality of the data on the take up of these processes, the proportion of deaths resulting from use of the legislation – 3.4% of all deaths in the Netherlands in 2015 and an estimated 4.6% in Belgium in 2013, but only 0.18% in Luxembourg, 0.31% in Oregon and 0.48% in Switzerland.
It was not until I re-read the 2003 paper that I realised how much this 2016 work built on its predecessor.
In the updated document, 21 statements have been generated to replace the original ten. The new statements are the products of a ‘Delphi procedure’ in which experts answer a set of questions and then in subsequent rounds respond to a series of statements derived from their answers. In this instance five rounds were applied and in the later ones board members of national palliative care associations and of EAPC itself took part.
The idea is that such an approach builds consensus statements and also allows levels of disagreement with the statements to be visible and measurable. In this case six of the 21 statements did not achieve full consensus, and this is helpfully explained in the paper.
The 21 statements begin with concepts and definitions. They start by affirming the World Health Organisation definition of palliative care. This is followed by definitions of euthanasia, assisted suicide, physician assisted suicide, non-treatment decisions, and palliative sedation. The section on ‘palliative care values and philosophy’ contains only one statement. Mainly concerned with autonomy and the uniqueness of the individual, it is difficult to see it as being particular to palliative care.
‘Patient level’ statements then follow. These are about the context of requests for euthanasia and the difference between euthanasia and sedation. As elsewhere, much of this covers the ground of the 2003 paper. But one new point is added: ‘palliative care is provided up until the end of life and is by definition never futile’. The commentary goes on to assert (rather than explain) that the term ‘palliative futility’ is a ‘misnomer … based on a false understanding of what palliative care is’.
The new document then reiterates the 2003 position – ‘The provision of euthanasia and PAS should not be included in the practice of palliative care’. There follows a long commentary rejecting the alternative view on this matter, held in Belgium.
‘Organisational level’ statements conclude the paper. Much of this again reiterates the 2003 paper. There should be respectful debate on the matter, advance care planning can address fears of loss of autonomy, and measures should be taken to ensure that legalised euthanasia or assisted dying do not undermine palliative care endeavours or result in the widening of criteria for their deployment. As before, the document concludes with the call to engage in debate with the protagonists of euthanasia and physician assisted dying – and above all to refocus attention on the need for better palliative care in mainstream services.
The EAPC position in 2016
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.
It is hard to understand why, for example, the following sentence was lifted from 2003 and reused almost unchanged in 2016: ‘Across Europe as a whole however, there is little evidence in the last 10 years of concerted attempts to bring about the legalization of euthanasia through parliamentary processes’.
In that time new legislation has commenced in Luxembourg, bills have been introduced into the UK Parliament, and (not mentioned in the document) two attempts have been made to legalize assisted suicide in the Scottish Parliament. A parliamentary report on the right to die has been produced in France and a draft law has been produced in Lithuania. To say nothing of the activities of lobby groups in many other countries.
The 2016 EAPC paper should be read by anyone seeking clarification on the stance towards euthanasia and physician assisted dying of Europe’s leading palliative care organisation.
Like its 2003 predecessor, but unlike the statement of 1994, it does not condemn euthanasia. Rather, it calls for tolerance, understanding and dialogue with those who support assisted death. It has declared that euthanasia and physician assisted dying should not be a part of palliative care. But it appears dismissive of those who take a different view and who practice accordingly.
It also seems to underestimate the appetite of government legislators in Europe to address the issue of assisted death. And in my own view it is not doing enough to define palliative care in ways that public and politicians can understand. Palliative care, weakly defined, is not a strong basis on which to oppose alternative ideas about how life might end.
Euthanasia is currently legal in just three countries worldwide, and all three of these are in the European Union. Will one of them (Belgium) 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’?
On the current pattern, we will have to wait for about 10 years to see how EAPC next approaches this issue. Let’s hope its deliberations then will be based on more of the respectful dialogue with others that it so much advocates.
David Clark (EAPC board member 2003-7)