Viewpoints: should euthanasia be available for people with existential suffering?

Here's a piece I have put together jointly with Xavier Symons for The Conversation.

Euthanasia debates often focus on people experiencing unbearable physiological or psychological suffering. But research suggests “loss of autonomy” is the primary reason for requesting euthanasia, even among patients with terminal cancer. There have also been suggestions existential suffering could be one of the main motivations behind such requests.

Existential suffering refers to an individual experiencing a lack of meaning or sense of purposelessness in life. Such sentiments bring feelings of weariness, numbness, futility, anxiety, hopelessness and loss of control, which may lead a dying patient to express a desire for death.

Some bioethicists argue it is inconsistent to allow euthanasia for terminal illness but not for existential suffering, as both are a source of profound pain and distress. While existential suffering usually tracks closely with catastrophic illness, it’s worth considering a situation in which there are no motivating medical reasons for a request for euthanasia or assisted suicide. Should a person be eligible purely on the basis they no longer wish to live?

A case in point: a largely healthy retired palliative care nurse in the UK who ended her life at an assisted suicide clinic in Switzerland. Should she have received medical aid in dying based on her carefully considered decision that she did not want to subject herself to the perceived awfulness of the ageing process?

---

The case against

Xavier Symons, Research Associate, University of Notre Dame Australia

Some may think people who request euthanasia do so because of excruciating and unremitting pain. The reality is almost always more complex. Literature on assisted dyingsuggests individuals who request euthanasia are typically suffering from a profound sense of purposelessness, loss of dignity, loss of control, and a shattered sense of self.

A 2011 study of Dutch patients who requested euthanasia indicated that “hopelessness” – the psychological and existential realisation one’s health situation will never improve – was the predominant motivation of patients who requested euthanasia.

And a recently published Canadian study of requests for medical assistance in dying stated “loss of autonomy was the primary reason” motivating patients to end their lives. Symptoms also included “the wish to avoid burdening others or losing dignity and the intolerability of not being able to enjoy one’s life”.

One option to address such requests is to establish a state apparatus to assist patients in ending their lives. An alternative, and one I would advocate, is to address deficiencies in health care infrastructure, and attempt to alleviate the unique suffering that drives patients to request euthanasia in the first place.

Spiritual or existential care can help someone who feels their life has lost meaning. from shutterstock.com

New approaches to end of life care, such as spiritual or existential care, engage at a deep level with the complexity of the suffering of patients with terminal illness. And, as has been stressed by several commentators, there is a need to improve access to palliative care in poorer regions, and provide optimal symptom management for patients wishing to die at home.

We could hypothesise about various situations where a person might request euthanasia without having a medical condition. Someone might wish to hasten their death because they are tired of life or afraid of ageing or death.

These cases are interesting insofar as they are not motivated by an underlying pathology. Yet there is much reason for concern.

Sanctioning euthanasia for the tired of life veers too close to a government endorsement of suicide. Where the state has a significant stake in suicide prevention, sanctioned euthanasia for existential suffering is not only counterproductive, it’s dangerous. Fundamentally, we would erode any meaningful difference between cases of suicide we regard as acceptable, and those we see as regrettable and befitting state intervention.

We might regard it as regrettable that an educated, wealthy 30-year-old takes their own life due to an existential crisis. Yet it is difficult to say how this is different in morally relevant respects from a 75-year-old who feels their life is complete and is undergoing an existential crisis.

---

The case for

Udo Schuklenk, Professor and Ontario Research Chair in Bioethics, Queen’s University, Canada

This discussion is mostly hypothetical. There seem to be few, if any, real-world cases where a competent person’s request for an assisted death is not motivated by an irreversible clinical condition that has rendered their lives not worth living in their considered judgement.

For instance, in the Netherlands, most people who ask for euthanasia and who are not suffering from a catastrophic illness, typically experience a terrible quality of life that is caused by an accumulation of usually age-related ailments. These involve anything from incontinence to deafness, blindness, lack of mobility and the like.

We do not give up on life for trivial reasons. Just think of the many refugees who – on a daily basis – are willing to risk their lives to escape an existence they do not consider worth living. Ending their lives is not typically on top of their to-do list.

Think of the many refugees who risk their lives to escape an existence they do not consider worth living. Ending their lives is not on top of their to-do list.ZEIN AL-RIFAI/EPA

The case of the anti-choice activists – who deny there is ever a justifiable reason for euthanasia – has been intellectually and politically defeated. None of the jurisdictions that have decriminalised assisted dying have reversed course, and more jurisdictions are bound to make this end-of-life choice available.

Public support remains strong in each permissive jurisdiction, particularly so in Belgium and the Netherlands where the majority of citizens support the existing laws.

Inevitably the question of scope must be addressed: who ought to be eligible to ask for and receive assistance in dying? If a competent person wishes to see their life ended for non-medical reasons, and asks for assistance to do so, I think a just society ought to oblige him or her if the following conditions are met:

1. the person has decisional capacity (is of “sound mind”)
2. the decision is reached voluntarily (without coercion)
3. no reasonable means are available, that are acceptable to the person, that would render their lives worth living again in their own best judgement
4. based on everything we know, the condition that motivated their request is irreversible.

The view that medicine is a profession aimed only at maintaining life, regardless of a patient’s quality of life, is dying its own death. If a clinical, psychological or other professional intervention does not benefit a patient to such an extent that they consider their continuing existence worthwhile, by definition that is not a beneficial intervention.

Equally, if an intervention, at a burden acceptable to the person, renders in their considered judgement their lives worth living again, they will not ask for an assisted death.

In most corners of the world people have fought hard to increase their individual freedoms to live their lives by their own values. A significant state interest is harmed if the state wishes to infringe on such autonomy rights.

---

Xavier Symons

It is true the health system, and indeed the state, should respect patient autonomy. Yet in practice we often put other considerations ahead of concerns like autonomy. Patients may not receive the treatments they request for a variety of reasons, like they may be prohibitively expensive, have a negligible chance of success, or no medical justification.

I believe if it is harmful to the interests of the state to legalise euthanasia for patients without a terminal illness, then the state has a right to refuse.

Significantly more research needs to be conducted on the social impacts of euthanasia, and physician assisted suicide, for patients without a medical condition. In this case, we have no “Oregon model” – an assisted suicide regime seen by many as an example of a safe and well-regulated system – to confirm or assuage our concerns. Jurisdictions such as Oregon only allow assisted suicide for patients with a terminal illness.

---

Udo Schuklenk

I echo Xavier’s plea to improve health care in order to improve our quality of life, and, as a likely corollary of this, to reduce the number of requests for medical aid in dying. However, even in the best of all possible health care worlds, unless unbearable suffering itself has been eliminated, some patients will ask for an assisted death. No amount of “dignity therapy” rhetoric and references to small-scale studies changes that fact of the matter.

Xavier correctly mentions some reasons for doctors justifiably not providing certain patient-requested medical care. They are all based in different ways on harm-to-others justifications such as resource allocation rationales, or are futility-related (arguably also a case of harm-to-others given the reality of limited health care resources). This reasoning is not applicable to the case under consideration given the self-regarding nature of the request.

Xavier is correct that the state would be under no obligation to legalise euthanasia for not catastrophically ill patients if that was significantly harmful to the interests of the state. However, there is no evidence that the availability of euthanasia is harmful to state interests.

The original Conversation piece can be found here.

Trudeau Curtails Harper's Anti-Choice Activist End-of-Life Panel Activities

This is brilliant. Former PM Stephen Harper appointed in the dying weeks of his government a smallish panel of anti-choice activists to advise his government on how to implement the Supreme Court of Canada's ruling on assisted dying. The CBC reports today that PM Trudeau's government has moved to curtail this panel's scope of activities. It doesn't want advice from the panel on possible legislation any longer, the federal government simply asks the panel members to summarise the results of its consultation. I'm pretty sure the results of this panel's activities will be filed away right after that. Game over for these anti-choice activists. Here is some more background information on two of them. Note that both of them were expert witnesses on behalf of the Harper government fighting the case against assisted dying in our courts. Their expertise sank without a trace when the Supreme Court decided unanimously that depriving us of access to assisted dying violates our Charter rights. Mind boggling the amount of tax monies that were wasted on their activities.

Conservative and Liberal Canadian Senators bring assisted dying bill on the way

Conservative Ontario Senator Nancy Ruth and Liberal British Columbia Senator Larry Campbell have introduced today an assisted dying bill in the Canadian Senate. They hope to have it voted on during the spring session of the House. From there it would proceed to the House of Commons for further deliberation and eventual vote.

You might recall that Conservative MP Stephen Fletcher introduced such a bill in the House of Commons, but it was killed there by procedural means by a government determined not to be associated with legislation that's broadly in sync with what more than 80% of Canadians want to see happen in the country.

We will see how this pans out. With a bit of luck it adds further momentum to the currently ongoing Supreme Court of Canada case. Certainly anything helping the momentum toward the decriminalization of assisted dying in the country is to be applauded.

Given that we are going into a federal election in 2015, I can't wait to see how the parties' head honchos and election strategists will try to wriggle their way out of this one. It's a topic that political parties and their parliamentary voting drones try to avoid as much as the plague, despite overwhelming societal support for such a change. - It goes without saying, the honourable exception was Bill 52 in Quebec, there introduced with cross-party support.

The Senate bill reportedly differs from MP Fletcher's bill in three respects:

• It clarifies the roles of the assisting physician, the consulting physician, and who can be official witnesses.
• It requires doctors to report to their provincial ministry that they have assisted with a death and provide a certificate with all relevant details
• It requires a 14-day waiting period after a patient's first request to a physician for help with dying, followed by a second conversation to confirm the patient's wishes

 

When families refuse to accept catastrophic medical diagnoses

Here's this week's column in the Kingston Whig-Standard.

Tragedy often strikes unexpectedly. Over the last few months a number of cases involving catastrophic brain damage, usually as a result of surgery-gone-wrong, ended up in the news, for all the wrong reasons.

Typically they involve families refusing to accept the professional clinical judgment pertaining to their loved ones. Families insist that their loved ones’ bodies be kept functioning, the hospitals asking for permission to turn off the ventilators and other machines that keep these bodies ticking. More often than not these refusals to accept clinical, professional verdicts are related to strong religious beliefs held by these families. Invariably huge bills are racked up in the ensuing fights between the clinicians, the hospitals employing them and the families and their supporters.

Let me give you two very recent examples of irreversibly brain-damaged patients whose families are fighting tooth and nail to keep their bodies ticking. One case is Canadian, the other occurred in December in the United States. Both cases are ongoing as I write this. The Canadian case involves a patient in irreversibly minimally conscious state, the United States case involves a patient who is plain brain-dead. The former patient has no chance to recover from his injuries, the latter patient – by today’s medical standards – isn’t even a patient any longer, she is actually considered deceased.

The Canadian case

You might have heard about it. The Rasouli case, as it is called in legalese, has already led to a path-breaking court finding in the country. The story is about as tragic as they come. Rasouli, 61, migrated with his family to Canada from Iran shortly before he was in need of brain surgery. Complications arose and Rasouli is now in a minimally conscious state, irreversibly so. His continuing existence relies on a ventilator doing its job and feeding through a feeding tube. The attending clinicians believe that the right course of action would be to remove the ventilator and let Rasouli’s life expire. In their considered view he will eventually die from complications resulting from the various interventions required to keep his body alive.

The Supreme Court of Canada ruled recently that Rasouli’s doctors cannot remove the ventilator unilaterally and his family’s religious beliefs require that everything be done to keep his body alive. Reportedly the cost to taxpayers of the family’s demands has been a bill of about $3.5 million. Clearly this is a lot of money to pour into futile care. Money that could be utilized to reduce hospital waiting times, among other things. The Toronto Star reports that Rasouli’s family found him space in a specialized care facility where his care will cost the provincial taxpayers only a miserly $1,000 per day. Meanwhile the family is fighting hard to get taxpayers to also cover the accommodation cost of about $1,700 per month. Again, that’s a lot of public money to pour into futile care.

The United States case

As in the Rasouli tragedy this case also hit a family ‘out of the blue’ so to speak. The 13-year-old teenager Jahi McMath underwent surgery to remove her tonsils to address her sleep apnea. Something went badly and quite unexpectedly wrong. McMath was formally declared brain dead by a judge in mid-December. The United States being what it is, a court battle ensued. The family of the deceased teenager believes fervently in religious miracles and insists that their dead daughter is moved to a care facility willing to accept the body. Just to explain, neurological, or brain death, is a technical term for the irreversible shut down of the brain. It doesn’t mean that the body can’t be kept going for a few weeks, even months, before it eventually begins to decompose. Accordingly the family hoping for their miracle will be able to notice bodily twitches, sadly not dissimilar to decapitated hens jumping around on the ground until their body finally shuts down.

A care facility operated by a former owner of a beauty salon has declared its willingness to care for the deceased – oops, the patient’s – body. Only in the United States you say? That’s quite possibly so. There are further complications in this case, requiring that the hospital where the body is currently kept ticking undertakes surgery to prepare it for transport. Luckily for the parents, the United States is a deeply religious and not terribly science literate country, so donations are flowing in generously to finance the preposterous move to the ‘care facility’ operated by the former beauty salon owner. If this wasn’t all so tragic, you can’t help but wonder when this will be turned into a reality TV show.

Unlike in Canada, none of this is about tax monies. In this case private resources are being burned to essentially play around with a dead body. There are ethical issues about demanding that doctors undertake surgery on a dead person. There are also ethical issues about what we should reasonably be permitted to do with the bodies of our deceased loved one’s.

Leaving those issues aside, however, it seems to me that an unfortunate confluence of science illiteracy and religious belief motivates families unprepared for the unexpected demise of their loved ones to go to ever greater length to keep whatever is left of their loved ones around.

High-tech permits our hospitals to oblige them with remarkable results. The highest courts in the lands are breaking new ground with regard to what can and cannot as well as what must and must not be done with these corpses. I wonder sometimes – to the dismay of most of my colleagues – whether we got the ethics of these cases all wrong.

The real patients here arguably are not the deceased (or nearly deceased) ones but their family members. Perhaps we should consider accommodating some of their seemingly outlandish wishes to give them time to let go of their loved ones. After all, it is not as if the deceased teenager will suffer as a result of being put into the so-called ‘care facility’ run by the former beauty salon manager. There are difficult issues to be resolved involving the participation of doctors in activities that do not actually serve who they consider to be the patient. What should be clear, however, is that none of this could possibly justify expending huge amounts of tax payers health care resources on futile care activities, as is currently clearly happening in Rasouli’s case.

Oh yes, and perhaps civic lessons in science literacy might be a great idea.

Royal Society Report on End-of-Life Issues makes it into Oxford UP textbook

How delightful little surprises such as this can be :). Talking about the wonders of social networking. So here it goes. Samantha Brennan and Charles Weijer (two friends and colleagues at Western University) posted a link on Facebook, advertising their new bioethics textbook. It's called Bioethics in Canada and found no less a publisher than Oxford University Press. The author list certainly reads like a list of the Who is Who in Bioethics internationally and in Canada. Imagine my delight when I discovered - by chance! - that our Royal Society of Canada Report on End-of-Life Decision-Making was reprinted in part in said textbook. Thank you!

Royal Society of Canada End-of-Life Decision-Making Panel

RSC: The Academies of Arts, Humanities and Sciences of Canada (the Royal Society of Canada) will announce “End-of-Life Decision Making”, an expert panel commissioned at its own initiative. The press release follows.

RSC/SRC Expert Panel on End-of-Life Decision Making

October 26, 2009

Among the many public-service roles of national academies around the world, one of the most important is the preparation of expert assessments on critical issues of public policy. The national academies in the United States are the most active in this regard, but the senior academies in other nations, notably in England, France, and other European countries, have been very active on this front for many years. Such reports are designed to be balanced, thorough, independent, free from conflict of interest, and based on a deep knowledge of all of the published research that is pertinent to the questions that have been posed.

The Royal Society of Canada (RSC) also has a long record of issuing definitive reports of this kind, either on its own initiative, or in response to specific requests from governments or other parties. The project being announced today, “End-of-Life Decision Making,” is one of a new series that the Society has commissioned, at its own initiative, on issues of significant public interest and importance at the present time. Announcements on the other projects will follow over the course of the coming months.

The Society relies on the advice of one of its senior committees, The Committee on Expert Panels (CEP), in formulating new projects of its own and in responding to requests for panel projects from external parties. In addition, the members of the Society’s CEP are responsible for selecting the membership of panels, including the chair; overseeing the conduct of panel activities; managing the peer review of the draft final report; and assisting the panel members with any difficulties that arise during the conduct of their work.

Over the course of the past year, the CEP has brought forward suggestions on a new series of expert panel reports for consideration by the Society’s governing board. The board has approved a number of these suggestions, including the project on “End-of-Life Decision Making.” The additional information, below, identifies the members of the panel who have agreed to write this report, as well as the preliminary terms of reference for this project.

Questions about this project may be directed to:

Professor Udo Schuklenk (panel chair), Queen’s University:

udo.schuklenk@gmail.com

Telephone: Office 613-217-8659

Professor Daniel Weinstock, Université de Montréal:

daniel.marc.weinstock@umontreal.ca

Telephone: Office 514-343-7345

Members of the RSC/SRC Expert Panel

(6 Panel Members)

Chair: Udo Schuklenk, PhD:

· Professor of Philosophy and Ontario Research Chair in Bioethics, Queen’s University

· http://www.udo-schuklenk.org/

· Publications: http://www.udo-schuklenk.org/researchs.htm

Before coming to Canada he worked at Australian, British, German, and South African universities, including Monash University’s Centre for Human Bioethics and at the University of Central Lancashire’s Centre for Professional Ethics. He is currently Joint Editor in Chief of Bioethics and founding editor of Developing World Bioethics. Both journals are listed in major indices including MedLine.

Members:

1. Johannes J. M. van Delden, MD, PhD:

Julius Center for Health Sciences, University Medical Center, Utrecht University, Utrecht, The Netherlands; Chair, Ethical Commission of the Medical Council of the Royal Netherlands Academy of Arts and Sciences (KNAW)

http://people.juliuscentrum.nl/profile.aspx?id=10959

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1331141

http://jme.bmj.com/cgi/content/extract/33/4/187

2. Jocelyn Downie, S.J.D.:

Canada Research Chair in Health Law and Policy
Professor, Faculties of Law and Medicine, Dalhousie University

http://law.dal.ca/Faculty/Full_Time_Faculty/Bios/Jocelyn_Downie/index.php

3. Sheila McLean, PhD, LLD, LLD, FRSE, FRCGP, FRSA:

First holder of the International Bar Association Chair of Law and Ethics in Medicine at Glasgow University and Director of the Institute of Law and Ethics in Medicine at Glasgow University.

http://www.gla.ac.uk/departments/schooloflaw/staff/academic/mcleans/

4. Ross Upshur, MD, MSC:

Canada Research Chair in Primary Care Research and Associate Professor, Departments of Family and Community Medicine and Public Health Sciences, University of Toronto; Director, University of Toronto Joint Centre for Bioethics

http://www.sunnybrook.ca/team/member.asp?t=13&page=1199&m=175

http://www.jointcentreforbioethics.ca/people/upshur.shtml

5. Daniel Weinstock, PhD:

Canada Research Chair in Ethics and Philosophy, University of Montreal

Professeur titulaire, Département de Philosophie, and Directeur du Centre de recherche en éthique de l'Université de Montréal (CREUM)

http://www.philo.umontreal.ca/prof/daniel.marc.weinstock.html

End-of-Life Decision Making

Context and Preliminary Terms of Reference (June 18, 2009)

Introduction

The purpose of these preliminary terms of reference is to indicate some of the main boundaries of the project description. At its initial meetings the panel will do a careful review of this preliminary statement and will indicate more precisely the ultimate scope and focus of the project, which is expected to be more limited than what is presented here. The final terms of reference will be released by RSC at that time.

Objectives

This is one the most serious social and ethical issues facing all advanced countries. The many and varied perspectives relevant to the issue are rarely presented to the public in a balanced, thorough, and informed way. A RSC expert panel report could make a significant contribution to the public policy debate on this issue.

1. There is a large body of medical science evidence that, if summarized for the public, would be helpful to their consideration of the issue.

2. The public could also benefit from a presentation of evidence about actual experience from the various jurisdictions that permit physician-assisted death.

3. The public would also benefit greatly from having a careful, balanced review of various pros and cons of decriminalization of physician-assisted death from well-reasoned ethical and legal standpoints.

4. Many medical personnel would also benefit from having all the issues laid out in a comprehensive and sensitive way.

5. The panel should consider proposing policy recommendations for public consideration that are the results of its review.

Questions that may be considered by the panel

1. Is either physician-assisted suicide [PAS] or voluntary euthanasia [VE] ever morally justifiable and should either be decriminalized under certain carefully defined conditions? If so, under what conditions?

2. Is there a morally significant difference between withholding and withdrawing life-prolonging treatment, on the one hand, and hastening a patient’s death by VE or PAS, on the other?

3. Is “terminal sedation” (sometimes referred to as “palliative sedation”) a morally and legally preferable option to VE or PAS? Does the distinction between terminal sedation and life-shortening symptom relief make sense in practice? What is the situation with regard to the provision of potentially life-shortening symptom relief? It is a practice that is, to a certain extent, in the shadows. It has not been addressed explicitly and comprehensively in the law and leaves some wondering whether it is legal or not and therefore whether some people may not be getting adequate symptom management.

4. Is cessation of eating or drinking (or of artificial hydration and nutrition) a morally and legally preferable option to VE or PAS?

5. Is there evidence of abuse with respect to PAS and VE in jurisdictions in which PAS or VE have been decriminalized (particularly those with contexts comparable to Canada)? What types of data should be considered germane and persuasive to this question?

6. What, if any, safeguards could prevent abuse and exploitation of VE and PAS without erecting insuperable barriers for people who wish to access these forms of assisted dying?

7. Is the concept of human dignity a useful one for discussions of VE and PAS?

8. Is either VE or PAS consistent with traditional medical ethics? What has the Hippocratic Oath to say with regard to this? Would either be likely to undermine the bond of trust between doctor and patient? Would either be likely to enhance the bond of trust between doctor and patient?

9. Are Advance Directives reasonable, ethically and legally defensible instruments to express a formerly competent patient's wishes? What is the value (or lack thereof) of Advance Directives in this context? Is there a difference between positive and negative directives?

10. If it is determined that VE and PAS should be legally permitted, how should the issue of incompetent dying patients be approached?

11. What is the legal and ethical status of unilateral withholding and withdrawal of potentially life-sustaining treatment? (It is a hotly-contested area of end of life practice in Canada right now and is one that is causing significant moral distress for everyone involved.)

12. Why does consent (or refusal), which has the effect of legitimizing some behaviours, not seem to have the same effect in the case of PAS or VE?

13. How should we evaluate false positives and false negatives? Is it worse to have a system in place that allows for a lot of needless suffering and thwarting of individual autonomy, but never generates a single false positive, or is the converse true? (This makes a difference to how we calibrate the safeguards.)

Suggested approach to the topic

(a) Begin by asking: What is the state of current knowledge with respect to the following?

· What are the current states of practice with respect to end of life care in Canada (with respect to withholding and withdrawal, potentially life-shortening symptom relief, PAS, and VE)? What are the main variables in this area? Who are the main decision-makers? What are the default positions (what usually happens unless someone protests strongly)? What is the current state of the empirical evidence with regard to PAS and VE?

· How do families of patients, patients and health care providers feel about the current states of practice?

· What trajectory of development are we on in this area?

· How are providers, patients and families being educated?

· What is the law in this area in Canada? What are Canadians' beliefs about the law? What are Canadians' views about what the law should be like?

· What is driving current decision-making in this area – e. g., is it economics, shortages of providers, lack of training, normative stances, etc.?

(b) Then ask: What are the main value positions (normative stances) in play and to what extent are they actually motivating decisions?

(c) Then move on to the substantive normative questions in the light of the above. The panel's report should aim not to duplicate work already undertaken in other reports. Instead, the panel will undertake a review of such work prior to formulating its own analysis of the issues.

******************************************************

Bonjour,

Demain, la SRC : Les Académies des arts, des lettres et des sciences du Canada (la Société royale du Canada) annoncera un groupe d’experts commandé, de son propre chef, sur « La prise de décisions en fin de vie». Le communiqué suit.

Groupe d’experts de la SRC sur la prise de décisions en fin de vie

Le 26 octobre 2009

Parmi les nombreux rôles de service public que jouent les académies nationales dans le monde, l'un des plus importants est sans doute la production de rapports d'experts sur les enjeux importants de la politique gouvernementale. Les académies nationales des États-Unis sont les plus actives à cet égard, mais celles d'autres pays, notamment de l'Angleterre, de la France et d'autres nations européennes, sont aussi très actives sur ce front depuis de nombreuses années. Ces rapports doivent être équilibrés, exhaustifs, indépendants, libres de tout conflit d'intérêts et fondés sur une connaissance approfondie de la recherche publiée se rapportant aux questions qui ont été posées.

La Société royale du Canada (SRC) a également une longue feuille de route en matière de production de rapports définitifs de ce genre, qu'elle les produise de sa propre initiative ou en réponse à des demandes précises des gouvernements ou d'autres parties. Le projet annoncé aujourd'hui, « La prise de décisions en fin de vie » fait partie d'une nouvelle série de projets que la Société a commandés, de son propre chef, concernant des enjeux d'intérêt public d'une grande importance. Les autres projets seront annoncés au cours des prochains mois.

La Société se fie aux conseils d'un de ses principaux comités, le Comité sur les groupes d'experts, pour élaborer les nouveaux projets qu'elle met en œuvre de sa propre initiative ou en réponse à des demandes provenant de parties externes. Les membres de ce Comité sont également responsables de sélectionner les membres du groupe d'experts, y compris le président, de superviser les activités du groupe, de gérer l'examen par les pairs de la version préliminaire du rapport final et d'aider les membres du groupe d'experts si des difficultés surviennent durant leurs travaux.

Durant la dernière année, le Comité sur les groupes d'experts a suggéré au conseil d'administration de la Société une nouvelle série de rapports d'experts. Le conseil a approuvé un bon nombre des suggestions, y compris le projet sur les « La prise de décisions en fin de vie ». Les renseignements ci-dessous indiquent qui sont les membres du groupe d'experts, qui ont accepté de rédiger ce rapport, ainsi que le cadre de référence préliminaire de ce projet.

Les questions concernant ce projet peuvent être adressées à :

Professor Udo Schuklenk (panel chair), Queen’s University:

udo.schuklenk@gmail.com

Téléphone: 613-217-8659

Professor Daniel Weinstock, Université de Montréal:

daniel.marc.weinstock@umontreal.ca

Téléphone: 514-343-7345

Composition du groupe d'experts de la SRC

(six membres)

Président : Udo Schuklenk, Ph. D. :

· Professeur de philosophie et directeur de la chaire de recherche en bioéthique, Université Queen’s

· http://www.udo-schuklenk.org/

· Publications : http://www.udo-schuklenk.org/researchs.htm

Avant son arrivée au Canada, il a travaillé dans différentes universités en Australie, en Grande-Bretagne, en Allemagne et en Afrique du Sud, dont au Centre de bioéthique humaine de l’Université Monash et au Centre d’éthique professionnelle de l’Université du Central Lancashire. Il est actuellement corédacteur en chef de la revue Bioethics et rédacteur en chef fondateur de la revue Developing World Bioethics. Ces deux publications figurent dans les principaux index, y compris MedLine.

Membres :

1. Johannes J. M. van Delden, M.D., Ph. D. :

Centre Julius pour les soins de la santé, Centre médical universitaire, Université d’Utrecht, Pays‑Bas; chaire, commission d’éthique du Conseil médical de l’Académie royale des arts et des sciences néerlandaise (KNAW)

http://people.juliuscentrum.nl/profile.aspx?id=10959

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1331141

http://jme.bmj.com/cgi/content/extract/33/4/187

2. Jocelyn Downie, S.J.D. :

Chaire de recherche du Canada sur le droit et la politique de la santé

Professeure, facultés de droit et de médecine, Dalhousie University

http://law.dal.ca/Faculty/Full_Time_Faculty/Bios/Jocelyn_Downie/index.php

3. Sheila McLean, Ph. D., LL.D., FRSE, FRCGP, FRSA :

Première titulaire de la chaire de droit et d’éthique médicale de l’Association internationale du barreau et directrice de l’Institut de droit et d’éthique médicale, University of Glasgow

http://www.gla.ac.uk/departments/schooloflaw/staff/academic/mcleans/

4. Ross Upshur, M.D., M.SC. :

Chaire de recherche du Canada dans le domaine des soins primaires et professeur, départements de médecine familiale et communautaire et des sciences de la santé publique, University of Toronto; directeur, Centre conjoint de bioéthique du University of Toronto http://www.sunnybrook.ca/team/member.asp?t=13&page=1199&m=175

http://www.jointcentreforbioethics.ca/people/upshur.shtml

5. Daniel Weinstock, Ph. D. :

Chaire de recherche du Canada en éthique et en philosophie, Université de Montréal

Professeur titulaire, département de philosophie, et directeur du Centre de recherche en éthique de l'Université de Montréal (CREUM) http://www.philo.umontreal.ca/prof/daniel.marc.weinstock.html

Groupe d’experts de la SRC sur la prise de décisions en fin de vie

Principes généraux préliminaires (le 18 juin 2009)

Introduction

Ces principes généraux préliminaires ont pour but d’établir certaines balises essentielles en ce qui a trait à la description du projet. Au cours de ses premières réunions, le groupe d’experts examinera attentivement cette description préliminaire et précisera la portée et le but du projet, qui devraient être plus limités que ce que nous présentons ici. Les principes généraux finaux seront établis par la SRC à ce moment-là.

Objectifs

Cette question est celle qui, dans tous les pays avancés, pose les problèmes sociaux et éthiques les plus sérieux. Les très nombreux points de vue sur la question sont rarement présentés au grand public de façon objective, approfondie et éclairée. La publication d’un rapport par un groupe d’experts de la SRC pourrait contribuer de façon importante au débat public sur la question.

1. Il existe une volumineuse documentation médicale qui, résumée à l’intention du grand public, pourrait appuyer sa réflexion sur la question.

2. Le grand public pourrait également profiter de la présentation de documents sur l’expérience menée en différents endroits où l’euthanasie médicalement assistée est autorisée.

3. Le grand public pourrait aussi grandement profiter d’une revue approfondie et rigoureuse des pour et des contre de la décriminalisation de l’euthanasie médicalement assistée d’un point de vue éthique et juridique bien raisonné.

4. De nombreuses personnes exerçant dans le domaine médical auraient avantage à voir tous les enjeux exposés de façon claire et sensible.

5. À la suite de son étude, le groupe d’experts devrait envisager de soumettre des recommandations en matière de politique à l’intention du grand public.

Questions que le groupe d’experts pourrait examiner

1. Le suicide médicalement assisté et l’euthanasie volontaire sont-ils moralement justifiables et devraient-ils être décriminalisés dans certains cas bien définis? Si oui, quels seraient ces cas?

2. Y a-t-il une différence importante, sur le plan moral, entre le refus et le retrait d’un traitement de prolongation de la vie, d’une part, et l’accélération de la mort d’un patient par l’euthanasie volontaire ou le suicide médicalement assisté, d’autre part?

3. La « sédation terminale » (appelée parfois « sédation palliative ») est-elle préférable, sur le plan moral et juridique, à l’euthanasie volontaire ou au suicide médicalement assisté? Dans la pratique, y a-t-il une distinction entre sédation terminale et soulagement des symptômes susceptible d’abréger la vie? Où en est-on sur la question du soulagement des symptômes abrégeant la vie? C’est une pratique qui, dans une certaine mesure, se trouve dans une zone d’ombre. Elle n’a pas été examinée de façon explicite et exhaustive par les législateurs et l’on ignore encore si elle est conforme à la loi. Par ailleurs, dans le cas de certaines personnes, on peut se demander si la gestion des symptômes est adéquate.

4. Cesser d’alimenter le patient ou de lui donner à boire (ou cesser toute hydratation et alimentation artificielle) est-il préférable, sur le plan moral et juridique, à l’euthanasie volontaire ou au suicide médicalement assisté?

5. Y a-t-il des preuves d’abus en ce qui a trait au suicide médicalement assisté et à l’euthanasie volontaire là où ces pratiques ont été décriminalisées (particulièrement dans des contextes comparables à celui du Canada)? Sur quel type de données, pertinentes et convaincantes, pourrait-on s’appuyer pour répondre à la question?

6. Quelles mesures, le cas échéant, pourraient prévenir l’abus et l’exploitation de l’euthanasie volontaire et du suicide médicalement assisté sans ériger d’obstacles insurmontables pour les personnes qui souhaiteraient accéder à ces formes d’aide à la mort?

7. Le concept de dignité humaine est-il utile aux discussions sur l’euthanasie volontaire et le suicide médicalement assisté?

8. L’euthanasie volontaire et le suicide médicalement assisté sont-ils conformes à l’éthique médicale traditionnelle? Que dit le serment d’Hippocrate sur la question? Ces pratiques risquent-elles de compromettre le lien de confiance entre le médecin et le patient ou, au contraire, peuvent-elles le resserrer?

9. Les directives préalables sont-elles des outils raisonnables et justifiables sur le plan éthique et juridique pour formuler de façon adéquate les souhaits des patients qui avaient auparavant la capacité de décider? Quelle est la valeur (ou la non‑valeur) des directives préalables dans ce contexte? Y a-t-il une différence entre directives positives et directives négatives?

10. Si l’on établit que l’euthanasie volontaire et le suicide médicalement assisté devraient être légalement autorisés, comment doit-on approcher la question des patients mourants qui sont dans l'incapacité de décider?

11. Quel est le statut, du point de vue juridique et éthique, du refus ou du retrait unilatéraux d’un traitement susceptible de maintenir la personne en vie? (Cette question est vivement contestée au Canada et cause une grande détresse morale chez toutes les personnes concernées.)

12. Pourquoi le consentement (ou le refus), qui a pour effet de justifier certains comportements, n’a-t-il pas la même incidence dans le cas de l’euthanasie volontaire ou du suicide médicalement assisté?

13. Comment devrions-nous évaluer les faux positifs et les faux négatifs? Est-il plus grave d’avoir un système en place qui donne lieu à beaucoup de souffrance inutile et qui nie l’autonomie individuelle, mais ne génère jamais de faux positifs, que l’inverse? (Cela fait une différence sur la façon de calibrer les balises.)

Suggestion d’approche

(a) Demandez-vous d’abord : Quelle est l’état de nos connaissances en ce qui a trait à ce qui suit?

· Quelles sont les pratiques actuelles en matière de soins de fin de vie au Canada (relativement au refus ou au retrait des soins, au soulagement des symptômes susceptible d’abréger la vie, au suicide médicalement assisté et à l’euthanasie volontaire)? Quelles sont les principales variables dans ce domaine? Qui sont les principaux décideurs? Quelles sont les positions par défaut (ce qui se passe généralement, à moins que quelqu’un proteste fermement)? Quelles sont les connaissances empiriques actuelles en ce qui a trait au suicide médicalement assisté et à l’euthanasie volontaire?

· Que pensent les familles des patients, les patients et les fournisseurs de soins de santé des pratiques actuelles?

· Quelles sont les perspectives dans ce domaine?

· Comment les fournisseurs de soins de santé, les patients et les familles sont-ils informés?

· Quel est le contenu de la législation en la matière au Canada? Comment les Canadiens perçoivent-ils cette législation? Quel devrait être le contenu de la législation selon les Canadiens?

· Qu’est-ce qui sous-tend la prise de décisions dans ce domaine, p. ex., l’économie, l’insuffisance de fournisseurs, le manque de formation, les positions normatives, etc.?

(b) Demandez-vous ensuite : Quels sont les principaux énoncés de valeur (positions normatives) en jeu et dans quelle mesure influent-ils sur les décisions?

(c) Passez ensuite aux questions normatives essentielles, à la lumière de ce qui précède. Le groupe d’experts doit veiller à ne pas reproduire les travaux déjà effectués dans le cadre d’autres rapports. Il doit plutôt prendre connaissance de ces travaux avant d’entreprendre sa propre analyse de ces questions.