Assisted Dying coming to Canada

What a week this past week has been. While I was away on a business trip to Europe the Supreme Court of Canada (SCC) let it be known that it would release on Friday this week its decision on the so-called Carter case, that is, it would pronounce on the constitutionality of the bits and pieces in our Criminal Code that criminalise assisted dying.

Unless you have lived under a rock during these last few years you will know that I spent a significant amount of my time arguing in favour of the decriminalisation of assisted dying in the country, no least in a report of an expert panel the Royal Society of Canada asked me to chair, on end-of-life decision-making in Canada. In addition I wrote a large number of newspaper columns on the issue and gave oodles of TV interviews and what-not to advance that cause.

So, there I was holed up in hotel rooms in Brussels and Geneva trying to respond to media inquiries. Fearlessly I predicted that the court would come to a unanimous decision and that it would decriminalise assisted dying. I couldn't see, given what we know from jurisdictions that have decriminalised, that the Justices would fall for the slippery-slope clap-trap rolled out by religious opponents of assisted dying, and, of course, their biggest ally, the current Attorney General of this country. I also couldn't see that the Justices would wilfully ignore consistent opinion polls suggesting that overwhelming (I mean: more than 80%) majorities of Canadians are in favour of a change toward making assisted dying available.

It turns out, I was right. The SCC came down with this unanimous decision, defining thus who would be able to receive assistance in dying: a 'competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.'

This is pretty much what we recommended in our report. What I find particularly important about these criteria is that the Justices rejected a threshold requiring that patients must be in a terminal condition, or near the end of life. The current legislation, on this count, in Quebec, will have to be re-written. At the last minute opponents of Quebec's legislation added this threshold, and, thanks to the SCC decision, it will have to be taken out of Quebec's legislation again as it would unjustly deprive people of access to assisted dying who are not close to the end of their lives.

I think, among the important lessons to be learned from all this, is this one: Opponents of assisted dying should reconsider their campaign strategies. They decided that telling anecdotes from jurisdictions that have decriminalised, making up a lot of stuff about things that allegedly happened in such jurisdictions and telling half-truths about what allegedly happened in jurisdictions that have decriminalized worked in their religious echo chamber of pro-life websites, as well as with allied newspaper columnists like the National Post's Barbara Kay and the Toronto Star's Rosie DiManno, and so it would probably work with Supreme Court Justices, too. Turns out, Supreme Court Justices are a bit smarter than DiManno and Kay, who have shown themselves clueless about the issue at hand throughout their years of campaigning in their newspaper columns against assisted dying. The judges looked at the actual evidence and 'rejected the argument that adoption of a regulatory regime would initiate a descent down a slippery slope into homicide.'

The other vacuous agitprop campaign tool deployed by this camp was their ever-growing concern for 'the vulnerable'. Given that they didn't want assisted dying available to anyone, they were careful never to define 'vulnerable'. Turns out, they and their government ally, the Attorney General, really meant everyone. Vulnerability ceases then to be a useful threshold criterion for anything. The Attorney General eventually said, on the Court record, that 'every person is potentially vulnerable.' The Supreme Court called curtains on this rhetoric, too. It states point blank, 'We do not agree.' - 

Aggressive lying and fudging of the issues apparently takes you only that far when it comes to Canada's Supreme Court Justices.

I wonder whether one analysis in the judgment (paragraphs 64-66) could be interpreted as rejecting the Catholic acts and omissions doctrine. Check that one out yourself. Worth a read.

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!

Competition on End-of-Life AgitProp

As you might have noticed, last week the Royal Society of Canada released (to much media interest in Canada and internationally) a Report drafted by an international expert panel on End-of-Life Decision-Making in the country. I chaired the panel. It was comprised of well-known figures in bioethics and health law, namely Jocelyn Downie, Hans van Delden, SheilaMcLean, Ross Upshur and Daniel Weinstock. Check the report out here or here.

As is inevitable with such a report, some of its recommendations are taken to be controversial by some people. It was no surprise to me that many of our recommendations on the provision of palliative care in the country, advance planning and other such pressing matters were ignored by the media, and instead the focus was on our recommendations on the decriminalization of certain kinds of assisted dying. The usual suspects came out of their woodwork in no time, the expected condemnations of church affiliated academics, and activist groups were so quick that it is unlikely the people in question actually had the time to read our document. My favourite was a medical school professor who condemned the report in its entirety, even though we actually cited his work approvingly. It seems it is not just philosophers shooting from the hip, as James Rachels worried in his classic article on this issue, but medical school professors, too.

So much has been said in the media, most of which was in fact positive and supportive of our conclusions, that it is impossible for me to respond to everything. However, I am determined to respond to two vile pieces of agitprop that were published in a National Post blog entry penned by Barbara Kay, as well as in a piece published by Licia Corbella in the Calgary Herald.

I intend to write a detailed response to these two pieces some time this coming week, but in the meantime, here's my Competition idea: I invite readers of this blog to analyse these two pieces of what might mistakenly be described as journalism by some and point out their mistakes and misleading arguments. Whoever finds the most mistakes and misleading arguments will receive a free hard cover copy of '50 Voices of Disbelief - Why We Are Atheists', signed by me or 'clean', whatever you prefer. The deadline for submissions will be Wednesday November 30, 2011, 5pm EST. Feel free to send your comments to me at udo schuklenk.

Good success!

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.