Stand up, stand up, against Jesus

Civility has its uses, but we should not be afraid of satire and mockery as weapons against religious power

• Russell Blackford and Udo Schuklenk
• guardian.co.uk, Friday 6 November 2009 10.30 GMT

The question: Is there an atheist schism?

Religious teachings promise us much — eternal life, spiritual salvation, moral direction, and a deeper understanding of reality. It all sounds good, but these teachings are also onerous in their demands. If they can't deliver on what they promise, it would be well to clear that up. Put bluntly, are the teachings of any religion actually true or not? Do they have any rational support? It's hard to see what questions could be more important. Surely the claims of religion — of all religions — merit scrutiny from every angle, whether historical, philosophical, scientific, or any other.

Contrary to many expectations in the 1970s, or even the 1990s, religion has not faded away, even in the Western democracies, and we still see intense activism from religious lobbies. Even now, one religion or another opposes abortion rights, most contraceptive technologies, and therapeutic cloning research. Various churches and sects condemn many harmless, pleasurable sexual activities that adults can reasonably enjoy. As a result, these are frowned upon, if not prohibited outright, in many parts of the world, indeed people lose their lives because of them. Most religious organisations reject dying patients' requests to end their lives as they see fit. Even in relatively secular countries, such as the UK, Canada, and Australia, governments pander blatantly to Christian moral concerns as the protection of religiously motivated refusals to provide medical professional services demonstrates.

In a different world, the merits, or otherwise, of religious teachings might be discussed more dispassionately. In that world, some of us who criticise religion itself might be content to argue that the church (and the mosque, and all the other religious architecture that sprouts across the landscape) should be kept separate from the state. Unfortunately, however, we don't live in that world.

When religion claims authority in the political sphere, it is unsurprising — and totally justifiable — that atheists and skeptics question the source of this authority. If religious organisations or their leaders claim to speak on behalf of a god, it is fair to ask whether the god concerned really makes the claims that are communicated on its behalf. Does this god even exist? Where is the evidence? And even if this being does exist, why, exactly, should its wishes be translated into law?

In many situations, it is better to be civil, as Paul Kurtz has pointed out, but satire and mockery have traditionally had a legitimate place whenever absurd ideas are joined to power and privilege. Enlightenment thinkers such as Voltaire often used mockery to show the absurdity of ideological stances — including religious ones — that were considered sacrosanct. Mockery is one way of saying that a view does not deserve to be taken seriously. Religious views are fair game if one can also show, on a more serious level, why the view in question does indeed not deserve serious respect.

Perhaps some rationalist or humanist organisations, such as Kurtz's venerable Center for Inquiry, do have good reason to maintain a scholarly and dignified brand image. But there is also room for the younger, brasher atheists whom Kurtz inaccurately brands as "fundamentalists", and, in any event, there is a world of difference between appropriate civility and keeping quiet.
In the US, unfortunately, some atheists appear to have concluded that even civil and thoughtful criticism of supposedly "moderate" religion (i.e., almost anything that does not dispute evolutionary theory) should be discouraged.

These "accommodationist" atheists tend to be focused on science advocacy, particularly the teaching of evolution in public schools. In seeking public support for their positions, they think it prudent to take the various American demographics as they are. Since they want to sell evolutionary science to very large numbers of pious Americans, the last thing they want is to see it linked with atheism.

Once you think in that way, from a kind of marketing perspective, it can take over your approach to what you think you ought to say. Sincerity goes out the window, and everything must be "framed" to please the audience. We doubt that this strategy can work.

Religion cannot be eradicated — that is not a realistic goal — but the many problems with religious dogma can and should be highlighted. As atheists, we should state clearly that no religion has any rational warrant, and that many churches and sects promote cruelty, ignorance, and civil rights abuses.

There are harmful consequences to real people in the real world if the views of churches and sects are enshrined in law or given undue social deference - the acceptance even in liberal secular societies of conscientious objection as a legitimate reason for health care professionals and even civil servants to refuse to provide professional services to certain citizens is a case in point. For these reasons it is important that we should speak out and publicly contest the special authority that is accorded, all too often, to pontiffs, imams, priests, and presbyters. Religious leaders are not our moral leaders, much as they clamour to be, and however much the politicians flatter them. These spiritual emperors have no clothes, and we shouldn't flinch from saying so.

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.

octuplets and all :)

Here's a piece from today's Toronto Star (they're using quite a bit from an interview they did with me, so it's probably ok to dump it into my blog):

Patients have the right to help guide their own medical treatment, ethicists agree, but there are limits. And the case of a California woman who used a fertility clinic to have octuplets – on top of the six children she already has – goes way, way beyond any reasonable confines, they agree.

"This is the most bizarre case of patient autonomy I have ever seen," says medical ethicist Udo Schuklenk, a philosophy professor at Queen's University.

Schuklenk has been following the case with personal and professional interest since Nadya Suleman gave birth to the octuplets two weeks ago, months after visiting a fertility clinic telling the doctors there that she wanted to have more children.

"This is one where all the ethicists, for a change, seem to all agree."

Schuklenk says that whatever Suleman's motivation is in wanting more children, her doctors had a duty to refuse her request, calling it "irresponsible" for them to simply comply with her wishes.

"Somebody needs to slap these people," Schuklenk says. "A statutory body should seriously look into the conduct of the health care professionals in that clinic."

Some of the doctors' colleagues would seem to agree.

"This makes our jaws drop," Dr. Mary Hinckley, a physician with the Reproductive Science Center in San Francisco, told a local paper. "It violated all of our standards here in the United States."

A 2005 study by Toronto's Joint Centre for Bioethics ranked doctor-patient disputes over treatment plans the top ethical challenge facing medicine today, ranking above such issues as waiting lists and doctor shortages.

"Thirty years ago, the issue was when patients could say no (to a doctor). Now it's when can a doctor so no (to a patient)," says Jonathan Breslin, co-author of the report.

Such questions are not limited to fertility issues, but also to cancer or HIV treatments, the continued use of life supports, cosmetic surgery, what medicines to prescribe (or not prescribe), participation in other therapies, and more, the study says.

Last month, a study in the American Journal of Bioethics examined what might be the most extreme example of patients seeking medical care they don't need: people demanding that a perfectly healthy arm or a leg be amputated.

People with body integrity identity disorder become convinced that an appendage such as an arm or a leg should not be there, and demand that it be amputated to fit their image of themselves. Such a person believes he or she was meant to be, say, a one-legged person, but was born with two legs by mistake.

For those with the disorder, it can be very frustrating. If thwarted, they will sometimes injure themselves to force an amputation.

While the study's author, German ethicist Sabine Müller, comes out against cutting off healthy limbs, there is no consensus on the issue.

Schuklenk counts himself among those sympathetic to patients who, despite having two arms or legs, feel they really should have only one.

"That falls into the same category as transsexuals and sex change operations," says Schuklenk, adding that a generation ago, the idea of a man trapped in a woman's body was not as widely accepted as today.

Schuklenk is not aware, however, of a similar disorder driving women to have multiple children to fulfil their personal self-image.

And if Suleman did feel a need to have a lot of children, he points out, "she already had six kids."

Schuklenk is glad the paternalistic days when doctors had almost complete say about treatments are largely a thing of the past.

Patients have much of value to add to their treatment plans, he says. "Patients often know more about their conditions than their doctors."

That's because patients often have time to research their ailments in greater depth than a general practitioner who treats a variety of patients with myriad complaints.

Books, newspapers, the Internet and even television commercials have educated patients about their health, making them more informed when they go to the doctor.

But that can also lead to a greater sense of entitlement, Schuklenk says, and a growing tendency to treat doctors like any other service provider – there to take orders and not ask questions.

"They see something on TV and think, `That sounds like me.' So they go to the doctor and demand a prescription," he says.

Schuklenk fears that's what might have happened in California. The doctors, he says, had a responsibility to set aside benefits they might receive – fees and fame – and confirm that Suleman could afford to raise the children and had the emotional strength and family support to do so.

"In her case, the answer each time would be no, no, no," he says.

Breslin says the doctor-patient relationship also can often be the place where issues such as limited health care resources or long waiting lists are played out, complicating the relationship.

Shawn Winsor, a bioethicist at the Joint Centre for Bioethics, uses dispute resolution strategies much like those used in legal circles to navigate the often tricky waters of the doctor-patient relationship.

"It's about helping them through the process," he says. "In the end, the doctor-patient relationship is a collaborative one."