Thesis

Advance directives & advance care planning among elective surgery patients - ICU issues

GIGON, Fabienne

Abstract

Les directives anticipées sont apparues quelques décennies en arrière pour permettre le respect de l'autonomie du patient. Elles lui permettent d'exprimer à l'avance ses volontés en termes de soins et de prise en charge médicale. Elles seront utilisées dans l'éventualité que son état de conscience soit altéré, cas de figure fréquent aux Soins intensifs. Alors qu'elles semblent attractives pour les citoyens d'un point de vue théorique, elles sont peu connues et répandues dans la pratique clinique. Ce travail tente d'en investiguer les raisons, en posant tout d'abord un cadre théorique à travers un éclairage philosophique, bioéthique, juridique et médical, puis en décrivant la situation en Suisse, à Genève et aux Hôpitaux Universitaire de Genève, pour enfin aboutir à un projet d'étude clinique auprès de médecins, de patients subissant une chirurgie cardiovasculaire majeure ainsi que de leur proche. L'étude empirique concernant les médecins est présentée avant de conclure.

Reference

GIGON, Fabienne. Advance directives & advance care planning among elective surgery patients - ICU issues. Thèse de doctorat : Univ. Genève, 2014, no. Sc. BioMéd. 1

URN : urn:nbn:ch:unige-397891 DOI : 10.13097/archive-ouverte/unige:39789

Available at: http://archive-ouverte.unige.ch/unige:39789

Disclaimer: layout of this document may differ from the published version.

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Faculté de Médecine Institut Ethique Histoire Humanités Département d‟Anesthésiologie, Pharmacologie et soins intensifs Soins intensifs

Thèse préparée sous la direction de la Pre Bara RICOU, MD et la codirection de Dr Bernard BAERTSCHI, PhD

English title: ‘Advance directives & advance care planning among elective surgery patients - ICU issues’

Titre en français : ‘Directives anticipées & projet anticipé de soins chez des patients de chirurgie élective - Problématique pour les Soins intensifs’

Thèse Présentée à la Faculté de Médecine de l‟Université de Genève pour obtenir le grade de Docteur en Sciences Biomédicales – Mention Bioéthique par

Fabienne GIGON de Goumois (JU)

Thèse N°1

GENEVE 2014 1

TABLE OF CONTENTS

Résumés en français (version courte et longue)………………………………………………….. 4

Acknowledgements………………………………………………………………………………….. 7

Summary…………………………………………………………………………………………… 8 1. Introduction……………………………………………………………………………………... 9 Definitions………………………………………………………………………………………… 9 Objectives of the thesis…………………………………………………………………………….10

2. Theoretical context about advance care planning…………………………………………….. 12 2.1 Philosophy A brief history of philosophy and ethics……………………………………………………. 12 Autonomy……………………………………………………………………………………. 14 Death and life ending………………………………………………………………………… 15 Advance care planning and philosophy……………………………………………………… 16 2.2 A brief history of ethics of care……………………………………………………………… 18 Change of paradigm - from medical paternalism to shared decision making……………….. 19 Justice and futility……………………………………………………………………………. 20 Advance care planning and bioethics………………………………………………………... 21 2.3 Law

Brief history of first legislations on health care and research scandals……………………… 22 and competence…………………………………………………………... 23 Sleeping beauties in the US and the – a brief history of advance directives…….. 23 Withdrawal (unconscious patients)...…….………………………………………….. 23 Withdrawal (conscious patients)…………….………………………………………. 24 Withholding………………………………...……………………………………….. 25 (Active) ...... ………………………………………. 25 Assisted-suicide………………………….………………………………………….. 25 Laws on Advance Care Planning…………………………………………………………….. 26 Laws in the USA and in western countries………………………………………….. 26 Switzerland – modification of the Civil Code………………………………………. 27 Advance care planning and law ……………………………………………………………... 28

3. Medical context…………………………………………………………………………………… 29 3.1 DNR, NTBR, DNAR and CPR orders………………………………………………………... 29 3.2 Palliative care………………………………………………………………………………….. 30 3.3 Intensive care, outcome, limitation of care and competence……………………………...… 31 3.4 Challenges in surrogate decision-making and concordance with patient’s wishes……….. 32

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3.5 Barriers and facilitators for advance directives…………………………………………….. 32 The SUPPORT study………………………………………………………………………… 32 In the society…………………………………………………………………………………. 33 For patients…………………………………………………………………………………... 33 For physicians…………………………………………………………………………..…… 33 Consistency over time and anticipation……………………………………………………… 33

4. Present situation of advance care planning in Switzerland and Geneva……………………… 34 4.1 Politics of health care regarding advance care planning……………………………………. 34 4.2 Promotion of advance directives in Switzerland and Geneva in particular……………….. 35 4.3 Practice around Advance Care Planning ensuing from the Swiss federal law……………. 36 4.4 The University Hospitals of Geneva and the practice around advance care planning……. 36 4.5 Practice around advance care planning in the HUG intensive care unit…………………... 38

5. Study context and the Advance Care Planning project……………………………………….. 39 5.1 Major cardiovascular surgery and periopererative setting………………………………… 39 5.2 The patients’, the relatives’ and the physicians’ point of view…………………………...… 39 Project design………………………………………………………………………………… 39 Objectives……………………………………………………………………………………. 40 5.3 Advance care planning project……………………………………………………………….. 40 Protocol 1 – patients………………………………………………………………….……… 40 Protocol 2 – relatives………………………………………………………………………… 45

6. Results of the study of advance directives and physicians…………………………………….. 46 Physicians and advance directives – Submitted article…………………………………………... 46

7. Conclusions……………………………………………………………………………………….. 59

8. Appendices…………………………………………………………………………………………62 Abbreviations……………………………………………………………………………………….. 62 Appendix 1 – Brief historic of ethics founding texts for research and law………………………… 63 Appendix 2 – Extracts of international advance directives rules…………………………………… 64 Appendix 3 – Swiss law [partly in French]………………………..……………………………….. 65 Appendix 4 – About the new Swiss federal law on tutelage [partly in French]…………………..... 71 Appendix 5 – National and international associations of interest related to health………………… 72 Appendix 6 – Palliative care unit diagram about advance directives [in French].…………………. 72 Appendix 7 – Information on advance care planning in the HUG [partly in French]..…………….. 73 Appendix 8 – Study physicians‟ questionnaire [in French].………………………………………... 75

9. References…………………………………………………………………………………………. 82

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Résumé en français – Version courte

Les directives anticipées sont apparues quelques décennies en arrière pour permettre le respect de l‟autonomie du patient. Elles lui permettent d‟exprimer à l‟avance ses volontés en termes de soins et de prise en charge médicale. Elles seront utilisées dans l‟éventualité que son état de conscience soit altéré, cas de figure fréquent aux Soins intensifs. Alors qu‟elles semblent attractives pour les citoyens d‟un point de vue théorique, elles sont peu connues et répandues dans la pratique clinique. Ce travail tente d‟en investiguer les raisons, en posant tout d‟abord un cadre théorique à travers un éclairage philosophique, bioéthique, juridique et médical, puis en décrivant la situation en Suisse, à Genève et aux Hôpitaux Universitaire de Genève, pour enfin aboutir à un projet d‟étude clinique auprès de médecins, de patients subissant une chirurgie cardiovasculaire majeure ainsi que de leur proche. L‟étude empirique concernant les médecins est présentée avant de conclure.

Nb mots=147 Résumé en français – Version longue

« Directives anticipées & projet anticipé de soins chez des patients de chirurgie élective - Problématique pour les Soins intensifs »

Les directives anticipées sont apparues quelques décennies en arrière pour permettre le respect de l‟autonomie du patient. Elles lui permettent d‟exprimer à l‟avance ses volontés en termes de soins et de prise en charge médicale. Elles seront utilisées dans l‟éventualité que son état de conscience soit altéré, cas de figure fréquent aux Soins intensifs. Alors qu‟elles semblent attractives pour les citoyens d‟un point de vue théorique, elles sont peu connues et répandues dans la pratique clinique. Ce travail tente d‟en investiguer les raisons, en posant tout d‟abord un cadre théorique à travers un éclairage philosophique, bioéthique, juridique et médical, puis en décrivant la situation en Suisse, à Genève et aux Hôpitaux Universitaire de Genève (HUG), pour enfin aboutir à un projet d‟étude clinique auprès de médecins, de patients subissant une chirurgie cardiovasculaire majeure ainsi que de leur proche. L‟étude empirique concernant les médecins est présentée avant de conclure.

L‟éthique des soins se développe déjà dans l‟Antiquité, notamment grâce à la philosophie et la religion. De cette époque, nous avons hérité le Serment d‟Hippocrate (Vème siècle av. J.-C.). Le terme “Ethique médicale” apparaît au 19ème siècle et s'inscrit dans une mouvance paternaliste (soit le médecin qui décide), positiviste (soit les progrès de la science résoudront tous les problèmes, également de religion et de métaphysique) et utilitariste (on veut maximiser les soins pour tous). Au milieu du 20ème siècle, le mot “Bioéthique” fait son apparition et ancre des principes clés tels que le respect de l‟autonomie, la bienfaisance, la non-malfaisance et la justice distributive (allocation des ressources). Les nouvelles (bio)technologies n‟ont cesse d‟alimenter les débats bioéthiques, que ce soit au sujet de cellules souches ou encore de l‟amélioration de l‟être humain.

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Les directives anticipées sont apparues en réponse au changement de paradigme en éthique médicale dans la seconde moitié du 20ème siècle, où l‟on passe d‟un modèle paternaliste à une autonomie totale du patient (tendance libérale). A l‟heure actuelle, un équilibre est recherché afin d‟élaborer une décision partagée entre patients et médecins. Par ailleurs, l‟augmentation dès le 19ème siècle de la technicité médicale (la “toute puissance médicale”) fait peur, notamment suite à plusieurs cas médiatiques mobilisant l‟opinion publique (les premiers venant des USA, les “sleeping beauties”). Ainsi, prenons l‟exemple de Nancy Cruzan, jeune femme de 25 ans dans un coma végétatif suite à un accident de voiture en 1983 et nourrie par sonde, dont les médecins et parents se battent devant les tribunaux pour arrêter la nutrition artificielle pour les premiers, et la poursuivre pour les seconds. La décision finale de la Cour Suprême des Etats-Unis – autorisant l‟arrêt de la nutrition en s‟appuyant sur la volonté présumée de la jeune femme – est à la base de la première loi nationale instituant les directives anticipées (le “Patient Self-Determination Act”). Sous nos latitudes, certains cas sont encore d‟une actualité brûlante (tels le cas de en France). Les directives anticipées répondent donc à une double exigence : le respect de l‟autonomie d‟un côté, le principe de bienfaisance de l‟autre.

Plusieurs écueils surviennent néanmoins lors de la mise en pratique des directives anticipées. En effet, elles demandent une grande capacité d‟anticipation et d‟abstraction de leur auteur, puisqu‟il s‟agit d‟envisager des états hypothétiques ; un vrai défi pour une personne externe au milieu médical. Par ailleurs, il est important d‟y clarifier des notions telles que l‟ “acharnement thérapeutique”, car leur signification peut varier grandement en fonction de l‟individu. Nommerait-on acharnement thérapeutique ou continuation de soins, par exemple, l‟administration d‟antibiotiques pour guérir une infection alors que l‟on est dans un profond coma ? Pour pouvoir être utilisées, les directives anticipées devraient être tant que ce peut exemptes d‟ambiguïtés. Expliciter ses valeurs de vie, de qualité de vie, peut également s‟avérer utile. Un autre obstacle aux directives anticipées réside dans la possibilité d‟un changement d‟avis. Pour y pallier, les directives doivent régulièrement être actualisées, soit revisitées et validées. Enfin, leur lieu de dépôt pose actuellement problème, car il n‟existe pour l‟heure en Suisse aucun registre national, et leur accessibilité est primordiale afin qu‟elles puissent être utilisées, notamment dans les situations urgentes. La valeur contraignante versus indicative des directives anticipées est donnée par les lois nationales. Actuellement, la majorité des pays occidentaux possèdent une législation à leur sujet. En Suisse, la modification du droit de tutelle du Code Civil de janvier 2013 (articles 370 et suivants) leur donne force valeur contraignante, pour autant qu‟aucune indication ne mette en doute qu‟elles expriment bel et bien la volonté du patient.

Le projet présenté dans cette thèse, soutenu par le FNRS, pose le contexte de patients subissant une chirurgie cardiovasculaire majeure (valvulaire, coronarienne ou aortique) séjournant aux Soins intensifs. Ces patients sont temporairement incapables de discernement et d‟importantes décisions

5 doivent parfois être prises. Leurs proches sont fréquemment indisponibles ou ne connaissent souvent pas les volontés des patients. Seuls les patients électifs étaient inclus, le choix de cette population ayant permis de poser l‟hypothèse que de tels patients auraient plus de chance d‟avoir discuté de directives anticipées avant l‟opération, étant donné que le cœur est, dans l‟opinion publique, l‟organe vital par excellence. Les objectifs du projet étaient d‟obtenir une vision des directives anticipées selon trois angles, représentant trois partenaires de soins : les patients, les proches et les médecins. Les deux premiers ont été interviewés, les derniers ont reçu un questionnaire auquel nous demandions de répondre. C‟est sur cet angle du projet que se concentre l‟étude rapportée. En plus de la prévalence des directives anticipées dans cette population (18/156, 12%), elle relate les réponses des médecins en termes d‟utilité des directives anticipées (utiles : 138/162, 85%), de leur souhait d‟aider ou non des patients à en rédiger (oui : 124/161, 77%), ainsi que les raisons associées à ce choix (pour : respecter l‟autonomie et rassurer le patient ; contre : peur, appréhension, manque de savoir faire). Outre un approfondissement des résultats trouvés auprès des médecins, les suites du projet permettront une comparaison des réponses de ces derniers avec celles des patients et de leurs proches. Cette analyse est attendue avec impatience afin d‟affiner les possibilités d‟action interdisciplinaire permettant une amélioration des soins aux patients et à leur famille, ainsi qu‟une meilleure aisance des médecins. Un point d‟attention particulier sera porté aux raisons pour lesquelles la majorité semble trouver les directives anticipées utiles, mais pas pour eux-mêmes ni pour leurs proches.

Ainsi, le présent travail de thèse permet d‟approcher la thématique multifactorielle et parfois controversée des directives anticipées dans toute sa complexité. Certes le sujet est sensible, car touchant à des étapes clé de la vie d‟un homme (la maladie, la fin de vie,...). Nombre de lois sont implémentées, et le concept théorique est parfaitement valable, cohérent, et plébiscité par de nombreux auteurs. Cependant, la prévalence des directives anticipées reste basse, et la mise en pratique difficile en raison des points évoqués. L‟on conclut sur la nécessité d‟informer et d‟éduquer médecins et public. Des compétences spécifiques doivent être acquises par les uns, de bonnes notions de base sur ce qu‟est la médecine de nos jours par les autres. Le bienfait d‟une meilleure communication entre partenaires de soins est également évoqué. En marge du personnel médical, des personnes associées aux soins, voire extérieures, pourraient soutenir les directives anticipées (infirmiers, équipe de soins palliatifs mobile, assistants sociaux, etc.). Actuellement, il ne s‟agit pas tant de se concentrer sur la rédaction d‟un document formel (sens stricte proposé par les lois), mais sur les discussions qui pourraient mener à un tel document. Beaucoup de préjugés devraient être éclaircis et levés, tels que la “peur de déranger l‟autre” ainsi que le côté “tabou” de la fin de vie.

En conclusion, les directives anticipées sont pour l‟heure le meilleur outil pour respecter l‟autonomie du patient. Restent à définir les modalités de communication devant les entourer et d‟utilisation afin de les rendre réellement efficaces. Ainsi, des décisions ajustées aux volontés du patient pourront être prises en clinique.

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„ Si toute vie va inévitablement vers sa fin, nous devons, durant la nôtre, la colorier avec nos couleurs d’amour et d’espoir.‟ M. Chagall (1887-1985)

Acknowledgements

I would like to express my gratitude to my thesis director, Prof. B. Ricou MD, who helped and supervised the study from the start and allow me the chance of producing this thesis. She always gave me sensible and wise advices and formative corrections in writing reports. I appreciate her vast knowledge and skill in many areas and her benevolent assistance. I would also like to thank my thesis co-director Dr B. Baertschi phD, for his gentle help and patience, his valuable remarks and availability, and the rapidity of his responses. A special thanks goes out to Dr. P. Merlani MD, member of the study group who introduce me to statistics, study design and taught me so many things that I can‟t count them all. I must also acknowledge Mrs. F. Scherer for her contributions in the study, as well as her kindness and support. Warm-hearted thanks to Mrs R. Juncker-Kumar for her assistance regarding English, as well as to Mr J-M. Boucheteau for his appreciated availability and his precious English corrections in the present manuscript. Finally, to my friends inside or outside the hospital and especially to my family, to their inexhaustible source of strength and love.

The life, 1964, Marc Chagall (1887-1985)

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‘Birth and death are not two different states, but they are different aspects of the same state. There is as little reason to deplore the one as there is to be pleased over the other.’ Mahatma Gandhi (1869-1948)

Summary International interest for Advance Directives (AD) has emerged for a few decades based on the ethical principle of the patient autonomy and self-determination. The USA has already had a long practice in the clinical arena and a lawful anchoring since 1991. In Europe, and especially in Switzerland, the extent of the concept is not known. Most cantons included AD in their legislation, such as Geneva since 1996, and a federal law has just been enacted. AD are a description of one's future preferences for medical treatment made in anticipation of a time when one may become incompetent. Patients may choose to designate a health care surrogate decision maker (HCS) – a trusted person who can speak on their behalf. The literature on these topics (advance care planning) reports their importance, but also their complexity for health and public policies. The overall low percentages of people who possess AD and/or named their HCS demonstrate the difficulties to implement such tools in practice. The project conducted in the University Hospitals of Geneva (HUG) with patients and their family and physicians of Geneva canton has the objective to investigate advanced care planning and the reasons leading or not patients to write AD or designate a HCS in the context of scheduled major surgery. It also aims at verifying whether undergoing major surgery may influence the attitude of patients, at assessing the incidence of AD/HCS in this population and how frequently people without AD/HCS are willing to enter the process. The interest and willingness of the physicians to help patients to write their AD or designate a HCS are investigated in parallel. To better understand the reasons why AD and HCS designation are difficult to implement in the clinical arena, while the theoretical concepts are attractive, the reflection is deepened through the four underlying fields that are philosophy, bioethics, law and medicine.

LeMonde.fr

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„Mourir n’est moche que quand ça prend longtemps et que ça fait si mal qu’on en est humilié.’ E. Hemingway (1889-1961)

1. Introduction The present work aims at providing the context surrounding a clinical project conducted in the University Hospitals of Geneva (HUG), Switzerland about advance care planning. It is written so as to help the readers from all backgrounds understand the complexity of the topic, what the medical arena consists of and the current situation in Switzerland, in particular in Geneva. First, some definitions and issues are given. Then, the precise objectives are detailed.

Advance directives (AD) define one's future preferences for medical treatment, made in anticipation of a time when one may not be able to express their preferences because of serious illness or injury (e.g. neurodegenerative illnesses, coma). AD can come as a person and/or a document. Indeed, one may designate a health care surrogate decision maker (HCS), who is a person who speaks on behalf of the patient and thus takes decisions. Alternatively or in addition, a directive (a living will) is a document that may specify certain situations, such as a persistent vegetative state, or certain treatments, such as a feeding tube, that the patients would refuse or would like to be handled in a particular way, according to their wishes. Patients may express their treatments wishes or designate a HCS orally to the family or to their physician. AD can be formalized as a written legal document1,2.

Scientists worldwide have been interested in AD for several decades. The latter are based on the ethical principle of patient autonomy and self-determination. The United States of America has a long history of AD. We lack information on how this concept is known to the public and in many other countries, including Switzerland. Literature describes the implementation of AD as important, but also complex for health and public policies. The principle of autonomy states that patients have the right to decide on their own care preferences. In case when patients are incompetent, a relative or next-of-kin is allowed to express their wishes on behalf of the patients. It is difficult to respect the patient‟s autonomy depending on the patient‟s disease (e.g. neurogenerative illness), the nature of invasive treatments (e.g. a complication during or after a surgery) and the time at disposal (emergency setting). Organisational and communication barriers exist3. AD have been proposed for many years as a possible response in these particular situations.

Intensive care units (ICU) are at the heart of many ethical debates because of their high level of technology and the high percentage of the total costs in a hospital they stand for5. The number of admission demands for terminally ill patients into intensive care units keeps increasing4,6 while decisions of limitation or of palliative care attempt to avoid medical futility7-10 and the acute care provided with sophisticated and onerous means in order to ensure the survival of critically ill patients do not always lead to a satisfactory quality of survival. In this context, increasing the knowledge of the patients' wishes regarding resuscitation, aggressive life-sustaining treatments and their future quality of life is of utmost importance. Although the concept of AD sounds attractive in order to address these questions, the reality shows that very few

9 incompetent patients admitted to hospital own written AD. The designation of a HCS seems more promising than the formal living will for transmitting the expressed wishes of the patients. However, only few patients actually designate a surrogate. This is why exploring the factors influencing the writing of advance directives in order to acknowledge the ones favouring it and the ones that may hinder their development is of importance to understand how they might be successfully implemented.

Advance care planning is a far more extensive notion than advance directives are. Indeed, depending on the definition, it may include resuscitation orders4-6, palliative and end-of-life care7,8, limitation of care, underlying laws, etc.9. End-of-life care relates to assisted-suicide, euthanasia, medical futility, etc. To take into account the huge complexity of this concept, one needs to acknowledge it is located in the middle of various disciplines, the different contexts of which had to be investigated to help the understanding. Bioethics provides help to care for human beings in an ethic way and thus tries to clarify and organize how to handle moral norms and values. These latter cannot be well understood without exploring some philosophical contributions, since philosophy has always underpinned all thoughts about human beings and still further analyses in a logic way all new human challenges. Law proposes on its side conceptual solutions to social problems about decision-making and capacity. Finally, medicine is on the front line and is highly interested in the pragmatic running of such a concept. Interdisciplinary approaches are vital to raise awareness of the issues in the respective disciplines and help find out how to progress in the concrete implementation in the practice of these theoretical concepts. End- of-life issues are of paramount importance at an individual level since they deal with every sentient being, but also because it is where the private sphere overlaps the political arena, since care at end-of-life is given within social constructions such as hospitals, insurance, etc. This is why a good understanding of the Swiss context regarding advance care planning is essential to practical AD implementation in this country.

The objective of the following pages is to go further into the concept of advance care planning from the angles of philosophy, bioethics, law and medicine and thus help better understand the results of the clinical study conducted. Since some key notions such as autonomy, dignity or consent are linked to more than one field, it was necessary to make choices as to which section they are elaborated in. Also, a historical approach is privileged. We mean to proceed through philosophy with a brief history of how ethics developed. The question of autonomy will be addressed, as well as how philosophy helps understand the reality of death and what ending one's life is from a philosophical standpoint, whether by committing suicide or via euthanasia. This section will end on some philosophical thoughts about advance care planning. Then, a brief history of ethics of care will be given to introduce bioethics and its key principles. The concept of dignity, the change in the paradigm of the physician-patient relationship and the issues about justice and futility will be shortly discussed. Again, some bioethics perspectives on advance care planning will be given. Finally, a brief history of why the first legislations on health care were developed will be set. Informed consent and competence will be addressed as key legal components of the medical practice, and some famous case of 'sleeping beauties', but also of care withdrawal and withholding, as well as euthanasia and assisted-suicide will be shortly explained, so as to understand the changes of mind related to end-of-life issues and the

10 ensuing legislations. Some information on the law in the USA and western counties, as well as in Switzerland will follow, before getting into some considerations on law and advance care planning. Then, the medical context surrounding advance care planning will be explored with a brief history on resuscitation orders, palliative care and intensive care, as well as specific end-of-life issues in ICU. The clinical study‟s setting being the University Hospitals of Geneva, the situation of Switzerland, Geneva and its university hospitals will be described and will illustrate the developed concerns. This approach is a requisite to lay the context of the clinical study conducted. The study protocol and the results will be reported. Finally, a conclusion will report some solutions considered to help implementation of AD in the medical practice and will bring together some ideas.

LeMondre.fr

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2. Theoretical context

„The difficulty, my friends, is not in avoiding death, but in avoiding unrighteousness; for that runs faster than death.‟ Socrates (c.469-399) 2.1 Philosophy10-16 The goal of this overview is to understand which philosophic theories underlie current key bioethics concepts and medical practice such as the respect of autonomy and limitation of care. It will lead to a philosophical approach to advance care planning.

A Brief history of philosophy and ethics A recent definition of philosophy states that „philosophy is rational critical thinking, of a more or less systematic kind about the general nature of the world (metaphysics or theory of existence), the justification of belief (epistemology or theory of knowledge), and the conduct of life (ethics or theory of value). Each of the three elements in this list has a non-philosophical counterpart, from which it is distinguished by its explicitly rational and critical way of proceeding and by its systematic nature. […] Everyone governs their conduct by directing it to desired or valued ends. Ethics, or moral philosophy, in its most inclusive sense, seeks to articulate, in rationally systematic form, the rules or principles involved.‟17.

Traditionally, philosophy (from Greek philosophia, „love of wisdom‟) deals with three fundamental sciences: logic (laws of reason), physics (laws of nature) and ethics (laws of human behaviour). Moral theories have occupied the spirits consistently, certainly because voluntariness of human beings is frail and needs some rules to be reinforced, and because intuitions need to face intense scrutiny since they are not always reliable. Socrates (Greece, c.469-399), the awakener of soul via maieutics (the art of giving birth to ideas), embraced the idea that there is a dualism in human beings: instincts, feelings and opinions on one side, reason on the other. He believed that the aftermath of reason resulted in the human ability to make abstraction from their particular thoughts to consider a universal point of view, which was the way of being virtuous11. Ethics (from Greek ethos) and morality (from Latin mors, mores) originally means the same, i.e. the way of behaving – behaving right or wrong. The definition of behaving right has given mankind a great deal to think about. Two main theories lead the reflections.

E. Kant (German, 1724-1804) is the cornerstone of deontologism. This theory is ruled by the „categorical imperative‟, i.e. actions are based on a universal law (theory of actions), and not on consequences (maxim of a parallel philosophical trend, utilitarism, discussed in the next paragraph). Priority is given to rightfulness, so rules must be generalized and fit all possible cases (to avoid contradictions), and direct the will. In terms of actions involving human beings, the other humans must always be seen as an end, and never as a means. For instance, a patient who needs a rare operation should be seen as a whole human being, capable of reasoning and of feelings, worth of respect (an end in himself) by the surgeon and not as a good opportunity to practice (the patient would thus be seen as an object, a means). The source of morality is the rationality of humans. Thus, human beings must comply with obligations, or duties. Rationality is

12 based on autonomy – the self-legislating right of each person. This goes beyond any outside or inner influence (heteronomy), even if these are often considered as morally positive (e.g. compassion,…). Regarding medicine, deontologism helps find rules that are absolute/universal. It is aligned with Human rights and human dignity (e.g. respect of autonomy, no human instrumentalization,…), and its duty for trustworthiness supports the patient- physician relationship (cf. subsequent chapters).

In parallel to deontologism, classic utilitarism was developed mainly from two theories by two English philosophers, J. Bentham (1748-1832) and J.S. Mill (1806-1873). Utilitarism is ruled by the principle of utility, i.e. actions have to be based on consequences. Consequences look for the greatest happiness for the greatest number of people, as would be defined by a strictly impartial and disinterested „benevolent spectator‟. Priority is given to the greatest good of the whole. „Act utilitarism‟ is to be distinguished from „rule utilitarism‟. In „act utilitarism‟, each individual act has to foster happiness (maximize utility). In „rule utilitarism‟, the action is right if it refers to a rule issued from the theory of utility, i.e. a set of rules that maximize utility, both individually and collectively. With regard to medicine, utilitarism calls for impartiality and „spontaneous human intuitions‟ (e.g. the value of pleasure, the banishment of suffering,…), which are very often in line with utilitarist views. What is more, the principle of beneficence is generalized (individuals to society, the „greater-good-for-the- greater-number‟ argument).

The ideas developed by W.D. Ross (Scottish deontologist, 1877-1971) can be seen as an illustration of steps on the way to principlism. He developed the deontological form of intuitionism called pluralist ethics and believed that actions had two moral properties: righteousness and goodness. He divided duties into two kinds: „prima facie duties‟, i.e. the duty to be used first, ranging for him in fidelity, reparation, gratitude, non-maleficence, justice, beneficence, and self-improvement. – and „absolute duties‟, i.e. the real duty in any situation. Despite the individual need to reason and understand a situation, intuitions should serve as a guide and permit to work out the right decision if prima facie duties conflict. According to S. Kagan (contemporary American philosopher), the terminology prima facie is misleading – pro tanto should have been used, because even though it has a genuine weight, it allows being outweighed by other duties.

Some subsequent philosophers combine deontologism and utilitarism and call for looking at the consequences of our actions but also at the reasons underlying them. Indeed, the complexity of life makes it hard, if not impossible to use a unique principle. Facing the pluralism of moral theories, a new philosophical trend develops: principlism. It relies on principles to be applied prima facie and leads to the classic theory of contemporary bioethics (cf. section 2.2 p.15). Even if not all philosophers agree on these definitions, a way of seeing normative ethics would be as the science of moral norms and of their validation through critical approach. Morality can be seen as a set of norms valid through consensus in a social institution and can be universal (e.g. human rights) or restrained to a community (e.g. religious morality). Professional ethics, on its side, has a broader definition than just ethics, since it encompasses the personal, organizational and corporate standards of behaviour expected of professionals working in acknowledged

13 professions, such as law or medicine. It is a set of rules where specialized knowledge and skills acquired during studies ruled by society are exercised and where there exists a significant leeway for self-regulation.

Autonomy16 Far away from the „libertarian‟ common meaning in our contemporary societies, autonomy – from Greek autos (self) and nomos (rule, governance, or law) – applied originally to society before expanding to individuals. Socrate viewed autonomy as a way to go from personal to universal thoughts by reasoning11. The enkrateia (from Greek), or self-governance, allows to be free by refusing any authority, whether external or internal (heteronomy). Even a former own thought can be withdrawn or revoked anytime. As expressed previously, E. Kant defined much later the autonomy as the consequence of human rationality. People have the right to self-determination, i.e. to set their own laws and to follow them. Making choices and controlling personal goals is called agency. J.S. Mill thought that individual liberty – independence from external influences – should be guaranteed as far as it doesn‟t restrain others‟ rights. Since the definition of happiness or of a good life may differ from individual to individual, each individual is their own expert on their meanings. The French philosopher C. Castoriadis (1922-1997) claimed that heteronomy and autonomy had to exist together, noting that all societies needed to create their own laws, traditions and behavioural morals. Thus, an autonomous society is one in which citizens are aware of these constructions and explicitly think of them reflexively. Competency (legal terminology for agency) and informed consent are corollaries to autonomy (cf. section 2.3 p.20).

The question of the identity of an agent underpins the concept of autonomy. Definition of „one-self‟, the self-consciousness, is also a philosophical field of investigation. The ideal ego of E. Kant – abstract mental representation that dominates material reality – has been criticized and many philosophers have given nuances to the concept. The French philosopher P. Ricoeur (1913-2005) distinguishes two concepts of identity. The „ipse-identity‟ (ipse from Latin „self‟) – i.e. selfhood – is the intrinsic individual identity, the inner core of who one is. The „idem-identity‟ (idem from Latin „the same‟) – i.e. sameness – is the character‟s identity during the individual‟s life, what makes the self identified as self, what the self consists of in time, so a more external identity.

Inter-disciplinary views on autonomy and identity take into account sociology and psychology. Thus, theories such as non-permanent reality – i.e. reality changing every moment – appear in social constructionism and in opposition to essentialism, theories which we won‟t go into further details.

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„To study philosophy is nothing but to prepare one’s self to die.’ Cicero (106-43), in Tusculan Disputations Book 1, 31

Death and life ending18,19 Even though immortality can be reached via procreation, one has to find a way to deal with the individual human finitude. Plato (Greek, 427-347), the follower of Socrates, developed the question of the roots of knowledge and saw it as a means to free ourselves from any subjectivity: the science of truth. He applies it to death. Humans have subjective views on death. Improving knowledge on it would let one free from any kind of fear. For Epicurus (Greek epicurean, 341-270) or Seneca (Spanish stoic, 4-65), death is neither a harm nor a benefit since it simply does not exist as far as it is beyond human experience. When we live, death is not here and we don‟t know what it is, and when we are dead, we don‟t exist anymore. Since we cannot experiment death, we imagine it. Fear of death is an irrational anticipation. Knowledge is therapeutic when it allows rectifying false judgments, i.e. judgments which don‟t rely on experience. Many centuries after these thoughts, huge progress has been made in the medical field and the age of dying has increased significantly, at least in western countries. However, we continue to die. The contemporary American philosopher T. Reagan sees death as the ultimate evil because it represents the ultimate loss. His colleague and compatriot F. Kamm views death as a harm which insults and deprives one‟s life from future. Another contemporary American philosopher, D. Callahan, calls for accepting that at some point, death is a „relatively acceptable event‟. He defines the „endpoint‟ to be between 70 to early 80 years of age, what was thought to be somehow arbitrary14. The question remains: when and how is it acceptable to die?

Medicalized death blurs frontiers between what kills, or who causes death. Ending someone‟s life has always been seen as a crime since it deprives the victim from its autonomy to choose life or death. In contrast, there are two kinds of reactions when one ends his own life (committing suicide). Negative reactions arise when it is seen as a rebellion against one‟s creator, a coward act, a flight (escape) of humans‟ duties (namely the ones due to the community), a lack of charity to oneself, or even an irrational contradictory act since it deprives oneself from the autonomy. Such were the opinions of famous philosophers ranging from Plato to Kant. Positive reactions see suicide as an act of liberty and autonomy, a way to reach an expected quality of life (a possible release) or an assertion of controlling one‟s life. These ways of thinking were retrieved from ancient Greeks such as Epictetus (Greek stoic, c.55-135) and were taken over by Montaigne (French skeptic, 1533-1592) and Hume (Scottish philosopher, 1711-1776), not to mention others. Sacrifices and martyrs have a special status and are not seen as suicides because they serve the noblest causes (e.g. God‟s honor, soul salvation or brothers‟ assistance). Likewise, euthanasia has been debated since Antiquity. If its first meaning directly derived from the Greek „good death‟ (eu „good‟ or „well‟ and thanatos „death‟), it was soon associated to death hastening, via poisons such as hemlock, or tricks such as removing quickly the pillow from a dying person. For instance, if Socrates and Plato would consider euthanasia only to release from painful or lengthy death, Seneca the Elder (Spanish rhetorician, 54-c.39), as well as the Stoics are known to have favoured the practice – allowing, in their views, a „fair and easy passage‟; while the Hippocratic school of thoughts clearly opposed it, as the Judeo-Christian tradition later did, arguing that it was contrary to the human instinct of survival or God‟s will. The 19th century saw the revolution of analgesia. Debates regarding the legitimacy of the

15 euthanasia practice renewed, nonetheless with unchanged whys and wherefores. Nowadays, euthanasia is defined diversely throughout the world and the huge progress in life-sustaining therapies allowed the emergence of nuances: euthanasia often divides into active – intentional invasive termination of life by somebody other than the person concerned at their request; and passive – when the intentional termination is reached withholding or withdrawing a treatment that would have kept the person alive. The distinction between killing (active euthanasia) and allow natural death or letting die (passive euthanasia) has been highly controversial, and if the latter is quite well accepted in western societies, the former is widely prohibited. However, dissident opinions exist, such as the one of the American philosopher J. Rachels (1941-2003, from the utilitarian tradition), who argues that the distinction so important in the law between killing and letting die has no rational basis. Indeed, if passive euthanasia is allowed, active euthanasia should be too, because it is more humane, and because there is no significant moral difference between killing and allowing death. Some key questions remain to be answered to deal with end-of-life issues: e.g. To whom does our life pertain? Who can decide? Is voluntary death a crime, and if so, why? In our society where pluralism of ideas is established, the autonomy principle claims that all individuals can decide for themselves to end their life freely.

„BERENGER, à Jean : C‟est une chose anormale de vivre. JEAN : Au contraire. Rien de plus naturel. La prévue : tout le monde vit. BERENGER : Les morts sont plus nombreux que les vivants. Leur nombre augmente. Les vivants sont rares.‟ E. Ionesco (1909-1994), Rhinocéros.

Advance Care Planning and Philosophy20 One of the options AD offer is about care refusal, or limitation of care. As it has just been seen, the morality of it depends on the philosophical frame one uses. Apart from morality, the rationality of care refusal is nowadays admitted. Even if that may shorten their life, a treatment refusal (supportive machine and nutrition included) by competent persons is the expression of their autonomous choice, maybe toward a less medicalized death. The same legitimacy is present when patients are incompetent, if they wished so at the time they were competent and expressed it in AD, or if their presumed wishes are confirmed that way by the relatives. Because of the self-determination principle, extension of the patient autonomy (cf. section 2.1 p.11), many philosophers would confer moral authority to AD. AD could be seen as a means to fight fear of death or of suffering (physical pain or moral distress). Dignity and personal integrity are at stake (cf. section 2.2 p.15). Both could have distinct meanings among people. For example, the American writer E. Hemingway (cf. quote p.6) saw a long time suffering as a humiliation, source of indignity, whereas others would argue that human life has a dignity in itself. Back to AD, the hesitations of some intellectuals demonstrate how complex the concept is. One slandered pitfall about AD consists of the possible influence on personal choices of external forces due to community norms (societal position or financial status). For instance, people with disabilities suffer from social devaluation, i.e. they are not well considered or even sometimes feared of „normal people‟. Thus, the latter would prefer limitation of care eventually leading to death rather than to imagine their life with disabilities21. Furthermore, our society tends to deny or lacks to consider the human capacity of psychological resilience, i.e. the ability to recover from or adjust to misfortune or change. A state that one thought wouldn‟t be worth living in and where one finally finds happiness is an example of resilience20. B.

16

Cyrulnik (1937- ), renowned French neuropsychiatrist and psychoanalyst, defines it as the capacity to develop well, to continue embracing the future despite destabilizing events, hard life conditions or sometimes severe traumas22. The question of whether a competent person can decide for an incompetent self future puts AD at stake. The first question would be of whether a competent person can make a decision for an incompetent one, which is fully medically and legally accepted, if needed, via the substitute judgment (on the latter, see section 3.4 p.29). Then why wouldn‟t it be allowed for a competent patient to make decisions in anticipation of a possible future as an incompetent patient? For some intellectuals, lack of the sufficient imagination facing hypothetical situations is a genuine obstacle to write AD. Patients can‟t be fully informed of their new state in advance. However, it is consistent to think that the persons who write AD are entirely interested in the subject and make all necessary efforts to imagine their medical future. Otherwise, even the designation of a health care HCS would be questionable because one could ask if the chosen HCS would be adequate for future decisions about the patient. Moreover, regarding end-of-life decisions, conflicts of interests often arise for HCS who want at the same time both their beloved to survive and to respect their wishes. Therefore, a former self deciding for a future self could lessen the occurrence of such conflicts21. Going one step further, another problem arises from the potentially disrupted psychological continuity. It is known as „the personal identity problem‟, i.e. the persons in the debilitating state are not the same persons as the ones who had decided on their own AD anymore23. This calls into question the moral authority of AD. In the 1980s already, the American philosopher R. Dworkin (1931-2013) developed the argument that fully competent persons have „critical interests‟ worth protecting over the ones they would express in future states of incompetence. He hence supported life as a single narrative, asserting psychological continuity. Dworkin faced the opposite opinion in the English philosopher D. Parfit, who defended the stance of psychological discontinuity and presented demented people or the ones experiencing brain injury as „new persons‟. For this reason, their precedent AD would be invalidated, or would at most be seen as a mere source of information20. The question is still a contemporary debate among philosophers21,23. D. Shaw argues that AD can have a validity and applicability (and thus a moral authority) if there is a temporary loss of capacity or a permanent loss of physical capacity. But when it comes to permanent loss of consciousness, such as in permanent vegetative state, he denies the necessary applicability criterion and thinks that the decisions have to be taken in terms of futility only (on futility, see section 2.2 p.17). Regarding permanent total loss of capacity such as in dementia, he thinks that the requirements of validity and applicability are not met24. E. Furberg presents a completely divergent position, for she concludes that the relevance of the personal identity problem depends entirely on what are the normative reasons the moral force of AD are based on. Looking for the reasons in favor of AD in the two normative frameworks of utilitarism (in relation to the theory of value) and rights theory (related to the right of self-determination and ownership of one‟s corpse), she sees no restriction in the valid moral authority of AD25.

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„I will thus distinguish between the monotheistic presumption (that there is a unique moral perspective) and the polytheistic presumption (that there are a number of equally defensible, but quite different, moral perspectives).‟ H.T. Jr Engelhardt (1941- )18

2.2 Bioethics12,14,15,26,27

This chapter proposes to look at the way ethics of care and bioethics developed, as well as how the physician-patient relationship evolved, in order to understand some current communication issues. Some key bioethics principles will be discussed with regard to end-of-life and decision-making.

A brief history of ethics of care Caring for others has always been a matter of charity, supported by both religion and philosophy; ethics of care developed alongside throughout Antiquity. The Hippocratic Oath (around -460 – -370 years BC) is famous for having anchored key principles such as beneficence, non-maleficence, abstention of abortion and euthanasia, as well as the respect of confidentiality and the patients‟ non-sexual exploitation12. Historically, it seems that this oath pertained to a small group of physicians with little influence on the medical practice. Nevertheless, reinterpreted by the Church to serve the Pope's view on abortion and euthanasia, it was then widely spread out28. The terminology „‟ appeared in the 19th century (credited to the Scottish physician T. Percival in 1803) and characterize a practice that was paternalistic (cf. p.16), positivist (philosophy of science based on the inexorability of scientific progress (over religion) in which the question „how‟ is replaced by the question „why‟) and utilitarian (form of consequentialism in which everything results of its utility and is morally good if it maximizes general utility, cf. section 2.1 p.10). At that time, public health was becoming a major concern for politics in conjunction with the development of scientific medicine. The latter was so fast in the 20th century that a new field of ethics conducted by physicians, philosophers and other intellectuals emerged: „Bioethics‟. Even though the term seems to have been invented first in 1927 by the German philosopher F. Jahr, it is generally attributed independently to two American physicians V.R. Potter and A. Hellegers, in 197129. Their compatriot philosophers T.L. Beauchamp and J.F. Childress, often seen as the founders of contemporary bioethics, defined in 1985 four cardinal principles applying to research in particular: respect of autonomy, beneficence, non-maleficence and justice – principles to be applied prima facie, i.e. they can be overstepped only if one of the other principles weighs more in the concrete situation (principlism). Very few solutions can be achieved without transgressing at least one of these principles30. Nowadays, the autonomy principle has the primacy over beneficence and non-maleficence because not to respect autonomy over the two latter would negate the very essence of a person – the „moral agent‟, and this would imply to treat them as a means, and not as an end – the object of Kant‟s claim (cf. section 2.1 p.9)18. Beneficence embeds beneficial care to be provided in the best interest of the person while balancing them with the associated potentially harmful risks; and non-maleficence is anchored in not harming or further harming, e.g. by providing futile treatments. The latter notion as well as the principle of justice are developed in section 2.2 p.17. Dignity and honesty are often added to the four principles of bioethics9. If honesty simply stands for non- misleading the patient, whether by retaining information or by not telling the truth, the concept of dignity is 18

far more intricate, even though it only appeared after WWII (cf. section 2.3 p.19). Indeed, dignity can be used as a moral bulwark to protect life, e.g. from cloning – or to call attention to the so-called vulnerable populations, e.g. the disabled, the dying, some particular subjects of research, etc. (cf. section 2.3 p.25). Related to the antique idea of mankind‟s superiority strongly supported by religions, it is rooted in the Kantian philosophy stated above, i.e. dignity is a consubstantial and inalienable value of human beings, which grants them personal integrity. Nevertheless, the contemporary use of dignity involves a relationship factor because it refers to the way one is looked at, or in other words, the respect that one owes to oneself and the others. Regarding patients‟ care, bioethics reformulates norms as actions using widely accepted ethical principles. New biotechnologies widen the field of bioethics beyond medicine (the so-called „life sciences‟)26. Nowadays more than ever, pluralism of beliefs, life styles, religions and philosophical affiliations are a reality and sometimes the source of new problems. A key solution to a problem cannot be found. However, by weighing the values involved and in an effort of conceptual clarity and coherent way of thinking justified by argumentation, bioethics helps find a compromise aiming at a peaceful coexistence of sometimes contrary convictions. Current bioethics encloses societal challenges and tries to conciliate both techno-scientific and humanist cultures.

„Medicine is to heal sometimes, to relieve often and to comfort always’ assigned to A. Paré (1510-1590)

Change of paradigm - from medical paternalism to shared decision making16,31-38,33,39 The history of medicine shows that of all principles of bioethics, beneficence was the rule until the beginning of the 20th century. As seen in the previous section, paternalism is the historic model of the physician-patient relationship. It relies on charity and knowledge of the practitioner who seeks for the welfare of the patients, vulnerable because of their illness. Much challenged by intellectuals since the 1960s, the main default of the paternalistic model is that it does not cope well with the principle of patient autonomy. Other models of physician-patient relationship emerged31 but were criticized too. Indeed, the informative model presents the physician solely as a medical expert who gives the needed information and lets the patients totally free of their choices. Its opponents think it somehow negates the physician-patient relationship by considering the patient as a consumer. The interpretative model is ambiguous since the physician endorses the role of a counselor in helping the patients to define their own values. As a matter of fact, the situation could easily deviate to the physicians imposing their views (even unintentionally). In the deliberative model, the physician persuades the patient of the most estimable values. This model induces the idea that the values of the patients might not be the best ones and the physician would let them know. Questions arise regarding the right of physicians to judge patients‟ values. It is also argued that the mandate of physicians does not include teaching values. Even though the paternalistic model has defaults, some people want to be handled within it, i.e. they want the physician decide for them. Also, if strong paternalism can be denied, one less directive way of exerting paternalism would not be considered as immoral (soft Paternalism Autonomy paternalism). Indeed, some „false desires‟, i.e. due to fear or carelessness (negligence) can sometimes be identified in patients. This temporary lack of competency due to fear

19 impedes them to choose correctly, i.e. in order to reach their most essential goals. Hence, physicians who know the real wishes of the patients could override a temporary and irrational desire of the patients – their medical knowledge and skills serving the patients‟ goals. Finally, paternalism in the sense of the physician making decisions by looking for the best interests of the patient (beneficence) has to be used in some particular contexts such as emergency, when the wishes of the patient are not known and the therapeutic windows are too short to look for them. Today, the idea of shared-decision making acknowledges the variety of patients in terms of needs and desires and physicians are advised to adapt their attitude to these needs and desires in the patient‟s particular context. In the attempt to do so, physicians have to perceive how much autonomy patients want and how much help they necessitate in decision-making. This patient-centered model encourages physicians to support patients in the decision-making process. When the patient is incompetent and/or the family plays a role in caring for the patient, it is called family-centered care model.

Justice and futility8,16,35,40-42 As social rights developed gradually throughout the 19th and 20th centuries, health care was not merely seen as a matter of charity, but also as a matter of justice. In the first context of research, justice was about equity in the risks / benefits distribution (those who bear the burdens of research should also receive its benefits). Distributive justice in health is a fair allocation of resources, and also ensues from the concept of equality of chances, as far as a good health is necessary to make choices in life. Two American philosophers founded the concept of justice related to health. First, J. Rawls (1921-2002) added to previous philosophical theories the issues of justice in social matters. Since all moral systems contain incoherences and uncertainties, Rawls proposed a reflexive equilibrium between intuitions and principles. He saw justice in terms of equity: a society is just if it respects the fundamental liberties of its citizens (and their participation in political decisions), if institutions achieve equality of opportunities and if inequalities are tolerated only to benefit deprived people. It was N. Daniels (1942- ) who focused Rawls‟ views on health43. By doing so, crucial questions arose, such as which choices should be individual and which collective, in the name of what, and who defines the nature of medical need, etc. Today‟s bioethics points out at resources‟ allocation and costs. Rationing of care would for example be the denial of an intervention to someone who would benefit from it because it is scarce or very expensive. This is not a primary practical principle with which physicians deal day-to-day. Indeed, such decisions are to be taken on a societal and governmental level. However, in pluralist societies, it is difficult to legitimate the choice of a criterion among the ones the theory of justice proposes: e.g. first-come - first served, free-market economics (who can pay the most), past or future contribution to society or social worth, who deserves the most, etc. This impedes the finding of a well-defined position. Physicians have to think daily in terms of utility in its common sense. It is an awkward concept, since one may easily incorporate their own judgments or values to it. Utility should be about bringing a benefit, not about judging if the benefit is worthwhile. Only an expert can predict the potential benefit, and physicians are expert in their specialty. Acknowledging this, futility is when the utility is seen as futile, the definition of which is hard to achieve, mostly because of a lack of consensus on this value-laden notion. In medicine,

20 it is admitted that a treatment is futile when it proves non-beneficial, ineffective and/or inappropriate, or in other words, when it is unlikely to restore, maintain, or enhance a life that the patient can be aware of42. ICU setting is an illustration of the complexity of this subject, in which rationing – involving such decisions as triage, admissions and limitation of care – and futility emerged at the same time (for the reason why, cf. also section 3.1 p.26). Indeed, the 1990s saw the rise of the „futility movement‟, which commended the legitimacy of physicians to decide what is futile or not and impose it to the patient and family. A few years later, futility policies were implemented in some hospitals with a process including ethics committee allowing limitation of potentially life-saving therapies with institutional support, but these were not much used and were criticized not to respect the patient and the family. Indeed, there were trends indicating that futility had to be defined in a concrete situation only, involving in the decision-making the patient and family. The Bioethics Task Force of the American Thoracic Society (ATS) defined in 1991 that „a life-sustaining intervention is futile if reasoning and experience indicate that the intervention would be highly unlikely to result in a meaningful survival for that patient. Here, meaningful survival specifically refers to a quality or duration of survival that would have value to that patient as an individual. Survival in a state with permanent lack of consciousness (i.e., completely lacking cognitive or sentient capacity) may be generally regarded as having no value for such a patient‟35. Six years after, they readjusted the definition adding that „marginally beneficial ICU care may be justifiably limited on the basis of a social consensus that its cost is too high relative to the value of its outcome‟ – a provision for allowing rationing of care. Tensions still exist nowadays, and practical difficulties are related to communication between physician and patients/families when there is a disagreement about what could be beneficial to the patient44,45. In the case of treatments lacking benefit, the futility argument is clearly accepted, since people in a collective social insurance system can‟t be asked to pay for something ineffective.

Advance care planning and bioethics Values are in each decision and moral values in each decision that impacts on others. Normally, people don't take decisions for themselves within a coherent ethic pattern. That is what makes end-of-life issues difficult, above all when a patient is incompetent. For physicians, in a deontologist system governed by duties, a hierarchy between principles has to be used. Autonomy may fail patients who become incompetent, so decisions have to be taken differently, by alternating with other principles. If presumed wishes or substituted judgment by a next-of-kin cannot be established, beneficence and non-maleficence are used to determine the best objective interests. AD are up to now the best means to grant autonomy to such patients46. Indeed, they describe their wishes on a written document and/or orally to their HCS in anticipation of a possible future incompetency. Their validity and utility are however challenged, for instance by new treatments and technologies that the patients could not have foreseen at the time they had written AD. Ideally, AD should be updated frequently, in particular to gradually take into account these potential technological changes. What is more, it also allows possible changes of mind. The literature encourages to make it possible for patients to express their „critical interests‟ (life choices or decisive particular developed skills) and not only „experiential interest‟ (highly individual preferences such as tastes), so that clues could be given to avoid blind/unquestioned application/execution of the AD21,47.

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„Le principe de moralité médicale et chirurgicale consiste donc à ne jamais pratiquer sur un homme une expérience qui ne pourrait que lui être nuisible à un degré quelconque, bien que le résultat pût intéresser beaucoup la science, c’est-à-dire la santé des autres.’ C. Bernard, 1865 (French physician and physiologist (1813-1878) considered as the founder of experimental medicine)

2.3 Law16,35,41,48-50

Thanks to illustrative cases, this overview aims at understanding how the practice called upon the law to legislate in brand new subjects such as the respect of individuals in health matters and end-of-life issues. The concepts of informed consent and competence will be addressed as well as key laws on advance care planning and their consequence in the practice.

Brief history of first health legislations and research scandals In parallel to philosophical thoughts, the Antiquity era saw the development of a legal discourse. It separated over time in a distinct and specific discipline; rules became mandatory by law. In western countries, Roman law is the basis of all modern laws. Ethics always underpins the law and sometimes complement it since this discipline isn‟t meant to rule all the details of human life (otherwise it would rule a totalitarian state). Historically, medical regulations developed as a response to sanitary insalubrities and large epidemics such as cholera in the 1848 London, giving birth to the first Public Health Ministry, or the later 1918 pandemic Spanish flu, leading the League of Nations, ancestor of the United Nations, to found the Health Organisation that was to become the World Health Organisation (WHO) after WWII. The idea was to implement hygienic measures and vaccination – a novelty at that time, which developed thanks to research. In the 20th century, some frightening research scandals awoke public awareness that the so-thought sufficient common sense and charity, and the self-established rules by corporations of physicians weren‟t always enough to ensure the respect of human dignity. Since research is essential to further medical knowledge and eventually improves patient care51, ethical requirements had to be developed not to bring it to an end. Table 1 non-exhaustively summarizes the founding texts of medical ethics and the reason why they were written (the 1947 Nuremberg Code52, the 1964 Helsinki Declaration53, and the 1978 Belmont Report54). The 1948 Universal Declaration of Human Rights (UDHR, from the United Nations) anchored key principles such as human dignity and self-determination55 and led to such texts as the 1981 World Medical Assembly‟s (WMA) Declaration of Lisbon on the Rights of the Patient56 and the 1994 World Health Organization‟s A declaration on the promotion of patients' rights in Europe57. Further specific ethics rules had to be passed in the medical field to avoid ill-treatments and abuses (cf. p.23). Historians are still finding out new scandals58 and the necessary adjustments to today‟s practices and scientific developments are done regularly. This brief introduction aimed at understanding how we came to have highly specific laws and some tight concepts such as the ones presented in the next paragraph.

22

Informed consent and competence16,49,59 Informed consent – respectful of a patient‟s autonomy (cf. section 2.1 p.11) – and competence are key components of good medical practice. Both are now strongly anchored legal concepts. Whatever the medical treatment is, consent is required since it is an intrusion in someone‟s body (invasiveness of a medical intervention). The informed consent process encloses 5 requirements: disclosure and patient‟s understanding of the information, voluntariness, decisional capacity, and proper consent 2,60. The disclosure of information must be adapted to the vocabulary of the patient in order to ensure comprehension (plain language)61. The literature proposes to adapt in all cases the wording to the expected knowledge of an 11- 12-year-old person62. The goal of the medical intervention and what it involves (complete process), as well as the potential benefits and risks must be clearly expressed. Voluntariness encloses a pressure-free decision, whether physical, moral, psychological or of time63. The patients must have the sufficient time to speak to their relatives or next-of-kin if they wish so. Voluntariness also means a right of revocation at any time, without enduring any prejudice for it. The competence, or decisional capacity, is relative to the object of consent. There is thereafter no limitation of age whatsoever. The patients have to be able to assess the concrete situation and to reason in a coherent way. It doesn‟t mean that the decision has to be reasonable. No judgment has to be made on whether its contents are right or wrong64. Finally, the patients must be able to express their choice. In Switzerland, the „capacity of judgement‟ is anchored in the Civil Code (article 16 d.)65: A „person is capable of judgement within the meaning of the law if he or she does not lack the capacity to act rationally by virtue of being under age or because of a mental disability, mental disorder, intoxication or similar circumstances.‟ We‟ll see in the next paragraphs that not everybody meets these minimum requirements when entering hospital.

‘Of all the wonders that I yet have heard, It seems to me most strange that men should fear; Seeing that death, a necessary end, Will come when it will come.’ W. Shakespeare (c.1564 - 1616)

Sleeping beauties in the USA and the right to die16,20,66-69 The development in the 19th and 20th centuries of medical devices able to maintain life such as dialysis machines, feeding tubes, ventilators, but also efficient treatments such as antibiotics, changed the face of medical care. Before these, there was little place for choices. Lifesaving medical technologies called for a clarification of what is ethic to do or not. Some striking cases where the limits of life were reached, at first in the USA, raised awareness among the health care professionals, but also ethicists, lawyers and the whole population that some decisions should be made in advance to avoid individuals to experience some dreadful situations. The following non-exhaustive cases – cited in chronologic order within the care limitation or practices that are withdrawal, withholding, euthanasia and assisted-suicide – will help understand what is at stake.

Withdrawal (unconscious patients) , 1975 USA: aged 21 years old, K.A. Quinlan fell into a coma after having some drinks mixed with tranquilizers in a party. She failed breathing for an unknown time period (cardiac arrest) and never again recovered consciousness. Taken to the hospital, she was put under artificial ventilation. After a 23 while, her parents wanted to stop it, but the hospital wouldn’t agree. They started a legal procedure in 1976, and after a long battle, the Supreme Court of New Jersey allowed to disconnect the ventilator on the basis of the presumed wish of the young lady. However, K.A. Quinlan unexpectedly lived for 9 more years in a vegetative state, her cerebral activity being non-existent. She stopped breathing in 1985. This case made people think about their own wishes regarding such states. They wondered how to make them known and applied. In 1976, California was the first American state to adopt legislation on AD and passed the Natural Death Act. The „living will‟ allowed the withdrawal of „death-delaying‟ treatments (excluding nutrition and hydration) in case of incompetency and terminal illness. It would not have applied to K.A. Quinlan as she wasn‟t considered at that time as being in a terminal illness – she was breathing by herself, neither to the next case. Nancy Cruzan, 1983 USA: N. Cruzan was 25 years old when she had a car crash that left her with severe brain damages. Although she had no artificial ventilation, she was artificially fed. After 5 years of permanent unconscious state, her family asked for a withdrawal of nutrition and hydration. Three consecutive judgments in Missouri did not allow it. An authorization was finally granted in 1990 once evidence was given that it would have been her decision too. N. Cruzan stopped breathing 12 days after the withdrawal of the gastric tube, in December 1990. It is the first ‘right to die’ case to come before the U.S. Supreme Court. The Court did not treat the forgoing of artificial nutrition and hydration differently from the forgoing of other forms of medical treatments. The two mentioned cases made the United State senator John Danforth willing to raise public awareness in order to avoid such critical situations, taking into account both the emotional distress of the families involved and the huge health costs. He thus helped the passage of the Patient Self-Determination Act in 1991 (see p.23). Unfortunately, the passing of this act did not prevent other tragic cases to occur. Theresa Schiavo, 1990 USA: T. Schiavo, suffering from bulimia, had a cardiac arrest because of a lack of potassium (due to the frequent vomiting). She lived in a persistent vegetative coma for 15 years, a tube in her stomach ensuring her nutritional needs. While her husband, her legal surrogate, was asking that she could die in dignity – in agreement with the medical team – her parents still had some hope that she would recover. The Florida Court and then the U.S. Supreme Court eventually allowed the withdrawal of the tube, which occurred in March 2005. T. Schiavo stopped breathing 10 days after the removal of the enteral nutrition (tube feeding). This case was highly emotional, involving numerous petitions, motions, and court suits. It was closely followed by pro-life movement and disability rights groups. Similar cases in Europe deeply marked societal conscience and impacted on the law. , 1992 Italy: E. Englaro had a car crash that left her in a persistent vegetative state. Her father called the court for a removal of the feeding tube, invoking his daughter’s previously expressed wish of not enduring coma state, in 1999 and again in 2005. Facing refusals, he called the Milan Supreme Court of Cassation which allowed a withdrawal in 2008. E. Englaro stopped breathing in February 2009, her father having waited till all appeals were concluded.

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Withdrawal (conscious patients) Other cases dealt with conscious patients, competent for some, incompetent for others. The latter cases pose the question of the presumed wishes of the patients and put into light the potential worthiness of HCS. Claire Conroy, 1985 USA: C. Conroy, fed with a nasogastric tube, suffered from severe dementia and many physical dysfunctions (inability to speak and to leave her bed, incontinence, gangrene, among others) when her nephew, her legal guardian, asked in 1983 the court for permission to withdraw her feeding tube. While permission was granted at first, an appeal delayed the decision and C. Conroy finally died with the tube in. The New Jersey Supreme Court reversed the trial court decision in an effort to protect incompetent patients and prevent abuses. It ruled that, in the absence of HCS, life-sustaining treatments couldn’t be withheld if that was against the patient’s wishes or her best interests. This influenced the thinking of other State Supreme Court70. Miss B., 2002 Great Britain: Miss B. was paralyzed after a ruptured blood vessel in her neck and lived with the assistance of a respirator for one year when she asked for the right to stop the machine. The High Court granted her the right to die and Miss B. was also awarded £ 100.- for ‘unlawful trespass’71. , 2006 Italy: P. Welby suffered from muscular dystrophy and needed since 1997 artificial ventilation support. In 2006, after a worsening of his state leading to diminished communication abilities, P. Welby publicly declared his wish to stop all life-sustaining treatments (ventilator included), arousing a heated debate in Italy and beyond its boundaries. One of his physicians – after having informed the authorities – performed the withdrawal of the ventilator proceeding with sedation.

Withholding At the same time, the right to die was not only required for the withdrawal of treatment, but also for the abstention of medical interventions. ‘Baby Doe’, 1983 USA: Baby Doe was born with Down’s syndrome and with a malformation that needed an operation to ensure his survival. Facing the parents’ refusal, the hospital decided to take the case to court. Eventually, the Supreme U.S. court agreed with the parents and Baby Doe died 6 days after.

(Active) Euthanasia Even though going slightly off the subject, the many cases dealing with euthanasia – defined here as an active shortening of the dying process – have to be evoked to better understand the changes in minds. Here are some illustrative examples regarding patients and physicians. Jacob ‘Jack’ Kevorkian, 1999 USA: J. Kevorkian was a physician, intellectual and euthanasia activist. He was often named ‘Dr. Death’, and thought that "dying is not a crime". He claimed to have assisted at least 130 patients to their end and did 8 years in prison for second-degree murder. Vincent Humbert, 2000 France: After a car crash, 19-year-old V. Humert was left tetraplegic, blind and numb. He wrote to the French president to be granted the right to die. His mother, after persistent requests, injected drug to her son who finally died in an intensive care unit. For her part, the mother was released but summoned for psychological treatment. Daphné Berner, 2009 Switzerland: D. Berner was cantonal physician of the Neuchâtel canton when she was sued for the euthanasia of a patient who wanted to commit self-. Since she could

25 ultimately not perform the final act, she approved D. Berner’s help with a physical sign. The Court, disowning the Public ministry, based the final acquittal on the stake of dignity, granted by the Swiss penal code (SPC, art. 17-18)72.

Assisted-suicide The two latter cases make the link to assisted-suicide – where the final life-shortening act is completed by the patients themselves. Some sadly famous names are given in the following without further details. Likewise, they contribute to appreciate the ins and outs of the right to die. Ramón Sampedro, 1998 Spain: Paralyzed from the neck down, R. Sampedro battled for 29 years, trying all possible courts up to the European Commission on Human Rights for the right to end his life. He eventually committed suicide with the help of friends using a strategy not allowing any of them to be charged for the given help. Diane Pretty, 2002 Great Britain: D. Pretty was 43 years old and suffering of a lateral amyotrophic sclerosis – an illness in which consciousness in not altered, but muscles are little by little paralyzed, which leads to death through asphyxia – when she asked the English court for the right to benefit from her husband’s help for her suicide. The refusal of the Court was validated by the European Commission on Human Rights. She finally deceased naturally in Mai 2002, 11 days later. V. Curiana, 2004 Great Britain: The London Supreme Court authorized V. Curiana’s husband to take his wife to Switzerland to benefit from assisted-suicide. The woman suffered from incurable degenerative brain disease and was judged mentally competent to make this decision by a psychiatric expertise.

Laws on advance care planning

Laws in the USA and in western countries73,74,75 Law articles referred in this section are available in Appendix 2 p.61.

As seen in a previous section, the emergence of AD in laws occurred first in the USA with the 1991Patient Self-Determination Act (PSDA)76, act that remains the law of the land. It requires all hospitals and nursing homes to ask whether people on admission have or would like to have AD. Consecutively, AD have entered the international scene quite progressively in law texts all around the western countries and in international treaties. Indeed, when the patients are unable to express their will, their anticipated refusal of a treatment (§3 ch.3) and the fact of taking into account his wishes for care (§3 ch.7) appeared in the 1994 World Health Organisation‟s (WHO) „Declaration on the promotion of patients' rights in Europe‟. Three years later, similar concepts came out in the European Council‟s Oviedo's Convention (art.9), a set of norms intended to be universal, beyond cultural pluralism, and that become binding if ratified by states. However, the Convention‟s explanatory report says that it is not compulsory to follow the patient‟s wishes, except when the wishes are duly motivated. The Convention also allows medical surrogates (art.6). In 1999, the European Council

26 enacts two Recommendations that encourage the Member States to respect and protect patients' autonomy. AD came into view in the special context of dying people. Nowadays, most European countries have discussed these questions. Some have introduced AD in their legislations; other let deontology norms or general rules apply73. For instance, if the patient lacks competency to consent, the good clinical practice and most national laws refer physicians to a surrogate – a legal representative, relative, or close friend depending on the country36,62,77,78. Up to now, no European directive involves the concept of AD.

Switzerland – modification of the Civil Code Law articles referred to in this section and some additional information on the historic of the Swiss law on AD are available in Appendix 3 p.62 and Appendix 4 A p.68 respectively. Due to the special distribution of regulations between cantonal and federal laws in Switzerland, the concepts of AD and HCS were first anchored in cantonal laws, since health matters are under their jurisdiction. In Geneva for instance, these concepts have existed since 1996 in the section related to the patients‟ rights of the Geneva law on health (K 1.03, art.47 and 48). At the federal level, they have just appeared in the modification of the Civil Code (CC) law on tutelage, in a chapter entitled „The Patient Decree‟ (articles 370-373 CC), and came into effect on 1st January 2013. Article 370, al. 1 is about advance directives (the patient decree), al. 2 about the health care surrogate decision maker (natural person) and al.3 provides alternative instructions for replacement of the HCS if necessary. Article 371 CC gives the conditions for valid AD: AD must be in a written form; dated and signed by their author. The person can specify on their health insurance card that they have AD and the place of deposit. According to article 27 CC about excessive engagements, AD can be revoked anytime. Before the entry into force of the modification of the Civil Code, most Swiss cantons had legislations on AD (cf. Appendix 3 p.64). None of them proposed a concrete manner to stock AD.

Except for binding laws, the Swiss Academy of Medical Sciences (SAMS, see Appendix 5 p.69)79 – an independent private-law foundation that, amongst other things, publishes guidelines and rules on professional ethics – enacted recently a recommendation about the writing of AD („Advances directives – 2013‟). The concept also appears in the recommendations on „Intensive-care interventions – 2013‟ and „Palliative care – 2013‟. They particularly encourage elderly people to adopt them, and ask physicians and caregivers to pay attention and promote them. Furthermore, the necessity of frequent AD update is pointed out (no time constrain is given, but the practice recommends all 2-3 years). The possibility to designate a HCS is also proposed – authorization that should also be updated as regularly as possible. A copy of the AD latest version should be placed in the medical records, with the contact details of the HCS. The SAMS had been consulted by the government at the time it was redacting the new Civil Code, as was the Swiss National Advisory Commission on Biomedical Ethics (NEK-CNE) – an extra-parliamentary body established by the Federal Council on July 2001. It published an interesting and well-argued stand about „Advance directives – Ethics considerations on the new law on tutelage, taking particularly into account dementia‟ in February 201180.

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Since these were part of the changes of mind leading to the implementation of AD in Switzerland and since they were approached in the previous paragraph, we would like to specify that, under the Swiss jurisdiction, active euthanasia is prohibited (art. 114 SPC) and assisted-suicide allowed under stringent moral conditions (art. 115 SPC – no selfish interest; the person helping to commit suicide being private or professional).

Advance care planning and law48,62,81 Autonomy is nowadays the first principle used in the medical arena to legitimate the right to refuse a treatment. People are however misled if they think this goes along with the right to demand one. Indeed, if the former relies on a negative right – i.e. the right to be left alone –, the latter is based on a positive right that law doesn‟t recognize as binding under western latitudes. What is more, withholding and withdrawal of treatments are legitimate and legal if the treatments are deemed futile, whether by medical knowledge or by considering the risk/benefice ratio (cf. section 2.2 p.17). Relieving pain is a key component of care and is unanimously seen as an aspect of beneficence. Nonetheless, even though recent medical findings deny it38,40, the use of some analgesics, such as morphine, leads to a possible fastening of death. This „double-effect‟ would technically be active euthanasia with sedation. However, since to causing death is not the main aim of drugs administration but to relieving pain, the practice is admitted both by ethics and law. Even some strong moral entities such as the Catholic Church, though emphasizing the huge value of life, admit the legitimacy of this possible double-effect if the aim is to relieving pain, as well as care limits if extraordinary means need to be taken and are disproportioned compared to the results hoped for, or too heavy to be endured by the patient and their family82. Informed consent procedures are a cornerstone of the respect of the patient‟s autonomy. Nevertheless, AD are most of the time written without the help of any health care professional, questioning therefore the legitimacy of informed consent for AD. It has been proposed that AD should also be signed by a health care provider, attesting their help in the writing of AD21. In spite of this, detractors think that writing AD is a private matter involving the individual‟s responsibility and cite examples from our democratic societies where people are legitimate to vote, have children, or sometimes even bear arms without anyone signing for it24,83. One should keep in mind that information is a patient‟s right, not a patient‟s obligation80. Most laws recognize vulnerable populations needing enhanced protection, such as the elderly, people with limited literacy, cognitive deficiencies, etc. – i.e. people who couldn‟t defend themselves in the occurrence of a danger or an attack. In the field of research, to avoid any exploitation, the law clearly states that incompetent or critically ill patients, among others, have to be treated with utmost diligence, beneficence and non-maleficence possibly overriding autonomy84-86.

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„Alas, poor Yorick! I knew him, […] Now get you to my lady's chamber, and tell her, let her paint an inch thick, to this favour she must come; make her laugh at that.‟ W. Shakespeare (c.1564 - 1616), in Hamlet (1602)

3. Medical context After some hints on the development of philosophy, bioethics and law regarding themes implicated in advance care planning, it is necessary to enter in more details the medical arena and its specific advance care planning tools. The chosen approach takes into account brief historical contexts in an attempt to help understand the whys and wherefores involved in nowadays minds and practice. Explanations concerning resuscitation orders are given first. Then follows the special medical field of palliative care to end up with the intensive care setting, where the notions of outcome, limitation of care and competence are described within this setting. Challenges in surrogate decision-making are discussed, as well as the barriers and facilitators for advance care planning.

3.1 DNR, NTBR, DNAR and CPR orders87-92,42,41, 93-96 The American terminology DNR, acronym for „Do Not Resuscitate‟, is widely used in foreign languages, including French. It is a synonym for NTBR, i.e. „Not To Be Resuscitated,‟ and for the nuanced DNAR shape, for „Do Not Attempt Resuscitation‟ (emphasizing the possibility of failure). These words are the complete opposite of CPR, i.e. „CardioPulmonary Resuscitation‟, a practice largely perfected in the 1960s. In case of cardiac arrest, CPR encloses such following measures as precordial shock, electric shock (defibrillation), chest cardiac massage, ventilation, endo-tracheal intubation,… It does not include the withholding of any kind of treatment, such as antibiotics therapy,… In the early days of resuscitation, thanks to its success, little time elapsed before CPR was universally the rule for anybody. Failure to perform resuscitation, as passive euthanasia, was seen as highly unethical at that time. However, over the 1970s and the 1980s, some ethical concerns arose regarding the all-mighty resuscitation. Indeed, while the assumption that all patients wanted resuscitation was challenged, on the one side, by far more patients‟ refusals to be brought back to life than expected, and on the other side, by the „living will movement‟ associated to the tragic case of K.A. Quinlan (cf. section 2.3 p.20), the poor survival rate of resuscitated patients after hospital discharge was pointed out. What is more, physicians had to admit that unforeseen but serious consequences, such as brain or physical disabilities, could occur after resuscitation. Some physicians began to decide by themselves who should benefit from CPR or not, or else assign a „slow code‟ to „special patients‟ such as terminally ill, with dementia, in persistent vegetative or not coma,… – i.e. a practice where resuscitation was delayed or performed in a way it would fail. Facing such issues, the American Medical Association (AMA) encouraged in 1974 DNR orders to be written on the patient‟s chart, arguing that not all patients would really benefit from CPR. A pitfall was the lack of physician-patient communication about resuscitation orders, which is still present today, despite the numerous efforts to improve it over the decades. The literature identifies that physicians underestimate the number of patients who would like to speak about them and that patients wait for their physician to initiate discussion on the topic, or daren‟t initiate it, not wanting to interrupt physicians in their busy schedules97. Moreover, there is a misconception on both the physicians‟ and the patients‟ side that resuscitation orders include more care

29 than just resuscitation measures, which hinders its adequate use. Finally, some families and patients have unrealistic expectations on resuscitation and are thus misled94. Regarding terminology and to avoid any ambiguity, „natural death‟ has been proposed in place of DNR and similar acronyms42. Gender and cultural factors seem to play a role in the practice too98, 99.

‘Every man's life ends the same way. It is only the details of how he lived and how he died that distinguish one man from another.’ E. Hemingway (1889-1961) 3.2 Palliative care40,68,87,88,100 Since the way one dies is also part of advance care planning, the aim of this section is to present how palliative care developed and what they consist of. „Except for palliative care, there is no medical treatment that is always obligatory‟101. This statement describes well the paramount importance palliative care has reached today (from Latin palliare, to cloak). This healthcare area aims at relieving and preventing suffering at all stages of an illness and proves decisive at end-of-life (henceforth EoL). Appropriate palliative care includes also further support, namely psychological, social and spiritual. Hence, a multidisciplinary team is needed, composed of physicians, pharmacists, nurses, chaplains, social workers, psychologists and other allied health professionals. In the past, special attention was paid to symptom management in hospices, where the dying were taken care of. Opium poppy was known since Antiquity, but morphine was only isolated from it in 1804 (by F. Sertürner, a German pharmacist). Analgesia (from Greek analgēsia, painlessness) was of utmost interest in the 19th century. Chloroform and ether were also discovered. These drugs were first used for surgery and as painkillers, although the benefit-adjusted doses and detailed effects were unknown. Advances in that field and in the ability of assessing and monitoring analgesic performances, benefited to anaesthesiology and to what would be called palliative care. Proper palliative care is acknowledged to have been launched in the 1960s by an English nurse, Cicely Saunders. To defend her field more vigorously and enhance her credibility, she became a doctor. The first specialized hospital, St-Christopher‟s Hospice, opened in 1967 in Great Britain. Its goals were to improve care in EoL patients and their family and help them find a meaning to what they experienced. Outside managing pain symptoms and provide comfort care (e.g. hydration of the mouth, prevent or treat side effect of a treatment,…), palliative care also dealt with defending the patients‟ right to refuse treatments and aggressive therapies, and with supporting all dimensions related to EoL care, whether physical, social, emotional or spiritual. Nowadays, even if in terms of results, palliative care does unfortunately not succeed in avoiding all the suffering, management of pain is crucial and recognized as an EoL quality factor, as are communication matters, with the patient and the family, and within the team as well. Two main kinds of structure ensue from such care: palliative care units – for terminally ill patients who can neither stay in other units nor at home; and mobile team for analgesia and palliative care, which can intervene in non-specialized units and/or at home (depending on the structure‟s organization). Eventually, many articles in the literature promote the overlap of this field with intensive care units (cf. next section). In palliative care setting, writing AD resulted in less anxiety and depression for the patients102,103. In other settings, it seems that bereaved family members whose beloved had AD were more satisfied and coped better with the situation104.

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3.3 ICU, outcome, limitation of care and competence35,38,40,41,68 In essence, ICUs derived from post-operative recovery units – the first having emerged for neurosurgical patients in Baltimore in 1923. During WWII, the demand for recovery units increased in proportion to the many improvements in surgical life-sustaining techniques. Patients, then, needed a larger recovery time. Because each specific field developed separately, the first ICUs were either surgical, medical (progresses on ventilation,…) or dedicated to cardiac patients (improvements in electrocardiographic monitoring,…). We have seen that the current practice in intensive care intends to assure the survival of critically ill patients via specific care with sophisticated machines and highly trained health professionals. This extremely technical area is however also the place of many deaths, most of the time ensuing from a decision105. Regarding ICU management and technique, prognostic scoring systems allow a global evaluation of mortality and comparisons between the ICU centres – the most current being the APACHE (Acute Physiology and Chronic Health Evaluation, first developed in 1981 and revised three times since then)106. For individual patients, several and numerous medical parameters have to be taken into account to deliver optimal care and get the best decisions. Good patient‟s outcome and quality of life are key factors for decision-making. However, the evolution of the patients‟ state is very hard to determine and prognosticating the patients‟ outcome is difficult. ICU stays are followed by a higher mortality and a poor quality of life107. Critically ill patients can face a possible post-traumatic stress disorder (PTSD) after ICU and hospital discharge, but this can eventually disappear. However, lasting dysfunctions, underestimated and underreported in ICU populations until recently108, are now studied and show impressive results109-111. ICU survivors show neuropsychological and neurocognitive deficiencies112 and approximately one-third of them display serious chronic functional disabilities due to long-term neurocognitive or neuromuscular impairment113. Factors associated with such outcomes are currently being investigated in order to allow prevention, early detection and treatment, to find more sensitive outcome prediction tools as well76,113-115. When evolution shows deterioration and a decision is taken to allow a natural death, the ICU staff has to switch from a life-saving role to an EoL care role, which can be really challenging. Some studies identified great variations surrounding EoL care between countries75,116-121. The detection of inadequate controlled symptoms near EoL encouraged physicians to work on guidelines and recommendations about EoL in intensive care38,122,123. Indeed, since the withholding of new treatments and the withdrawal of ongoing treatments could be painful for the patient, they require the utmost carefulness. For instance, withdrawal of mechanical ventilation has to be monitored in terms of comfort (dyspnea) in order to avoid any suffering from the removal of the tube and possible asphyxia, whatever the doses (on the double-effect, see section 2.3 p.24)124. The recommendations call nowadays for an association of palliative and intensive medicine. In addition to improvement regarding strictly body-related care, this would help implement good communication and family-centred care amidst the high technicality of intensive care125-127. Family satisfaction is a good criterion for high-quality EoL care128-136. Even without taking into account possible post-ICU complications, the experience of this peculiar setting is a rude shock. Patients face acute clinical situations, with narrow therapeutic windows41, and sedation, pain, anxiety and fear can alter consciousness and impede decision-making7,137,138. Prolonged coma, chronic delirium and agitation, as well as neurocognitive and emotional aftermath is frequent139. Given that there is no available tool to assess competence, help is sought from current well-established, reliable and valid ICU

31 tools, such as the Glasgow Coma Scale (GCS)140 for the state of consciousness ; the Sedation-Agitation Scale (SAS)141, the Richmond Agitation Sedation Scale (RASS)142, 143or the Ramsay score144 for the degree of sedation or agitation ; and the Confusion Assessment Method for ICU (CAM-ICU)145 for delirium. Adaptation of tools used in other units, such as the NIH stroke scale (NIHSS), which quantifies the impairment caused by a stroke146, or the Mini Mental State Examination (MMSE), a brief cognitive screening instrument147,148, are being worked out. Ultimately, it is the physicians‟ responsibility to determine if a patient is competent or not. They are encouraged, if not bound by law, to consign the decisional process in the medical file. This evaluation by physicians allows taking into account the wishes of patients.

„How people die remains in the memory of those who live on.‟ C. Saunders (1918-2005)

3.4 Challenges in surrogate decision-making and concordance8,20,40,149-151 If patients lack competency to express their choices and that they have no AD nor HCS, physicians have to refer to a surrogate. However, finding available surrogates in emergency settings is difficult152. Without the known wishes of the patients, a consensus is reached between physicians according to clinical data and the family that is asked to express the patients‟ presumed will. If preferences are completely unknown, physicians make decisions according to the patients‟ best interest. Relatives seem to rely on prognostics reported by the physicians and highly value discussion related to it to establish their own opinion of the patients‟ situation153. Conflicts are rare but can arise from discrepancies between what physicians and what relatives think is best35,105,154,155. Ethics consultations have proved beneficial in such cases156. Also, decision making seems facilitated by prior surrogate-patients discussion of patients‟ preferences152,157. However, as seen before (cf. section 2.2 p.16 and ch. 3), the degree of wished involvement of families in decision making is not uniform and varies according to culture and religion. Emotional burden plays a role too. The critical illness of a beloved and the ICU setting are a harsh experience for the family members who are under heavy pressure. Anxiety, depression and some feature of PTSD are frequent in family members8. This calls into question their ability to take on the responsibility to decide for the incapacitated patient. What is more, the relatives‟ accuracy with the patients‟ wishes has not been demonstrated158-162. Finally, if patients possess AD, in the case when the patients‟ precise situation is not described in it, the document fails to help the surrogates to express the patient‟s preferences163.

3.5 Barriers and facilitators for advance directives The medical literature reports that very few people write AD1,20,117,164-168. Some reasons for this poor prevalence can be evoked.

The SUPPORT study The low percentages of people who possessed AD and/or named their HCS after the implementation of the US Patient Self-Determination Act demonstrate the difficulties to introduce such tools. In 1995, the SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) designed to improve communication and decision-making via pro-active intervention did not succeed. Its

32 failure questioned all the efforts to promote AD, as well as to improve physician-patient communication and the dying process169-173.

On the society‟s side The present society shows a real reluctance to think about dying174,175 and one can say dying is a true taboo. The theme of AD is closely linked to quality of life, end-of-life, and death. People are not likely to think about end-of-life when they are not experiencing health problems, death or serious illness of a beloved176. Legal barriers to AD were identified, such as poor readability of legal content, default HCS restriction and formal requirements for AD validity. All these hinder or reduce the access to AD by vulnerable populations62. Also, culture and religion have an influence on the way AD are handled177-179.

On the patients‟ side Many patients defer decision to family members or physicians because of barriers such as inconsistency with religious beliefs of having AD, distress to think about EoL and death and difficulty to complete documents in a way physicians can use them8,180. Furthermore, patients fear speaking about advance care planning with their physicians because they don‟t want to annoy them and wish for them to speak about it first181,182.

On the physicians‟ side Even though communication is widely recognized as fundamental between patients and physicians133,183, some studies show lack of physicians‟ education about EoL care and counselling, fear and discomfort in discussing AD184, as well as little room for physician-patient discussions due to organisational barriers185. Physicians underestimate patients' needs for information and overestimate patients‟ understanding and awareness of their prognosis186,187. Some discrepancies with the patients‟ self-reported diagnosis and the physicians‟ one were also reported188. Besides, physician-patient‟s concordance after EoL discussions proved to be poor189. Lack of time to discuss AD, perceived low health literacy and patients not sick enough have been found as factors impacting on AD‟s writing168,190. Finally, physicians‟ values sometimes interfere with the ones expressed by the patients, as preferences are not always reasonable as seen from the outside.

Stability over time and anticipation Wishes of conscious patients are unstable over time, in particular when a long time elapsed between the uttered choices, when quality of life or health status changed, when aggressive care is advocated, and when there are no AD nor children8,149,191. Sensitivities vary in terms of what is worth living or not, and the experience of recovery or burdensome therapies modify the choices41,192,193. AD are a tool that demands anticipation and imaginative capacity. However, there is not always a concordance between the patients‟ expressed choices and the ones written in their AD194.

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4. Present situation of Advance Care Planning in Switzerland, Geneva, the HUG and the ICU This chapter aims at giving a general view of advance care planning in Switzerland, including the politics underlying the changes in the federal law, and some improvements that ought to me made. The situation in Geneva and its hospital in particular is also described. Since it is the setting of the study presented in the following, the goal is to understand how advance care planning is dealt with in the HUG‟s ICU195-197.

4.1 Politics of health care regarding advance care planning The implementation of the new Swiss law regarding AD (cf. section 2.3 p.24) gave them legitimacy throughout Switzerland. A brief look at the history of its implementation is of interest to understand the Swiss atmosphere surrounding AD. Before implementing the Civil Code (CC) modification in 2013, the Swiss law on tutelage (art. 360 à 455 CC) had almost not changed since 1912198(except for art. 397a à 397f CC –restriction of freedom of movement). The modification aimed at homogenizing the law and enhancing the autonomy of people while reinforcing family solidarity. The objective was also to take into account the desire of relatives to play a role in decision-making when the patient is incompetent, without the intervention of any external authority. Regarding AD for instance, if none exist for a person, their relatives are now allowed to give consent – as was already the case in some cantons. Due to the Swiss way of legislating, this has been eight years in the making. Indeed, works on these articles began in September 1995 with a small committee of experts and were carried on with an interdisciplinary committee of 20 experts since April 1999. In the meantime, in June 2001, an initiative to have a binding „patient‟s will‟ was submitted by the Nation Councilor Gross Jost, illustrating the need for change199. Because the problematics were linked, it had to wait for the forthcoming debates on the experts‟ work. The revision proposed in consultation by the Federal Council in June 2003 was overall welcomed, and the results of the consultation were approved by Federal Council in June 2006 (cf. extract of the Federal Council‟s Message, in French, Appendix 4 B p.68). The text was finally debated in Parliament between September 2007 and December 2008, and the new law was approved on 19th December 2008 with very high rates: unanimously by 43 votes to 0 in the Council of States and by 191 votes to 2 in the National Council (cf. some details on the debates Appendix 4 p.68). Shortly after, on 12nd June 2008 in the National Council, Alec von Graffenried posted the motion called „Advance directives – an obligation for everybody‟200. It proposed for it to be compulsory to write AD from the age of 50 years old or to express a refusal to do it201. It aimed at helping lift the taboo on death and at raising public awareness on heavy health costs at EoL. The motion was rejected on 10th September 2008 by the Federal Council because they thought this would be a forced autonomy, which would have been in total contradiction with the aim of AD at improving it. This reaction shows that autonomy was at the heart of the law, but that the legislator wanted to be totally impartial, in particular regarding promotion of AD.

The new law on tutelage saw also the federal government‟s attempt to reduce administrative costs for invoicing in its art. 371 CC (cf. Appendix 3 p.63), that promulgates a new ID formatted health insurance card. Swiss people received it in 2013 via their health insurance. Except for administrative data such as the insured person's name or the social insurance number, facultative data such as

34 the existence of AD and their place of deposit could be registered. The latter information could consequently be found quickly in time of emergency. This special function has not yet been implemented in the practice and the new law doesn‟t set it as compulsory. Up to now, no AD national register exists. Many issues in terms of security and convenience at use would have to be worked out. An idealistic national register would be accessible by all physicians and authorised caregivers over the internet (on-line). An access code would allow primary care physicians and specialists to consult the file about the patients they are taking care of. At the hospital, the files could be viewed by physicians in charge of or on request to the patient (the code being given for example through the health insurance card), or by breaking a security window for emergency departments. All patients would have a code access to their own personal AD and could modify or update them anytime they would like to. The entire AD could be given and not only the coordinates of the HCS and/or a vague pre-formed formulary. National registers do exist for other purposes and work very well, as is the organ allocation register created by Swisstransplant SOAS (Swiss Organ Allocation System). It was developed in response to the new Swiss organs donation's law and not only offers the possibility to enter patients‟ data concerning transplantation, but also to attach original files such as, for instance, X-ray or pdf documents. A likely register for AD could be very helpful to coordinate care throughout Switzerland.

Relevant questions about advance care planning would be to find out how AD are handled at medical schools and if there are special incentives for physicians to deal with them. There is no federal consensus regarding teaching at medical school, since education is a cantonal matter. In Geneva for instance, ethics has been taught at the Medical Faculty since 1994. During these lessons, AD are discussed among others topics of interest (e.g. informed consent, ethics on research, etc.). In relation to medical care invoicing, the Swiss system named „Tarmed‟ gives a certain number of points to each medical act, points that allow the final remuneration. For example, a consultation to a primary care physician is divided into basic care (e.g. anamnesis, consultation of the medical chart, etc.) and special care (e.g. medical intervention such as taking the pulse, examination of the throat, mouth, tongue, etc.). Since the former are not well valued, physicians administer some of the latter to be waged suitably for the time spent consulting. Time spent speaking with the patient is thus poorly compensated. Back to AD, no „special points‟ are devoted to giving information on them or assist their drafting. The risk therefore is that very few primary care physicians would take the necessary time to help their patients or even just inform them correctly.

4.2 Promotion of advance directives in Switzerland and Geneva in particular Except for the Swiss Academy of Medical Sciences (cf. section 2.3 p.24), some private initiatives aim at promoting AD. For example, many associations, whether charities (e.g. Caritas, La Main tendue), professional (e.g. FMH – cf. Appendix 5 p.69, Pro Senectute), of patients (e.g. OSP, HUG-Médiane, Alzheimer, Pro Mente Sana, Parkinson-Suisse , FSA-FBV, Dialog Ethik, Anthrosana,...) or specialized in self-determined living and dying (e.g. EXIT, Dignitas – cf. Appendix 5 p.69 and GGG Voluntas, Entrelacs) propose pre-established AD formularies, as well as explanations on the problematics and some examples and tips.

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Besides, some cantonal associations contribute to implement AD in the social fabric (in the structure people are embedded in), as for instance in Geneva, where the FeGems202 – a cantonal referential for deontology and for practical aspects of homes for the elderly – encourages the home residents to be provided with information on AD and help. As this is a proposal only, it is not part of the „welcoming type-contract‟. In practice however, most homes try to write AD with all their new competent residents wanting to do so. The FeGems organizes also trainings on AD. Additionally, some cantonal initiatives for health improvement might be of some help to facilitate AD implementation, as in Geneva with the new program „MonDossierMedical.ch‟203 which allows patients to create their own health computerized file, related to the HUG file. It offers the advantage of being available to consultation to all health care professional in charge of the patients (accepted by them) and aims thus at easing communication among them.

4.3 Practice around advance care planning ensuing from the Swiss federal law To be in compliance with the law (art. 372-381 CC, cf. Appendix 3 p.63), physicians facing new patients who are incompetent should seek for their AD and/or their HCS, and then wonder if they have a person entitled to act as medical representative. If not, the treatments should be discussed with a next-of-kin according to the law‟s preferential order as follow: first the partners who cohabit with the patients, then any person who cohabits with them and/or provides them with support, followed by the children, the parents and finally the siblings. The need for a regular assistance provided to the patients is emphasized. In accordance with the next-of-kin, the patients‟ presumed wishes and best interests are defined. If no next- of-kin are available or wanting to represent the patients, physicians can ask for the adult protection authority to designate a representative deputyship. In case of emergency, physicians must act according to the patients‟ presumed wishes and their best interests.

4.4 The University Hospitals of Geneva and the practice around advance care planning90, 91,204 The aim of this section is to understand how the HUG works and how advance care planning is implanted in it. A quick overview of the hospital‟s patients enables us to break them down into three main categories: the chronic patients – treated for a specific disease (e.g. chemotherapies for cancers, dialysis for renal diseases,…); patients admitted to emergency (e.g. accidents, any kind of problems that cannot wait for an appointment to the primary care physician,…) and the scheduled patients – sent by their primary care physician for a special exam or an operation. Also, private patients are received on the hospital premises in parallel by some physicians who are mainly hired by the cantonal state for the hospital but do not own a private practice. To date, few patients actually receive complete information on AD in the HUG. Patients from the nephrology department, because of their possibly burdensome pathology, are offered by the healthcare team (mainly nurses) to think further about end-of-life issues (e.g. specific treatments, resuscitation,…). The elderly from the geriatric department, because of their advanced age, are proposed to reflect on AD; it appears however that very few actually write AD205. Patients in the palliative care unit are informed on the topic (cf. Appendix 6 p.69, in French). A study reported that AD could help communication and concern of the patients about their end-of-life103.

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No mention of AD or resuscitation orders appears in the admission file of the emergency department. The habit is generally to ask the patient directly and only when there is a life-threatening situation, or for the elderly. Rare are the cases were a positive answer is given for AD (even for the elderly). The hospital provides all patients with an administrative file (DPA - Dossier Patient Administratif) as well as a care file (DPI - Dossier Patient Intégré) in which the mention NTBR/DNR appears among other key information on the front page (section 2. Attitude). Patients coming for internal medicine consultations are admitted by „junior physicians‟ (residents who have a mean experience of 3 years). Only if the patient presents a risk of cardio-pulmonary arrest, is competent and is not at the end of their life, the junior physician has to fill a the DPI file with the patient‟s resuscitation wishes (NTBR or CPR) and whether the topic was discussed with the patient or not (cf. Appendix 7 A p.70, in French). In 2001, the HUG‟s clinical ethics committee gave an opinion on cardio-pulmonary resuscitation saying that resuscitation is the general rule and that the NTBR orders ought to be discussed with the patient206. A recent study conducted in the HUG revealed that of 206 patients included, 21% had a DNAR order, 62% a CPR order and 17% had neither. The physicians provided justifications for DNR orders in 59% of the cases, and these were matters of severe comorbidity, age, patients and families' preferences and poor prognosis / quality of life. Though patients‟ prognosis and quality of life were the two main independent factors associated with CPR/DNAR orders, residents‟ interviews revealed that they mainly evaluated prognosis intuitively, and quality of life without involving the patient. Physicians‟ reasons for not including patients in resuscitation decisions were: patients‟ lack of competence, a clinical situation viewed as good (CPR) or offering little hope of recovery (DNAR), communication barriers, or unease facing a possibly too emotional or unnecessary discussion. In- depth and practical training were suggested to improve the CPR/DNAR decision process90,91. At first, there was no place for AD in the DPI file. Things changed after the HUG‟s clinical ethic committee expressing opinion encouraging the availability of AD on the DPI file207. Since 2009, inpatients have been able to ask their physician in charge to upload and attach their AD as a pdf document to that file. Thus, other health care professional taking care of the patients can see them in the DPI front page and download or consult them anytime. Outpatients can send their AD to the legal department of the HUG (the chancellery) in order to have them uploaded. Prior to this, a procedure of validation is started, including a meeting with the patients. If the patients have never been taken in charge at the hospital, the same procedure as for outpatients is followed, but patients can be charged for it. These rules and validation processes are included in the HUG board of directors' Directive on AD (cf. Appendix 7 B p.70). The first 2009 version was revised in 2013 to include the changes of the new federal law. Except for summarizing the law and how to turn it into practice, the directive also states that the medical HUG staff should encourage patients to own AD and assist them in the drafting. A one-day training on AD has been offered by the HUG‟s training centre since at least 2004. Regarding communication, since 2004, the hospital has had a patient guide (image on the left, cf. Appendix 7 C p.71) with a patient‟s charter, in which the patient is defined as a care partner and a true collaboration is requested. The guide also states that the HUG staff will enquire about the existence of AD and will respect them. Information on the patient's rights is given, with a whole paragraph dedicated to AD. These explanations are also available on the HUG website208, where a specific page gives AD‟s legal bases, as well as tips for people

37 interested in writing them. What is more, a specific brochure on AD, first edited by and for the palliative care unit in 2009, is now also available for the whole hospital on request from the 2013 version of the board of directors' Directive on AD (image on the right). The brochure states the compatibility of the DPI file with the web program MonDossierMedical.ch (cf. section 4.2 p.33). Finally, punctual communications on AD are made in the either online or in print hospital‟s journal „Pulsations‟209. Quality procedures are of paramount importance in today‟s HUG practice. Audits are done in all HUG departments and allow questions on AD among other field of investigation. The HUG staff is asked to show where the patients‟ AD information is on the charts, and families and patients are asked if they have had information on AD. The quality auditors also look at the front page of the DPI file to assess if it was well filled out in terms of advance care planning.

4.5 Practice around advance care planning in the HUG intensive care unit68,210-212 Very few people arrive into the HUG ICU with written AD (roughly less than 1%, since there are no proper statistics on the subject). When they do, it is mainly because they underwent an operation or because they are members of EXIT (cf. section 4.2 p.32). Apart from elective cardiovascular and neurologic operations needing special monitoring only available in ICU, the largest part of ICU patients comes from the emergency department. Once the patient has been evaluated by an emergency physician, an intensivist accepts the critically ill patient in ICU if there is a chance of recovery and whenever the consent is given or presumed. In the rare case of conscious patients, the question is asked whether they have got AD. The main goal is then to save the patient‟s life. If no stabilisation can be achieved or if no solution can be worked out (e.g. irreversible coma, no chance of improvement in the health status,…), a treatment withdrawal is at stake. A multi-disciplinary team discussion is held (physicians and nurses in charge). Then comes the family meeting, where the situation is discussed once again with its members. The family meeting includes also next-of-kin, such as a neighbour taking care of the patient, as allowed by law. If no family or next-of-kin exists, the decision is taken by the previously mentioned multi-disciplinary team. The time elapsed before a decision of withdrawal varies according to the physician's sensitivity and experience. When the family expresses an opposition to the withdrawal of treatment, the necessary time to accept the fact that their beloved will not recover is obviously provided to the family members. The final decision remains however with the physicians. If a conflict were to arise, help could be sought from the HUG ethics committee who would deliver an opinion. Their assistance is nevertheless sparsely called upon. If no consensus is likely to be reached, the physicians could call the cantonal tutelage authority; but this has never occurred until now. In some special cases, where a medical doubt about the patients‟ outcome exist and no decision of withdrawal of treatment is taken (mostly in non-ventilated prolonged comas), patients are transferred in a non-acute continuing care unit (Loëx). Regarding IT (computer assistance), except from the DPI patient file mentioned in the previous section (p.34), the ICU possesses a specific electronic file which takes all the measurements of the numerous machines around the patient's bed. No special mention about AD appears on it.

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5. Study context and the Advance Care Planning project

5.1 Major cardiovascular surgery and periopererative setting2 Cardiovascular diseases are the first cause of death in many countries and guidelines recommend discussing advance care planning5,213-215. Despite of this, AD are rare in the context of surgery, at least in Europe216-219. The relationship with surgeons seems complicated regarding post-operative care and limitation of care220-223. Nonetheless, some programs to improve advance care planning proved successful165,224,225. The paramount importance of a meticulous informed consent for high-risk surgeries has been reported. Indeed, all complications, whether during or after the operation should be discussed, and the possibility of an ICU stay should also be mentioned, with this burdensome context explained. A well-documented preoperative discussion should thus permit to identify the patients‟ preferences and help decision-making in case of emergency. It seems that only a small number of patients aren‟t able to cope with such discussions because of overwhelming feelings and fear7. What is more, medical literature supports research on subject such as what a good death is, as well as research with EoL patients. Such researches are ethical, because critically ill patients must be given the opportunity to participate in projects aiming at bettering health care, as others patients are, and because such progresses can‟t be reached without clinical investigations175. This legitimates the choice of the population of the present study. Indeed, the study population is composed of patients scheduled for heart surgery. They were chosen due to their homogeneity, the magnitude of stress related to surgery, the duration of ICU stay, their mean age of 65 years and the low percentage of death. The risk linked to heart surgery or major vascular surgery is commonly known to be life-threatening, heart being seen as a central, vital organ. Thus, the hypothesis is that these patients would be likely to be aware of the importance of what they were undergoing. However, the complications are only of 10% and the mortality rate is very low, ranging between 2 to 5% depending on the comorbidities226. We included valve, coronary and aortic surgery.

5.2 The patients’, the relatives’ and the physicians’ point of view Project design The study addressed the question of AD from 3 different angles, the patients‟ view, the family‟s or next-of- kin‟s side, and the vision of physicians. In order to do so, the study was conducted according to 3 distinct protocols planned as follows. The progress of each protocol is indicated as well. Protocol I: Patients‟ study - Inclusions over, preliminary data, to be further analyzed Protocol II: Relatives‟ study - Inclusions over, preliminary data, to be further analyzed Protocol III: Physicians‟ study - Finalized: article on AD written, articles on HCS and communication to be written Protocol I and II were submitted and accepted by the HUG's ethical committee on 23rd November 2009 (NAC 09-001). Protocol III was submitted and accepted by the AMG's Ethical Commission (Association des Médecins Genevois) on 10th 2009 (Protocol 09-06). This research project was supported by the SNSF (Swiss National Science Foundation), grant n°CR31I3_127135/1.

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Objectives The objectives of the project were to address the question of advanced care planning and to investigate the reasons that lead or not patients to write advance AD or designate a HCS in the context of scheduled major cardiovascular surgery. The secondary objective is to determine whether a discussion on that subject before surgery may influence the attitude of patients towards AD or HCS. The prevalence of AD/HCS in this population and the occurrence of willingness to enter the process of writing AD, as well as the question of with whom the patients would like to write AD will be assessed in parallel. The hypotheses are that patients, their family and physicians are not enough aware of the importance of advance directives, of advance care planning and of HCS designation. Also patient scheduled for major surgery may have had the opportunity to discuss these topics with his surroundings and to write an AD165,225.

5.3Advance care planning project The 2 protocols for the patients and the relatives are given below. Information on and names of the Annexes were left, but they are not attached to the present document. However, they are available on request. Male gender was used without any discrimination to simplify and assure clarity.

Protocol I: Patients’ study

Methodology Setting: Geneva University Hospitals, Service of cardiovascular surgery

Population: All consecutive patients scheduled for a major heart surgery (i.e. valve/aortic surgery, coronary bypass) and other major vascular surgeries (such as aorto-bifemoral bypass, anevrysm, etc.) were studied. This study was randomized, controlled, and open. The patients were randomly assigned to 2 groups (Figure 1 of Annex 1): Before Group studied in 3 steps: - before surgery – Questionnaire Q_I_PatB (Before) - 1 week after surgery – Questionnaire Q_I_PatA (After) - writing AD if wanted – Questionnaire Q_I_PatW (Writing) After Group studied in 2 steps: - 1 week after surgery – Questionnaire Q_I_PatB_A - writing AD if desired – Questionnaire Q_I_PatW (Writing)

Study design The study design is summarized in Annex 1 (Figures 1, 2 and 3 shows the schemes of the questionnaires, Document 4 elaborates on the patient‟s approach and the definitions of advance directives (DA) and health care surrogate (RT) ). The research consists of two groups. The Before group is questioned by the investigator the day before the surgery and within a week after the surgery (2 questionnaires). The After group is questioned within a week after the surgery (1 questionnaire). The interview consists of a questionnaire about AD, HCS designation and the relationship between physicians and cardiovascular patients. 40

The questionnaire is anonymised through a code only known by the investigators. Informed consent was obtained at the first meeting with the patient (cf. Ethical consideration). Inclusion: Cardiovascular patients scheduled for an operation for cardiovascular surgery; Age ≥ 18 years; good command of French. Before group: before surgery After group: within 1 week after surgery Exclusion: Refusal, Six-Items Screener (SIS)  3, Psychatrics symptoms Secondary Exclusion: refusal after beginning; death Number: 125 for a three-year time period (August 2009 – March 2013).

The 3 steps are detailed below. Step 1: I_PatB: Preoperative interview (Before Group) Specific Objectives of this step: To assess the reasons for writing AD or not. An additional objective is to assess the incidence of AD among patients scheduled for heart surgery and explore the extent of their knowledge and opinion. Setting: HUG wards (Geneva University Hospitals), Switzerland Measures: Each patient scheduled for a cardiovascular operation between August 2009 and March 2013 was contacted as soon as they entered the hospital (at least one day before the operation). The study was explained to each potential participant after which informed consent was obtained or not (Annex 2). Annex 3: Questionnaire aux patients en phase pré opératoire (Q_I_PatB).

Step 2: I_PatA: Postoperative interview (both groups) Before group Specific Objectives of this step: To complete information obtained in Step 1 and to assess whether patients have changed their opinion about AD and their willingness to write AD after the operation and the ICU stay. Secondary objectives are to understand how they discuss this topic with their relatives and physicians. Measures: After the operation, when the patient had left the ICU (i.e. he was on the upper floors), however not before the second day, but within a week, the patient was approached once more to respond another questionnaire (with only the EuroQoL, the HADS and the SIS in common). A precaution was taken by asking the nurses in charge if they think the patient was well enough to participate. Again, oral explanations were given after asking if the operation went well. The SIS was then completed before entering the questionnaire to make sure of the patient's mental capacities. At the end of the interview, the patient was asked to sign the questionnaire in order to validate it. Annex 4: Questionnaire aux patients en phase postopératoire (Q_I_PatA).

After group patients (Q_I_PatA_B) Specific Objectives of this step: Incidence and opinion about DA - possible changes after surgery and ICU. Setting: Wards of the HUG Measures: Each patient scheduled for a cardiovascular operation between August 2009 and March 2013 was contacted when he had left the ICU (i.e. he was on the wards). The precaution was taken to ask the

41 nurses in charge if they think the patient was well enough to participate. The study was explained to each potential participant after which informed consent was obtained or not. The SIS was then completed before entering the questionnaire to make sure of the patient's mental capacities. Annex 5: Questionnaire aux patients en phase postopératoire, groupe contrôle (Q_I_PatA_B).

Step 3: I_PatW: Writing of AD Specific Objectives of this step: The primary objective is to identify the main difficulties encountered during the AD writing process. We will also try to find out the reasons for refusal. Secondarily, we will investigate how many patients wish to write AD after this type of surgery and a stay in ICU and how long after these major events they are willing to do so. Setting: Geneva's city or wards of the HUG Measures: After Step 2, the question was asked (to both Before and After groups) if the patient might be interested to write their own AD or at least to initiate the process. If yes, information was given with the brochure „Le respect de l'autonomie de la personne‟ from ProSenectute, announcing that it could take one or more appointments and occur in different places if the patient couldn't come to the hospital easily. A day was chosen between the patient and the investigator to allow him to call the patient. The writing part was done following a determined protocol (Q_I_PatW) with the above-mentioned pre- formed AD model. The possibility to write AD with the primary care physician was left to the patient if he wished so or if he waited too long for doing it with the investigator. If the patient refused, the investigator listed his motivation (totally freely, without a questionnaire or else a few questions). Fabienne Gigon, the main investigator was trained and certified as a helper for writing AD (Annex 6). Annex 7: Procédure de rédaction de DA (Q_I_PatW).

Tools Validated tools Cognitive tool: We use the Six-Items Screener (SIS)227, as a validated short form for the MMSE (Mini-Mental State Examination)228-230, validated in its French version231. A score of less than 3 will exclude the patient from the study, since this may indicate that the patient is not competent232. The cut-off point of 3 corresponds to 3 mistakes in the SIS method and to a score of 20 to 22 in the MMSE which is considered enough for participation in the study, according to previous studies in acute situations228,231. A cut-off point of 3 in the SIS corresponds to a mean value of 22.4 in the MMSE for a community-based sample, and a mean value of 20.6 for an Alzheimer's Disease Centre sample227 (see Annex 8). Hospital Anxiety and Depression Scale (HADS)233,234 to measure the patients‟ state of mind at the time of completion of the questionnaire. It is highly important to know more about the patients‟ emotions at this moment. This tool has been validated in French235,236 and also in the ICU, for families237. A score of more than 8 is considered significant (the subscale scores range from 0 (no distress) to 21 (severe distress)237 (see Annex 9) ).

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Health related quality of life: EuroQoL (Eq-5D)238,239, also validated in its French version240. This tool has been preferred to a short version of the SF-36 (like the SF-12241), because of the many overlaps between the latter and the HADS. The face-to-face version has also been validated242 (see Annex 10). Quality of Communication (QOC) in its 13-items form243 allows assessing the communication between the patient and his primary care physician or his cardiologist. We made the French translation, as it has not been yet validated in this language (see Annex 11).

Locally developed questionnaires The questions exploring AD were developed locally according to the existing literature and a list of potential reasons constituted after free discussions of the investigator with 6 caregivers, 4 family members of investigators, 2 acquaintances and 4 patients until saturation of items.

Brochure of information on AD For our third step, we provided to the patient the brochure „Le respect de l'autonomie de la personne‟, written by ProSenectute Suisse, 2nd ed., 2007.

Data collection Demographic characteristics: age, gender, nationality, studies, occupation, job type, civil status, number of children, confession and outcome. Clinical data: comorbidities, previous surgery, scheduled for surgery, duration of the ICU stay, SAPS, death, number of medications. Questionnaires were completed by the investigator either in the patient's room or in a quiet place. Except for the HADS and the EuroQoL, the investigator read the questions aloud and wrote down the responses. All questionnaires were kept confidential. The data was transferred anonymously though a key code, relating names to numbers attributed via a chronologic order of the screening to patients. Only the investigators have access to the codes.

Ethical consideration Informed consent: It was obtained the day before surgery for the patients of the Before group and within a week after surgery for the patients of the After group (Annex 12). The patient was informed of the proposition of participation to the study to the family member. For psychological reasons, in order to avoid the burden of many thoughts and worries before major surgery for the Before group, we only mentioned orally the second step of this study without detailed explanations. The signature on the second questionnaire ascertained the consent. The informed consent was obtained one week after surgery for the After group and the families. Risks: This study respected the patient autonomy and was totally physically non invasive. The potential psychological burden was difficult to anticipate. However, the general trend in the society and legislation is to propose discussion about AD at least in this type of clinical situation. Thus, we tested the feasibility of such procedure beforehand. The moment chosen to propose the questionnaire was the least harmful possible, in accordance to Dr. Murith, the local‟s referee in cardiovascular surgery, and others165.

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Statistical considerations For the statistical analysis, StatView for Windows version 5.0.1 ® (SAS Institute Inc., Cary, NC, USA) and Stata Statistical Software, Release 8.0 ® (Stata Corporation, College Station, TX, USA) will be used. All tests will be two tailed and a p value less than 0.05 will be considered statistically significant. Results will be expressed as mean ± standard deviation (SD), if not specified otherwise. The study was designed with two goals: - In order to precise a prevalence of AD with a Confidence Interval (CI) of not more than 10%, with a predicted AD prevalence of about 10%. In this case we would need more than 30 patients. - In order to detect a clinically significant increase in the AD prevalence between the two randomized groups, with a hypothesized prevalence in the lower group (After group) of 15% and an increase in the Before group of 10% (total 25%), we would need 113 patients per group with a power (beta) of 80% and an alpha of 0.05. We decided therefore to include 250 patients, considering a potential loss in the patients follow up of 10%. 250 patients were therefore randomized via a computer-generated randomization table with concealed, opaque envelopes. The surgery types will be analysed separately to determine their influence. Data will be compared in „intention to treat‟, by Student‟s t-test for continuous and Fisher‟s exact test for categorical variables. Ordinal data or non normally distributed continuous data will be compared by Mann- Whitney U test. Multiple comparisons will be done by a one way analysis of variances (ANOVA) with Bonferroni's correction for continuous variables. We will further create a multivariate logistic model in order to identify factors independently associated with the prevalence of AD and to assess an adjusted effect of the two groups (Before vs After group). In the univariate analyses, factors for the prevalence of AD will also be evaluated, as appropriate. Odds ratios (OR) with 95% confidence intervals will be calculated considering all patients to estimate the effect size of risk factors associated with the presence of an AD. Multiple logistic regressions will then be performed to obtain adjusted estimates of the ORs, and to identify factors independently associated with the presence of an AD. All significant predictors at a 0.05 alpha level in the univariate analysis will be entered into the model of the multivariate analysis together with the group (Before vs After group). To evaluate model calibration, we will perform a Hosmer-Lemeshow goodness-of-fit test. The predictive accuracy of the multivariate model will be expressed as area under the receiver operating characteristic curve. The curve represents the relationship between corresponding values of sensitivity and specificity with all possible values of probabilities as a cut-off point to predict the presence of an AD.

Insurances: Even if this project relies only on interviews and that the risks could be considered as negligible, we contracted the institutional insurance, as promulgated by the law at that time. Approval: This project was approved by the Head of ICU Pr Jean-Claude CHEVROLET and of the Head of Cardiovascular Surgery Pr Afksendiyos KALANGOS. Then, it was approved by the new Head of ICU, Pr Laurent BROCHARD. Pilot Study: To assess the feasibility of our study and the patient‟s welcoming of the interviews questions, we processed to a pilot study. We approached 6 peripheral cardiovascular patients according to the same protocol described presently. 3 were assigned to the After group, 3 to the Before one.

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Protocol II: Relatives’ study

Specific Objectives: To determine what a close relative of patients who undergo a major cardiovascular surgery think about AD. To understand how he manages this topic with the patient.

Methodology Setting: HUG wards, Switzerland

Population: We wanted to investigate the opinion of next-of-kin of patients undergoing heart surgery and other major vascular surgeries, in parallel with them (either Before or After Group). Study design: Interviews of family members or next-of-kin within a week after surgery of the patient (Step 2 of the Protocol I). Measures: A questionnaire about AD and HCS designation was fulfilled from August 2009 to March 2013 via interview done by the investigator at the time the patient left ICU and was transferred to the wards (cf. Protocol I Step 2).

Annex 13: Questionnaire au proche du patient en phase postopératoire (Q_II_Fam).

Tools: The same tools were used as in Protocol I. There were not different questions, but the questions were adapted for the close relatives' situation.

Data collection: No clinical or health information was required for this study from the relative, besides the questionnaires.

Ethical consideration Informed consent: It was obtained within a week after surgery of the patients (Annex 14). The close relative was informed of the participation of the patient to the study. Risks: Same as in Protocol I.

Statistical considerations: Same as in Protocol I. Insurances: Even if this project relied only on interviews, and that the risks could be considered as negligible, we contracted the institutional insurance, as promulgated by the law at that time. Approval: This project was approved by the Head of ICU Pr Jean-Claude CHEVROLET and of the Head of the service of Cardiovascular Surgery Pr Afksendiyos KALANGOS. Then, it was approved by the new Head of ICU, Pr Laurent BROCHARD.

45

6. Results of the study of advance directives and physicians „Health is too important to be left only to physicians.‟ N. Daniels, B. Kennedy and I. Kawachi (2000).

Physicians and advance directives – Submitted article244 Physicians‟ perspectives on advance directives in elective cardiovascular surgery

Fabienne Gigon, Paolo Merlani*, Bara Ricou Abstract

Background: Advance directives (AD) were developed to enhance patient autonomy and self- determination. When patients are incompetent, they can help physicians take decisive medical decisions.

Aim: The objective of the study was to investigate physicians‟ perspectives and attitudes toward them.

Design: Observational study by self-administered questionnaires.

Setting/participants: General practitioners and specialists potentially involved in the care of patients scheduled for major cardiovascular surgery in Geneva area.

Results: 164 (40%) questionnaires were completed. Men: 116 (71%). Specialties: Internists: 73 (45%);

General Practitioners: 50 (31%); Intensivists: 22 (13%); Cardiologists: 18 (12%).

22/160 (14%) physicians had never heard about AD, especially men.

138/162 (85%) physicians thought that AD were useful. 124/161 (77%) were ready to help patients write

AD in order to allow them to decide on their fate {115/124 (93%)} and to increase their ease in expressing their wishes {108/124 (87%)}. Men and cardiologists were least likely to think that AD were useful and to help write them. Reasons for not helping were: topic can induce fear {21/34 (62%)} or unease {16/34

(47%)}, and lack of knowhow {15/34 (44)}. Physicians‟ requirements for respecting AD did not always match the law.

Conclusions: Not all physicians knew the concept of AD. The majority thought that AD were useful and would help patients write them, in order to respect their autonomy and to increase their ease in expressing their wishes. A minority thought that the topic might induce fear and be harmful. This study shed some light on potential ideas to increase the prevalence of AD.

Keys words: Critical illness, decision making, intensive care, ethics, law

Background

International interest for advance directives (AD) emerged three decades ago with strong promotion of the ethical principles of patient autonomy and self-determination.1 Patients have the right to decide on their care preferences. It is widely accepted that a close relation can express an incompetent patient‟s presumed

46 or previously expressed wishes in order that these be respected. However, the wishes of critically ill patients are poorly known by next-of-kin.2 AD are possible responses to such difficulties and are recognized by law – first in the USA with the 1991 Patient Self-Determination Act (PSDA).3 In Europe,

AD have not developed uniformly, either in different jurisdictions or in practice.4-10

In Switzerland, most cantons have included AD in their legislation and a federal law was recently passed.11

The number of requests for admitting terminally ill patients into intensive care units is increasing.12 If such patients had had the opportunity to write AD, a number of them may have preferred to benefit from palliative care rather than suffer overly technical treatments in intensive care units. Furthermore, since AD may facilitate decision-making and redirection of care, AD may help avoid futile medical treatment.13-15

Despite this potential interest, the reported percentages of people who possess AD are low. The difficulties related to the practical implementation of the concept have been reported.1, 16-18 However, the reasons of this lack of success have not been sufficiently studied. In particular, little is known about physicians‟ perspectives of AD, their knowledge of it, and their desire to help their patients write AD.

We hypothesized that physicians might not be involved enough in establishing AD with their patients. To verify this hypothesis, we focused on the specific situation of physicians involved with patients scheduled for major cardiovascular surgery. This context was interesting because of the vital nature of such surgery and the strong emotional associations expressed despite a very low mortality rate.19

This study‟s objectives were to explore physicians' views on the concept of AD in the special context of major cardiovascular surgery and the reasons leading them to help patients write AD or not.

Design

After a review of the literature, a questionnaire exploring the concept of AD was developed locally by 3 intensive care physicians, 3 certified intensive care nurses, and 3 lay persons according to a modified

Delphi method. It was tested for comprehension and readability with a further 10 physicians. Certain questions were rated on a 5-item Likert scale and demographic data were asked for at the end of the questionnaire (cf. Appendix 8 p.72).

The study population consisted of general practitioners, internists, intensivists, and cardiologists in Geneva,

Switzerland. These doctors were chosen because of the high probability that they would be taking care of patients scheduled for major cardiovascular surgery. In April 2009, they were mailed a letter explaining the study, the questionnaire itself, and a prepaid envelope to return it in. All questionnaires were kept

47 anonymous. A code allowed the investigators to send reminders two, four, and six months later, as necessary.

Ethical approval

The protocol was approved by the Geneva University Hospitals Ethics Committee (NAC 09-001). The return of the questionnaire was considered as informed consent.

Statistical analysis

We used StatView for Windows, version 5.0.1 ® (SAS Institute Inc., Cary, NC, USA). All tests were two- tailed, and a p value less than 0.05 was considered statistically significant. Results from the 5-item Likert scale were analyzed joining two categories in order to enhance readability to 3 final categories (True-

Somewhat true vs. Neither true nor false vs. False-Somewhat false). Data were compared using univariate logistic regression (categorical variables). Results are expressed as odds ratios (OR), confidence intervals

(95% CI), and p values as (OR (95% CI) p).

Results

Of 409 questionnaires sent, 172 were returned (42%), with 164 filled out completely (40%). The personal and professional characteristics of the respondents and their personal experience of severe illness or of a close relative‟s severe illness are summarized in Table 1. Physicians aged above 40 years old were associated with physicians who had more than 20 years of experience (OR: 37.333 (95% CI: 9.777 to

142.563) p≤0.0001), who worked in private practice (2.66 (1.168 to 6.060) p=0.02), and who had experienced severe illness (personally: 4.505 (1.007 to 20.0) p=0.05, of a relative: 3.704 (1.144 to 12.048)

0.03).

Table 2 summarizes the sources of physicians‟ information about advance directives (AD), their opinions about their usefulness, their desire to help patients write AD, their opinions about the study‟s usefulness, as well as the conditions necessary for valid AD. A greater proportion of physicians younger than 40 years old

(5.848 (2.075 to 16.393) p=0.0008), or with less than 20 years of professional experience (6.711 (2.299 to

19.608) p=0.0005), had learned about AD during medical school. A greater proportion of physicians with more than 20 years of (professional) experience had learned about AD through literature (9.078 (1.176 to

70.068) p=0.03).

Physicians who had never heard about AD were more frequently male (10.39 (1.360 to 79.620) p=0.02). A smaller proportion of those who had never heard about AD considered them to be useful than those who

48 had heard about them (0.274 (0.097 to 0.775) p=0.02), and would be less likely to help a patient write AD

(0.263 (0.101 to 0.682) p=0.006). The reasons for helping patients write AD or not are summarized in

Table 3. Physicians who had never heard about AD did not think that they would increase patients‟ ease in expressing their wishes (0.129 (0.034 to 0.494) p=0.003) or that they would avoid the patients‟ feeling that they were being a burden (0.227 (0.063 to 0.826) p=0.02). However, they would help patients write AD if they lacked trust in the relatives (4.065 (1.116 to 14.706) p=0.03) or in hospital physicians (4.444 (1.250 to

15.873) p=0.02).

The chief characteristics associated with the physicians who had written their own AD (Table 1) were not being natives of French-speaking Switzerland (4.926 (1.726 to 14.058) p=0.003) and having experienced a personal severe illness themselves (5.85 (2.071 to 16.528) p=0.0009). The highest proportion of physicians who had written AD came among general practitioners {11/48 (23%)}, followed by cardiologists {3/17

(18%)}, intensivists {2/21 (10%)}, and finally internists {2/69 (3%)}. A smaller proportion of physicians who had their own AD thought that AD should be done by a competent person (0.241 (0.084 to 0.689) p=0.008), and a larger proportion thought that AD should be written as soon as possible (4.049 (1.364 to

12.048) p=0.01), or when one is leading a hazardous lifestyle (2.882 (1.045 to 7.937) p=0.04). A greater proportion of physicians with their own AD thought that AD relieve physicians of decisions (2.976 (1 to

8.85) p=0.05). A physician‟s possession of AD was not statistically associated with the opinion that AD were useful, nor with the willingness to help patients write AD.

Female physicians were more likely to consider that AD were useful (5.495 (1.239 to 2.439) p=0.02).

Cardiologists were the least likely group to admit the potential usefulness of AD (internists: 0.228 (0.07 to

0.741) p=0.01, generalists: 0.214 (0.06 to 0.767) p=0.02, and intensivists: 0.157 (0.028 to 0.891) p=0.04).

No correlation was found between physicians‟ expressed usefulness of AD and age, personal experience of severe illness or the fact of having discussed AD with some patients prior to the study.

Female physicians were positively associated with a willingness to help patients write AD (3.401 (1.235 to

9.346) p=0.02). Again, cardiologists were the group least likely to help patients write AD (general practitioners: 0.226 (0.072 to 0.709) p=0.01, internists: 0.166 (0.054 to 0.507) p=0.002, and intensivists:

0.126 (0.027 to 0.585) p=0.008).

Those who thought that AD were useful were significantly more likely to help patients write them (4.931

(1.954 to 12.445) p=0.0007).

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The reasons for helping patients write AD or not, summarized in Table 3, are given in detail in the online data supplement E1. Lack of trust in relatives or hospital physicians was rarely a reason for helping patients write AD. Stating that promoting AD was a reason to help patients write AD had no correlation with having previously discussed AD with patients, but was associated with considering the present study useful

(2.777 (1.222 to 6.309) p=0.05). Stating that a lack of knowhow was an obstacle in helping patients write

AD was also associated with thinking that the study was useful (6.286 (1.294 to 30.543) p=0.02). Reasons for not helping, such as “AD will not be respected anyway”, “the decision does not belong in human hands”, “lack of time” or “no adequate remuneration” were not significantly associated to any physician characteristic.

The best moments to write AD, from the physicians‟ points of view, are summarized in Table 2. A greater proportion of physicians younger than 40 years old thought that AD should be written at end-of-life (2.304

(1.02 to 5.208) p=0.05).

The criteria considered as necessary for the recognition of valid AD documents are summarized in Table 2, as well as their adequacy with current local and Federal laws. Proportionately fewer physicians in public hospitals thought that a signature was necessary (0.332 (0.134 to 0.825) p=0.02). Physicians younger than

40 years old were more likely than older physicians to think that AD should contain the patient‟s general attitudes towards care (2.381 (1.012 to 5.587) p=0.05).

Discussion

A surprising finding was that as many as one in eight physicians had never heard of AD.10,20 The physicians who had never heard about AD were more likely to be men, and less likely to consider that AD were useful or to help patients write AD. They thought that AD would not enhance the ease with which patients could express their wishes or lessen the feeling of being a burden.

Respondents above 40 years old certainly qualified at a time when AD were not taught in medical schools, and they learned about them from medical literature. However, although younger physicians learned about

AD during their medical school, this did not seem to encourage them to implement or encourage AD; thus, ways of promoting AD among physicians should be reconsidered. The media were under-represented as a stated source of information on AD, which raises the question of whether this means could be better exploited for their promotion.

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Only one in ten physicians had their own AD. Although this prevalence seems poor, the number is similar to previous data from intensive care or internal medicine physicians in other countries.21 The percentage of

AD among physicians in other medical specialties, such as oncology, was higher and associated with older age and more experience with cancer patients.22 In the present study, the factors associated with the possession of one‟s own AD were the origin, the medical specialty and a personal experience of a severe illness. The physicians who had their own AD were more likely than others to think that the best time to write them was either as early as possible or when someone lead a hazardous lifestyle, as well as in order to relieve physicians of decisions. Surprisingly, they did not think that AD were more useful or help patients write them any more than physicians who had not written their own AD.

Another relevant finding was that as many as four in five physicians thought that AD were useful and were ready to help a patient write AD. This high proportion exceeds previous findings.21,23 In the current study, male physicians were more likely to think that AD were not useful and to be less willing to help patients to write them. The specialists least likely to recognize the usefulness of AD and to help patients write them were cardiologists. The hypothesis that physicians who had experienced a severe illness themselves might favor the promotion of AD could not be confirmed.

The reasons which led physicians to encourage patients write AD or not, were particularly interesting.

Indeed, the sparse literature on the topic reports such difficulties as a lack of time to discuss AD, a perceived low health-literacy of patients and patients‟ good health.18,22 In the present study, lack of time was only cited by a minority of respondents. The major reasons for refraining help dealt with fear and unease. These were in line with a recent survey of German health care professionals – fears about the purposes of AD and possible abuses were identified, as well as physicians‟ unease in discussing AD and non-compliance.24 Fear and unease can also be related to such myths as “AD must comply with specific legal forms” or “AD govern all future decisions, even if the patient has his or her capacity.25 As a part of the process of finding solutions to solve such issues and to help reduce physicians‟ fears, closer collaboration between bioethicists, lawyers and physicians may be helpful.25,26 Another important result was that the lack of knowhow was an obstacle for almost one in ten respondents, which is in line with the findings of a recent report.27 In response to the above mentioned need to improve medical knowledge about

AD, the teaching of specific skills dealing with communication and advance care planning might help future physicians feel more at ease with these practices.28,29 As alternative solutions, delegation of such skilled tasks to a trained advisor or to a palliative care team have been suggested.29, 30 Another source of

51 unease for physicians was the possibility that patients would change their mind, as was reported in previous studies.9,20 Computer programs generating renewed AD were reported to offer good consistency over time.31,32 Finally, the fear that AD would not be respected was another obstacle. Possibly religious-inspired thoughts that end-of-life decision-making did not belong in human hands were not often expressed; nor was the lack of remuneration for helping patients write AD. For a great majority of respondents, the reasons for helping patients write AD were the respect of their autonomy to decide on their fate and the willingness to support them in expressing their choices. More than three in five physicians thought that AD would relieve relatives of decisions, which is in line with previous findings.9 Physicians did not distrust relatives or hospital colleagues in general. The high number of respondents who were willing to help patients write AD in order to promote the concept, may underline that physicians see AD as a tool with the potential to improve patient care.

Physicians‟ perceived “right time” to write AD varied greatly; however, a trend in the responses seemed to be to encourage patients not to wait until the last minute.

Even though some discrepancies were identified between physicians‟ opinions and the law‟s requirements, a great majority of respondents converged towards what could be defined as the minimal requirements regarding AD: a dated document, written and signed by a competent patient. It was surprising that a non- negligible proportion of physicians considered that the competency criterion was not necessary. Most physicians did not consider specific circumstances. Physicians working in private practice seemed to favor the signature of AD. Respondents held a variety of views regarding whether AD should describe a general, overall attitude towards treatment or whether they should list and consider specific treatments. Younger physicians favored a more general attitude towards AD. This finding is similar to some previously published ideas, opening the path to advance care planning – i.e. values and goals of treatments should be addressed first rather than bearing in mind precise situations or procedures.29,33 Thus, when considering

AD, a physician‟s role might be to support patients by helping translate their broad choices for treatment into clinical practice.34

Limitations

Our study presents several limitations. First, the 40% response rate was low. Such a participation rate is, however, not rare with physicians.9,35,36 We cannot exclude a bias that the respondents were more favorably predisposed to AD and that non-respondents would have answered differently. However, a significant proportion of respondents did not think that AD were useful, and as many as a third of respondents

52 answered that the study itself was not useful, but they nonetheless returned the questionnaire. Due to the study‟s design, the reasons for refusal to participate could not be established. Pointers might be taken from the comments returned: some stated that the questionnaire itself was too long or that it was difficult to make an opinion for oneself. Second, the study examined the specific situation surrounding cardiovascular surgery and may not address more general ones. However, half of the questions did not focus on any specific type of patient, and the reasons evoked by physicians for helping patients write AD or not, can apply to any patient. Third, these results come from a selection of physicians in Geneva, Switzerland, and might not be representative of other places or countries. The literature concerning patients and their attitudes towards AD shows that cultural differences do play a role. Similar differences might also play a role among physicians37-39 However, Geneva is known to be a very multicultural city, as are its practicing physicians, and this might enhance the credibility of our original findings.

Conclusion

Not all physicians knew the concept of advance directives (AD) but the majority thought that AD were useful and would personally help patients write AD in order to respect their autonomy and to increase their ease in expressing their wishes for care. However, a minority thought differently, suggesting that the topic might induce fear and be harmful. Some discrepancies were identified between what physicians‟ considered to be the necessary requirements for recognizing AD and what the law sets out. This overview of physicians‟ opinions shed some light on potential ideas to increase the prevalence of AD, such as a better use of the media or a greater emphasis at medical school – these should be further investigated.

Studies on the opinions of patients and relatives would complement current understanding of the complexity of implementing AD in practice. Integrating all this data may help elaborate future advance care planning.

Acknowledgments

The authors are grateful to Ms. Solène Gouilhers, Ms. Marie-Maude Morin and Ms. Fabienne Scherer for their help.

Authors’ contributions: FG designed the study, collected the data, performed the statistical analysis and wrote the article. PM participated in the study design and helped perform the statistical analysis, the data interpretation and the manuscript revision. BR participated in the study design and helped interpret the data and write the article. All authors read and approved the final manuscript.

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Tables Table 1. Personal and professional characteristics of physicians and their personal experience of severe illness or that of a close relative.

n/total (%) Age > 40 years old 115/147 (78) Male 116/164 (71) Origin French-speaking Switzerland 127/155 (82) Marital status In a couple° 118/152 (78) Have children Yes 134/155 (86) Religion Christian 100/155 (65) Religion is important Yes 101/152 (66) Specialty Internist 73/163 (45) General practitioner 50/163 (31) Intensivist 22/163 (13) Cardiologist 18/163 (12) Years of practice > 20 years 137/157 (87) Type of practice Private vs. public 121/164 (74) Location of medical school French-speaking Switzerland 139/157 (89) Had patient with cardiovascular surgery the previous year 118/158 (80) Had discussion about advance directives with cardiovascular patients 61/118(52) Has experienced Severe illness 30/156 (19) Severe illness of a relative 144/156 (92) Has advance directives himself 18/156 (12)

° In a couple vs. Alone (divorced, widower, single, separated)

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Table 2. Sources from which physicians had been informed about advance directives, their opinion about the usefulness of advance directives, desire to help the patient write advance directives, opinion on the study‟s usefulness, as well as the conditions for valid advance directives.

Sources of information about advance directives n=160* n %° From patients/colleagues/friends 69 43 Post-medical school courses 67 42 Medical journals 46 29 Never heard about advance directives 22 14 During medical school 21 13 Media/Internet 20 13

Advance directives are useful n=162* 138 85

Would help patients write advance directives n=161* 124 77 The study is useful n=154* 103 67 The optimal moment to establish advance directives n=163* n %° When experiencing a severe illness (comorbidities) 93 57 Before major surgery 69 42 The soonest possible 68 41 At end-of-life 50 30 When leading a hazardous lifestyle 39 24 Before intensive care units admission 32 20 At ≥ 55 years old 41 25 At ≥ 65 years old 29 18 At ≥ 75 years old 30 18 At ≥ 85 years old 2 1 Conditions for valid advance directives n=160* n %° Process Written document 144 90 Dated document 142 89 Signed document 137 86 The person is competent 127 79 Signature of a witness 44 28 Content General attitude towards care 88 55 List of treatments wished for or not 73 46 Specific circumstances considered 60 38 Post-mortem information 54 34 Criteria in adequacy with the Swiss federal law# 53 33 Criteria in adequacy with the health law of Geneva+ 32 20 “Minimal requirements” criteria§ 107 67

*The total number varies because of missing data; °Percentage do not sum to 100 because more than one answer could be chosen. #Requirements (art.370 CC)11: written, dated, signed by a competent person and contains a list of treatments. +Requirements (art.47-48 K 1.03)40: written, done by a competent person, contains a list of treatments, and circumstances considered. §Criteria chosen by around 80% of respondents: written, dated, and signed by a competent person.

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Table 3. Physicians‟ reasons for and against helping patients write advance directives.

True False Somewhat Somewhat Missing True false data Reasons for helping n=124 n (%)* n (%)* n To allow the patient to decide on his or her fate 115 (93) 0 6 To increase the patient‟s comfort in expressing his or her wishes 108 (87) 4 (3) 8 To avoid the patient feeling that he or she was being a burden 101 (81) 8 (6) 6 To let the patient express his or her wish to stay alive at any cost 97 (78) 10 (8) 9 To relieve relatives of decisions 82 (66) 19 (15) 12 To promote advance directives 74 (60) 16 (13) 13 To relieve physicians of decisions 49 (40) 46 (37) 15 Lack of trust in relatives 9 (7) 83 (67) 15 Lack of trust in hospital physicians 6 (5) 94 (76) 15

Reasons against helping n=34 n (%)* n (%)* n The topic may induce fear 21 (62) 3 (9) 8 The topic may induce unease 16 (47) 12 (35) 6 Lack of knowhow 15 (44) 8 (24) 7 The physicians should decide 12 (35) 9 (26) 8 Advance directives may not reflect the wishes of the patient 12 (35) 10 (29) 9 when needed Other solutions are better than advance directives 2 (6) 6 (18) 12 Advance directives can be harmful 10 (29) 11 (32) 8 Has not thought enough about advance directives 10 (29) 12 (35) 9 Lack of time 10 (29) 13 (38) 8 No adequate remuneration 5 (14) 13 (38) 9 The relatives should decide 10 (29) 14 (41) 6 Advance directives will not be respected anyway 7 (21) 14 (41) 9 The decision does not belong in human hands 4 (12) 17 (50) 9 Advance directives are not necessary 5 (15) 18 (53) 7 To let the patient express his or her wish to stay alive at any cost 9 (26) 19 (56) 6

*The total number varies because the “Neither true nor false” and “Don‟t know” responses are not shown (see online data supplement E1).

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1. Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med 2001;29:N34-9. 2. Cohen S, Sprung C, Sjokvist P, et al. Communication of end-of-life decisions in European intensive care units. Intensive Care Med 2005;31:1215-21. 3. American Bar Association. Health Care Advance Directives: What is the Patient Self- Determination Act, http://www.abanet.org/publiced/practical/patient_self_determination_act.html. 4. Franchitto N, Vinour H, Gavarri L, et al. End-of-life patients, intensive care and consent: difficulties facing French intensivists. Eur J Anaesthesiol 2007;24:709-13. 5. Groarke JD, Gallagher J, McGovern R. An observational study on perspectives and understandings of doctors, nurses and general public on in-hospital cardiopulmonary resuscitation attempts. Eur J Intern Med 2008;19. 6. Jox RJ, Borasio GD. [Advance directives, powers of attorney and end-of-life decisions]. MMW Fortschr Med 2008;150:33-4, 6. 7. Samanta A, Samanta J. Advance directives, best interests and clinical judgement: shifting sands at the end of life. Clin Med 2006;6:274-8. 8. Wiedermann CJ, Druml C. End-of-life decisions in Austria's intensive care units. Intensive Care Med 2008;34:1142-4. 9. van Oorschot B, Simon A. Importance of the advance directive and the beginning of the dying process from the point of view of German doctors and judges dealing with guardianship matters: results of an empirical survey. J Med Ethics 2006;32:623-6. 10. Simon-Lorda P, Tamayo-Velazquez MI, Barrio-Cantalejo IM. Advance directives in Spain. Perspectives from a medical bioethicist approach. Bioethics 2008;22:346-54. 11. Swiss Civil Code (The Patient Decree), http://www.admin.ch/opc/en/classified- compilation/19070042/index.html#a370. 12. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470-7. 13. Ferrand E, Robert R, Ingrand P, et al. Withholding and withdrawal of life support in intensive-care units in France: a prospective survey. French LATAREA Group. Lancet 2001;357:9-14. 14. Rodriguez KL, Young AJ. Perceptions of patients on the utility or futility of end-of-life treatment. J Med Ethics 2006;32:444-9. 15. Sibbald R, Downar J, Hawryluck L. Perceptions of "futile care" among caregivers in intensive care units. CMAJ 2007;177:1201-8. 16. Grimaldo DA, Wiener-Kronish JP, Jurson T, et al. A randomized, controlled trial of advanced care planning discussions during preoperative evaluations. Anesthesiology 2001;95:43-50; discussion 5A. 17. Mezey MD, Leitman R, Mitty EL, et al. Why hospital patients do and do not execute an advance directive. Nurs Outlook 2000;48:165-71. 18. Ramsaroop SD, Reid MC, Adelman RD. Completing an advance directive in the primary care setting: what do we need for success? J Am Geriatr Soc 2007;55:277-83. 19. Roques F, Nashef SA, Michel P. Regional differences in surgical heart valve disease in Europe: comparison between northern and southern subsets of the EuroSCORE database. J Heart Valve Dis 2003;12:1-6. 20. Grinberg M, Chehaibar GZ. Living wills. Arq Bras Cardiol 2012;99:1166. 21. Schaden E, Herczeg P, Hacker S, et al. The role of advance directives in end-of-life decisions in Austria: survey of intensive care physicians. BMC Med Ethics 2010;11:19. 22. Go RS, Hammes BA, Lee JA, et al. Advance directives among health care professionals at a community-based cancer center. Mayo Clin Proc 2007;82:1487-90. 23. Torke AM, Moloney R, Siegler M, et al. Physicians' views on the importance of patient preferences in surrogate decision-making. J Am Geriatr Soc 2010;58:533-8. 24. Evans N, Bausewein C, Menaca A, et al. A critical review of advance directives in Germany: attitudes, use and healthcare professionals' compliance. Patient Educ Couns 2012;87:277-88. 25. Meisel A, Snyder L, Quill T. Seven legal barriers to end-of-life care: myths, realities, and grains of truth. JAMA 2000;284:2495-501.

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„As a well spent day brings happy sleep, so a life well spent brings happy death.‟ L. Da Vinci (1452 – 1519)

7. Conclusions The global findings of the research project on advance care planning are awaited to help shed light on the factors that influence the attitudes of patients, their family members and physicians towards advance directives (AD) and the health care decision maker (HCS). Once the responses of the patients and their relatives will be entirely analysed, they will be compared to the responses of physicians in order to assess matching answers between the groups. Results should allow better understanding of the reasons why AD or HCS‟ designation are so difficult to implement in the clinical arena, while the theoretical concepts are so attractive. The aim is to find targets on which the various disciplines concerned might join their effort to solve the difficult problem of favouring the respect of patient autonomy.

Many strategies have been proposed to enhance patient autonomy by the use of AD. Practical help could be sought in electronic medical record245 and diagrams for improving advance care planning246, but a key aspect to help promote AD is the physicians‟ and health care professionals‟ education42,149. Physicians are encouraged to first rely on patients‟ preferences, and not on other medical or personal factors247. Interestingly, in the study, some physicians seem to feel the burden of taking medical decisions for their patients on the one hand, and on the other hand, some express an unease that could possibly come from the physician-patient change of paradigm, i.e. from taking the responsibility of decisions for patients (paternalism) to respect the patients‟ expressed autonomy. Nowadays, the current general trend favours a patient-centred advance care planning focusing more on the process leading to the drafting of AD than on the written document itself20,165,181,224,225,248-250. What matters is the patients‟ consciousness of their autonomy and that they should start thinking, even discussing about end-of-life (EoL) matters with their family and/or doctors. Moreover, improving satisfaction with global EoL care seems to be the best way to enhance shared decision-making among patients, surrogates and physicians135,162,251,252. „A shift from legalistic documents toward a comprehensive, ongoing dialogue and process‟ may be preferable249.

A substantial question is to ascertain whether AD have special interests to protect, in particular when one comes from another cultural or religious background. Indeed, some findings reported that origin and religion do matter in EoL decisions178,179,253. In fact, AD could be seen as a tool for self-defense facing some personal threats regarding self-determination and the way one wants to be taken care of. Thus, AD could express a lack of trust towards the medical area and towards one‟s own family (see the consequence on next-of-kin of the new federal law on tutelage in the followings). Indeed, the idea that one might not agree with the care received (disagreement principle) underlies the writing of AD. This can be challenging for people outside any medical setting, since they don‟t always know what kind of problem they might be embedded in (emphasizing the paramount importance of information in the physician-patient relationship).

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Regarding the poor prevalence of AD and HCS in Switzerland, one might ask if the Swiss law isn‟t ahead of the population regarding patients‟ wishes for advance care planning. The federal law doesn‟t make the writing of AD or the designation of a HCS compulsory, but a list of „designated next-of-kin‟ for decision-making is now given. Ignorance of the law is no excuse. The state should help people be aware of the law. That is why information to patients is crucial, but also to the general public, since next-of-kin are now bound by the law to act as surrogate. Of course, one may refuse that role; however, the majority would certainly be deeply concerned by the state of their beloved and would thus put in all efforts to play the most adequate role. The question if these surrogates are aware of the possible responsibility they might need to endorse, and also of their right to refuse to act as a surrogate is a field for research. Hence, politics should be coherent with the promulgated federal law regarding advance care planning and help the public to be aware of their rights. No major campaign of information for the population on a federal level has been done yet. The State should have the means to spread information on the concept of advance care planning. For instance, even though it wasn‟t followed by an increase in organ allocation, the neutral national campaign for organ allocation after the implementation of the federal law ruling it was successful in informing people in a totally impartial way. A similar campaign on AD matters could help fight the taboo around EoL and eventually increase the number of people with their mind set on these subjects. Then, the hypotheses that each use of the new insurance card to a primary care physician could count as an AD update, and that routine question to patients about AD at hospital admission or to a new primary care physicians could help raise awareness of AD, need to be ascertained by the results of the project. The question whether it would help improve AD accessibility and would therefore be a motivation for people to write AD and for physicians to promote them – having the guaranty that AD are always available – needs further investigation. Regarding the HUG, a distinctive mark for patients having AD might improve the medical files, as it is for example the case for the MRSA-positive marks, which appear in red on every page of the patient‟s file. Whatever the staff shifts, this would allow all caregivers to be aware of the existence of AD.

Maybe these hypotheses will be successful in removing the many described barriers impeding better implementation of AD in the clinical arena. Yet, when one looks at the whole medical literature on advance care planning, two facts are surprising. First, it is amazing how many reviews and articles are related to the many aspects of advance care planning42,254. Then, it is astonishing to see for how long (around a quarter of a century) the topic has been discussed, and even more that the debates and issues have changed so little. A possible explanation for this might be that advance care planning is a core human subject, related to feelings and values, touching every sentient being at the heart. It may also be because the taboo surrounding death is so huge that it can‟t be addressed, even indirectly through AD. Besides, societal changes take long to occur and need sometimes more than just one generation, as could be illustrated by the changes in the physician-patient relationship. Thus, efforts in communication regarding advance care planning, whether by the politics, physicians or other health-related professionals are worth carrying on.

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Calls for training the population to take the right decisions already existed in ancient Greece regarding democracy, given that people were sometimes recognized to be ignorant and/or lazy at reasoning11. Is it ignorance that impedes people to engage in an advance care planning? Then society would have the responsibility to educate people. This would be true both for societal and personal choices. Would it be laziness at reasoning? Even though the inherent difficulties of advance care planning are considerable in terms of anticipation and imagination, a key factor, as said above, seems to be fear about EoL, fear to speak of it, fear about death. People certainly delude themselves, as shown by Tolstoï in „The death of Ivan Illitch‟: „The syllogism he had learnt from Kiesewetter's Logic: "Caius is a man, men are mortal, therefore Caius is mortal," had always seemed to him correct as applied to Caius, but certainly not as applied to himself.‟ How to improve ease with EoL issues and death needs to be further investigated. For health matters, this has to be done alongside with the demolition of the illusion of an all-mighty medicine.

If autonomy meant for a philosopher of the Enlightenment to give oneself rules and to submit individual will to the general will for the community‟s best interests, leading to universal laws, the Anglo-Saxon autonomy refers to self-determination as a negotiation and contracts to exist among the others‟ self- determination49. It is the way autonomy is understood nowadays and what underpins the concept of AD. However, to some extent, autonomy has been seen as an end and not as means to provide patients with the best care. In the medical setting, the shared decision-making comes as equilibrium between an extreme beneficence (paternalism) and an extreme autonomy, where the patient might sometimes feel lost. One may question whether AD really favour the patients‟ autonomy. Once the postulate of identity continuity is accepted80, once the right, the liberty to refuse a treatment or to write AD is accepted, once the shared decision-making model is warranted, then yes, it seems that AD is up to date the best means to favour the patients‟ autonomy. As stated earlier, it is hard work to make them effective, but it is still possible. Maybe AD are superfluous for some, maybe for the majority – which would explain the low prevalence of AD despite many efforts promoting them – but they prove useful for others, and these people deserve to be informed and led in the necessary steps the best possible way.

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8. Appendices

Abbreviations Advance directives (AD) University Hospitals of Geneva (HUG) Cardiovascular resuscitation (CPR) Intensive care unit (ICU) Do not attempt resuscitation (DNAR) Not to be resuscitated (NTBR) Do not resuscitate (DNR) Swiss Civil Code (CC) End-of-life (EoL) Swiss Penal Code (SPC) Healthcare surrogate decision maker (HCS)

Death and Life, 1916, Gustav Klimt (1862-1918)

62

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Appendix 2 – Extracts of international advance directives rules

Declaration on the promotion of patients' rights in Europe of the World Health Organisation‟s (WHO) (www.who.int/), 1994 Extracts: 3.3 When a patient is unable to express his or her will and a medical intervention is urgently needed, the consent of the patient may be presumed, unless it is obvious from a previous declared expression of will that consent would be refused in the situation. 3.7 In all other situations where the patient is unable to give informed consent and where there is no legal representative or representative designated by the patient for this purpose, appropriate measures should be taken to provide for a substitute decision making process, taking into account what is known and, to the greatest extent possible, what may be presumed about the wishes of the patient.

The Oviedo Convention is the short name for the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, known also as the Convention on Human Rights and Biomedicine (4.IV.1997) Extracts: Art.6 – Protection of persons not able to consent 3. Where, according to law, an adult does not have the capacity to consent to an intervention because of a mental disability, a disease or for similar reasons, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or body provided for by law. The individual concerned shall as far as possible take part in the authorisation procedure. 4. The representative, the authority, the person or the body mentioned in paragraphs 2 and 3 above shall be given, under the same conditions, the information referred to in Article 5. 5. The authorisation referred to in paragraphs 2 and 3 above may be withdrawn at any time in the best interests of the person concerned. Art.9 – Previously expressed wishes The previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account.

The Oviedo Convention‟s explanatory report (May 1997) Extracts: 60. Whereas Article 8 obviates the need for consent in emergencies, this article is designed to cover cases where persons capable of understanding have previously expressed their consent (that is either assent or refusal) with regard to foreseeable situations where they would not be in a position to express an opinion about the intervention. 61. The article therefore covers not only the emergencies referred to in Article 8 but also situations where individuals have foreseen that they might be unable to give their valid consent, for example in the event of a progressive disease such as senile dementia. 62. The article lays down that when persons have previously expressed their wishes, these shall be taken into account. Nevertheless, taking previously expressed wishes into account does not mean that they should necessarily be followed. For example, when the wishes were expressed a long time before the intervention and science has since progressed, there may be grounds for not heeding the patient's opinion. The practitioner should thus, as far as possible, be satisfied that the wishes of the patient apply to the present situation and are still valid, taking account in particular of technical progress in medicine.

Recommendations of the European Council, 1999 Extracts: Rec (99)4E 23 February 1999, Strasbourg, from the Committee of Ministers to Member States on Principles Concerning the Legal Protection of Incapable Adults, an Introduction in Particular to Part V, Interventions in the Health Field. Principle 27 – Applicability of certain principles applying to measures of protection

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2. In particular, and in accordance with principle 9 (Respect for wishes and feelings of the person concerned), the previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes should be taken into account. Rec 1418(1999) 25 June 1999, Strasbourg, from the Parliamentary Assembly of the European Council about the Protection of the human rights and dignity of the terminally ill and the dying. 9. The Assembly therefore recommends that the Committee of Ministers encourage the member states of the Council of Europe to respect and protect the dignity of terminally ill or dying persons in all respects: b. by protecting the terminally ill or dying person‟s right to self-determination, while taking the necessary measures: iv. to ensure that a currently incapacitated terminally ill or dying person‟s advance directive or living will refusing specific medical treatments is observed. Furthermore, to ensure that criteria of validity as to the scope of instructions given in advance, as well as the nomination of proxies and the extent of their authority are defined; and to ensure that surrogate decisions by proxies based on advance personal statements of will or assumptions of will are only to be taken if the will of the person concerned has not been expressed directly in the situation or if there is no recognisable will. In this context, there must always be a clear connection to statements that were made by the person in question close in time to the decision-making situation, more precisely at the time when he or she is dying, and in an appropriate situation without exertion of pressure or mental disability. To ensure that surrogate decisions that rely on general value judgements present in society should not be admissible and that, in case of doubt, the decision must always be for life and the prolongation of life; [However] vi. to ensure that in situations where an advance directive or living will does not exist, the patient‟s is not infringed upon. A catalogue of treatments which under no condition may be withheld or withdrawn is to be defined.

Appendix 3 – Swiss law

Swiss Civil Code (CC): (http://www.admin.ch/opc/en/classified-compilation/19070042/index.html#a370)

Art. 27 B. Protection of legal personality I. Against excessive restriction 1 No person may, wholly or in part, renounce his or her legal capacity or his or her capacity to act. 2 No person may surrender his or her freedom or restrict the use of it to a degree which violates the law or public morals.

[…]

Subsection Two: The Patient Decree

Art. 370 A. Principle 1 A person who is capable of judgement may specify in a patient decree which medical procedures he or she agrees or does not agree to in the event that he or she is no longer capable of judgement. 2 He or she may also designate a natural person who in the event that he or she is no longer capable of judgement should discuss the medical procedures with the attending doctor and decide on his or her behalf. He or she may issue instructions to this person. 3 He or she may issue alternative instructions for the event that the designated person is not suitable for the tasks, does not accept the mandate or terminates the mandate.

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Art. 371 B. Execution and revocation 1 The patient decree must be executed in writing, and be dated and signed. 2 Any person who has executed a patient decree may have this fact and the place where it is kept entered on his or her health insurance card. The Federal Council shall issue the required provisions, in particular on the access to the data. 3 The provision on revoking an advance care directive applies mutatis mutandis.

Art. 372 C. Loss of capacity of judgement 1 If the patient lacks capacity of judgement and it is not known if there is a patient decree, the attending doctor shall ascertain the position from the health insurance card. The foregoing does not apply to urgent cases. 2 The doctor shall comply with the patient decree unless it violates statutory regulations or there is reasonable doubt that it is based on the patient's free will or still corresponds to his or her presumed will. 3 The doctor shall make a note in the patient records of any reasons why the patient decree was not complied with.

Art. 373 D. Intervention by the adult protection authority 1 Any person closely related to the patient may contact the adult protection authority in writing and claim that: 1. the patient decree is not being complied with; 2. the interests of the patient are being endangered or no longer safeguarded; 3. the patient decree is not based on the patient's free will. 2 The provision on intervention by the adult protection authority in the case of an advance care directive applies mutatis mutandis.

[…]

Sub-Section Two: Representation in relation to Medical Procedures Art. 377 A. Treatment plan 1 If a person lacking capacity of judgement has not given instructions on treatment in a patient decree, the attending doctor shall plan the required treatment in consultation with the person entitled to act as representative in relation to medical procedures. 2 The doctor shall inform the representative about all the important aspects of the planned medical procedures, and in particular about the reasons therefore, their purpose, form, methods, risks, side effects and costs, the consequences of not carrying out the treatment and any alternative treatment options. 3 If possible, the person lacking capacity of judgement shall also be involved in making the decision. 4 The treatment plan shall be adapted to ongoing developments.

Art. 378 B. The representative 1 The following persons are entitled in the following order to represent the person lacking capacity of judgement and to grant or refuse consent to the planned out-patient or in-patient measures: 1. a person appointed in a patient decree or in an advance care directive; 2. a deputy with a right to act as representative in relation to medical procedures; 3. any person who as a spouse or registered partner cohabits with the person lacking capacity of judgement or who regularly and personally provides him or her with support; 4. any person who cohabits with the person lacking capacity of judgement or who regularly and personally provides him or her with support; 5. issue who regularly and personally provide the person lacking capacity of judgement with support; 6. the parents, if they regularly and personally provide the person lacking capacity of judgement with support; 7. siblings, if they regularly and personally provide the person lacking capacity of judgement with support.

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2 If two or more persons have the right to act as representative, the doctor, acting in good faith, may require that each act with the agreement of the others. 3 If a patient decree contains no instructions, the representative shall decide according to the presumed wishes and interests of the person lacking capacity of judgement.

Art. 379 C. Urgent cases In urgent cases, the doctor may carry out medical procedures according to the presumed wishes and interests of the person lacking capacity of judgement.

Art. 380 D. Treatment of a mental disorder The treatment of a mental disorder of a person lacking capacity of judgement in a psychiatric hospital is governed by the provisions on care-related hospitalisation.

Art. 381 E. Intervention by the adult protection authority 1 The adult protection authority shall establish a representative deputyship if there is no representative available or the representative does not wish to exercise the right to act. 2 It shall appoint a representative or establish a representative deputyship if: 1. it is unclear who has a right to act as representative 2. the persons with a right to act as representative are unable to agree; or 3. the interests of the person lacking capacity of judgement are endangered or no longer safeguarded. 3 It shall act at the request of the doctor, another closely associated person or ex officio.

Extracts of cantonal regulations on AD [in French]

Genève Loi sur la santé (K 1 03) (http://www.geneve.ch/legislation/rsg/f/rsg_k1_03.html)

Art. 47 Choix libre et éclairé - Directives anticipées Principes 1 Toute personne informée, capable de discernement, peut rédiger des directives anticipées sur le type de soins qu‟elle désire recevoir ou non dans des situations données où elle ne serait plus en mesure d‟exprimer sa volonté. 2 De même, toute personne peut par avance désigner un représentant thérapeutique pour prendre en son nom les décisions de soins si elle venait à perdre le discernement. Le représentant thérapeutique choisi doit alors recevoir les informations nécessaires conformément à l‟article 45 et pouvoir accéder au dossier du patient aux conditions de l‟article 55 de la présente loi. 3 Les directives anticipées peuvent être modifiées ou annulées à tout moment par leur auteur.

Art. 48 Choix libre et éclairé - Directives anticipées Effets 1 Le professionnel de la santé doit respecter la volonté que le patient a exprimée dans des directives anticipées, pour autant que ce dernier se trouve dans une situation qu‟elles prévoient. 2 Lorsque le professionnel de la santé a des raisons de penser que les directives anticipées ne correspondent plus à la volonté actuelle du patient ou qu‟il existe un conflit d‟intérêt entre le patient et le représentant qu‟il a désigné, il doit saisir l‟autorité tutélaire.

Art. 49 Choix libre et éclairé - Personne incapable de discernement 1 Si le patient est incapable de discernement, le professionnel de la santé doit rechercher s‟il a rédigé des directives anticipées ou désigné un représentant. A défaut, le professionnel de la santé doit obtenir l‟accord du représentant légal après lui avoir fourni les informations nécessaires conformément à l‟article 45 et lui avoir permis d‟accéder au dossier médical. En l‟absence de représentant légal, le professionnel de la santé s‟adresse aux proches afin de déterminer la volonté présumée du patient.

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2 Lorsque la décision du représentant choisi par le patient ou du représentant légal met en danger la santé du patient, le professionnel de la santé peut saisir l‟autorité tutélaire. 3 A titre exceptionnel, soit en cas d‟urgence ou dans l‟attente de la désignation d‟un représentant légal, le professionnel de la santé doit agir conformément aux intérêts objectifs du patient, en tenant compte de la volonté présumée de celui-ci.

Jura Loi sanitaire (810.01, entrée en vigueur de ces articles le 1er avril 2007) (http://rsju.jura.ch/extranet/groups/public/documents/rsju_page/loi_810.01.hcsp)

Art. 26b Directives anticipées et représentant thérapeutique 1. Principe 1 Toute personne capable de discernement peut rédiger des directives anticipées sur le type de soins qu‟elle désire recevoir ou non dans des situations données où elle ne serait plus en mesure d‟exprimer sa volonté. 2 Toute personne qui n‟a pas déjà un représentant légal peut, de la même manière, désigner un représentant thérapeutique chargé de se prononcer à sa place sur le choix des soins à lui prodiguer dans les circonstances décrites à l‟alinéa premier. Les relations entre la personne concernée et son représentant thérapeutique sont régies par les règles du contrat de mandat gratuit. 3 Les directives anticipées peuvent être modifiées ou annulées à tout moment par leur auteur sans limitation de forme.

Art. 26c 2. Effets 1 Chaque dispensateur de soins doit respecter la volonté que le patient a exprimée dans des directives anticipées, si ce dernier se trouve dans une situation qu‟elles prévoient. 2 Si le patient a désigné un représentant thérapeutique, le dispensateur de soins doit lui fournir les informations nécessaires conformément à l‟article 26 et obtenir son accord. 3 Lorsque le dispensateur de soins est fondé à penser que les directives anticipées ne correspondent plus à la volonté actuelle du patient ou qu‟il existe un conflit d‟intérêts entre le patient et son représentant thérapeutique, il doit saisir l‟autorité tutélaire. En cas d'urgence, le dispensateur de soins doit agir conformément aux intérêts objectifs du patient, en tenant compte de la volonté présumée de celui-ci.

Neuchâtel Loi de santé (800.1, du 6 février 1995) (http://rsn.ne.ch/ajour/default.html?8001.htm)

Art. 25a Directives anticipées 1Toute personne peut rédiger des directives anticipées sur les mesures thérapeutiques qu'elle entend recevoir ou non dans les situations où elle ne serait plus en mesure d'exprimer sa volonté. 2Elle peut également désigner par écrit dans ses directives anticipées un représentant qui aura la responsabilité de se prononcer à sa place sur le choix des mesures thérapeutiques à lui prodiguer dans les mêmes circonstances. 3Les professionnels de la santé doivent respecter les directives anticipées. 4En cas de conflit entre la volonté exprimée et l'intérêt thérapeutique du patient entraînant des conséquences graves pour ce dernier, le médecin doit saisir l'autorité tutélaire.

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Valais Loi sur la santé (800.1) (http://www.vs.ch/Home2/EtatVS/vs_public/public_lois/fr/LoisHtml/800.1.htm)

Art. 20 Directives anticipées: a) principes 1 Chacun peut rédiger des directives anticipées sur le type de soins qu'il désire recevoir ou non dans des situations données où il ne serait plus en mesure d'exprimer sa volonté. 2 De la même manière, chacun peut désigner une personne qui aura la responsabilité de se prononcer à sa place sur le choix des soins à lui prodiguer dans les mêmes circonstances.

Art. 21 b) effets 1 Le professionnel de la santé doit respecter la volonté du patient exprimée dans des directives anticipées si ce dernier se trouve dans une situation qu'elles prévoient. 2 Le professionnel de la santé doit obtenir l'accord de la chambre des tutelles s'il sait que les directives anticipées ne correspondent plus à la volonté actuelle du patient ou s'il existe un conflit d'intérêts entre le patient et la personne qu'il a désignée conformément à l'article 20 alinéa 2 de la présente loi. L'article 33 alinéa 3 de la présente loi est réservé.

Vaud Loi sur la santé publique (800.01) (art. 23a, 23b, 23c) (http://www.rsv-fic.vd.ch/print-800.01.pdf)

Art. 23a b) Directives anticipées - Principes 13 1 Toute personne capable de discernement peut rédiger des directives anticipées sur le type de soins qu'elle désire recevoir ou non dans des situations données où elle ne serait plus en mesure d'exprimer sa volonté. Elle doit les rendre facilement accessibles aux professionnels de la santé. 2 Toute personne qui n'a pas déjà un représentant légal peut de la même manière désigner un représentant thérapeutique chargé de se prononcer à sa place sur le choix des soins à lui prodiguer dans les circonstances décrites à l'alinéa premier. Les relations entre la personne concernée et son représentant thérapeutique sont régies par les règles du contrat de mandat gratuit. 3 Les directives anticipées peuvent être modifiées ou annulées à tout moment par leur auteur, sans limitation de forme.

Art. 23b Effets 13 1 Chaque professionnel de la santé doit respecter la volonté que le patient a exprimée dans des directives anticipées si ce dernier se trouve dans une situation qu'elles prévoient. 2 Si le patient a désigné un représentant thérapeutique, le professionnel de la santé doit lui fournir les informations nécessaires conformément à l'article 21 et obtenir son accord. 3 Lorsque le professionnel de la santé est fondé de penser que les directives anticipées ne correspondent plus à la volonté actuelle du patient ou qu'il existe un conflit d'intérêt entre le patient et son représentant thérapeutique, il doit saisir l'autorité tutélaire.

Art. 23c c) Personne incapable de discernement 13 1 Si le patient est incapable de discernement, le professionnel de la santé doit rechercher s'il a rédigé des directives anticipées ou désigné un représentant thérapeutique. En l'absence de telles directives ou de représentant thérapeutique, le professionnel de la santé doit obtenir l'accord de son représentant légal ou, à défaut, recueillir l'avis de ses proches après leur avoir fourni les informations nécessaires conformément à l'article 21. 2 Lorsque la décision du représentant thérapeutique, respectivement du représentant légal, met en danger la santé du patient, le professionnel de la santé peut recourir à l'autorité tutélaire. 3 En cas d'urgence ou en l'absence d'un représentant légal, le professionnel de la santé doit agir conformément aux intérêts objectifs du patient, en tenant compte de la volonté présumée de celui-ci.

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Fribourg Loi sur la santé (821.0.1) (http://www.fr.ch/v_ofl_bdlf_courant/fra/82101.pdf)

Art. 49 b) Directives anticipées aa) Principes 1 Toute personne peut rédiger des directives anticipées sur le type de soins qu‟elle désire recevoir ou non dans des situations données où elle ne serait plus en mesure d‟exprimer sa volonté. 2 Toute personne peut également désigner dans des directives anticipées une personne qui aura la responsabilité de se prononcer à sa place sur le choix des soins à lui prodiguer dans les mêmes circonstances. Cette personne doit recevoir les informations nécessaires conformément à l‟article 47. 3 Les directives anticipées peuvent être modifiées ou annulées à tout moment par leur auteur-e, sans limitation de forme.

Art. 50 bb) Effets 1 Le ou la professionnel-le de la santé doit respecter la volonté que le patient ou la patiente a exprimée dans des directives anticipées si ce dernier ou cette dernière se trouve dans une situation qu‟elles prévoient. 2 Lorsque le ou la professionnel-le de la santé est fondé-e de penser que les directives anticipées ne correspondent plus à la volonté actuelle du patient ou de la patiente ou qu‟il existe un conflit d‟intérêt entre le patient ou la patiente et la personne qu‟il ou elle a désignée pour le ou la représenter, il ou elle doit saisir l‟autorité tutélaire.

Art. 51 c) Personne incapable de discernement 1 Si le patient ou la patiente est incapable de discernement, le ou la professionnel-le de la santé doit rechercher s‟il a ou si elle a rédigé des directives anticipées. En l‟absence de telles directives, le ou la professionnel-le de la santé doit obtenir l‟accord de son représentant légal ou, à défaut, recueillir l‟avis de ses proches après leur avoir fourni les informations nécessaires conformément à l‟article 47. 2 Lorsque la décision du représentant légal met en danger la santé du patient ou de la patiente, le ou la professionnel-le de la santé peut recourir à l‟autorité tutélaire conformément à la loi d‟organisation tutélaire. 3 En cas d‟urgence ou en l‟attente de la désignation d‟un représentant légal, le ou la professionnel-le de la santé doit agir conformément aux intérêts objectifs du patient ou de la patiente, en tenant compte de la volonté présumée de celui-ci ou celle-ci.

Berne Loi sur la santé publique (811.01, teneur du 6. 2. 2001) (http://www.sta.be.ch/belex/f/)

Art. 40b 3.3 Dispositions des patients et des patientes 1 Si une personne a manifesté oralement ou par écrit, alors qu'elle était capable de discernement, le désir ou le refus de se voir administrer des mesures thérapeutiques au cas où elle deviendrait incapable de discernement, le professionnel ou la professionnelle de la santé doit en tenir compte dans la mesure où le droit le permet. 2 Tout individu peut désigner par anticipation la ou les personnes dont il faudra prendre l'avis et auxquelles il conviendra d'exposer les mesures à prendre au cas où il ne serait plus capable de discernement. 3 Les dispositions prises par anticipation ne lient plus le professionnel ou la professionnelle de la santé lorsqu'il ou elle apprend que le patient ou la patiente a changé d'avis.

Art. 40c 4. Dispositions d'exécution Le Conseil-exécutif édicte des dispositions d'exécution concernant les droits et les devoirs des patients.

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Appendix 4 – About the new Swiss federal law on tutelage

A. Some details on the debates about the new law on tutelage

The modifications on the subject of AD were carried out by the councilor Wicki Franz to the Council of States, which approved the whole new law on 27th September 2007, unanimously by 23 votes to 0. The few proposed modifications (writing issues) were then approved by the Federal Councilor Christoph Blocher. The law was then evaluated by the National Council (on 2nd-3rd October 2008), which wanted some modifications on matters other than on the AD dispositions. It was back to the Council of State (debated on 4th December 2008), and back again to the National Council (on 11st December 2008) before being adopted by both Councils on 19th December 2008.

All debates can be found on the following page of the Swiss parliament website: http://www.parlament.ch/f/suche/pages/legislaturrueckblick.aspx?rb_id=20060063

B. Extract of the Federal Council‟s Message [in French]

Message du 28 juin 2006 concernant la révision du code civil suisse (Protection de l'adulte, droit des personnes et droit de la filiation) (FF 2006 6635) Le droit actuel de la tutelle du code civil suisse (art.360 à 455 CC) n‟a pas subi de modifications importantes depuis son entrée en vigueur en 1912, à l‟exception des dispositions sur la privation de liberté à des fins d‟assistance (art.397a à 397f CC). Ne répondant plus à nos besoins ni aux conceptions actuels, il est nécessaire de le réviser totalement. L‟un des buts de la révision est de favoriser le droit de la personne de disposer d‟elle-même. A cet effet, le chapitre intitulé «Des mesures personnelles anticipées» (art.360 à 373) propose deux nouvelles institutions. Il s‟agit premièrement du mandat pour cause d‟inaptitude, qui permet à une personne capable de discernement de charger une personne physique ou morale de lui fournir une assistance personnelle, de gérer son patrimoine ou de la représenter dans les rapports juridiques avec les tiers au cas où elle deviendrait incapable de discernement. Il s‟agit deuxièmement des directives anticipées du patient, qui permettent à une personne capable de discernement, d‟une part, de déterminer les traitements médicaux auxquels elle entend consentir ou non au cas où elle deviendrait incapable de discernement et, d‟autre part, de désigner une personne physique qui aura la compétence de consentir en son nom à un traitement médical, également pour le cas où elle deviendrait incapable de discernement. Actuellement, l‟aide apportée à une personne incapable de discernement, temporairement ou durablement – par exemple vers la fin de sa vie –, est pragmatique et repose sur différents systèmes. Le nouveau droit de la protection de l‟adulte tient compte du fait que les proches de la personne incapable de discernement souhaitent prendre eux-mêmes certaines décisions, sans l‟intervention d‟une autorité. La solidarité familiale s‟en trouve renforcée et l‟autorité ne doit pas instituer systématiquement une curatelle. Certains des proches sont habilités – sur le modèle de quelques lois cantonales – à consentir ou non à des soins médicaux (art.378), pour autant qu‟il n‟existe pas de directives anticipées du patient. Sont réservées les réglementations spéciales, comme celles dans les domaines de la stérilisation, de la médecine de la transplantation et de la recherche. En outre, le projet accorde au conjoint et au partenaire enregistré de la personne incapable de discernement le droit d‟ouvrir son courrier, d‟assurer l‟administration ordinaire de ses revenus et de ses autres biens et d‟entreprendre tous les actes juridiques généralement nécessaires pour satisfaire ses besoins ordinaires (art.374).

The whole Message is available here [in French]: http://www.admin.ch/opc/fr/federal- gazette/2006/6635.pdf

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Appendix 5 – National and international associations of interest related to health

The Swiss Academy of Medical Sciences (SAMS)79 was founded in 1943 by the existing Swiss medical and veterinary faculties, as well as the Swiss Medical Assocation „Foederatio Medicorum Helveticorum‟ – FMH (www.fmh.ch). It has its headquarters in Basle and is a member of the Swiss Academies of Art and Sciences – SAAS (www.swiss-academies.ch/‎). Though the SAMS guidelines enacted by its Central Ethics Commission are not legally binding (they are for physicians members of the FMH), the SAMS is recognized by the Swiss Confederation as an influent deontological code – and the law refers to it as an „Institution for the promotion of research‟ (cf. LERI, art.4 al.2 let.a chif. 2 ; LR art.10). Outside Switzerland, the SAAS, and thus the SAMS, are part of the non-governmental organization CIOMS (Council for International Organizations of Medical Sciences - www.swiss-academies.ch/‎, founded by the OMS and UNESCO).

Regarding assisted-suicide, two associations are concerned: EXIT and Dignitas, the latter even for non-resident people in Switzerland.

Appendix 6 – Palliative care unit diagram about advance directives [in French]

EMS – Etablissement Medico-Social (homes for the elderly); DPI – Dossier Patient Intégré (patient care file) ; EMASP – Equipe mobile antalgie et soins palliatifs (Mobile team for analgesia and palliative care)

Groupe DA, F. GOURVEST et al. DRG, 2008

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Appendix 7 – Information on advance care planning in the HUG

A. „Green form‟ [in French] Replaced by the front page of the DPI (Dossier Patient Intégré) files (see below).

Overview of the DPI files‟ front page (for a patient without AD, but with a CPR and ICU indication).

B. The board of directors‟ Directive on AD [in French]

Here is the header of the 2013 version of the board of directors‟ Directive on AD.

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Appendix 7 – Information on advance care planning in the HUG (continuation)

C. Patient Guide (Version 2013) – Extracts

Section „Your rights‟ (p.19) Respect for your wishes Apart from emergencies, no treatment or examination will be undertaken without your free and informed consent. You have the right to reflect before reaching a decision, and to review your decision later. To be sure that your wishes are respected, you can draw up a living will (see page 20), in case you lose the capacity for rational decision-making or are in a coma. These instructions state what types of care you accept or refuse in a given situation. You can also appoint a healthcare representative to take decisions about you if you are no longer able to do so. Where applicable, the doctor appointed will contact your relatives, in a predetermined order, to suggest a treatment plan and obtain informed consent. However, in the event of an emergency, the doctor will provide the necessary medical care in accordance with your presumed wishes and best interests.

Representing a relative Relatives of patients whose capacity for rational decision-making is diminished can represent them and consent to treatment on their behalf. The aim is to reinforce family solidarity and relieve the judicial authorities of responsibility. The list of relatives and order of precedence are set out in the Swiss Civil Code (art. 378 CC).

How do I draw up a living will (p.20) If you would like to write a living will, visit our website http://directivesanticipees.hug-ge.ch or ask the healthcare staff in your unit. You can amend or cancel a living will at any time. We recommend that you make sure it is accessible to the nursing staff by integrating it in your computerized medical file. If there is reason to believe that it no longer reflects your present wishes, or that there is a conflict of interest between you and your healthcare representative, your doctor will refer the matter to the Tribunal de protection de l‟adulte et de l‟enfant (court of protection for adults and children). To find out more, request the brochure Rédiger vos directives anticipées (Drawing up your advance instructions).

Patient's Charter (p.18) Patients have a role and say in their treatment HUG seeks to involve patients in all decisions affecting them, and to proceed with their cooperation. HUG will inquire whether a living will exists, and will abide by it.

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Appendix 8 – Study physicians’ questionnaire [in French]

Questionnaire aux médecins

Nous vous remercions de prendre le temps de remplir ce questionnaire. Les abréviations suivantes seront utilisées : Directives Anticipées (DA) et Représentant thérapeutique (RT). Plusieurs coches/croix par réponses sont possibles, sauf lorsque précisé autrement. Sentez-vous libre de passer une question si elle vous déplaît.

1. Où avez-vous reçu des informations sur les DA et le RT pour la première fois ? DA RT DA RT DA RT Amis/connaissances Internet Formation continue Journaux/revues scientifique Patients Etudes de médecine Médias Collègues Jamais Autre (préciser) :……………………………………………………………………………………….

2. Quand pensez-vous qu'il soit utile d'établir des DA ? Quand on mène une vie à risque Avant un passage aux Soins Intensifs Lorsqu'on est gravement malade (co-morbidités) Le plus tôt possible Avant une opération importante En fin de vie

A partir d'un certain âge/ans : 0 ≥ 55 ≥ 65 ≥ 75 ≥ 85 Autre (préciser) : ……………………

3. Quels sont pour vous les critères nécessaires pour l'application sur le terrain des DA et du RT ? DA RT Rédigé / Consigné par écrit…...... ……...... Daté..……...... ……...... ……...... ……………….... Signé..……...... ……...... ……...... ……...... Faites/désigné par une personne capable de discernement……...... Situation circonstanciée envisagée………...……...... Signature d'un témoin….……...... ……...... ……...... Liste de traitements souhaités ou non (médication, intubation, nutrition, etc.)….. Informations post-mortem (enterrement, obsèques, célébration, etc.).………….. Attitude générale et/ou objectifs de traitement/soins…………………………….. Autre (préciser) :…………………………………………………………………………………………

4. Parmi les brochures proposées par ces associations, laquelle utilisez-vous ? OSP Caritas Anthrosana HUG/Médiane FSA Dignitas Dialog Ethik La Main tendue FMH Voluntas Pro Senectute Pro Mente Sana Exit Autre (préciser) : ……………………………………………………...

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5. D'une manière générale, quelle est la proportion de vos patients avec lesquels les En pourcents : DA/RT sont abordés ? 0 ≤ 10 ≤ 25 ≤ 50 ≤ 75 ≤ 100

6. Combien de vos patients ont subi une chirurgie cardiaque Nombre : 0 ≤ 5 ≤ 10 ≤ 20 > l'an passé ? 7. Avec combien d'entre eux ce sujet des DA/RT a-t-il été abordé ?

Et maintenant… Dès à présent, les questions concernent uniquement le cas d'un patient potentiel dont vous vous ! occuperiez, et qui doit subir une chirurgie cardiaque (valve, pontage coronarien, etc.).

8. Lorsque vous parlez des thématiques suivantes avec ce patient, quelle/s terminologie/s utiliseriez- vous de préférence ? Directive anticipée Testament vital Disposition de fin de vie Testament biologique Testament de vie Autre Représentant thérapeutique Personne de confiance Autre 1Ordres de réanimation DNR NTBR CPR DNAR Autre

9. Pour ce patient, qui devrait engager une conversation au sujet des DA/RT ? (une seule réponse svp) Le cardiologue L'interniste Le membre de la famille Le chirurgien L'infirmier à domicile Le prêtre/curé Le généraliste L'assistant social Autre (préciser) :……..…… L'intensiviste Le conjoint (partenaire de vie)

10. Avec qui pensez-vous qu'il devrait les écrire ? (une seule réponse svp) Le cardiologue L'interniste Le membre de la famille Le chirurgien L'infirmier à domicile Le prêtre/curé Le généraliste L'assistant social Autre (préciser) :……..…… L'intensiviste Le conjoint (partenaire de vie)

11. Demanderiez-vous à votre patient : S'il possède des DA Oui Non S'il possède un ou plusieurs RT Oui Non Si oui : Si oui : Qui les détient Son/leurs coordonnée/s Leur lieu de dépôt si formulées par écrit S‟il en a discuté avec d'autres personnes Une copie pour le dossier médical Si elles sont encore actuelles S‟il en a discuté avec d'autres personnes

1 CPR : CardioPulmonary Resuscitation ; DNR : Do Not Resuscitate ; DNAR : Do Not Attempt Resuscitation ; NTBR : Not To Be Resuscitate

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Directives Anticipées Les questions concernent toujours le cas d'un patient potentiel dont vous vous occuperiez, et qui doit ! subir une chirurgie cardiaque (valve, pontage coronarien, etc.).

12. Les DA sont utiles. Faux Un peu faux Ni vrai ni faux Un peu vrai Vrai Ne sais pas 13. Etabliriez-vous des DA avec ce patient ? Oui → Q14. Non → Q15.

14. OUI : Pourquoi ?

Faux faux peu Un faux ni vrai Ni vrai peu Un Vrai pas sais Ne Le patient doit pouvoir exprimer son désir de rester en vie à tout prix Pour décharger les médecins hospitaliers des décisions Pour décharger ses proches des décisions Par manque de confiance envers les médecins hospitaliers qui vont le

prendre en charge Par manque de confiance envers ses proches Cela peut rassurer le patient de dire ce qu'il souhaite Le patient doit pouvoir décider de son sort Le patient doit pouvoir exprimer son désir de ne pas être un poids Promouvoir les directives anticipées

Autre chose vous est-il venu à l'esprit ? ………………………………………………………………… Si non : → Q16.

15. NON : Pourquoi ?

Faux faux peu Un faux ni vrai Ni vrai peu Un Vrai pas sais Ne Le patient doit pouvoir rester en vie à tout prix. Le sujet dérange. Les directives anticipées ne seront plus adaptées au moment où il en

aura besoin. Le sujet induit la peur / l'appréhension. C'est mieux de laisser les médecins décider. C'est mieux de laisser ses proches décider. Ce n'est pas nécessaire. De toute façon, elles ne seront pas respectées. Les directives anticipées peuvent faire du mal. Ce n'est pas à nous humains de décider. D‟autres solutions sont mieux que les DA. Je manque de temps. Je n'y ai pas encore assez réfléchi. Je manque de formation. Je n'ai pas de rémunération adéquate (tarifs TarMED).

Autre chose vous est-il venu à l'esprit ? ………………………………………………………………… 77

Et encore…

16. Selon vous, dans quelle mesure les affirmations

suivantes sont-elles vraies ou fausses ?

faux ni vrai

Faux faux peu Un Ni vrai peu Un Vrai pas sais Ne Indiquer l'existence de DA sur le questionnaire patient lors de la première consultation sensibiliserait le patient au sujet des DA. Indiquer l'existence de DA à chaque mention de changements d'adresse sensibiliserait le patient au sujet des DA. Des informations sur les DA (existence, etc.) devraient figurer sur les lettres d'accompagnement des patients d'un médecin à l'autre. Il est souhaitable que la rédaction de DA fasse objet de discussions entre le patient et ses proches.

Carte d'assuré

17. Avez-vous entendu parler de la nouvelle carte d'assuré qui entrera en vigueur pour chaque patient d'ici à fin 2010 ? Oui Non 18. Pour vous, il est utile aux patients de pouvoir y inscrire l'existence des DA. Faux Un peu faux Ni vrai ni faux Un peu vrai Vrai Ne sais pas

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Représentant thérapeutique 19. Le représentant thérapeutique est utile. Faux Un peu faux Ni vrai ni faux Un peu vrai Vrai Ne sais pas 20. Encourageriez-vous ce patient à désigner un RT ? Oui → Q21. Non → Q22.

21. OUI : Pourquoi ?

Faux faux peu Un faux ni vrai Ni vrai peu Un Vrai pas sais Ne Le patient doit pouvoir exprimer son désir de rester en vie à tout prix Pour décharger les médecins hospitaliers des décisions Pour décharger ses autres proches des décisions Par manque de confiance envers les médecins hospitaliers qui vont le prendre en charge Par manque de confiance envers ses autres proches Cela peut rassurer le patient de dire ce qu'il souhaite Le patient doit pouvoir décider de son sort Pour n'avoir qu'une seule personne précise qui prend/aide à prendre les décisions Le patient doit pouvoir exprimer son désir de ne pas être un poids C'est une meilleure solution que les directives anticipées Le représentant thérapeutique saura faire de meilleurs choix Autre chose vous est-il venu à l'esprit ? ………………………………………………………………… Si non : → Q24.

22. NON : Pourquoi ?

Faux faux peu Un faux ni vrai Ni vrai peu Un Vrai pas sais Ne Le patient doit pouvoir rester en vie à tout prix. Le sujet dérange. La personne désignée ne soit plus son porte-parole au moment où il en aura besoin. Le sujet induit la peur / l'appréhension. C'est mieux de laisser les médecins décider. C'est mieux de laisser ses autres proches décider. Ce n'est pas nécessaire. De toute façon, ce que dira la personne ne sera pas respecté. Le représentant thérapeutique peut faire du mal. Ce n'est pas à nous humains de décider. D‟autres solutions sont mieux que le RT. Ce serait une trop lourde responsabilité confiée à une tierce personne,

à autrui. Je manque de temps. Je n'y ai pas encore assez réfléchi. Je manque de formation. Je n'ai pas de rémunération adéquate (tarifs TarMED). Autre chose vous est-il venu à l'esprit ? …………………………………………………………………

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Communication

24. Nous aimerions savoir comment vous communiquez avec vos patients concernant leur santé et les traitements qu'ils voudraient s'ils devenaient incapables de discernement. Pour nous aider à comprendre votre relation, nous vous demandons d‟être critique. Sur une échelle de 0 à 10 où 0 est le pire que vous puissiez imaginer et 10 le mieux, quel serait le chiffre adéquat pour les phrases suivantes ?

Lorsque vous parlez avec un de vos patients de sujets importants tels que la possibilité d'une maladie grave, à quel point pensez-vous parvenir à :

Le pire que vous Le mieux que vous puissiez imaginer puissiez imaginer Ne sais 0 1 2 3 4 5 6 7 8 9 10 pas Utiliser des mots qu'il comprend.

Le regarder dans les yeux.

Répondre à toutes les questions au sujet de sa maladie ou de ses traitements.

Ecouter ce qu'il a à vous dire.

Vous soucier de lui en tant que personne.

Lui donner toute votre attention.

Parler avec lui de ses sentiments concernant la possibilité de devenir plus malade. Parler avec lui des détails concernant cette possibilité de devenir plus malade. Parler avec lui de combien de temps il pourrait encore vivre. Parler avec lui de ce à quoi la mort peut bien ressembler. L'impliquer dans les décisions au sujet des traitements souhaités s'il devenait incapable de discernement. Le questionner au sujet des choses qui sont importantes dans la vie pour lui. Lui demander quelles sont ses croyances religieuses ou spirituelles. (Engelberg, R., 2006, J Palliat Med 9: 1086-98.)

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Quelques précisions vous concernant

25. Genre : Féminin Masculin 26. Age/ans : ≤ 30 ≤ 40 ≤ 60 ≤ 75 >

27. Origine : CH-Romande CH-Allemande CH-Italienne Français Autre (préciser) :…………..… 28. Statut civil : En couple Seul (Divorcé, Veuf, Célibataire, Séparé) 29. Nombre d'enfants : 0 1 2 3≥

30. Confession : Catholique Bouddhiste Musulman Ne désire pas répondre Protestant Juif Athée Autre (spécifier) : ………….… Agnostique Reformé Hindou 31. Pour vous, les aspects spirituels / religieux sont importants dans votre vie : Faux Un peu faux Ni vrai ni faux Un peu vrai Vrai Ne sais pas 32. Avez-vous déjà vécu de près la maladie grave ou le décès d'un proche ? Oui Non 33. Avez-vous personnellement déjà vécu une maladie grave ? Oui Non

34. Avez-vous personnellement des DA? Oui Non 35. Avez-vous personnellement un RT ? Oui Non

36. Spécialité : Médecin praticien Médecine intensive Cardiologie Médecine générale Médecine interne Chirurgie cardiovasculaire Médecine générale fa. gériatrie Médecine interne fa. gériatrie

37. Années de pratique (après le diplôme)/ans : ≤ 5 ≤ 10 ≤ 20 >

38. Lieu d'emploi : Cabinet HUG Clinique ou structure hospitalière 39. Où avez-vous suivi majoritairement vos études (obtention du diplôme) ? CH-Romande CH-Allemande CH-Italienne France Autre (préciser) :………………….

Fin

40. Pensez-vous qu'une telle enquête est utile ? Oui Non Ne sais pas

41. Auriez-vous des suggestions ? Des remarques ? Au sujet des DA/RT, au sujet de ce questionnaire (durée, clarté, oubli, demande, intérêt,…) ?

Un grand MERCI pour votre collaboration ! 81

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