Thesis
Reference
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.
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.
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
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 Bioethics 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
Informed consent and competence………... 23
Sleeping beauties in the USand the right to die – a brief history of advance directives…….. 23
Withdrawal (unconscious patients)...…….……….. 23
Withdrawal (conscious patients)……….………. 24
Withholding………...……….. 25
(Active) Euthanasia...………. 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
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
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.
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 Vincent Lambert 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
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.
„ 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)
‘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
„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
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
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
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
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
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.
„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
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 esilience20. B.
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.
„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 „Medical Ethics‟ 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-
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). 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
Paternalism Autonomy
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,
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.
„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.
