abstract: ABSTRACT The purpose of this thesis is to identify the key determinants of changes in the public’s perception and the historical and legal context for the current laws that govern the Right to Die in America. At its essence, the Right to Die Movement can be summarized in six selected narratives that were performed, told, debated, or reported for the public throughout history. Each of these six stories was presented with the most effective communication technologies available to the narrators in their respective eras. The thesis includes an original research study assessing the impact of a social media phenomenon on the Right to Die Movement. While the Brittany Maynard Farewell video may not have been solely responsible for the surge of public support for MAID, it certainly captured the sense of autonomy and individual rights Americans believe they have in 2014 and continuing at least through 2019. This belief in autonomy and individual rights influenced the American sense of who owns their bodies and who can control their deaths after they are given terminal diagnoses. The first key narrative introduced Natural Law and the Natural Rights that proceed from this universal law. The second opened up communication about death. The next three demonstrated to Americans what legal rights they had and which were withheld by tradition and law. The last narrative captured and embodied the American sense of autonomy and individual rights that a majority of Americans now feel they possess. The laws and policies that have resulted from the Right to Die Movement both define the boundaries of autonomy and construct an evolving understanding of human freedom. / Dissertation/Thesis / Masters Thesis Religious Studies 2020

Medical Assistance in Dying (MAiD) became legally accessible to Canadians in 2016, bringing with it significant changes to the Canadian health care landscape. With legalization of MAiD, physicians, nurses and allied health care workers had to consider their own systems of values, beliefs and their professional identity and decide whether or not they would be able to contribute to this practice or participate actively in this new medical procedure. I argue that health care professionals who participate in this practice create a professional identity that is intrinsically bound to the ethics and practice of MAiD, thus making it permissible for them to support and participate in the procedure actively. Moreover, I argue that this system of morals and beliefs has been accrued by these health care professionals across experiences and time that contribute to their capacity to participate in MAiD. Hamilton Health Sciences (HHS) was the locus for this research. HHS encompasses a network of five hospitals in the Hamilton, Ontario area. Each hospital region in Ontario has a unique staff and values, and HHS is no exception. HHS houses the Assisted Dying Resource and Assessment Service (ADRAS) group, a team of uniquely skilled MAiD providers, assessors and health professionals who service the HHS patient community. It is this group that is at the center of this research. Through interviews with members of ADRAS, I determined that values of altruism, belief in self-determination and deep respect for patients and families are central to the individual and collective identities of this group. In light of this ethical stance, members of ADRAS have crafted complex professional identities both individually and as a collective that enable them to participate in MAiD in a complete and meaningful way. / Thesis / Master of Arts (MA)

Introduction : L’entrée en vigueur de l’aide médicale à mourir (AMM) au Québec et au Canada pose la question de l’élargissement de cette prestation, notamment à des mineurs. La présence accrue des infirmières au chevet du patient les amène à recevoir des demandes liées à l’AMM. C’est pourquoi il appert pertinent de s’interroger sur leurs perceptions de ce soin pour des adolescents en fin de vie afin de mieux connaître leur opinion, de leur offrir plus d’outils et ainsi, de répondre plus adéquatement aux besoins du patient. Objectif : Le but de cette étude est d’explorer les perceptions d’infirmières œuvrant en service d’oncologie pédiatrique au regard de l’élargissement de la possibilité, pour des adolescents de plus de 14 ans, de demander l’AMM. Méthodologie : Un devis qualitatif exploratoire a été utilisé. Six infirmières œuvrant en soins oncologiques (n=3) ou palliatifs pédiatriques (n=1) ou étant en contact direct avec des adolescents en fin de vie dans le cadre de leur travail d’infirmières (n=2) ont participé à une entrevue individuelle semi-dirigée. La collecte de données et l’analyse ont été réalisées de manière simultanée en se basant sur l’analyse thématique. Résultats : Les résultats de cette recherche mettent en exergue que : 1) les infirmières reconnaissent leur rôle de soutien et leur implication dans les soins du patients en fin de vie, 2) la plupart ont une opinion professionnelle positive de l’AMM pour les adultes et distingue celle-ci de leur opinion personnelle, 3) elles apprécient les discussions autour de l’AMM pour des adolescents bien qu’elles soient préoccupées par les balises qui entoureraient ce soin, et 4) une longue expérience engageait plus de préoccupations sur l’élargissement mais aussi plus de confort à fournir des informations à ce sujet. Discussion et conclusion : Cette étude montre que les discussions autour de l’élargissement de l’AMM s’alimentent de plus en plus en soins pédiatriques de fin de vie. Cependant, des infirmières avec peu d’expérience dans ce milieu reflètent un inconfort vis-à-vis de l’AMM. Ainsi, les établissements universitaires et de santé pédiatrique doivent évaluer et répondre au besoin de formation des infirmières sur l’AMM afin de les outiller davantage face à de telles situations et ainsi, mieux répondre aux besoins de leurs patients. Mots clés : Perceptions, infirmières, soins palliatifs pédiatriques, oncologie, aide médicale à mourir, adolescents. / Introduction: With the recent introduction of medical assistance in dying (MAID) in Quebec and Canada, the extension of this health benefit, particularly to minors, is becoming increasingly important. The role and position of nurses close to patients puts them in the forefront of requests for MAID. This is why it seems relevant to examine their perceptions of this benefit for adolescents at the end of life: in order to better understand their opinions, and so to offer them more tools and thus to respond more adequately to patients' needs. Objective: The purpose of this study is to explore the perceptions of nurses working in pediatric oncology wards regarding medical aid in dying for adolescents at the end of life, in the event MAID comes into effect for this population. Methodology: An exploratory qualitative approach was chosen for this study. The sample consisted of seven nurses working in pediatric oncology (n=3) or palliative care (n=1) or who are in contact with this population in the course of their nursing work (n=2). Data collection and analysis were conducted concurrently, using thematic analysis. Results: The results of this research highlight that: 1) nurses recognize their supportive role and involvement in the care of patients at the end of life, 2) most have a positive professional opinion of MAID for adults and distinguish that from their personal, private opinion, 3) they appreciate discussions about MAID for adolescents although they are concerned about the markers that would surround this care, 4) more experienced nurses were more concerned about expanding MAID but at the same time more comfortable in providing information about it. Discussion and conclusion: This study shows that discussions about extending MAID are increasing in pediatric palliative units. However, nurses with little experience in these units reflect discomfort with MAID. Academic and pediatric health care institutions must assess the training needs of nurses regarding requests regarding MAID in order to better equip them to deal with such situations and thus better meet the needs of their patients. Key words: Perception, nurses, palliative pediatric cares, oncology, medical aid in dying, adolescents.

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Thèse réalisée en cotutelle avec l'Université de Lausanne / Cette thèse porte sur l’administration des demandes de mort à partir de deux modalités controversées, l’aide médicale à mourir au Québec (Canada) et l’assistance au suicide dans le canton de Vaud (Suisse). Au Québec, l’assistance à mourir est un service public médical, tandis que dans le canton de Vaud, elle est un acte privé toléré par l’État et mis en œuvre par des associations. Selon la façon dont la question de l’assistance à mourir est posée dans les deux contextes, différentes réponses y sont apportées qui reflètent des formes variées de concernement pour cette pratique. Je suggère que ces deux régimes contrastés d’assistance à mourir peuvent être compris dans un même mouvement analytique, malgré les différences qui les séparent. Suivant une perspective comparative et ethnographique, cette thèse explore les façons dont sont mises en œuvre les quatre conditions de possibilité de l’assistance à mourir que j’identifie, et ce à plusieurs échelles, des débats publics aux expériences immédiates des personnes directement concernées. L’enquête repose sur quatre années de recherche, croisant des entretiens, des observations, une revue de presse, ainsi que des analyses de sources documentaires. Cette thèse arrive au constat que les régimes québécois et vaudois d’assistance à mourir se rejoignent autour de maximes morales pratiques employées par les personnes concernées. Ces maximes, qui se matérialisent dans des paroles quotidiennes et des dispositifs institutionnels, encadrent le trouble suscité par l’assistance à mourir et répondent aux quatre conditions de possibilité identifiées. Cette éthique en actes balise l’espace étroit que les personnes concernées doivent naviguer pour rendre l’assistance à mourir possible. J’examine finalement ce qui guette les protagonistes, ainsi que la société, lorsque ces conditions ne sont pas réunies. Plus généralement, la comparaison de l’administration des demandes de mort dans ces deux régimes contrastés ouvre sur une interrogation des frontières de la médecine, du droit et de la vie. L’analyse des conditions de possibilité et des contours du trouble contribue également aux réflexions sur la mise en œuvre des droits, dont celui à la liberté de conscience. / This thesis is about the administration of death requests from two controversial modalities, medical aid in dying in Quebec (Canada) and assisted suicide in the canton of Vaud (Switzerland). In Quebec, assistance in dying is a public medical service, while in the canton of Vaud it is a private act tolerated by the state and implemented by associations. According to how the assistance to dying question is raised in both contexts, different answers are given which reflect different forms of concern for this practice. I suggest that these two contrasting regimes of assistance in dying can be understood in the same analytical movement despite their differences. From a comparative and ethnographic perspective, this thesis explores how the four conditions that enable the possibility of assistance in dying that I identify are put into practice at different scales, from public debates to the experiences of people who are directly involved. The research is based on four years of investigation relying on interviews, observations, a press review, and analyses of documentary sources. This thesis concludes that the assistance in dying regimes of Quebec and Vaud have practical moral maxims used by the people involved in common. These maxims, which emerge in everyday words and institutional arrangements, frame the trouble that arises from the confrontation with assistance in dying and meet the four enabling conditions identified. This ethics in action circumscribes the narrow space that the people involved must navigate to make assistance in dying possible. Finally, I examine what awaits the actors, as well as the society, when these conditions are not met. More generally, comparing the administration of death requests in these two contrasting regimes leads to questioning the boundaries of medicine, law and life itself. Analyzing these enabling conditions and the bounds of the trouble contributes to the reflections on the implementation of rights, including the right to freedom of conscience.