Bakgrund: Dödshjälp är i dagsläget olagligt i Sverige, men många andra länder har valt att legalisera det. Det finns i dag två olika former, aktiv dödshjälp går ut på att läkaren administrerar den dödliga dosen av läkemedlet samt den assisterade dödshjälpen som går ut på att läkaren skriver ut den dödliga dosen och patienten själv administrerar det. Denna litteraturstudie fokuseras på den assisterade dödshjälpen, där komplexiteten i frågan utgörs av sjuksköterskans etiska ställningstaganden, religiösa aspekter samt patientens rätt till självbestämmande (autonomi). Syfte: Syftet med studien var att sammanställa evidensbaserad kunskap om sjuksköterskans upplevelser av assisterad dödshjälp. Metod: En litteraturstudie där resultaten från 10 vetenskapliga originalartiklar med kvalitativ ansats sammanställdes. Materialet samlades in från databaserna PubMed och Cinahl. Resultat: När resultatet sammanställdes framkom tre huvudteman kommunikations betydelse, patientens autonomi och sjuksköterskans värderingar och åtta subteman. Resultatet belyser hur viktig den personcentrerade vården och teamarbetet mellan sjuksköterskan och andra professioner är vid den assisterade dödshjälpen. Sjuksköterskans motsättningar till den assisterade dödshjälpen var moraliska och etiska aspekter. Slutsats: Sjuksköterskans värderingar kunde vara en motsättning till den assisterade dödshjälpen, men de flesta sjuksköterskorna skulle inte överge sin patient oavsett om denne valde assisterad dödshjälp eller inte.

All nurses must be adequately prepared to care for individuals requesting Medical Assistance in Dying (MAiD) due to the practical, ethical, personal, and legal ramifications associated with MAiD. Nurses are both professionally and legally obligated to be knowledgeable and skilled in navigating the care of individuals requesting MAiD. This qualitative systematic review explored the knowledge and education needs identified by nurses regarding MAiD. This qualitative systematic review was conducted following the JBI methodology for systematic reviews of qualitative evidence, including critical appraisal, study selection, data extraction and data synthesis. Four themes were identified: 1) ethical and moral challenges, 2) legislation and standards, 3) communication, and 4) mandatory MAiD education. The information and practice recommendations found within this review can be used to support the knowledge and education needs of all nursing students and practicing nurses throughout Canada.

Medical Assistance in Dying (MAID) was legalized in Canada in 2016. In 2021, an update in legislation included changes to MAID eligibility and procedural safeguards. Guided by the Ottawa Decision Support Framework (ODSF), the overall aim was to describe how Canadian patients considering MAID are being supported in making the decision about end-of-life care. Eleven articles were included in the literature review. ODSF themes are evident in MAID literature. Nurses play key roles in end-of-life decision-making. Environmental scan of publicly available MAID resources identified 58 eligible resources. Sixty-nine percent of MAID resources were updated with 2021 legislation. None met the International Patient Decision Aid Standards criteria. Thirty met Patient Education Materials Assessment standard for adequate understandability and 11 for actionability. Although patient decision aids are effective for supporting health care decisions, none exist for MAID and current resources are inadequate for supporting people of lower health literacy.

In 2015, the Supreme Court of Canada ruled in the Carter decision that the prohibitions against physician-assisted dying, as outlined in section 241(b) of the Criminal Code of Canada, were unconstitutional as they violated an individual’s s.7 rights as outlined in the Canadian Charter of Rights and Freedoms. Though the jurisprudence of this landmark decision and subsequent amendments to Canadian law are interesting in and of themselves, what is particularly interesting about Carter is the framework within which physician-assisted dying is conceptualized. The Court shifts from a religiously informed framework for conceptualizing assisted suicide to a non-religious conceptualization of physician-assisted dying. Given that there remains much to be explored about nonreligion, this thesis asks: how is ‘nonreligion’ constructed by law in relation to physician-assisted dying in Canada? Since the Carter decision is not explicitly about religion or nonreligion the analysis in this thesis maps how the concepts life, death, and morality are reconceptualized. The analysis reveals that nonreligion is a phenomenon that is absent of the transcendent and is instead given positive content through a focus on autonomy. The conceptualization of nonreligion as presented in this thesis contributes to the literature that emphasizes that nonreligion is both positive and meaningful and not simply deficit terminology.

In 2016, Gray and Jones adapted the narrative policy framework (NPF) to a qualitative context. In this research, I build from their resulting Qualitative NPF (Q-NPF) method to analyze 300 randomly selected Canadian media articles published between 2007-2017 on the topic of Medical Assistance In Dying (MAID). I begin by explaining how the concrete procedures of MAID are distinct from other end-of-life practices, and introduce the terminology that will be used throughout this research. I then introduce historic and academic literature relevant to the form and content of the contemporary media narratives to be analyzed, especially drawing theoretically from Rose’s (2013) discussion of biomedical personhood discourses and Butler’s theory of unevenly distributed precarity. I then explain the methodology of qualitative narrative policy analysis (Q-NPF), and apply it to Canada’s MAID debate by dividing the policy positions into what I call the Freedom, Protection, and Fence-sitting narrative policy camps. The Freedom camp advocated for MAID legalization; the Protection camp advocated against MAID legalization; and the Fence-sitting camp avoided advocating either for or against baseline legalization of MAID, instead weighing in only on peripheral issues. I discuss the qualitative differences of narrative content specific to these three camps, highlighting the most prominent narrative trends (by frequency of publication) and discussing the ways in which these findings either accord with or contradict the expectations of the literature review. Finally, I update the reader on Canadian legislative developments since 2017 and identify how the data of 2007-2017 anticipated these developments, demonstrating the salience and predictive power of Q-NPF. I conclude by proposing new directions for potential investigation. / Graduate / 2022-12-13

Le Canada regroupe sous le terme « aide médicale à mourir » les pratiques de suicide assisté et d'euthanasie volontaire. Pratiques sujettes à débat à travers le monde depuis une vingtaine d'années, elles sont légalisées au Canada depuis 2016. En 2020, un projet de loi visant à modifier le Code criminel canadien sur les dispositions de l'aide médicale à mourir est proposé. Il est permis aux citoyens de défendre leur point de vue sur ce projet de loi. Par l'analyse de ces avis (appelés mémoires) et à l'aide de la méthodologie de la théorisation ancrée (grounded theory) formalisée par Glaser et Strauss en 1967 et reprise dans un article par Anne Laperrière (1997), trois figures du médecin praticien de l'aide médicale à mourir émergent. Il en ressort celle du médecin persécuteur qui a pour volonté de tuer les plus vulnérables, celle du médecin victime du système qui lui impose de violer son Serment d'Hippocrate et celle du médecin sauveur qui aide les plus souffrants à mourir, les sauvant, ainsi, de la maladie et de la souffrance.

Alla former av eutanasi är olagligt i Sverige, däremot väljer allt fler länder att framföra ett mer liberalt perspektiv av det och legalisera det. I sjuksköterskans profession och arbete ingår det att bemöta patienter som har en dödsönskan och efterfrågar eutanasi. Av den anledningen var det av vikt att kunna klarlägga vilka faktorer som påverkar sjuksköterskans förhållningssätt kring fenomenet i de länder som eutanasi utförs. Arbetets syfte var att belysa sjuksköterskans förhållningssätt i mötet med patienter som uttrycker önskan om eutanasi. Metoden som användes var en litteraturstudie där resultaten av tio vetenskapliga artiklar sammanställdes. Datamaterialet analyserades utifrån Fribergs modell. I resultatet redovisades teman som påvisade att det var en emotionell och transformativ upplevelse att delta vid eutanasi, vissa sjuksköterskor upplevde en påtaglig psykisk påverkan av lidandet. Det åskådliggjordes även att religion och kultur hade en inverkan på sjuksköterskans förhållningssätt samt människor utanför vården ex. Familj och samhälle. Det förklarades hur betydelsefullt det var med kommunikation, samarbete och att organisationen samt lagen skapade tydliga riktlinjer att förhålla sig till. I diskussionen lyftes det fram både negativa och positiva aspekter av eutanasi, där sjuksköterskan kunde påverkas av olika faktorer. Etisk stress och maktlöshet var känslor som kunde uppstå hos sjuksköterskan vid bemötande av eutanasi. På liknande sätt stärktes även sjuksköterskan i sin yrkesroll, vilket gjorde det till ett komplext och känsloladdat ämne. / All forms of euthanasia are illegal in Sweden, despite that more countries are deciding to form a more liberal perspective on it and legalise it. Because the nurse plays a central part in the euthanasia process there's a relevance in bringing attention to the phenomenon since it is a complex and emotionally charged subject. Consequently, there is a need for extended knowledge about what factors affect the nurse’s approach towards the phenomenon. Therefore, the aim of this study is to highlight nurse’s approach to euthanasia. The method used for this study is a qualitative literature review based on the results of 11 scientific articles. The contents of the articles were analysed according to Friberg’s analysis model. The results of the analysis are presented in 3 base themes and 6 sub-themes. "Nurse's approach towards participation in euthanasia" highlights how the nurse's experience of participation was transcending and emotional, and some nurses experienced a tangible psychological impact caused by the suffering. "Factors that affect a nurse's approach" shows that religion and culture as well as people outside of healthcare, for example family and society, have an effect on the nurse's approach. "Collaboration in healthcare" explains how important communication and teamwork is, besides that the organisation and the law create clear guidelines. The uncertainty among these factors affects the nurses approach towards euthanasia, often in a negative way. In conclusion, euthanasia is a complex and emotional subject that creates ethical and moral dilemmas for nurse's, dilemmas that will never be discussed enough. Plenty of the nurses described how they often feel uncertain about the subject euthanasia and a clearer communication is important in the euthanasia process.

Background: Despite a longstanding debate regarding personal choice towards death and dying, MAiD was legalized in Canada on June 17th, 2016. Since its integration into the healthcare system, there has been a dearth of literature surrounding providers’ experience with the procedure. Healthcare providers are uniquely positioned within the context of the MAiD experience. Aim: To explore the experiences of health care providers (nurses and physicians) caring for patients undergoing MAiD as well as to explore the relationships between the concepts, Moral Distress (MD), Professional Quality of Life (Burnout (BU), Secondary Traumatic Stress (STS) and Compassion Satisfaction (CS)), and Intent to Turnover (TO). Design: This explorative and descriptive cross-sectional study consisted of a self-reported survey that uses both scale items and open-ended questions. Setting/ Participants: The target population included all nurses and physicians who were active members of a targeted Regional MAiD Network practicing within a designated geographical location within Canada. Results: N=38 Questionnaires completed. The averages of our measured constructs include Moral Distress (Composite) x= 2.9 (SD 2.03), Moral Distress (Frequency): x= 1,18 (SD .102), Moral Distress (Intensity): x= 1.61 (SD .28) Burnout: x= 2.08 (SD 0.5), Secondary Traumatic Stress x= 2.22 (SD 0.48), Compassion Satisfaction x= 4.18 (SD 0.43) and Turnover Intent: x= 2.22 (SD 0.77). Significant positive correlations were found between inter-scale constructs of Moral Distress (Composite, Frequency, and Intensity), Moral Distress, Burnout, and Secondary Traumatic Stress, and between Burnout and Turnover Intent. Significant negative correlations were also found between Professional Quality of life Inter-Scale constructs of Compassion Satisfaction and Burnout as well as between Compassion Satisfaction and Turnover Intent. Conclusion: MAiD providers in our study expressed feelings of their work being “rewarding” and “deeply satisfying”, further reflective in their below-average rates of Moral Distress, Burnout, Secondary Traumatic Stress, Turnover Intent, and higher-than-average rates of Compassion Satisfaction. Although the procedure remains controversial, these participants expressed enjoying their work. These reported positive aspects of their roles persisted despite the challenges the COVID-19 pandemic presented.

Au regard de la légalisation de l’aide médicale à mourir (AMM), cette étude avait comme but d’explorer le deuil des enfants adultes dont un parent est décédé à la suite de l’administration de l’AMM. Un devis de recherche qualitative interprétativiste inspiré de l’approche narrative a permis d’y répondre. Le cadre théorique de cette étude est le Dual Process Model of Coping with Bereavement (DPM) et son modèle révisé de Stroebe et Schut (1999, 2010, 2015). Un échantillonnage de convenance a permis de recruter six participants. La collecte de données a été réalisée par le biais d’entretiens individuels, d’un questionnaire sociodémographique et par la tenue d’un journal de bord. L’analyse des données a été réalisée selon la méthode de Josselson et Hammack (2021). Trois thèmes principaux sont soulevés dans les récits des participants : 1) la temporalité; 2) la quête de sens et 3) les facteurs influençant le deuil. Le premier réfère à la conscience du temps qu’amène le fait de fixer une date au décès. Le deuxième se décline en trois sous-thèmes : la souffrance, l’altération des rituels et le changement identitaire, qui pointent tous vers la recherche d’un sens à la mort. Le dernier se penche sur les éléments individuels, sociaux et institutionnels qui modifient l’expérience des participants. Ces résultats ont été intégrés au DPM et des recommandations pour la discipline infirmière, la pratique clinique, la gestion, la formation et la recherche sont émises. / Given the legalization of medical assistance in dying (MAID), the purpose of this study was to explore the grieving process of adult children whose parent died from MAID. An interpretivist qualitative research design inspired by the narrative inquiry approach was used. The theoretical framework for this study was the Dual Process Model of Coping with Bereavement (DPM) and its revised model by Stroebe and Schut (1999, 2010, 2015). Six participants were recruited using a convenience sampling strategy. Data collection was conducted through individual interviews, a sociodemographic questionnaire, and a logbook. Data analysis was conducted using the method of Josselson and Hammack (2021). Three main themes emerged in the participants' narratives: 1) temporality, 2) the search for meaning, and 3) factors influencing grief. The first refers to the awareness of time that comes with setting a time of death. The second is broken down into three sub- themes: suffering, alteration of rituals and change of identity, all of which point to the search for meaning in death of a parent. The last one looks at the individual, social and institutional elements that alter the experience of the participants. These findings have been incorporated into the DPM and recommendations for the nursing discipline, clinical practice, management, training, and research are made.

Au cours de l’été 2014, le cas d’un patient conscient, dépendant d'un respirateur, ayant demandé un arrêt de traitement vital et exprimé le souhait de faire don de ses organes a secoué la communauté québécoise du don d’organes et de la transplantation. Ce fut le début d’une réflexion importante quant à l’acceptabilité du don d’organes chez des personnes conscientes et aptes ayant choisi de mettre fin à un traitement vital. Cette réflexion était d’autant plus pertinente que le gouvernement québécois préparait sa Loi concernant les soins de fin de vie qui allait rendre légale l’aide médicale à mourir (AMM). Puisqu’il était cliniquement possible pour certains patients de faire un don d’organes suite à une AMM, il était probable que la légalisation de cette pratique augmente le nombre de patients conscients désirant donner leurs organes alors qu’ils auraient choisi de mourir. La littérature sur les enjeux éthiques soulevés par ce type de dons d’organes était alors quasi inexistante et, au moment de débuter le projet de recherche, des lignes directrices de pratique n’existaient pas au Québec et au Canada. Il devenait donc impératif de mieux identifier les enjeux éthiques et de les analyser afin de contribuer à l’encadrement de ces nouvelles pratiques. Il n’y avait également aucune étude décrivant les perspectives des professionnels de la santé face à de tels dons. Les objectifs de ce projet de thèse étaient i) d’identifier les enjeux éthiques soulevés par le don d’organes chez un patient conscient et apte demandant un retrait de thérapie de maintien des fonctions vitales ou une AMM; ii) d’analyser ces enjeux à l’aide de théories éthiques; iii) de connaître et comprendre les perspectives des professionnels de la santé sur les enjeux soulevés par le don d’organes dans ces contextes particuliers; iv) finalement, de mettre en relation les perspectives des professionnels et les politiques qui ont été adoptées au Québec depuis sa mise en route. Nous avons donc mené une étude exploratoire qualitative par le biais d’entretiens avec des professionnels du don d’organes susceptibles d’être impliqués à un moment ou un autre dans le processus du don d’organes par un patient apte ayant demandé un retrait de thérapie de maintien des fonctions vitales ou une AMM. Notre échantillon comprenait médecins et infirmiers des soins intensifs, de la salle d’opération ou impliqués en don d’organes dans deux centres hospitaliers montréalais très actifs au niveau du don d’organes (CHUM et l’Hôpital Sacré-Cœur) et à Transplant Québec. Nous avons identifié les enjeux éthiques à l’aide d’une revue de littérature et par l’analyse des perspectives des professionnels. Les principaux enjeux éthiques sont liés au respect de l’autonomie des patients, à l’information à fournir ou non aux donneurs potentiels, à l’objection de conscience par les professionnels, à la possibilité pour les receveurs de refuser ou non les organes provenant de l’AMM, à l’acceptabilité du don d’organes suite à une AMM confidentielle, à la règle du donneur décédé́, à la possibilité de diriger un don d’organe vers un receveur désigné par le donneur et à l’acceptabilité de choisir l’AMM pour rendre possible le don d’organes. Nous avons d’abord analysé ces enjeux éthiques à l’aide du modèle de l’équilibre réflexif large de Norman Daniels et nous avons ensuite intégré à notre analyse les perspectives des participants sur les différents enjeux selon le modèle de l’équilibre réflexif- normatif empirique. À la lumière de nos résultats, nous pouvons conclure que : i) le don d’organes pour les patients aptes demandant une AMM ou un retrait de thérapies de maintien des fonctions vitales était, de manière générale, éthiquement acceptable dans le contexte légal en vigueur au moment de notre recherche; ii) les patients demandant l’AMM et souffrant d’une maladie compatible avec le don d’organes devaient être informés de la possibilité qui s’offre à eux de faire un don d’organes; iii) les objections de conscience devraient être respectées dans la mesure où elles ne compromettent pas l’accès aux soins des patients; iv) la possibilité de refuser des organes provenant de l’AMM devrait être offerte aux receveurs lors de leur inscription sur la liste d’attente et v) un patient désirant faire don de ses organes suite à une AMM qu’il désire garder confidentielle devrait être informé de toutes les implications liées au contexte particulier du prélèvement et consentir à un bris de la confidentialité afin de minimiser les risques de nuire au don d’organes. Certaines de ces conclusions sont contraires aux politiques en vigueur. Notre étude a contribué à mieux cerner les enjeux éthiques soulevés par le don d’organes dans ces nouveaux contextes. De plus, nous identifions les enjeux pour lesquels une réflexion plus poussée , et possiblement une révision des lignes directrices, s’imposent. Plusieurs questions demeurent et de nouvelles questions surgissent alors que des modifications aux critères d’admissibilité à l’AMM sont entrevues à court ou à moyen terme (AMM en dehors de la fin de vie, en cas de maladie mentale ou pour les patients inaptes ayant fait une demande anticipée). / In the summer of 2014, the case of a conscious patient, respirator dependent, who requested a withdrawal of life-sustaining therapy and expressed the wish to donate his organs shook the Quebec organ donation and transplantation community. It was the beginning of an important reflection on the acceptability of organ donation in conscious and competent people who have chosen to stop vital treatment. This reflection was timely as the Quebec government was preparing its End-of-Life Care Act, which would make medical assistance in dying (MAID) legal. Since it was clinically possible for some patients to donate organs following MAID, it was likely that the legalization of this practice would increase the number of conscious patients wishing to donate their organs when they would have chosen to die. The literature on the ethical issues raised by this type of organ donation was then almost non-existent and, at the time the research project began, practice guidelines did not exist in Quebec and Canada. It therefore became imperative to identify these ethical issues and to analyze them in order to contribute to the guidance of these new practices. There was also no study describing the perspectives of health professionals regarding such donations. The objectives of this doctoral project were (i) to identify the ethical issues raised by organ donation in a conscious and competent patient requesting withdrawal of life sustaining therapy or MAID; (ii) to analyze these issues using ethical theories; (iii) to obtain and understand the perspectives of health professionals on the issues raised by organ donation in these particular contexts; (iv) finally, to compare the perspectives of professionals to the policies that have been adopted in Quebec since its inception. We therefore conducted a qualitative exploratory study through interviews with organ donation professionals likely to be involved in the organ donation process by a conscious patient who has requested withdrawal of life-sustaining therapy or MAID. Our sample included physicians and nurses in intensive care, operating room or involved in organ donation in two Montreal hospital centers that are very active in organ donation (CHUM and Hôpital Sacré-Cœur) and at Transplant Québec. We identified ethical issues through a literature review and by analyzing the perspectives of professionals. The main ethical issues are related to respect for patient autonomy, information to be provided to potential donors, conscientious objection by professionals, the possibility for recipients to refuse organs procured after MAID, the acceptability of organ donation following a confidential MAID, the dead donor rule, the acceptability of directing an organ to a specific recipient designated by the donor and the acceptability of choosing MAID in order to make organ donation possible. We first analyzed these ethical issues using Norman Daniels' wide reflexive equilibrium model and then incorporated participants' perspectives on the various issues using the normative empirical - reflexive equilibrium model into our analysis. Based on our results, we can conclude that : (i) organ donation for competent patients requesting MAID or withdrawal of life-sustaining therapies was generally ethically acceptable within the legal context in effect at the time of our research; (ii) patients requesting MAID and suffering from a disease compatible with organ donation should be informed of the possibility of organ donation; and (iii) conscientious objections should be respected as long as they do not compromise patients' access to care; iv) recipients should be offered the opportunity to refuse organs procured after MAID when they are placed on the waiting list; and v) a patient who wishes to donate his or her organs following MAID that he or she wishes to keep confidential should be informed of all the implications related to the specific context of the procurement and should consent to a breach of confidentiality in order to minimize the risk of undermining public trust in organ donation. Some of these conclusions are contrary to current policies. Our study has contributed to a better understanding of the ethical issues raised by organ donation in these new contexts. In addition, we identify issues that require further reflection and possibly a revision of the guidelines in place. Many questions remain and new ones arise as changes to the MAID eligibility criteria are foreseen (MAID outside of the end-of-life context, in cases of mental illness or by advanced request).