Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada.

INTRODUCTION: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. CONCLUSION: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.

'My Advocacy is Not About Me, My Advocacy is About Canadians': A Qualitative Study of how Caregivers and Patients Influence Regulation of Medical Assistance in Dying in Canada.

Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and subsequent litigation and advocacy, which resulted in amendments to the law via Bill C-7 in 2021. Research has primarily focused on the impacts of regulation on caregivers and patients. This qualitative study investigates how caregivers and patients influence law reform and the operation of MAiD practice in Canada (ie, behave as 'regulatory actors'), using Black's definition of regulation. We found that caregivers and patients performed sustained, focused, and intentional actions that influenced law reform and the operation of MAiD in practice. Caregivers and patients are not passive objects of Canadian MAiD regulation, and their role in influencing regulation (eg, law reform and MAiD practice) should be supported where this is desired by the person. However, recognising the burdens of engaging in regulatory action to address barriers to accessing MAiD or to quality care, and MAiD system gaps, other regulatory actors (eg, governments) should minimise this burden, particularly where a person engages in regulatory action reluctantly.

A qualitative study of experiences of institutional objection to medical assistance in dying in Canada: ongoing challenges and catalysts for change.

BACKGROUND: In June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these "institutional objections", however, very little research has examined their nature and impact. METHODS: This study reports on findings from 48 semi-structured qualitative interviews conducted with MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis. RESULTS: Themes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions' objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners. CONCLUSIONS: This paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice.

Assistance in dying: A comparative look at legal definitions.

Euthanasia, assisted suicide, medical assistance in dying, death with dignity: these and many other different terms are used around the world to capture various types of assistance in dying. This diversity in terminology can create confusion both in academic debates and in policy-making if it is unclear what type of action or inaction is intended to be captured, by whom, and under what circumstances. By defining and contrasting several terms and legal status of assistance in dying in jurisdictions authorizing it, this comparative glossary aims to lay a foundation that prevents linguistic and conceptual confusion.

From Prohibition to Permission: The Winding Road of Medical Assistance in Dying in Canada.

In this paper, I offer a personal and professional narrative of how Canada went from prohibition to permission for medical assistance in dying (MAiD). I describe the legal developments to date and flag what might be coming in the near future. I also offer some personal observations and reflections on the role and impact of bioethics and bioethicists, on what it was like to be a participant in Canada's law reform process, and on lessons that readers in other jurisdictions might take from Canada's experience.

Social determinants of health and slippery slopes in assisted dying debates: lessons from Canada.

The question of whether problems with the social determinants of health that might impact decision-making justify denying eligibility for assisted dying has recently come to the fore in debates about the legalisation of assisted dying. For example, it was central to critiques of the 2021 amendments made to Canada's assisted dying law. The question of whether changes to a country's assisted dying legislation lead to descents down slippery slopes has also come to the fore-as it does any time a jurisdiction changes its laws. We explore these two questions through the lens of Canada's experience both to inform Canada's ongoing discussions and because other countries will confront the same questions if they contemplate changing their assisted dying law. Canada's Medical Assistance in Dying (MAiD) law has evolved through a journey from the courts to Parliament, back to the courts, and then back to Parliament. Along this journey the eligibility criteria, the procedural safeguards, and the monitoring regime have changed. In this article, we focus on the eligibility criteria. First, we explain the evolution of the law and what the eligibility criteria were at the various stops along the way. We then explore the ethical justifications for Canada's new criteria by looking at two elements of the often-corrosive debate. First, we ask whether problems with the social determinants of health that might impact decision-making justify denying eligibility for assisted dying of decisionally capable people with mental illnesses and people with disabilities as their sole underlying medical conditions. Second, we ask whether Canada's journey supports slippery slope arguments against permitting assisted dying.

Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders.

BACKGROUND: Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. METHODS: We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. RESULTS: Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. CONCLUSIONS: Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementia.

OBJECTIVE: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia. METHODS: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes. RESULTS: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers. CONCLUSION: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent.

Are Informal Caregivers of Persons With Dementia Open to Extending Medical Aid in Dying to Incompetent Patients? Findings From a Survey Conducted in Quebec, Canada.

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.

Welcome to the wild, wild north: conscientious objection policies governing Canada's medical, nursing, pharmacy, and dental professions.

In Canada, as in many developed countries, healthcare conscientious objection is growing in visibility, if not in incidence. Yet the country's health professional policies on conscientious objection are in disarray. The article reports the results of a comprehensive review of policies relevant to conscientious objection for four Canadian health professions: medicine, nursing, pharmacy and dentistry. Where relevant policies exist in many Canadian provinces, there is much controversy and potential for confusion, due to policy inconsistencies and terminological vagueness. Meanwhile, in Canada's three most northerly territories with significant Aboriginal populations, whose already precarious health is influenced by funding and practitioner shortages, there are major policy gaps applicable to conscientious objection. In many parts of the country, as a result of health professionals' conscientious refusals, access to some legal health services - including but not limited to reproductive health services such as abortion - has been seriously impeded. Although policy reform on conscientious conflicts may be difficult, and may generate strenuous opposition from some professional groups, for the sake of both patients and providers, such policy change must become an urgent priority.

Fake it till you make it: Policymaking and assisted human reproduction in Canada.

The Assisted Human Reproduction Act (AHR Act) came into effect in 2004. The AHR Act stipulates in s.12 that no reimbursement of expenditures incurred in the course of donating gametes, maintaining or transporting in vitro embryos, or providing surrogacy services is permitted, except in accordance with the regulations and with receipts. Ten years later, Health Canada still has not drafted the regulations governing reimbursement. Section 12 is therefore still not in force. Health Canada and others have asserted that there is a Health Canada policy on reimbursement and that reimbursement with receipts is legally permissible. We dispute the existence of such a policy and its legitimacy (if it exists). We also challenge the decision by Health Canada not to produce regulations and thereby make it possible for Parliament to bring s.12 into force. This intentional lack of action is worrisome on at least two fronts. First, it sidesteps the processes required for regulations and thereby ducks the Parliamentary oversight very deliberately built into the AHR Act. Second, it leaves Canadians who provide and who access assisted human reproduction uncertain about what is and is not permitted, and therefore fearful of, or at risk of, prosecution. We conclude that Health Canada should take the steps necessary to put regulations in front of Parliament so that Parliament will then be able to pass regulations and bring s.12 into force. Canadians should demand no less.

La Loi sur la procréation assistée (LPA) est entrée en vigueur en 2004. L'article 12 de la LPA stipule qu'il est interdit de rembourser les frais supportés par un donneur pour le don d'un ovule ou d'un spermatozoïde, par quiconque pour l'entretien ou le transport d'un embryon in vitro ou par une mère porteuse pour agir à ce titre, sauf en conformité avec les règlements (avec reçus). Dix ans plus tard, Santé Canada n'a toujours pas formulé de règlements régissant le remboursement. L'article 12 n'est donc toujours pas en vigueur. Santé Canada et d'autres intervenants ont soutenu qu'il existe une politique de Santé Canada sur le remboursement et que le remboursement sur présentation de reçus est permis au plan légal. Nous contestons l'existence d'une telle politique et sa légitimité (le cas échéant). Nous contestons également la décision de Santé Canada de ne pas formuler de règlements et d'empêcher ainsi l'entrée en vigueur de l'article 12. Cette inaction délibérée est troublante pour au moins deux raisons. Premièrement, elle contourne les processus requis pour ce qui est des règlements et se soustrait donc à la surveillance parlementaire qui a été intégrée à la LPA de façon très délibérée. Deuxièmement, elle expose les Canadiens qui offrent et qui utilisent des services de procréation assistée à de l'incertitude quant à ce qui est et à ce qui n'est pas permis, ce qui fait en sorte qu'ils ne savent donc pas s'ils s'exposent ou non à des poursuites. Nous en venons à la conclusion que Santé Canada devrait prendre les mesures nécessaires pour soumettre des règlements au Parlement, de façon à ce que ce dernier soit en mesure de les promulguer et d'assurer l'entrée en vigueur de l'article 12. Les Canadiens devraient l'exiger.

"Speak Up, We Can't Hear You".

The author supports the lead authors' call for physicians to be open about their support for legalized assisted death. Citing evidence from Canada and internationally, the author demonstrates that support for euthanasia is growing in the medical community, and that many physicians would like to see legislative changes to support this trend. The commentary concludes with a call for physicians to educate themselves so that they can advocate more effectively on behalf of their patients.

Practitioners' experiences with 2021 amendments to Canada's medical assistance in dying law: a qualitative analysis.

Background: In 2016, Canada joined the growing number of jurisdictions to legalize medical assistance in dying (MAiD), when the Supreme Court of Canada's decision in Carter v Canada took effect and the Canadian Parliament passed Bill C-14. Five years later, Bill C-7 introduced several significant amendments. These included removing the 'reasonably foreseeable natural death' requirement (an aspect that was widely debated) and introducing the final consent waiver. Since Bill C-7 is so new, very little research has investigated its operation in practice. Objectives: This study investigates the experiences of MAiD assessors and providers regarding the Bill C-7 amendments. It explores implications for understanding and improving regulatory reform and implementation. Design: Qualitative thematic analysis of semi-structured interviews. Methods: In all, 32 MAiD assessors and providers (25 physicians and 7 nurse practitioners) from British Columbia (n = 10), Ontario (n = 15) and Nova Scotia (n = 7) were interviewed. Results: The analysis resulted in five themes: (1) removing barriers to MAiD access; (2) navigating regulatory and systems recalibration; (3) recognizing workload burdens; (4) determining individual ethical boundaries of practice and (5) grappling with ethical tensions arising from broader health system challenges. Conclusion: This is one of the first studies to investigate physicians' and nurse practitioners' experiences of the impact of Bill C-7 after the legislation was passed. Bill C-7 addressed key problems under Bill C-14, including the two witnesses requirement and the 10-day waiting period. However, it also introduced new complexities as practitioners decided how to approach cases involving a non-reasonably foreseeable natural death (and contemplated the advent of MAiD for persons with a mental disorder as a sole underlying condition). This study highlights the importance of involving practitioners in advance of legislative changes. It also emphasizes how the regulation of MAiD involves a range of organizations, which requires strong leadership and coordination from the government.

Ill-informed consent? A content analysis of physical risk disclosure in school-based HPV vaccine programs.

OBJECTIVES: This study examines the accuracy, completeness, and consistency of human papilloma virus (HPV) vaccine related physical risks disclosed in documents available to parents, legal guardians, and girls in Canadian jurisdictions with school-based HPV vaccine programs. DESIGN AND SAMPLE: We conducted an online search for program related HPV vaccine risk/benefit documents for all 13 Canadian jurisdictions between July 2008 and May 2009 including follow-up by e-mail and telephone requests for relevant documents from the respective Ministries or Departments of Health. The physical risks listed in the documents were compared across jurisdictions and against documents prepared by the vaccine manufacturer (Merck Frosst Canada), the National Advisory Committee on Immunization (NACI), the Society of Obstetricians and Gynecologists of Canada (SOGC), and a 2007 article in Maclean's Magazine. RESULTS: No jurisdiction provided the same list of vaccine related physical risks as any other jurisdiction. Major discrepancies were identified. CONCLUSIONS: Inaccurate, incomplete, and inconsistent information can threaten the validity of consent/authorization and potentially undermine trust in the vaccine program and the vaccine itself. Efforts are needed to improve the quality, clarity, and standardization of the content of written documents used in school-based HPV vaccine programs across Canada.

End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.

This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.