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.

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.

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.

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.

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.

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.

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.

Assisted dying and evidence-based law-making: a critical analysis of an article's role in New Zealand's referendum.

AIM: To critically analyse the reliability of an article which claims to be evidence that the End of Life Choice Act 2019 provides a "potential hotspot for family, community and social discord that may not be easily remedied" should the legislation receive public support in New Zealand's September 2020 referendum. METHODS: The subject article was reviewed multiple times by all authors and critiqued against three criteria: a reliability pyramid developed to weigh evidence about assisted dying; principles that guide the conduct of social science research; and the use of reliable and current social science literature to support factual claims. RESULTS: The study being analysed involved a single interview and so is located at the second bottom row of the reliability pyramid. Its research design is also unable to support the broad findings that are asserted. Other flaws in method included findings being extended beyond the data, and failure to state appropriate limitations in the research method. Further, claims are made that are unsupported by the weight of reliable social science literature. CONCLUSION: The subject article is methodologically and factually flawed so is unreliable as evidence. It should not be considered in the assisted dying debates preceding the forthcoming referendum.