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.

Preferences for Palliative and End-of-Life Care: A Systematic Review of Discrete Choice Experiments.

OBJECTIVES: Understanding what matters most to patients and their caregivers is fundamental to delivering high-quality care. This systematic review aimed to characterize and appraise the evidence from discrete choice experiments eliciting preferences for palliative care. METHODS: A systematic literature search was undertaken for publications up until August 2022. Data were synthesized narratively. Thematic analysis was applied to categorize attributes into groups. Attribute development, frequency, and relative importance were analyzed. Subgroup analyses were conducted to compare outcomes between patient and proxy respondents. RESULTS: Seventeen studies spanning 11 countries were included; 59% of studies solely considered preferences for patients with cancer. A range of respondent groups were represented including patients (76%) and proxies (caregivers [35%], health providers [12%], and the public [18%]). A total of 117 individual attributes were extracted and thematically grouped into 8 broad categories and 21 subcategories. Clinical outcomes including quality of life, length of life, and pain control were the most frequently reported attributes, whereas attributes relating to psychosocial components were largely absent. Both patients and proxy respondents prioritized pain control over additional survival time. Nevertheless, there were differences between respondent cohorts in the emphasis on other attributes such as access to care, timely information, and low risk of adverse effects (prioritized by patients), as opposed to cost, quality, and delivery of care (prioritized by proxies). CONCLUSIONS: Our review underscores the vital role of pain control in palliative care; in addition, it shed light on the complexity and relative strength of preferences for various aspects of care from multiple perspectives, which is useful in developing personalized, patient-centered models of care for individuals nearing the end of life.

Access to voluntary assisted dying in Victoria: a qualitative study of family caregivers' perceptions of barriers and facilitators.

OBJECTIVES: To investigate barriers to and facilitators of access to voluntary assisted dying in Victoria under the Voluntary Assisted Dying Act 2017 (Vic). DESIGN, SETTING, PARTICIPANTS: Qualitative study; semi-structured interviews with people who had applied for voluntary assisted dying or their family caregivers, recruited via social media and interested advocacy groups; interviews conducted 17 August - 26 November 2021. MAIN OUTCOME MEASURES: Barriers to and facilitators of access to voluntary assisted dying. RESULTS: We interviewed 33 participants about 28 people who had applied for voluntary assisted dying; all but one of the interviews were with family caregivers after their relatives' deaths, and all but three were conducted via Zoom. The major barriers to access identified by participants were finding trained and willing doctors to assess eligibility for voluntary assisted dying; the time required for the application process (especially given how ill the applicants were); the prohibition of telehealth consultations; institutional objections to voluntary assisted dying; and the prohibition of health practitioners raising voluntary assisted dying with their patients. The major facilitators mentioned were care navigators (both the Statewide service and local navigators); finding a supportive coordinating practitioner; the Statewide Pharmacy Service; and system flow once the process had been initiated (although not during the early days of voluntary assisted dying in Victoria). Access was particularly difficult for people in regional areas or with neurodegenerative conditions. CONCLUSIONS: Access to voluntary assisted dying has improved in Victoria, and people generally felt supported while navigating the application process once they found a coordinating practitioner or a navigator. But this step, and other barriers, often still made patient access difficult. Adequate support for doctors, navigators and other facilitators of access is vital for the effective functioning of the overall process.

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.

The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers' perceptions.

BACKGROUND: Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. METHODS: 28 semi-structured interviews were conducted with 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. RESULTS: Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient's illness; progression or state of a patient's illness; patient's geographical location; and the capability and assertiveness of a patient and/or caregiver. CONCLUSIONS: Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria's existing policy approach appears to preference institutional positions over patient's choice given existing power dynamics.

Voluntary assisted dying: peak bodies must provide practical guidance.

Despite widespread reform in Australia, the Australian Medical Association (AMA) remains ethically opposed to voluntary assisted dying (VAD). This article argues that the AMA should abandon its opposition to VAD to fulfil better its mandate of providing the best outcomes for doctors, patients and the community. A neutral stance enables peak bodies to engage more fully in implementation and support diverse perspectives.

Voluntary Assisted Dying by Practitioner Administration Is Not Suicide: A Way Past the Commonwealth Criminal Code?

Five Australian States - Victoria, Western Australia, Tasmania, South Australia and Queensland - have now legalised voluntary assisted dying (VAD). These State legislative schemes intersect with provisions in the Criminal Code Act 1995 (Cth) (Commonwealth Criminal Code) which prohibit using electronic communication to counsel, promote, or provide instruction on "suicide". These provisions may prevent some conversations and assessments relating to self-administration of VAD occurring via telehealth, thereby restricting access for prospective VAD patients in regional and remote areas. However, as practitioner administration of VAD is not "suicide", the Commonwealth Criminal Code does not apply. The Commonwealth law creates the absurd result that the same conversation conducted via telehealth is illegal when contemplating VAD by self-administration, but legal when discussing practitioner-administered VAD. To avoid this, we advocate amending the Code to remove the inconsistency with state VAD laws. We also recommend State legislatures consider permitting greater access to VAD by practitioner-administered VAD.

Mapping the Legal Regulation of Voluntary Assisted Dying in Victoria: The Coherence of a New Practice within the Wider Legal System.

This article undertakes the first comprehensive mapping exercise of the legal regulation of voluntary assisted dying (VAD) in Victoria. Despite the detailed nature of the Voluntary Assisted Dying Act 2017 (Vic), this analysis reveals that VAD is also regulated by a diverse array of other law: a further 20 pieces of legislation and 27 broad areas of law. In some instances, this legal regulation beyond the principal VAD legislation is significant for how the VAD system operates in practice. The article then identifies the implications of this mapping exercise for the coherence of the law, focusing in particular on the domains of consistency, comprehensiveness, and completeness. Findings include identifying areas of significant incoherence and the implications of this for law reformers, policymakers, and users of the law, including patients, families, health practitioners, and health service providers.

Doctors' perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis.

OBJECTIVE: To increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility. SETTING: Three tertiary hospitals in metropolitan Brisbane, Australia. DESIGN: Qualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis. RESULTS: Doctors' perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing. CONCLUSIONS: Doctors' ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors' role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.

Australian Policies on "Futile" or "Non-beneficial" Treatment at the End of Life: A Qualitative Content Analysis.

A challenge in end-of-life care is requests by patients or their substitute decision-makers for treatment that doctors consider is "futile" or "non-beneficial". Concerns that these concepts are uncertain and subjective have led to calls for medical policies to clarify terminology and to provide procedural solutions to prevent and address disputes. This article provides a comprehensive analysis of how Australian medical guidelines and policies on withholding or withdrawing potentially life-sustaining treatment address futility. It demonstrates that while the concept is found throughout medical policies and guidelines, the terminology employed is inconsistent. There is also variability in the extent of guidance given about unilateral decision-making and mechanisms for dispute resolution. This is problematic, given that the question of further treatment can often only be determined in relation to the individual patient's goals and values. We conclude by advocating for the development of a unified policy approach to futile or non-beneficial treatment in Australia.

Charlie Gard: in defence of the law.

Much of the commentary in the wake of the Charlie Gard litigation was aimed at apparent shortcomings of the law. These include concerns about the perceived inability of the law to consider resourcing issues, the vagueness of the best interests test and the delays and costs of having disputes about potentially life-sustaining medical treatment resolved by the courts. These concerns are perennial ones that arise in response to difficult cases. Despite their persistence, we argue that many of these criticisms are unfounded. The first part of this paper sets out the basic legal framework that operates when parents seek potentially life-sustaining treatment that doctors believe is against a child's best interests, and describes the criticisms of that framework. The second part of the paper suggests an alternative approach that would give decision-making power to parents, and remove doctors' ability to unilaterally withhold or withdraw life-sustaining treatment that they regard is futile. This proposal is grounded in several values that we argue should guide these regulatory choices. We also contend that the best interests test is justifiable and since the courts show no sign of departing from it, the focus should be on how to better elucidate the underlying values driving decisions. We discuss the advantages of our proposed approach and how it would address some of the criticisms aimed at the law. Finally, we defend the current role that the judiciary plays, as an independent state-sanctioned process with a precedent-setting function.

What does "futility" mean? An empirical study of doctors' perceptions.

OBJECTIVE: To investigate how doctors define and use the terms "futility" and "futile treatment" in end-of-life care. DESIGN, SETTING, PARTICIPANTS: A qualitative study using semi-structured interviews with 96 doctors from a range of specialties which treat adults at the end of life. Doctors were recruited from three large Brisbane teaching hospitals and were interviewed between May and July 2013. RESULTS: Doctors' conceptions of futility focused on the quality and prospect of patient benefit. Aspects of benefit included physiological effect, weighing benefits and burdens, and quantity and quality of life. Quality and length of life were linked, but many doctors discussed instances in which benefit was determined by quality of life alone. Most described assessing the prospects of achieving patient benefit as a subjective exercise. Despite a broad conceptual consensus about what futility means, doctors noted variability in how the concept was applied in clinical decision making. More than half the doctors also identified treatment that is futile but nevertheless justified, such as short term treatment that supports the family of a dying person. CONCLUSIONS: There is an overwhelming preference for a qualitative approach to assessing futility, which inevitably involves variability in clinical decision making. Patient benefit is at the heart of doctors' definitions of futility. Determining patient benefit requires discussing with patients and their families their values and goals as well as the burdens and benefits of further treatment.

Reasons doctors provide futile treatment at the end of life: a qualitative study.

OBJECTIVE: Futile treatment, which by definition cannot benefit a patient, is undesirable. This research investigated why doctors believe that treatment that they consider to be futile is sometimes provided at the end of a patient's life. DESIGN: Semistructured in-depth interviews. SETTING: Three large tertiary public hospitals in Brisbane, Australia. PARTICIPANTS: 96 doctors from emergency, intensive care, palliative care, oncology, renal medicine, internal medicine, respiratory medicine, surgery, cardiology, geriatric medicine and medical administration departments. Participants were recruited using purposive maximum variation sampling. RESULTS: Doctors attributed the provision of futile treatment to a wide range of inter-related factors. One was the characteristics of treating doctors, including their orientation towards curative treatment, discomfort or inexperience with death and dying, concerns about legal risk and poor communication skills. Second, the attributes of the patient and family, including their requests or demands for further treatment, prognostic uncertainty and lack of information about patient wishes. Third, there were hospital factors including a high degree of specialisation, the availability of routine tests and interventions, and organisational barriers to diverting a patient from a curative to a palliative pathway. Doctors nominated family or patient request and doctors being locked into a curative role as the main reasons for futile care. CONCLUSIONS: Doctors believe that a range of factors contribute to the provision of futile treatment. A combination of strategies is necessary to reduce futile treatment, including better training for doctors who treat patients at the end of life, educating the community about the limits of medicine and the need to plan for death and dying, and structural reform at the hospital level.

Institutional Objection to Voluntary Assisted Dying in Victoria, Australia: An Analysis of Publicly Available Policies.

BACKGROUND: Victoria was the first Australian state to legalize voluntary assisted dying (elsewhere known as physician-assisted suicide and euthanasia). Some institutions indicated they would not participate in voluntary assisted dying. The Victorian government issued policy approaches for institutions to consider OBJECTIVE: To describe and analyse publicly available policy documents articulating an institutional objection to voluntary assisted dying in Victoria. METHODS: Policies were identified using a range of strategies, and those disclosing and discussing the nature of an institutional objection were thematically analysed using the framework method. RESULTS: The study identified fifteen policies from nine policymakers and developed four themes: (1) extent of refusal to participate in VAD, (2) justification for refusal to provide VAD, (3) responding to requests for VAD, and (4) appeals to state-sanctioned regulatory mechanisms. While institutional objections were stated clearly, there was very little practical detail in most documents to enable patients to effectively navigate objections in practice. CONCLUSION: This study demonstrates that despite having clear governance pathways developed by centralized bodies (namely, the Victorian government and Catholic Health Australia), many institutions' public-facing policies do not reflect this guidance. Since VAD is contentious, laws governing institutional objection could provide greater clarity and regulatory force than policies alone to better balance the interests of patients and non-participating institutions.

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.