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.

Impact of a prospective feedback loop aimed at reducing non-beneficial treatments in older people admitted to hospital and potentially nearing the end of life. A cluster stepped-wedge randomised controlled trial.

OBJECTIVES: To investigate if a prospective feedback loop that flags older patients at risk of death can reduce non-beneficial treatment at end of life. DESIGN: Prospective stepped-wedge cluster randomised trial with usual care and intervention phases. SETTING: Three large tertiary public hospitals in south-east Queensland, Australia. PARTICIPANTS: 14 clinical teams were recruited across the three hospitals. Teams were recruited based on a consistent history of admitting patients aged 75+ years, and needed a nominated lead specialist consultant. Under the care of these teams, there were 4,268 patients (median age 84 years) who were potentially near the end of life and flagged at risk of non-beneficial treatment. INTERVENTION: The intervention notified clinicians of patients under their care determined as at-risk of non-beneficial treatment. There were two notification flags: a real-time notification and an email sent to clinicians about the at-risk patients at the end of each screening day. The nudge intervention ran for 16-35 weeks across the three hospitals. MAIN OUTCOME MEASURES: The primary outcome was the proportion of patients with one or more intensive care unit (ICU) admissions. The secondary outcomes examined times from patients being flagged at-risk. RESULTS: There was no improvement in the primary outcome of reduced ICU admissions (mean probability difference [intervention minus usual care] = -0.01, 95% confidence interval -0.08 to 0.01). There were no differences for the times to death, discharge, or medical emergency call. There was a reduction in the probability of re-admission to hospital during the intervention phase (mean probability difference -0.08, 95% confidence interval -0.13 to -0.03). CONCLUSIONS: This nudge intervention was not sufficient to reduce the trial's non-beneficial treatment outcomes in older hospital patients. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019).

'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.

Process evaluation of a tailored nudge intervention to promote appropriate care and treatment of older patients at the end-of-life.

BACKGROUND: Non-beneficial treatment affects a considerable proportion of older people in hospital, and some will choose to decline invasive treatments when they are approaching the end of their life. The Intervention for Appropriate Care and Treatment (InterACT) intervention was a 12-month stepped wedge randomised controlled trial with an embedded process evaluation in three hospitals in Brisbane, Australia. The aim was to increase appropriate care and treatment decisions for older people at the end-of-life, through implementing a nudge intervention in the form of a prospective feedback loop. However, the trial results indicated that the expected practice change did not occur. The process evaluation aimed to assess implementation using the Consolidated Framework for Implementation Research, identify barriers and enablers to implementation and provide insights into the lack of effect of the InterACT intervention. METHODS: Qualitative data collection involved 38 semi-structured interviews with participating clinicians, members of the executive advisory groups overseeing the intervention at a site level, clinical auditors, and project leads. Online interviews were conducted at two times: implementation onset and completion. Data were coded to the Consolidated Framework for Implementation Research and deductively analysed. RESULTS: Overall, clinicians felt the premise and clinical reasoning behind InterACT were strong and could improve patient management. However, several prominent barriers affected implementation. These related to the potency of the nudge intervention and its integration into routine clinical practice, clinician beliefs and perceived self-efficacy, and wider contextual factors at the health system level. CONCLUSIONS: An intervention designed to change clinical practice for patients at or near to end-of-life did not have the intended effect. Future interventions targeting this area of care should consider using multi-component strategies that address the identified barriers to implementation and clinician change of practice. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry (ANZCTR), ACTRN12619000675123p (approved 06/05/2019).

The role of law in end-of-life decision-making in emergency departments and intensive care units: a retrospective review of current practice in a Queensland health service.

Objective There is limited evidence about how legal frameworks that underpin end-of-life decisions are applied in practice. This study aimed to identify how end-of-life decisions are made and documented in emergency departments and intensive care units. The secondary aim was to explore the extent to which the legal processes featured in these decisions. Methods A retrospective chart audit of 85 adult patients who died in the emergency departments and intensive care units of a Queensland health service was undertaken. Quantitative data were analysed and reported using descriptive statistics. Qualitative textual data were analysed using inductive content analysis. Results Nearly all admissions were unplanned (97.6%), and most patients (74.1%) were admitted from home. Only one patient had an advance health directive, although all had an eligible substitute decision-maker. The qualitative analysis revealed two main concepts - 'healthcare professionals choreograph the end of life' and 'patients and families are carried on an unplanned journey'. Conclusions There was limited documentation related to the application of the legal framework in these decisions. Healthcare professionals relied on their clinical judgment about what was in the best interest of the patient. It was common for there to be a substantial effort to achieve consensus in decision-making which coincidently complied with the law.

What Domains of Belgian Euthanasia Practice are Governed and by Which Sources of Regulation: A Scoping Review.

BACKGROUND: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests. METHOD: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation. RESULTS: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia. CONCLUSIONS: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape.

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.

Mapping Sources of Assisted Dying Regulation in Belgium: A Scoping Review of the Literature.

Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care.

Accessing voluntary assisted dying in regional Western Australia: early reflections from key stakeholders.

INTRODUCTION: Most Australian jurisdictions have passed voluntary assisted dying (VAD) laws, with some regimes already in operation. Inequitable access to assisted dying in regional communities has been described internationally. Although regional access to VAD has been identified as a concern in Australia, to date it has been understudied empirically. Western Australia (WA) was the second Australian jurisdiction to pass and implement VAD laws. Due to the vast geography of WA (and the potential for such geography to exacerbate regional access inequities) several initiatives were introduced to try to mitigate such inequities. This article aims to explore the effectiveness of these initiatives, and report on regional provision of VAD in WA more generally, by drawing on the early experiences and reflections of key stakeholders. METHODS: A total of 27 semi-structured interviews were conducted with 29 participants belonging to four main stakeholder groups: patients and families, health practitioners, regulators and VAD system personnel, and health and professional organisation representatives. Interviews were transcribed verbatim and analysed using inductive thematic analysis. RESULTS: Data analysis led to the description of four main themes: the importance of the Regional Access Support Scheme, the need for local providers, the role of telehealth in VAD provision and the impact of distance. CONCLUSION: Early experiences and reflections of key stakeholders suggest that while many of the regional initiatives implemented by WA are largely effective in addressing regional access inequities, challenges for regional VAD provision and access remain.

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.

Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study.

INTRODUCTION: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this 'point of access' barrier. METHODS: We conducted semi-structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. RESULTS: We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. CONCLUSION: Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. PATIENT OR PUBLIC CONTRIBUTION: Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants.

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.

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.

Facilitating regional and remote access to voluntary assisted dying in Western Australia: targeted initiatives during the law-making and implementation stages of reform.

Australians living in regional and remote communities face several barriers when accessing high quality health care. Voluntary assisted dying (VAD), a new and sensitive end-of-life option, presents a new challenge for residents living in these communities. Western Australia (WA) is the second Australian state to implement VAD laws and, to date, is the jurisdiction with the greatest need to address access inequities in regional and remote communities due to its vast area. This article identifies and explores initiatives introduced by the WA Government to address regional and remote access inequities in each of the two stages of the reform process: the stage of the reform process leading up to passing the law ('law-making stage'), and the stage of the reform process after the law was passed and prior to it commencing operation ('implementation stage'). The analysis reveals that several initiatives were implemented during each of the law-making and implementation stages of reform. Initiatives introduced in the law-making stage through inclusion in the legislation itself included dedicated guiding principles promoting equality of access for regional and remote residents, broadened qualification requirements for medical practitioners who can participate in VAD, allowing nurse practitioner administration, and mandating that statistics relating to regional and remote access are recorded and reported. Other initiatives dedicated to facilitating regional and remote access were not specifically provided for by legislation but were introduced during the implementation stage of the reform process. These include the establishment of a Statewide Care Navigator Service that administers a Regional Access Support Scheme and ensuring that the Statewide Pharmacy Service is accessible to regional and remote residents. Other initiatives intended to facilitate regional and remote access were provided for in legislation but given further content during the implementation stage. These include an access standard (contents determined by the CEO during implementation) and telehealth (supporting guidance around lawful use issued by the WA Government during implementation). This policy report reveals that WA took a considered and targeted focus to address regional and remote access in both the law-making and implementation stages of reform. Given VAD in WA is still in the early stages of its operation, it is too soon to determine how effective these initiatives have been in promoting regional and remote access to VAD in WA. Careful evaluation of these initiatives will be crucial to monitor their effectiveness and to assess whether additional measures are needed. Reflecting on the WA experience will also be valuable for other states as they legalise VAD and develop (and adapt) their own access initiatives.

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.

What next for voluntary assisted dying in Australia?

As all Australian states now have voluntary assisted dying legislation, and with territories likely to follow, the focus shifts to how these systems are operating in practice and can be improved. Evidence to date shows voluntary assisted dying has been implemented safely, but some access challenges remain. The legislation in each state requires the voluntary assisted dying system must be reviewed and such reviews must be evidence-based.

What the Doctor Would Prescribe: Physician Experiences of Providing Voluntary Assisted Dying in Australia.

BACKGROUND: Like many countries where voluntary assisted dying (VAD) is legal, eligible doctors in Victoria, Australia, have sole legal authority to provide it. Doctors' attitudes towards legalised VAD have direct bearing on their willingness to participate in VAD and consequently, on whether permissive laws can effectively facilitate access to VAD. The study aimed to explore how some Victorian doctors are perceiving and experiencing the provision of legalised VAD under a recently commenced law. METHODS: Semi-structured interviews with 25 Victorian doctors with no in-principle objection to legalised VAD were conducted between July 2019-February 2020. Interviews were recorded, transcribed, and analysed using thematic analysis. Ethical approval from the relevant institution was obtained. RESULTS: Doctors perceive or experience VAD to fundamentally challenge traditional medical practice. Barriers to access to VAD derive from applicant, communication, and doctor-related factors. Doctors' willingness to participate in VAD is situation specific.