What do health care professionals want to know about assisted dying? Setting the research agenda in New Zealand.

BACKGROUND: New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. OBJECTIVE: To identify research priorities regarding the implementation and delivery of AD in New Zealand. METHODS: Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. RESULTS: One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the 'effectiveness of safeguards in the Act to protect people'; the lowest rated topic was research into the 'experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided'. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for 'structurally disadvantaged' groups; and ensuring the well-being of patients, families/whanau, providers and non-providers. CONCLUSIONS: Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice.

A Netnographic Approach: Views on Assisted Dying for Individuals With Dementia.

Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers' feelings; and moral/personal dilemmas. Findings reveal that the majority of communities' contributors fear developing dementia. They support the provision of advance euthanasia directives-written by competent patients-to prevent unnecessary suffering, and protect patients' wishes and freedom of choice when decision-making competency is lost.

Exploring the early experiences of assisted dying in Aotearoa New Zealand: a qualitative study protocol.

INTRODUCTION: Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of legislation is imperative. AD is a topic that, by nature of its complexity and inherent ethical issues, lends itself to qualitative research. Using the objectives of the statutory framework, this qualitative study aims to provide a robust review of the newly formed AD service in New Zealand and the extent to which it is safe, people-centred, dignity-enhancing, accessible and available equitably to all eligible people. METHODS AND ANALYSIS: The research uses an appreciative inquiry design to focus on what is working well, what could be improved, what constitutes the 'ideal' and how to enable people to achieve that ideal. We are using online semi-structured interviews and face-to-face focus groups to explore the experiences of key stakeholders: eligible/ineligible service users; eligible/ineligible service users with impairments; families of service users; AD providers; non-providers (providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle); health service leaders; and Maori community members. An estimated 110 participants will be interviewed. We will conduct thematic and regulatory analyses of data. ETHICS AND DISSEMINATION: The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). To disseminate the findings, we will draft resources to support interviewee groups, to be developed with feedback from stakeholder meetings. We will submit evidence-based recommendations to inform the government review of the End of Life Choice Act 2019. Findings will be disseminated in peer-reviewed publications, conferences, webinars, media, stakeholder feedback sessions and accessible research briefings.

Exploring the impact of e-learning modules and webinars on health professionals' understanding of the End of Life Choice Act 2019: a secondary analysis of Manatu Hauora - Ministry of Health workforce survey.

AIM: To explore the importance of health workforce training, particularly in newly regulated healthcare practices such as assisted dying (AD). This study aims to analyse the socio-demographic factors associated with health professionals' completion of the e-learning module and attendance at the two webinars provided by the New Zealand Ministry of Health - Manatu Hauora (MH) and whether completion of the e-learning module and webinars supported health professionals' understanding of the End of Life Choices Act 2019. METHOD: Secondary analysis of the MH workforce surveys conducted in July 2021. RESULTS: The study findings indicate that health professionals who are older, of Pakeha/European ethnicity and work in hospice settings are more likely to complete the e-learning module, while females are more likely to attend webinars. CONCLUSION: Despite low completion and attendance rates, the study highlights the positive association between training and health professionals' overall understanding of the Act. These results emphasise the need for enhancing training programmes to increase health professionals' knowledge and competence with AD. Furthermore, the research proposes focussing on healthcare practitioners in the early stages of their careers and not directly engaged in offering AD services, as well as Maori and Pasifika health practitioners.

Health professionals' understanding and attitude towards the End of Life Choice Act 2019: a secondary analysis of Manatu Hauora - Ministry of Health workforce surveys.

AIM: To determine socio-demographic factors associated with health professionals' understanding of the End of Life Choice Act (the Act), support for assisted dying (AD), and willingness to provide AD in New Zealand. METHOD: Secondary analysis of two Manatu Hauora - Ministry of Health workforce surveys conducted in February and July 2021. RESULTS: Our analysis showed (1) older health professionals (age>55) had a better overall understanding of the Act than their young colleagues (age⁢35), (2) female health professionals were less likely to support and be willing to provide AD, (3) Asian health professionals were less likely to support AD compared to their Pakeha/European counterparts, (4) nurses were more likely to support AD and be willing to provide AD when compared to medical practitioners, and (5) pharmacists were more willing to provide AD when compared to medical practitioners. CONCLUSION: Several socio-demographic factors, including age, gender, ethnicity, and professional background, are significantly associated with health professionals' support and willingness to provide AD, with likely consequences for the AD workforce availability and service delivery in New Zealand. Future review of the Act could consider enhancing the roles of those professional groups with higher support and willingness to assist in providing AD services in caring for people requesting AD.

Conceptual framework for assisted dying for individuals with dementia: Views of experts not opposed in principle.

Dementia is one of the prominent conditions for which an aging population has been seeking end-of-life solutions such as assisted dying. Individuals with dementia, however, are often unable to meet the eligibility criteria of being mentally competent and are thus discriminated against in relation to assisted dying laws. Provided that the assisted death directive is being made in sound mind, it is still of concern whether these advance directives can be appropriately framed and safeguarded to protect the wish of these vulnerable individuals while preventing harm. Therefore, to establish consensus views of experts on primary issues of, and concerns about, assisted dying for individuals with dementia as well as exploring tentative conceptual framework to safeguard practice and application, a three-round Delphi study was conducted. A core group of 12 experts from five countries was recruited comprising expertise in domains relevant to assisted dying and dementia. A semantic-thematic approach was applied to analyze the 119 generated statements. Evaluation of these research statements resulted in full consensus of 84 (70%) items. Our primary findings highlight seven core domains: applicability of assisted dying for dementia; ethical, practical, and pathological issues regarding the application of assisted dying; and ethical, legal, and professional recommendations for the ways forward. Despite the issues surrounding the provision of assisted death for individuals with dementia, our findings lead us to cautiously conclude that devising "adequate" safeguards is achievable. The result of this research may benefit future research and practice.