The End of Life Choice Act: A Proposed Implementation and Research Agenda

Young, Jessica; Winters, Janine Penfield; Snelling, Jeanne; White, Ben; Gavaghan, Colin; Geddis, Andrew; Egan, Richard

doi:10.2139/ssrn.3969548

Cited by 5 publications

(9 citation statements)

References 26 publications

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“…Access is referenced by items 5, 9, 11, 13, 14. Balancing safety and access is an important policy goal of any AD system [ 1 , 2 , 38 , 39 ]. Access must be facilitated for eligible people, while restricting access to those who are not.…”

Section: Discussionmentioning

confidence: 99%

“…Aotearoa New Zealand (NZ) is one of the latest jurisdictions to enact such legislation [ 1 ]. In November 2021, the End of Life Choice Act 2019 (the Act) came into force after a public referendum supported its introduction [ 2 ]. Given the nature and complexity of this new health service, in particular concerns regarding safety and accessibility in a bicultural environment unique to Aotearoa New Zealand, [ 3 ] research is vital to determine how the service is being implemented and integrated into end of life care [ 2 , 4 , 5 ].…”

Section: Introductionmentioning

confidence: 99%

“…In November 2021, the End of Life Choice Act 2019 (the Act) came into force after a public referendum supported its introduction [ 2 ]. Given the nature and complexity of this new health service, in particular concerns regarding safety and accessibility in a bicultural environment unique to Aotearoa New Zealand, [ 3 ] research is vital to determine how the service is being implemented and integrated into end of life care [ 2 , 4 , 5 ]. In addition, the Act requires that the operation of the new law be reviewed in 2024 to determine if any amendments to the legislation are “necessary or desirable” [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2023

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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/whānau, 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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2023

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“…Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often-rapid decline and death of people with terminal illnesses. By contrast, data suggest that early and open discussion of EOL issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear [ 25 , 26 ]. These benefit both patients and palliative health professionals [ 26 , 27 ].…”

Section: Palliative Care Health Professionalsmentioning

confidence: 99%

“…By contrast, data suggest that early and open discussion of EOL issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear [ 25 , 26 ]. These benefit both patients and palliative health professionals [ 26 , 27 ]. Patients’ perspectives regarding EOL interventions and use of technologies might differ from those of the health professionals involved in their care, and health-care professionals should recognise this and respect the patient’s autonomy [ 28 ].…”

Section: Palliative Care Health Professionalsmentioning

confidence: 99%

Palliative Care Nursing in Australia and the Role of the Registered Nurse in Palliative Care

Cheluvappa

Selvendran

2022

Nursing Reports

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The registered nurse has crucial preventative, therapeutic, sociocultural, and advocacy roles in promoting quality holistic patient-centred palliative care. This paper examines, describes, and analyses this multifaceted role from an antipodean perspective. We conducted systematic searches using PubMed, Google Scholar, government guidelines, authoritative body regulations, quality control guidelines, and government portals pertaining to palliative care nursing in Australia. This paper relies upon the information garnered from publications, reports, and guidelines resulting from these searches and analyses. The fundamental principles and guiding values of palliative care (and nursing) and the raison d’etre for palliative care as a discipline are underscored and expanded on. Australian Clinical Practice Guidelines (CPGs) pertaining to palliative end-of-life (EOL) nursing care and associated services are discussed. The relevant NMBA nursing standards that RNs need to have to administer opioids/narcotics in palliative care are summarised. The identification of patients who need EOL care, holistic person-centred care planning for them, and consultative multidisciplinary palliative clinical decision making are discussed in the palliative care context. Several components of advance care planning apropos health deterioration and conflicts are discussed. Several aspects of EOL care, especially palliative nursing care, are analysed using research evidence, established nursing and palliative care standards, and the Australian EOL CPGs.

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Winging it: a qualitative study of knowledge-acquisition experiences for early adopting providers of medical assistance in dying

2022

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Background: Medical Assistance in Dying (MAID) was legalized in Canada without a designated period for implementation. Providers did not have access to customary alternatives for training and mentorship during the first 1–3 years after legalization. Objective: To report on how doctors prepared for their first provision of MAID in the early period after legalization in Canada. Design: Qualitative research design within an interpretive phenomenological theoretical framework. We asked participants to describe their experiences preparing for first MAID provision. Analysis of transcripts elicited themes regarding training and information desired by early adopters for provision of newly legalized MAID. Participants: Twenty-one early adopting physician-providers in five Canadian provinces were interviewed. Results: Few formal training opportunities were available. Many early-adopting providers learned about the procedure from novel sources using innovative methods. They employed a variety of strategies to meet their needs, including self-training and organizing provider education groups. They acknowledged and reflected on uncertainty and knowledge gained from unexpected experiences and missteps. Key phrases from participants indicated a desire for early training and mentorship. Limitations: This study included only the perspective of physicians who were providers of MAID. It does not address the training needs for all health practitioners who receive requests for assisted death nor report the patient/family experience. Conclusion: The Canadian experience demonstrates the importance of establishing accessible guidance and training opportunities for providers at the outset of implementation of newly legalized assisted dying.

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The End of Life Choice Act: A Proposed Implementation and Research Agenda

Cited by 5 publications

References 26 publications

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

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

Palliative Care Nursing in Australia and the Role of the Registered Nurse in Palliative Care

Winging it: a qualitative study of knowledge-acquisition experiences for early adopting providers of medical assistance in dying

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