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

Abstract

Aim: This article outlines the End of Life Choice Act 2019. It highlights some of the key implementation issues to ensure the system operates safely and equitably after the Act comes into force. It also identifies priorities for research to ensure issues are detected and provision of assisted dying (AD) is monitored.

Method: We reviewed the End of Life Choice Act, assisted dying implementation literature and governmental reports.

Results: Effective system implementation depends on infrastructure, oversight and funding. In terms of service provision, we make recommendations about training for all health practitioners and providing practitioners; the nuances of discussing the "wish to hasten death"; conscientious objection; cultural safety for Māori; and minimising the complexity of delivering assisted dying practice. Structured research is needed to understand how the assisted dying system is operating.

Conclusion: This article contributes by identifying core issues for practitioners, patients and policymakers. Implementation is an ongoing process that continues after the Act starts. Data are required to know whether access is equitable, who is choosing to make use of the law, whether providers are well informed and whether the safeguards are working as intended. The implications of how the Act is implemented are significant for patients, whānau, health professionals and society.

Note:
Funding declaration: Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life DecisionMaking: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.

Conflict of Interests: Jessica Young is the recipient of a Post-Doctoral Fellowship from the Cancer Society of New Zealand. Jessica Young is an appointed member of Support and Consultation for End of Life in New Zealand (SCENZ) Group. Jessica Young and Janine Winters are members of the Ministry of Health’s End of Life Choice Advisory network. Jessica Young, Colin Gavaghan and Andrew Geddis were members of the 2020 End of Life Choice Act Referendum Society/Yes for Compassion. Colin Gavaghan was an expert witness for the plaintiff in Seales v Attorney General. Ben White was engaged by the Victorian and Western Australian Governments to design and provide the legislatively mandated training for doctors involved in voluntary assisted dying in those states. Ben White also developed a model Bill for voluntary assisted dying for parliaments to consider.

Keywords: Voluntary assisted dying, end of life choices, End of Life Choice Act 2019, implementation, future research

JEL Classification: I00, I10, I19, K00, K10, K19, K32, K39