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Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying

Period

10-2021 to 9-2025

Abstract project

What is the aim of the project?

This research project aims to enhance end-of-life care through optimal regulation. It will explore regulation of voluntary assisted dying (VAD) as a new and important aspect of end-of-life decision-making and propose a new optimal regulatory framework for VAD in Australia.

Why is this project needed?

  • VAD and its regulation is new in Australia. Very little is known about how the current regulation of VAD is working in practice and how it can be improved.
  • VAD regulation includes a range of regulatory forces, including laws, guidelines and policies, ethical codes and training. Existing research about regulating end-of-life care has focused only on one type of regulation i.e. only law or policy. Exploring end-of-life care in this way fails to see the critical overall perspective of how all regulatory forces are connected and function together to guide decision-making about VAD.
  • VAD is governed not only by regulation specifically about VAD, but also by the regulation that guides wider end-of-life care, and health and medical practice generally. This fragmentation and complexity in regulation can lead to inconsistent and suboptimal guidance for doctors, nurses, other health professionals, patients and families.

What does the project involve?

This project has two Stages:

Stage 1: Determine how current regulatory forces – including laws, guidelines and policies, ethical codes and training – work together to guide decision-making about VAD.

Stage 1 will catalogue existing regulation of VAD in Australia and identify the complete set of regulatory forces that guide decision-making about VAD. This will involve legal and policy analysis, document analysis and semi-structured interviews with terminally-ill patients and their families, health professionals, and regulators.

This analysis will produce a holistic ‘regulatory map’ that explains how various regulatory forces influence VAD decision-making, and how they operate in practice.

This research includes learning from two case study countries where VAD is already legal: Canada and Belgium. How these countries regulate VAD will be mapped as outlined in Stage 1 (above). The strengths and weaknesses of the Canadian and Belgian approaches to VAD will then inform the design of an optimal regulatory framework for Australia.

Stage 2: Design an optimal holistic regulatory framework that strategically aligns regulatory forces guiding decision-making about VAD to promote high quality, patient-centred end-of-life care.

Stage 2 will develop an optimal holistic regulatory framework for VAD in Australia. This involves critically analysing current VAD regulation and proposing how existing and new regulatory forces could function together effectively to promote high quality, patient-centred end-of-life care. Designed in collaboration with regulators and key stakeholders, the framework will improve laws, guidelines and policies, ethical codes, medical training and practice.

Funding

ARC future fellowship

Project group

Coordinator QUT, Australian Centre for Health Law Research
Madeleine Archer, PhD Candidate
Ben White, Professor
Lindy Willmott, Professor
Eliana Close, Postdoctoral researcher

Collaborator End-of-Life Care Research Group Vrije Universiteit Brussel & Ghent University
Luc Deliens, Professor
Kenneth Chambaere, Professor
 

Collaborator  Dalhousie University
Jocelyn Downie, Professor

The Australian National University’s School of Regulation and Global Governance (RegNet) with Professor Sharon Friel will support the project’s regulatory components.