Data is not a word that comes immediately to mind when discussing voluntary assisted dying (VAD), which is still a contentious subject in many places and amongst many community groups, despite legislation now being introduced in most of Australia.
Yet in the words of Dr Margaret O’Connor AM, who was awarded a Churchill Fellowship in 2018 (supported by Dr Dorothea Sandars and Irene Lee) to investigate palliative care and voluntary assisted dying, ‘Data can be a comfort for those who support VAD, that the legal process has been followed and there’s not overuse.’
Margaret, an Emeritus Professor of Nursing at Monash University, continues, ‘And for those who are uncomfortable with VAD, the data is important for exactly the same reasons. It means VAD isn’t a hidden procedure, but visible to both the community and other interested parties.’
Key topics include access to end-of-life care, the process for making a formal request, and the journey between receiving medication and death.
Margaret’s Fellowship took her to countries with diverse VAD legislation and practices – Belgium, Germany, the Netherlands, Canada and the USA. From the perspective of ensuring choice at the end of life, Margaret explored how requests for VAD are managed in palliative care settings. She researched the experiences and expectations of medical practitioners, governments and community members, finding that in places where VAD is approved, some clinicians will be ‘early adopters’ of new legislation and will necessarily become leaders of the process. ‘Those not afraid to speak of their experiences need to be recognised, supported and protected in this leadership role,’ she says.
She also saw how structural issues, including rural and regional remoteness, could inhibit the availability of many aspects of healthcare, including assistance in dying. This highlighted the need for enhanced messaging about options regarding end-of-life care in order to ensure better community understanding.
‘Additionally,’ Margaret wrote, ‘in relation to VAD, there is a need to temper community expectations of the ‘right to die’ with the ability [of the healthcare system] to deliver, as well as imparting clear messages about eligibility criteria.’
In 2022, Margaret, who is based in Melbourne, was awarded a Churchill Impact Funding grant enabling her to enhance her work with the Victorian Department of Health to convene a consensus workshop of state and territory representatives responsible for implementing VAD in their jurisdictions.
The project, largely completed by the end of 2022, was to agree on the items and definitions for a minimum dataset with the support of a data consultant to provide feedback on the agreed dataset and its analysis. A final workshop will see consensus on the minimum dataset. The goal is to develop a consistent national minimum dataset (NMDS) for voluntary assisted dying. This is now closer as a direct result of the work done by Margaret and her colleagues.
With VAD legislation being introduced in many jurisdictions around Australia, Margaret also chairs a research sub-committee on research and data-related structural issues reporting to the Victorian VAD Review Board.
Reflecting on the results of the work undertaken with the assistance of the Churchill Trust Fellow Impact Fund, Margaret says she has been assured that getting the buy-in of all states has been ‘a significant achievement’. Achieving a truly national data picture is unlikely, though, until at least 2024, given that NSW begins VAD at the end of 2023 and the two territories are still to set commencement dates.
‘On a positive note, this provides more time to keep working together towards a formal national relationship,’ Margaret says, noting that the project now has comprehensive input from each state and a New Zealand representative. The goal is well within sight.
The onus currently rests with the Victorian VAD Review Board, which will take responsibility for further progressing this work, including the timing of a formal relationship around national data. The end beneficiaries of this work will be the broader community and the many clinicians responsible for end-of-life care.
Meanwhile, the data continues to be refined, as various state legislation is enacted.
‘I anticipate this will continue for some time,’ Margaret says, ‘until each state is settled with agreed data,’ showing that despite the emotiveness surrounding the topic, facts and figures remain a vital part of the decision-making process.
Margaret’s Impact Funding grant enabled: work on the Victorian dataset, hosting of consensus meetings, data consultant engagement, preparation and presentations.
Are you a Churchill Fellow? Do you have recommendations and ideas in your Fellowship report that you’re yet to implement? Do you have a tangible plan for making a difference but need the funding and support to make it happen? We encourage all Fellows that have submitted their Fellowship Report to consider applying for this opportunity.