Data is not a word that comes immediately to mind when discussing Voluntary Assisted Dying (VAD), still a contentious subject in many places and amongst many community groups, despite being legally sanctioned in most of Australia, with more approvals likely to come.
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 that 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 the same reasons. It means VAD is not a hidden procedure but is visible to both the community and other interested parties.’
Key topics include people’s access to end-of-life care, what occurs before a formal request is made, and the journey between the individual’s receiving medication and their death.
Margaret’s Fellowship took her to places where diverse VAD legislation and practices apply – 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/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 to ensure better community understanding.
‘Additionally,’ Margaret wrote, ‘in relation to VAD there is a need to temper the community expectations of the ‘right to die’ with the ability [of the health care system] to deliver, as well as imparting clear messages about eligibility criteria.’
In 2022, Margaret, who is based in Melbourne, was awarded a Churchill Trust Fellow 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 end goal is a consistent National Minimum Dataset (NMDS) for voluntary assisted dying. Achieving this has moved closer as a result of the work done by Margaret and her colleagues.
With VAD being increasingly sanctioned in 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 Impact Funding, Margaret says she has been assured that getting the buy-in of all States has been ‘a significant achievement’, although achieving a truly national data picture is unlikely until at least 2024, given that NSW begins VAD at the end of 2023 and the two Territories have not 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 good representation from each State and attendance from a New Zealand representative, meaning the goal is well within sight.
The current onus rests with the Victorian VAD Review Board, which will now take responsibility for further progressing this work, including discussing the timing of a formal national data relationship, the end beneficiaries of which will be the broader community and the many clinicians responsible for end-of-life care.
Meanwhile, progress continues, with refinement occurring 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.
Impact Funding, a post Fellowship opportunity, supports selected Churchill Fellows to implement a project of their design to achieve further impact in their field.