Designing a voluntary assisted dying framework for dementia: an Australian qualitative study with people living with dementia and carers

Abstract

In Australia, unlike some international jurisdictions, there is limited scope for a person living with dementia to access voluntary assisted dying (VAD) for their dementia alone. While there is growing attention on whether VAD for dementia should be available in Australia, there is limited evidence about what a regulatory framework should look like if that policy decision were made in the future. In this paper, we report the findings of a qualitative interview study that explores the perspectives of 30 participants, including people living with dementia and past and present carers, on features of a VAD regulatory framework that could permit VAD for dementia in Australia. Our participants expressed mixed views about desirable regulatory features in relation to approaching regulatory design, eligibility criteria, process factors, safeguards and service delivery, with several challenges identified. Despite this, our participants largely believed that a VAD framework could be devised to permit access and acknowledged the importance of both a legal framework and careful system design to foster safety and optimise service delivery.