‘It should be my choice’: voluntary assisted dying needs and preferences of Australians living with dementia

Abstract Voluntary assisted dying (VAD) is an end-of-life care option available to eligible Australians living with a terminal condition, though people living with dementia are typically ineligible to choose VAD as part of their end-of-life care. In order to develop equitable research-informed policy and practice, it is crucial to include the perspectives of all key stakeholders, including living experience experts whose voices are currently excluded from Australian VAD research. This study aims to capture the perspectives of people living with dementia by exploring their VAD-related needs and preferences. The study is grounded in a critical and phenomenological conceptual framework that prioritizes inclusive research design. Thirty-six people living with dementia in Australia self-selected to participate in an online survey. It found that the vast majority of participants wanted the option to access VAD themselves, and most wanted provisions for accessing VAD through advance care directives. Through open text responses, the participants expressed many concerns about potential end-of-life suffering and loss of dignity, with their VAD preferences often aligned with their wish to maintain autonomy and human rights. This is the first known Australian study to explore VAD from the perspective of people living with dementia, providing critical insights into their experiences as stakeholders in a highly contested policy and practice environment that is dominated by medico-legal voices. Centring on people living with dementia challenges misconceptions about their capacity to contribute to VAD research, demonstrating their importance as living experience experts and key stakeholders with clear needs and preferences for their end-of-life care.