74 The complexity of VAD and dementia and the challenges for advance care planning

<h3>Background</h3> Dementia (and related diseases) will soon become the leading casue of death for Australians. Increasing prevalence causes understandable concern about the impact of living with dementia and what this means for end-of-life choice. Whether someone living with dementia can access Voluntary Assisted Dying (VAD) and include such a request in an Advance Care Directive, is the question most often to Go Gentle and similar organisations. The answer – that the architecture of Australia’s VAD laws excludes most people with dementia – is met with anguish and disbelief. <h3>Aim</h3> To help the community understand the complexity of VAD access for people with dementia and explore why dementia is not an eligible condition. The purpose was to encourage careful and informed conversations and identify knowledge/evidence gaps. <h3>Method</h3> An Issues Paper researched and written by an experienced neuropsychologist with a special interest in dementia. Information and comparative data were collated via desktop research, alongside an extensive literature review and targeted interviews. The key challenges of allowing VAD access for dementia and how these are approached elsewhere in the world were also captured. <h3>Results</h3> The paper explored why dementia is excluded from VAD laws and why changes to allow access for dementia would present significant practical, political, medical and ethical challenges. Two primary hurdles were identified: Australia’s VAD laws require a person to have capacity to make and communicate their decisions every step of the way. This is to ensure VAD is truly voluntary. Australia’s VAD laws are designed for people at the very end of life. For most, this means being within 12 months of a natural death. Dementia doesn’t fit this framework: the illness can take years, even decades, to run its course. Most lose capacity before the last year of life. Significantly, the paper found that, even in countries where VAD is available for dementia, uptake is limited, and doctors and families are reluctant to be involved. <h3>Discussion</h3> VAD for dementia is complex and contentious. The nature and trajectory of dementia, characterised by a gradual loss of cognitive capacity, complicates notions of informed consent and personal autonomy central to VAD. Ethically, there is a tension between respecting personal choice and safeguarding the vulnerable. As dementia prevalence rises, there is a need for timely and open discussions about end-of-life and to document wishes. How to address this without unfairly raising expectations is a challenge for Advance Care Planning.