Casey Haining, QUT School of Law and Australian Centre for Health Law Research

Dementia is now the leading cause of death in Australia. However, those living with dementia are practically unable to access voluntary assisted dying (VAD) for their dementia due to the eligibility criteria of current VAD laws that now exist everywhere in Australia except the Northern Territory.

Specifically, the requirements of VAD laws for people to both possess decision-making capacity (i.e., make decisions about themselves and communicate them) and be close to the end of life – usually with an expected death within six to twelve months – mean VAD for dementia is practically unavailable (in the absence of another qualifying condition).

In effect, by the time a person’s dementia is so advanced that they are at the end of life, they are unlikely to be able to possess the necessary decision-making capacity to request VAD for themselves. The NSW VAD law, meanwhile, specifically prohibits VAD for dementia.

Australia’s position compared to other countries

Australia’s position differs from that in other countries, such as the Netherlands, Belgium and Canada, where VAD for dementia is available. In the broadest sense this is approached in one of two ways – via a concurrent request or an advance request.

A concurrent request is where a person with decision-making capacity can request and access VAD while they have decision-making capacity, typically earlier in their dementia trajectory before they are at the end of life. In contrast, an advance request is where a person makes their preferences for VAD known while they still have decision-making capacity, which are then relied on later when the person can no longer make decisions for themselves.

Despite the possibility of VAD for dementia in other countries, its availability presents many practical and ethical challenges.

Current state of Australian evidence

Whether VAD should be available for dementia in Australia has received sustained attention, particularly in the popular media. There is also a limited but growing evidence base about attitudes towards this reform.

Discussions and research in Australia have not yet explored what a VAD framework and system might look like in Australia, particularly in light of the known challenges associated with permitting VAD for dementia.

Addressing the evidence gap

To address this evidence gap, a research team at QUT is carrying out a multi-phase project to explore the issue. Voluntary Assisted Dying and Dementia in Australia: an exploratory study involves synthesising existing local and international evidence, policies and laws, and carrying out exploratory semi-structured interviews with 63 participants including people living with dementia, carers and medical practitioners. Findings from these earlier stages will be tested this week at an in-person deliberative-style forum attended by people living with dementia, carers (past and present), policymakers, peak body representatives and medical practitioners.

The goal of this research is to start these conversations and contribute further to the limited Australian evidence base. The research not only considers whether VAD for dementia should be permitted but also considers how it could work if this policy decision were made in the future. These are complex discussions, but it is only by having these conversations that we begin unpacking some of the complexities.

Early findings from these interviews suggest that among people living with dementia and carers interviewed there were high levels of support for VAD for dementia, but there were mixed views about the circumstances in which this should occur. Our findings shed some light on what a possible framework could look like and some safeguards that could be put in place. They also provide insights into broader system design and a possible model of care, which are useful to inform implementation efforts if such reform were to occur.

These findings are timely, particularly as many of the Australian VAD laws are under review. While some states have already completed their first review, including Victoria and Western Australia, and did not consider this issue, there may be scope for this to be considered as part of other reviews. Queensland, for example, will be reviewing its VAD laws this year, and must consider changes to eligibility criteria as part of that.

Whether VAD should be available for dementia will likely continue to be a topic of discussion for years to come. Building a local evidence base is critical for informing these discussions.

More information about the project, which is funded by the Clem Jones Foundation, is available online.


Casey Haining is presenting some of the early findings of the project, focusing specifically on the subset of the earlier exploratory interviews with people living with dementia and carers, at the International Conference on Assisted Dying and Other End of Life Care being hosted by QUT’s Australian Centre for Health Law Research from April 8-11.

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