Should dementia patients be given options for VAD?
MELBOURNE: Making voluntary assisted dying available to those with dementia raises a host of morally, ethically and legally difficult questions including who makes the final call when the person on their deathbed no longer has capacity to do it themselves.
The idea has received strong support in the early findings of a new study canvassing the views of those living with the condition and their families, though their opinions on when and how it could be used remain mixed.
With dementia now Australia’s leading cause of death, and with many state VAD laws under review including Queensland’s this year, expanding VAD eligibility criteria to include dementia should be at least canvassed as an option for the future, health law expert Casey Haining says.
Ms Haining, a research fellow at QUT’s Australian Centre for Health Law Research, is part of a team exploring the threshold question of whether those with dementia should have access to VAD, and if so, what legislative models could be used.
State and territory laws now effectively stop those with dementia from accessing VAD due to the requirements that a person has both decision-making capacity (being able to both make and communicate decisions about themselves), and be close to end of life (usually between six and 12 months). In NSW, it is specifically prohibited.
Some countries do allow it, including Canada, The Netherlands, Switzerland and Belgium.
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Ms Haining says extending VAD to those with dementia “presents many practical and ethical challenges”.
The study has pulled together local and international evidence, as well as conducting qualitative interviews with 63 individuals, including people living with dementia, carers and medical practitioners.
“Early findings 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,” Ms Haining says.
“Many Australian VAD laws are under review, including in Queensland, and there may be scope for this to be considered.
“The goal of this research is to start these conversations and contribute further to the limited Australian evidence base,” she says. “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.”
One option would be to consider allowing a person to both request and access VAD earlier in their dementia trajectory before reaching end of life, known as a concurrent request.
Another is an advance request, where a person makes it clear they want VAD while they still have decision-making capacity, a decision relied on later when the person can no longer make their own decisions.
“These are complex discussions, but it is only by having these conversations that we begin unpacking some of the complexities,” Ms Haining says.
More than 7000 people in Australia have died by VAD since it became legal in Australia in 2019, including 3329 last financial year alone, an analysis by The Australian of the latest state and territory data reveals. It equates to about 2 per cent of all deaths. Queensland has reported 2110 VAD deaths, the most of any jurisdiction, despite it becoming a legal option only in January 2023.
Voluntary assisted dying advocacy group Go Gentle Australia chief executive Linda Swan says the potential use of VAD for those with dementia is the most common question brought up with her organisation at community forums.
“Some people with dementia die beautiful deaths, but many don’t, so it is understandable that some people have serious concerns about what end of life looks like for their loved one with dementia,” Ms Swan says.
Research Go Gentle commissioned last year made clear this was “an extremely complex issue”, she says, pointing to the role of health practitioners in a potential end-of-life situation with someone with dementia.
“They would be in a situation where a person can’t articulate their wishes any more, so it’s very understandable why practitioners would be extremely uncomfortable,” Ms Swan says.
“There is so much more to be done to meet the concerns of all the various stakeholders – those with dementia and their carers, health practitioners, politicians, lawyers and others. I have not yet heard of anything remotely like a workable solution, but I do think we need to recognise that it’s distressing and heartbreaking for some people to hear this.”
The Catholic Church is an opponent of VAD and is deeply concerned about any move to extend it further.
“Any proposed extension of euthanasia to people who have been diagnosed with dementia replaces the requirement of voluntariness with something lesser, ultimately putting the decision about when someone should die into the hands of others,” a spokeswoman for the Catholic Archdiocese of Sydney says. “This is a very dangerous path.”
“The recharacterisation of so-called safeguards as ‘barriers to access’ is unfortunately all too common in jurisdictions that allow euthanasia and assisted suicide, but any such expansion creates further risks for our most vulnerable, and should be rejected absolutely,” she says.
Ms Swan says she is also concerned the hard-won gains in having VAD accepted by the majority of the population could be placed in jeopardy by expanding its scope.
“We’ve fought long and hard for people to have some choice at the end of their lives. It was a careful process, and people seem generally comfortable with issues like eligibility and decision-making capacity.
“If you take away one element, and allow people without capacity access to VAD, that’s a fundamental change. And we might need a different debate about that, one of how to best help people with dementia rather than changing the assisted dying laws,” she says.