The ACT’s voluntary assisted dying laws could be expanded to people who have lost their decision-making capacity, but not before the law comes into effect. Photo: Dying with Dignity NSW Facebook.
There’s still a possibility that those with reduced decision-making capacity could access the ACT’s voluntary assisted dying (VAD) scheme, but that broader conversation won’t start until at least 2026.
The ACT Government has released a paper based on consultation with experts and community organisations (but not the broader public), focused specifically on a person’s loss of capacity following final approval for VAD.
It comes after then-backbencher Dr Marisa Paterson held off on introducing amendments to the legislation mid-last year that called on extending VAD to people with dementia.
The paper’s release may seem like a small step, but one advocate has described it as a “major positive crossroad” in VAD’s journey in the ACT.
It noted loss of capacity was a “common occurrence” when people were close to dying and could be due to factors such as the effects of medication, as a consequence of how some progressive diseases develop, acute illnesses and infections, or a “pre-terminal” event.
“This means that some people who have been found eligible for VAD may become ineligible for the last step [which is] to receive the VAD substance,” the paper noted.
(Currently, VAD requires a person to have capacity at four points across the process: first assessment, consulting assessment, final assessment or approval, and administration of the VAD substance.)
There is limited data available relating to the issue of loss of capacity for a VAD applicant after they’ve received final approval. According to a recent report commissioned by non-profit Go Gentle, uptake of VAD by people with dementia (in countries where it’s possible) was “very low”, at about 3 per cent of all VAD deaths in the Netherlands and less than 1 per cent in Canada, Belgium and Luxembourg.
The ACT’s laws are unique, as unlike other Australian jurisdictions, there is no timeframe-to-expected-death requirement.
“These differences have the potential to minimise the extent to which people lose capacity during the VAD process,” the ACT Government paper noted.
“It will take a period of implementation to determine whether the lack of a set timeframe to death will impact the issue of late loss of capacity.”
Health Minister Rachel Stephen-Smith voiced the government’s commitment to further consider options for consultation and potential reform.
“We accept that people’s choices about how they want to live and how they want to end their life must be respected, and we seek to minimise their pain and suffering,” she said.
“It is hard to see how it is equitable if this choice and control is then removed if a person is at risk of losing capacity at the final voluntary assisted dying step.
“While there is broad community support for exploring this issue, the consultation confirmed that it is ethically and legally complex.”
Ms Stephen-Smith understood this was a “pressing issue” in the community but stated the focus needed to be on making sure the VAD scheme was operational for its start date of 3 November 2025.
“Observing how our unique scheme is operating for a period of 12 months is the necessary next step in ensuring and building community confidence in the scheme, and understanding how our unique scheme helps to address these issues already,” she said.
“We must balance a person’s right to choose with the need to ensure their consent remains clear, voluntary and informed, especially in such a sensitive process.”
A number of different elements for the scheme were considered during the paper’s research stage, including a potential VAD attorney and the role of advanced care directives.
Some experts expressed concerns about both models.
These included how an advanced care directive could accommodate people who changed their mind, and the potential risks for coercion and abuse if a trusted person is elected as a VAD attorney.
The legislation’s language was previously tightened to better protect people with a disability or mental disorder from being pressured into accessing VAD.
The government has committed to consider options for consultation and potential reform from early 2026, meaning there could be changes before the legislated review of the law in 2028.
Dying with Dignity ACT president Sam Delaney said this was “significant”.
“One of the big issues [we’ve heard] is that there isn’t the appetite to wait three years before a review [to consider other options],” he said.
“The government did a hell of a lot of research [for this paper] … and it’s a credit to them that rather than wait and wait and wait, they want to talk and start designing a system that suits the ACT [before 2028].”
Mr Delaney said while dementia was a clear example of a time when someone would lose decision-making capacity, there are other diseases where this was prevalent, including ALS, Parkinson’s and motor neurone disease.
Time would tell how the ACT’s unique elements could accommodate these demographics.
However, the fact that the late loss of capacity was something that could be further discussed, rather than being taken off the table entirely, was a “major positive crossroad”.
“To some people, this is so big, it’s hard to fathom,” Mr Delaney said.
“There are people who are watching this from all over the country.”
