When choice isn't enough: the challenge of accessing voluntary assisted dying
(Photo credit: @curatedlifestyle, Unsplash )
What happens when a patient has done everything required to access voluntary assisted dying (VAD), but barriers still stand in the way?
This was the experience of a 38-year-old patient living with end-stage liver disease in regional Queensland, who had successfully navigated the VAD process through telehealth.
Yet because the federal Criminal Code Act (1995) prevented their GP from sending an electronic prescription, the medication had to be delivered by post. Before it arrived, the patient lost the capacity to reaffirm their decision and could no longer proceed with VAD.
Cases like this highlight a broader challenge facing VAD in Australia: legal eligibility doesn’t always translate into practical access.
The law may give you the right to choose, but accessing that choice when it matters most is another issue entirely.
A willing doctor may be hard to find, the place caring for you may not participate, you may not have carer or family support, and access may mean travelling when you’re already seriously ill.
By the time an eligible patient finally finds a way through, they may no longer be physically capable of affirming their choice.
UQ Law School’s Dr Ruthie Jeanneret has examined this divide between legal eligibility and real-world access through research with patients and family caregivers who navigated VAD in Victoria and Canada.
“When the system worked, some family caregivers spoke of how grateful the people they supported were to die in a way that was on their own terms with people surrounding them whom they loved,” Dr Jeanneret said.
“For others, legality didn’t guarantee access.”
Where access breaks down
Victoria was the first Australian state to legalise VAD in 2017, with its scheme beginning in 2019.
With VAD laws now passed in every Australian state and territory, attention has turned to how systems works in practice.
Eligibility generally requires patients to have decision-making capacity, a voluntary choice and an advanced condition expected to cause death, although requirements vary between jurisdictions.
Multiple practitioners assess eligibility and whether the choice is voluntary, but some patients struggle before reaching even those safeguards.
“Just because it's lawful doesn't mean that it's particularly accessible in practice,” Dr Jeanneret said.
“People may not know VAD is available or whether they qualify. Their doctor may not participate, while services designed to help people navigate the process can also prove difficult to reach.
“A sticking point for access is actually finding a way into the system in the first place.”
Institutions can create another hurdle, while Commonwealth restrictions mean some VAD discussions can’t occur by phone or telehealth – a particular burden when patients or practitioners must travel long distances.
“Any kind of small delay can make a big difference in terms of somebody's ability to actually access VAD,” Dr Jeanneret said.
Safeguard or barrier?
According to Dr Jeanneret, Australia has deliberately built cautious VAD models, but assessments by multiple practitioners were among the safeguards working well and promoting safety.
However, she argues that not all restrictions contribute equally to patient safety.
“There are other safeguards that aren't really safeguards. They're not increasing the safety of the system; they're actually just creating a more difficult system and putting up barriers,” Dr Jeanneret said.
She points to telehealth rules that can force in-person discussions, residency requirements that can exclude otherwise eligible patients, and limits in some jurisdictions on health professionals raising VAD as a possibility unless the patient asks first.
The carers making access possible
If barriers exist, who carries the burden of overcoming them?
In a 2024 study, Dr Jeanneret found the critical role of family and caregivers is largely invisible in legislation. The study stressed the importance of health systems collaborating with this group, as well as patients themselves, to monitor and improve VAD services and processes.
“Patients are reliant on support from family members to help them access VAD, and without them, it can be nearly impossible,” she said.
Carers described taking on the work of coordinating appointments, finding practitioners and negotiating with institutions, with some feeling a responsibility to improve the path for others after their own difficult experiences.
“There were a group of carers who essentially felt compelled to try and change the system for the better for other people,” Dr Jeanneret said.
“I think that's a lot of responsibility to put on people who didn't sign up for that role.”
Dr Jeanneret’s research has also informed VAD policy discussions and reform, including Victoria’s 5-year review of its VAD laws and the ACT Government’s consideration of how its own VAD framework should address institutional barriers. Her work at UQ now extends to the experiences of informal carers navigating aged care.
The dementia timing trap
Dementia creates a different problem, with 2 VAD eligibility requirements potentially colliding.
A person must be close enough to death while still having decision-making capacity at key stages.
But someone with dementia may retain this capacity in the earlier stages of their illness, only to lose it before reaching the end-of-life threshold.
Australia doesn’t allow an advance VAD request for use after a patient loses capacity.
“You can't pre-empt, you can't pre-enrol – not in Australia,” Dr Jeanneret said.
“Dementia is probably the biggest policy issue facing the future of voluntary assisted dying in Australia.”
A 2026 study by Dr Jeanneret identified some benefits in Canada’s approach. Some patients already assessed and approved for VAD can agree in writing to waive final consent if they lose capacity before an agreed date.
Even then, the VAD process won’t go ahead if there are signs the patient is no longer comfortable with that decision.
“The practical challenges will remain that it can be very confronting for carers and health professionals alike to actually act on the patient’s choice,” Dr Jeanneret said.
“In general, VAD systems are operating safely across the world, so the next step is really to consider how they can operate more effectively,” she said.
When VAD works, Dr Jeanneret’s research shows how having a choice can positively impact people at the end of life. Australia’s next task is to protect patients without allowing avoidable barriers to put the same choice beyond reach.
Dr Ruthie Jeanneret contributes to UQ Law School’s Medicine, Health and Wellbeing research theme.
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