A new proposal is challenging whether Australia’s laws leave families watching prolonged deaths with no legal option to intervene.
“If this had been an animal found in my care, I’d have been charged.”
As Angie List watched her mother die a prolonged, distressing death from advanced dementia, it was this thought that stayed with her — one she says exposes a gap in Australia’s end-of-life care system.
“Why are we allowing humans to get in that condition?” she asked.
Ms List has created a petition for “Hem’s Law”, a proposal that would allow families and clinicians to hasten death in the final stages of dementia under strict conditions.
Although her proposal is not related to voluntary assisted dying laws, debate grows over whether current VAD frameworks can ever accommodate people who have lost decision-making capacity.
This article originally ran on TMR’s sister site, Health Services Daily. TMR readers can sign up for a discounted subscription.
Hem’s story
Ms List’s mother, Helen Lister, was a joyful and passionate person.
“She called herself Hem – a name she invented because she thought ‘Grandma’ made her sound old, and she was far too vibrant for that,” Ms List told TMR.
Hem died last month after losing the ability to swallow, a common but confronting stage of late dementia.
When swallowing stops, families are often left with no real alternative. Continuing to offer food or fluids risks choking, but withholding them can mean days and sometimes longer of decline.
As Ms List wrote in her petition:
“In the final stage of Alzheimer’s or other dementia, the progressive destruction of the brain’s swallowing centres means complete loss of swallowing is not a risk – it is the destination. An estimated 15,000 Australians reached that destination in 2024.”
At the end of her life, Hem weighed around 24 kilograms. Her mouth was open continuously for 10 days with cracked and dry tongue despite her family’s attempts to soften it with sprays and swabs. She had pressure sores from where her arms rested on her own body and had to stay in the same position for days because she was in too much pain to move, despite pain relief.
“I don’t think you would believe me if I said she was literally skin and bone … there was no flesh on her anywhere,” Ms List said.
The end of her life was traumatic for all involved.
“As a mother, I know for a fact she would have been horrified at what her children went through,” Ms List said.
Hem’s Law is a proposed provision within guardianship legislation that would permit a family member or legal representative to authorise a medically assisted death once the dying process has clearly begun.
The proposal would apply only where:
- Loss of swallowing is confirmed by a doctor or speech pathologist;
- The active dying phase is certified by two independent practitioners;
- Written authorisation is provided with legal and medical oversight.
As Ms List said, it’s not a quality-of-life judgement, it’s about the quality of a death.
“Once loss of swallowing happens, death is certain within a matter of days or weeks. The only decision is whether it is protracted, painful and distressing for all involved, or peaceful and swift,” she said.
Is palliative care enough?
Ms List’s argument challenges a long-standing assumption in end-of-life care that palliative care alone is sufficient to manage suffering in the final stages of life.
“Palliative care is a cocktail of drugs. If we have to sedate people into unconsciousness to make the dying process bearable, then it tells you that the dying process is not a comfortable process at all.
“The second thing is that the opioids that are used – it is well known within the research that they are not equally effective on all members of the population,” she said.
“Thirdly, there are inconsistencies in the way palliative care is provided around the country. As morphine suppresses the respiratory system, some doctors provide a morphine driver during the dying process.
“There are already clinicians who are more comfortable pushing that additional dose until that hastens the death. But there are many more who are not because they do not want to be the one that gives that final dose that potentially pushes [someone] over the edge,” she said.
Related
Ms List highlighted a legal provision called the Doctrine of Double Effect, which ideally is supposed to protect clinicians in this space.
“If your intention is pain relief, but ultimately, that dose of pain relief that you gave ends a person’s life, you can’t be held liable. I don’t think a lot of clinicians are aware of that,” she said.
“Why are we subject to a lottery depending on where you live and depending on how comfortable a clinician is in hastening the death process through medication?” she asked.
A legal gap with no easy fix
While Hem’s Law is framed as distinct from voluntary assisted dying, it enters a policy space that is already under scrutiny.
Currently, the requirements of VAD laws require a person to possess decision-making capacity and be close to the end of life, usually within six to 12 months.
Generally, if someone still has decision-making capacity, they’re often earlier in their dementia trajectory and not near the end of their life.
“If someone loses decision-making capacity, and they might be in the more advanced stages of their dementia, they will no longer be eligible under our existing laws, because you need to retain decision-making capacity throughout the process in order to access voluntary assisted dying,” said Casey Haining, a research fellow at QUT’s Australian Centre for Health Law.
This gap has prompted growing interest in whether VAD frameworks could be adapted to include people with dementia.
A research team at QUT is carrying out a multi-phase project to explore the issue of voluntary assisted dying with dementia.
Their goal isn’t to advocate for change or decide on a position.
“Our goal with this research is to explore some of those complexities and how people feel about that. It’s to start the conversation, not to advocate a position.
“If a policy decision is made in the future, we want that to be made based on informed deliberations,” Ms Haining told HSD.
Internationally, some jurisdictions have taken different approaches. In countries such as the Netherlands and Belgium, people can access assisted dying earlier in the course of their illness while they still have capacity. Others allow for advance requests, where a person outlines conditions under which they would want assisted dying at a later stage.
“The key thing is that it would always need to be the person’s choice to fit within the voluntary assisted dying regime, because that’s the essence of the structure of that framework,” Ms Haining said.
That distinction sits at the heart of the debate. VAD requires a person to choose death themselves while Hem’s Law would allow that decision to be made on their behalf.
However, as Ms List says, her proposal is not about asking to end a life.
“We’re asking to hasten the process so that the suffering is not prolonged,” she said.
“There are many people who are traumatised by this experience. Their spouses, their children, their grandchildren are living with that trauma for the rest of their lives,” she said.
“If the person truly doesn’t feel anything, then why are we forcing families through something that scars them? And if they do feel something, then why are we prolonging it?”
Whether Australia is willing to extend end-of-life choice to people who can no longer choose for themselves remains an open and deeply contested question.
