After watching her mum die in agony, Angie wants to change the law for other people diagnosed with this disease

Slow, painful and inhumane. That’s how Angie List describes her mother’s recent death.

“It was a combination of sadness and relief that she passed,” List says.

“But she should not have suffered like she did.”

Warning: This story contains a distressing image of Helen Lister in the weeks before her death.

At the time of her death, List’s 79-year-old mother – Helen Lister – weighed about 24 kilograms. For more than 10 days, her mouth was set agape, the inside cracked and dry.

She had lost the ability to swallow and was starving gradually – a symptom of late-stage Alzheimer’s disease, for which she had been diagnosed in 2023.

List helped her parents move into an Ascot apartment following the diagnosis.

But attempts to make her mother comfortable there in her final weeks – hydromorphone for pain and sedative medication to ease agitation –were hampered by the pressure sores that formed on her emaciated body.

“The palliative care staff were wonderful, and they were caring,” List says.

“But I knew [the pain relief] wasn’t 100 per cent effective because when we would gently try to reposition her … she would grimace.”

List’s experience of watching her mother die slowly from dysphagia and cachexia, the medical terms for difficulty swallowing and wasting syndrome, inspired a campaign calling for the introduction of “Hem’s Law”. (“Hem” was the moniker her mum used in place of “Grandma”.)

Such a standalone legal provision – which would be separate to voluntary assisted dying legislation – would permit a family member or legal representative to “choose a peaceful and humane death on behalf of a person with dementia” under a set of specific criteria.

“This is not a quality-of-life judgment, it’s a quality-of-death judgment,” List says.

“It’s not a decision about whether to end a life or not. It’s a decision about whether the death is going to be protracted and distressing for all involved, or whether the death could be merciful and faster.”

Helen Lister was raised in outback NSW, an upbringing her daughter says shaped a quiet toughness she carried throughout her life.

“She had an extraordinary warmth and an instinct for knowing what people needed,” List says.

“She was endlessly capable, creative and generous.”

Her vocations were many and varied, from running a hairdressing salon and catering business; to helping her jockey husband, Arthur Lister, manage a horse stud, later authoring a book about his racing career; to writing a column for the local newspaper, teaching at TAFE and running charity fundraisers.

“She adored entertaining … she had business cards made up called ‘Lister’s Fun House’ with hers and dad’s names listed as directors,” List says.

A “change in her capacity to organise” was one of the first signs of Hem’s cognitive decline. She spoke to her doctor, who referred her for further testing.

Eight months later, in September 2023, Lister was diagnosed with Alzheimer’s disease.

Alzheimer’s is the most common form of dementia, accounting for about 70 per cent of diagnoses, according to Alzheimer’s Research Australia.

List says the lack of education around the progression of the disease, particularly in advanced stages, is a driving force behind her campaign.

“Before this happened, I was naive around how dementia and Alzheimer’s kills,” she says.

“I was always confused as to how somebody actually dies … I didn’t fully comprehend that it’s the brain and body connection that is severed, [creating] neurological challenges.”

People in the late stages of dementia gradually lose the ability to walk, communicate, eat, drink and swallow. As the body becomes more frail, it struggles to fight infections and illnesses, with pneumonia a common cause of death.

Research shows dysphagia – the inability to swallow – is a “highly relevant comorbidity of Alzheimer’s”, estimated to affect 84 per cent to 93 per cent of patients in the moderate to severe category.

“This is not a risk. In the final stage of dementia, it is the destination,” List says.

“The brain systematically destroys the cortical regions that co-ordinate swallowing. Once gone, they do not regenerate. This is the mechanism by which dementia kills.”

List says the likelihood of cachexia is similarly obscured from conversations about the condition.

“Dementia is now the leading cause of death in Australia … people should be able to say that if it reaches a certain point [they can enact end-of-life wishes].

“But if we’re not telling people what the end is like, how are they supposed to specify what choice they want?”

Cognitive neurologist Professor Peter Nestor, a conjoint professor of neuroscience at the Queensland Brain Institute and Mater Hospital, worries that too much information during early diagnosis could distress patients.

“If you were [relaying] every single [death] scenario that could happen, you’d just end up overwhelming people,” Nestor says.

“And generally speaking, in my clinical experience, I find that people [diagnosed with dementia] don’t want to know about the end at the start.”

Dementia progresses differently among patients, he says. As with a timeline for deterioration, it’s hard to tell people “exactly what their last few days are going to look like”.

The need to improve death literacy around dementia has been raised in other circles, with some advocates for voluntary assisted dying calling for legislation to include the neurodegenerative condition.

Under current legislation, people living with dementia across all Australian jurisdictions are excluded from accessing VAD, for two main reasons: the condition affects decision-making capacity, and the time frame that people have to live is varied. Some people live for decades after diagnosis, others, like Lister, a few years.

Ben White, a professor in end-of-life law and regulation at QUT, says expanding VAD to include dementia is important but presents complex challenges, and any change to the law should be based on Australian evidence.

“That should include the perspectives of people living with dementia,” he says.

“Certainly if Queensland, or indeed anywhere, was to go down the path of an advanced request model, by definition, you would need to be informed very clearly and carefully about possible trajectories, to make informed [end-of-life] decisions.”

List is adamant that Hem’s Law should exist separately to VAD legislation, and says a version of what it proposes already occurs in palliative settings.

“Decisions about sedation levels, about the pace of comfort care, about what constitutes ‘adequate’ symptom management – these are made every day, behind closed doors, by individual clinicians acting on conscience and compassion, without legal protection for themselves or the family,” she says.

“Hem’s Law does not create something new. It replaces a clinician lottery with a legal right.”

About an hour into the conversation about her mum, a memory from List’s early 20s floats to the surface.

The time had come to put the family’s 19-year-old dog, then pained by arthritis and barely able to walk, to sleep.

“Mum said, ‘it’s time’, and I said, ‘How do you know?’,” List recalls.

“She replied: “I can tell by her eyes, by the way she looked at me.’

“I knew that mum would want that as well. The fact that I couldn’t give it to her was heartbreaking.

“If [Hem’s Law] is her legacy, what she leaves to the world, I know that would make her happy.”

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