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As a young trainee nurse in the 1960s, my mother-in-law saw something that stayed with her throughout her life and ultimately influenced the way she died.

It was an elderly patient in hospital, close to death. The woman could not speak but whenever she was moved she let out a sound that stuck in the young nurse’s mind: what she described as “pathetic mewling”.

Sufferers of dementia can live for a decade or more after losing control of the mind and body.Credit: iStock

That sound – the pain and lack of dignity it signified – horrified my mother-in-law. She was determined to avoid her former patient’s fate. As she herself grew older, she became a devotee of Dr Rodney Syme, Victoria’s chief advocate for a controlled death, and of the concept of Voluntary Assisted Dying, long before it was the law. She badgered us, her family, never to allow her to reach the state of her former patient.

So when her terminal lung cancer diagnosis came last year and her condition began to worsen, she sought out the lethal dose permitted under Victorian law and, like 604 people did last year, imbibed it. At 82, gratefully, she slipped into unconsciousness and never woke up.

Syme, one of the godfathers of Australia’s VAD regime died himself in 2021. His final years were spent writing an as-yet unpublished book and nursing his wife, Meg, through the horrors of dementia. Just four months after she finally succumbed, Syme had a catastrophic stroke and died himself.

One of his own final wishes, expressed in his manuscript, was that VAD be extended to the frail aged who believe they’ve had what he called a “completed life”, and to those dying of dementia.

In his manuscript he describes being taken to see a woman living in a nursing home with late-stage dementia. Syme wrote that “Mrs V” was immobile, half her previous body weight, her limbs curled in on themselves. Her flexor muscles had overcome the weaker extensors so powerfully that her fingers pushed hard into her palms and were in danger of lacerating the skin.

Her mouth was agape, her eyes wide open but blank. She was doubly incontinent and had a bedsore the size of a small plate, eroded down to the bone due to immobility and long hours lying in her own waste.

As her carers moved her about on a hoist and cleaned her, they inadvertently pulled on her contracted limbs. Mrs V’s face distorted, Syme wrote. She grimaced and reddened and short groans and squeals seeped out. “These are the only sounds she makes in the four hours of observation. Sounds of pain and distress. They are her only ways of communication.”

A fundamental objective of the VAD legislation is to allow a person to relieve their own suffering when it becomes unbearable and death is likely to occur within six months, except for neurodegenerative illnesses such as motor neurone disease where it’s 12 months. The law gives comfort that, when our own time comes, we can have some control over the way we die.

When doctors are schooled in what to look out for in a prospective VAD recipient, they are told that a key psychological trigger is “fear of loss of cognitive function/inability to make decisions – fear of dependency”.

But VAD is not available to sufferers of dementia, one of the most dire and fearful diagnoses of all. The prospect of descending through its seven stages into what Syme described as Mrs V’s “catastrophic vegetative state”, is terrifying. And no form of care-giving is more damaging to the carer’s health than caring for a late-stage dementia sufferer. They become isolated, physically and emotionally overwhelmed.

When Dying With Dignity Victoria did a recent survey of its members’ views on the current law, the responses were filled up with pleas for dementia to be included.

This is the monster in the room. Dementia accounts for almost 10 per cent of all deaths in Australia and is the second leading cause of death after coronary heart disease. If you’re a woman who makes it to 75, it’s the thing you’re most likely to die of.

It’s not quick. People with dementia can live for a decade or more and then die slowly of its side effects – starvation, infection, pneumonia – long after they’ve lost the mental capacity to request and take the VAD medication. You can sign an advance care plan to stipulate how you want to be treated as you decline, but you cannot request VAD in that plan.

Perfectly understandably, the law requires informed and ongoing consent. But that should not be the end of the debate. Victoria’s VAD law was passed in Victoria in 2017 and began operating in 2019, the first in Australia. It was a progressive policy, conservatively enacted.

A review into its operations begins this year. Nobody pretends it will be easy to assess how to gain informed consent from dementia sufferers, or how then to enact their wishes. But the review should canvass the issue – as other countries such as Canada are doing. In my view we must work to find a way to give relief to dementia sufferers from the fear and pain they ultimately will be unable to express.

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