Assisted dying laws: Call for dementia sufferers to be included

Jayne Francis noticed something wasn't quite right with her husband shortly after they moved into their new home.

Lindsay had always been a good handyman, yet suddenly he was struggling with basic tasks, like adjusting the heater, or turning on the sprinklers.

There were also times she'd arranged appointments after work, but he wouldn't show up. And gradually, his personality changed, too, from the highly engaged lawyer he'd always been, to a man confused, forgetful, frustrated.

It took a fair bit of time for doctors to work out that Lindsay had dementia, the cruel and incurable disease that affects about 100,000 Victorians. But it took little time at all for the heartbreak that followed, as Jayne and the children slowly watched his quality of life diminish.

Jayne Francis, whose husband died from dementia a few years ago. Photo: Eddie Jim

Jayne Francis, whose husband died from dementia a few years ago. Photo: Eddie Jim

"In the end, he didn't know who he was, he couldn't feed himself, he couldn't talk," Jayne says of Lindsay's final stages before he died, aged 57.

"You sort of grieve twice, really, because you're grieving for this person you see changing before your eyes and losing all their everyday skills. He spent the last three years in care, and I think if he'd been able to make a decision about the end of his life, he probably would not have wanted himself in that state. It was heartbreaking."

As the Andrews government prepares to introduce laws giving terminally ill people the right to a physician-assisted death in Victoria, attention has turned to the vexed question of who should qualify - and whether people with dementia and Alzheimer's disease ought to be included.

Under the model proposed, only adults with decision-making capacity, who suffer from a "serious and incurable" condition, and are at the end stages of their life - possibly the final 12 months - are likely to get access to an assisted death.

But this leaves people with dementia ineligible. Think of it as a catch-22: on one hand, patients would have the mental capacity to make a request as the disease is developing, but are unlikely to die within the time-frame being considered by the government. On the other hand, once they are close to death, they won't have the mental capacity to request that their doctor provide them with a lethal pill to end their suffering.

Health Minister Jill Hennessy accepts that not everyone will be happy by the scope of the legislation, but adds that strict safeguards are vital.

"Many will be very disappointed that there's a model that doesn't include dementia or Alzheimer's but critical to the security and protections in this model is that a person does have competence and capability," she says.

Others, however, have urged the government to reconsider. On average, a person with dementia survives for three to ten years from the point of diagnosis, but advocates.suggest that they should have the same end-of-life choices as other terminally ill patients, such as people with cancer.

Ann Reilly, the acting general manager of client services at Alzheimer's Australia Vic suggests this could be done through advance care plans, which would give dementia patients the ability set out their end-of-life wishes in a legally binding document during the early stages of the disease.

"We want people with dementia to have the same provisions that others have access to," Reilly says. "We recognise that it's complicated, but we think that given the amount of people we've got living with dementia in Victoria, it's a complexity that needs to be dealt with."

It's the kind of complexity that is now being examined in other jurisdictions as well. In the Canadian province of Quebec, the government is considering whether to let people make advance requests for assisted suicide, which could give people with dementia access that they have not had since the law came into effect in December 2015.

Back in Melbourne, Jayne Francis would likely back the idea. It's been eight years since Lindsay died (and Jayne has now remarried) but she hopes the government will reconsider making people with dementia "part of the conversation" as the laws are drafted.

"Obviously you want the guidelines around assisted dying to be really tight, but special consideration should probably be given to people with dementia as they may have to make that choice earlier than someone with cancer or a physical illness," she says.

"In the early stages, that's the time you're making decisions about all kind of things: Centrelink benefits, whether you keep working, financial decisions, and power of attorney. That would be the time that people could also turn their mind to end-of-life decisions."

- The Age