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Kate Emery: Extending VAD laws to dementia an inevitability and a minefield

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Kate EmeryThe West Australian
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U.S. President Joe Biden speaks at the Ukraine Compact meeting during the 75th NATO Summit in the Walter E. Washington Convention Center in Washington, DC, on July 11, 2024. (Photo by Beata Zawrzel/NurPhoto via Getty Images)
Camera IconU.S. President Joe Biden speaks at the Ukraine Compact meeting during the 75th NATO Summit in the Walter E. Washington Convention Center in Washington, DC, on July 11, 2024. (Photo by Beata Zawrzel/NurPhoto via Getty Images) Credit: NurPhoto/NurPhoto via Getty Images

I don’t want US President Joe Biden to die. Obviously.

And, in light of the weekend’s assassination attempt on rival Donald Trump, I should stress that I definitely do not want to kill him.

But until a sniper on the roof of a Pennsylvanian manufacturing plant tried to kill Mr Trump — succeeding only in killing an innocent bystander before being killed himself — Mr Biden’s very public cognitive decline was the single biggest story of the past week.

As it happens, it also coincided with my last remaining grandparent being moved into a nursing home; an experience that has only reinforced my opinion that voluntary euthanasia laws must — and ultimately will — be expanded to include dementia. I just hope that it happens before I’m in my grandma’s slippers.

Mr Biden and my grandma don’t have a lot in common.

Even at her best, I’m not sure Grandma would have been the one to try to bring peace to the Middle East or convince Americans that universal healthcare is the mark of a civilised society rather than a socialist plot.

And Mr Biden, who strikes me as an 81-year-old with an age-appropriate level of cognitive decline, certainly doesn’t belong in a nursing home — just as he also doesn’t belong in the running to be the leader of the free world for another four years. He is, however, a reminder that age comes for us all.

Nobody who has spent much time in nursing homes with residents suffering from dementia can walk away from the experience feeling like this is the golden pasture where they want to live out their final days.

Earlier this year another of my relatives, one of those people who glues families together, passed away from dementia-related complications and her final months were not what she deserved.

But, as modern medicine gets better and better at stopping other things from killing us, the chance that we’ll one day wind up there, eating our boiled carrots and watching a TV program we may or may not have seen before (don’t ask us!), surrounded by people we mostly don’t recognise, gets higher and higher.

Dementia is already the second leading cause of death for Australians over the age of 65, with the number of sufferers expected to double in the next 30 years.

Voluntary assisted dying is now widely legal across Australia. But, while the specifics vary a little between States and Territories, they pretty much all agree that eligible patients must be suffering from a terminal condition that will kill them in under a year — at the most — and that they are cognitively capable of making the decision to end their life.

Dementia kills but it does so slowly. Long before dementia kills a person’s body it kills their ability to make decisions about their own life, their freedom to live life on their own terms and their family’s memories of the person they love. It’s also a source of great fear for many.

In the Northern Territory, the Government is seeking feedback on whether to extend VAD laws to include dementia. This could be the start of a move in the right direction.

Extending VAD laws to include dementia is both an inevitability and an absolute minefield; how can someone with dementia reasonably consent to anything? At what point in a person’s cognitive decline do they need to make a decision? What happens if someone who wanted to access VAD when they were still able to make that decision seems happy in their blissfully ignorant haze when they are not?

And what’s to stop greedy or indifferent relatives from swearing they’re relieving dear Aunt Maude of her suffering when what they’re really doing is speeding up their own inheritance?

These are big questions but they are also surmountable.

Canada’s “10 minutes to midnight” approach allows people with dementia to opt for VAD while they still have the capacity to understand what that means.

In the Netherlands, it is possible to make advance directives, essentially specifying that in the event they get dementia, they opt for VAD.

Neither of these approaches are perfect; there is still scope for abuse and perhaps unfair pressure placed on doctors and family members left behind.

But do you know what else isn’t perfect? Spending your last days in a nursing home, sedated by daytime TV or medication or both, having been deprived of the things that make your life worth living.

Nursing homes aren’t miserable for everyone’ some residents may flourish in a safe, protective and social environment where the biggest problem they have to solve is whether they want chicken or fish for lunch.

Similarly, not everyone would opt for the green dream as the alternative to a slow decline. But that’s why it’s called voluntary assisted dying and not murder.

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