The final choice

Dementia and the right to die

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IT IS NO exaggeration to say that when the Australian Parliament voted to void the Northern Territory’s Rights of the Terminally Ill Act 1995 (via the Euthanasia Laws Act 1997), it set back the cause of voluntary assisted dying (VAD) in Australia by twenty years. Indeed, this is literal: it was not until 2017 that Victoria became the first state to pass legislation allowing assisted suicide for the terminally ill.

Since then, the tide has rushed in. As if to prove Victor Hugo’s adage that nothing is more powerful than an idea whose time has come, four states have followed Victoria in legalising VAD: first Western Australia in November 2018, then Tasmania, South Australia and now Queensland, all in 2021. New South Wales is the only holdout. (The territories remain unable to pass similar laws until the Euthanasia Laws Act is overturned.)

The passage of VAD laws in Queensland on the afternoon of 16 September was emphatic. With both major parties allowed a conscience vote, the legislation passed 61–30. From the ruling Labor Party, who hold a five-seat majority, only three voted against. Ten members of the Liberal National Party – for which the issue is far more vexed – supported the change. With overwhelming public support for VAD, it is unlikely the laws will ever be overturned.

Will they ever be expanded? Victorian Premier Daniel Andrews described his state’s VAD legislation – before it was passed – as ‘the most conservative model of its kind in the world’. Other states have mostly followed that model. Fundamental to the laws in all states is that applicants retain decision-making capacity and face death within twelve months. These provisions unintentionally but effectively disqualify dementia sufferers.

Curiously, Queensland LNP Deputy Leader David Janetzki moved an amendment – one of fifty-five he proposed – that would have opened the laws to include those living with such conditions. Ultimately, however, he voted against the legislation. This suggests Janetzki was testing the ‘slippery slope’ arguments of fellow opponents, searching for a split in affirmative ranks that might have spooked a majority into voting no.

Perhaps he was also testing health minister and former attorney-general Yvette D’Ath, whose mother died from Alzheimer’s disease. D’Ath said she supported the intent of Janetzki’s amendment, but she cited the difficulty of assessing a patient’s decision-making capacity while living with such an illness, as well as the danger of coercion. ‘It’s not as simple as adding a line [to the bill],’ she said. The bill passed unamended.

IF ONLY IT were so simple. Like D’Ath, this issue is personal for me: my mother also suffers from Alzheimer’s disease, with which she has lived for twenty years. It was from this vantage point that I approached writing the essay ‘Dying wish’ for Griffith Review 68: Getting On last year. The piece explored the fraught moral, legal, medical, spiritual and political dimensions of end-of-life choices and dementia. I went in with many questions and came away with no easy answers.

Yet no one who bears witness to it disputes the unique, extended cruelty dementia inflicts on sufferers and their loved ones. ‘I know what she’d choose – she’d choose VAD,’ D’Ath said of her mother. So too would mine, who expressed her wish to end her suffering on many occasions. But that was a long time ago now. Since then, she has slipped into a terrible purgatory, bedridden and non-verbal for nearly three years. She has just turned seventy-four.

Her inability to communicate is typical of the final stage of dementia, which in her case has extended far beyond the twelve-month life expectancy required for VAD. Her ability to give legally informed consent to anything – let alone something as contentious as assisted suicide – ended with her diagnosis in November 2011. She had surrendered power of attorney to my brother and I a year before that.

It is possible, however, that provision might be made for dementia sufferers in future via advance health directives, to be signed off while a patient retains capacity. Canada, which passed amendments expanding its Medical Assistance in Dying (MAID) legislation on 17 March 2021, provides a model. The amendments offer a waiver for patients giving final consent immediately before MAID is administered, only if:

your natural death is reasonably foreseeable
while you had decision-making capacity:
– you were assessed and approved to receive MAID
– your practitioner advised that you are at risk of losing capacity to provide final consent
– you made a written arrangement with your practitioner in which you consent in advance to receive MAID on your chosen date if you no longer have capacity to consent on that date.

There have also been developments in the Netherlands, the first country in the world to legalise VAD. In April 2020, the Dutch Supreme Court ruled doctors could not be prosecuted for carrying out euthanasia requests on patients who had previously given written consent, after a doctor was prosecuted over the death of a patient with Alzheimer’s disease. It had been alleged the doctor had not properly consulted the seventy-four-year-old for final consent.

The Netherlands and Canada boast the most progressive VAD laws in the world. Time will tell how they might be tested. Time will also be the judge of whether Australian laws go far enough. Dementia Australia forecasts that 1.1 million people will be living with dementia by 2058. ‘Whenever I have spoken about this publicly, it is the number-one issue raised,’ Go Gentle Australia founder and television presenter Andrew Denton told me last year.

It may not be another twenty years before this issue is revisited in Queensland. Should he still be in parliament – he is now forty-three – David Janetzki might consider resubmitting his amendments to the laws. He might find more support than he originally bargained for.

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Dying wish

ReportageI believe in my mother’s inherent dignity and personhood, although we became strangers to one another years ago. I try to remind myself that, while her illness may have overtaken her, it does not define her, no matter how long it keeps her imprisoned.

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