Voluntary assisted dying is now legal in all six states in Australia for eligible patients.
While conditions vary slightly between jurisdictions, eligible patients must be acting voluntarily, have decision-making capacity and have a terminal medical illness likely to cause death within six months – or 12 months in the case of neurodegenerative conditions.
While I support the importance of acting voluntarily, I take issue with the remaining two conditions. As a baby boomer with experience of late-onset dementia on both sides of my family, I have a personal objection to the arbitrary length of time selected. Dementia is a terminal condition, but the average life expectancy of someone with dementia is between five and 10 years, depending on the form it takes. The option of checking out before one’s decision-making capacity is impaired is therefore denied to people living with dementia.
Prof David Ames and Dr John Obeid have made the case against giving Australian dementia patients the right to include voluntary assisted dying (VAD) in an advance care directive. They predicted that access to assisted dying by dementia patients would magnify the stigma already associated with the disease. Moreover, that already stretched caregivers, both clinical and familial – the latter further motivated by “inheritance impatience” – would choose death over care.
The doctors’ combined specialised knowledge entitles them to have a view on the end-of-life outcomes for their patients. That view is based on the likelihood that more than one-third of these patients will die of other causes before the six years the disease takes on average to run its course: further, that those patients unfortunate enough to survive until the ravages of advanced dementia take hold “do not ‘suffer’, as they have limited awareness of their incapacity and functional decline: most seem content”.
This group of “content” late-stage dementia patients, we can assume, does not include the “small percentage” of dementia patients who experience behavioural changes including aggression and psychosis. For them, say Ames and Obeid, there is a national dementia behaviour management advisory service that can provide them with assessment and treatment.
It is hard to imagine that any treatment of late-stage dementia other than drugs would be effective, and then for whom?
Where are the wishes of the patient in all this? Surely it is they – not their caregivers – who should have the right to tick the VAD box while they are still of sound mind as part of their advance care directive.
If the advance care directive is to include a VAD clause, the wording is crucial. Ames’ and Obeid’s contention that “suffering may never occur” is of little comfort to me. My definition of suffering is not related to physical pain: I would wish to be dispatched well before that point was reached. As the child of end-of-life dementia patients, I don’t wish to suffer the ignominy of reverting to a childlike state; of outliving the ability to love and support those closest to me; of losing my essence.
I want to be able to take the decision out of the hands of my loved ones – not because I fear I may be the one in five who will suffer elder abuse at the hands of grasping offspring – but because I don’t want them to bear the responsibility of making the decision for me if I am no longer of sound mind.
As carer, I helped my mother to write her advance care directive shortly after her dementia diagnosis. “While I am pain-free, lucid and able to converse intelligently, I would like to live,” she wrote. Under the current wording of the VAD legislation in Australia, my mother’s wishes could not be met. I would like to see this change.
Assisted dying advocate and author Wendy Mitchell, who died last month in the UK after spending years documenting her dementia, said: “To better get on with the business of living … we need to talk about death.”
Under current UK laws, assisted suicide is illegal under the terms of the Suicide Act (1961) and is punishable by up to 14 years’ imprisonment.
Like Mitchell, my concerns lie not with who will have to care for me, or for how long. It’s not even for the quality of that care. What matters most to me – assuming I am afflicted in my turn – is having the power to decide at what stage of the disease I take my leave.
“I’m not asking for everyone to agree with me, I simply want to have a choice,” Mitchell said in a 2023 interview. In a posthumous blogpost, she stated her desire to go to Dignitas in Switzerland, a non-profit clinic that provides “physician-assisted suicide”.
She did not get to Switzerland but she did get her wish. “In the end … the only choice open to me was to stop eating and drinking,” she wrote. “Dementia didn’t play the winning card – I did.”
We should all have the right to choose, as far as is possible, our own use-by date.
Elizabeth Quinn is a writer and arts reviewer living in Naarm / Melbourne
