By Mark Brandi
A friend recently lost his father to dementia, but not before witnessing a small miracle.
In his final days, despite having been non-verbal for more than two years, his father suddenly became fluent and conversational. He recognised relatives by name and regaled them with old tales, offering his grandchildren a brief, magical glimpse of the man he once was.
The only problem? He thought it was 1953.
Dementia is an insidious and peculiar disease. And it poses difficult questions about the nature of identity. What is it that makes us who we are? And at what point do we lose our sense of self?
As Victoria moves toward a scheme of assisted dying for the terminally ill, one of the recommended preconditions is a “sound mind”. As such, a parliamentary committee (invidiously tasked with an “inquiry into end of life choices”) has recommended dementia sufferers be excluded from the scheme.
On the face of it, this appears logical, as there are obvious risks in allowing others to decide what is tolerable for a patient. But is the potential for abuse a good enough reason to deny access to all dementia sufferers?
An alternative – which the committee does not support – is the provision of an advance directive. While still able to make decisions, we could outline future circumstances (such as the late stages of dementia) where we might consider our lives unbearable. Such measures have been in place in the Netherlands since 2002.
If an advance directive were allowed here, it could include tailored safeguards – such as the opinions of trusted family and friends – about the quality of our lives (in addition to the standard battery of medical tests).
But even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate. It remains an area of deep moral, ethical and practical complexity.
It is also one in which I have a personal stake – my father has advanced dementia.
Over the past three years, he has lost capacity for the things he once enjoyed – politics, gardening, and even freedom to leave the home unaided.
If an advance directive had been available before his illness, it is possible (if not likely) he would have opted out.
Yet my father might now be described as – what some cheerfully term – “happily demented”. He is usually in good spirits, enjoys the pleasures of food and family, and is physically active. By some measures, he might be more content than before his dementia.
Such circumstances are not isolated. In evidence to the parliamentary inquiry, one carer stated: “I know the man my husband used to be, and I know he would not want to be the man that he is today; however, he is happy as the man he is today … whose version do we hold with, or think is more valid?”
This question cannot be answered with certainty.
For example, in the later stages of dementia, we may not appreciate a film in the same way we do now. But we may find pleasure in the sight and sound of certain actors, or even the appearance of particular colours on the screen.
Still, we cannot know how the disease might manifest in individual cases. And there are risks in allowing dementia sufferers to be part of the scheme. But these risks must be weighed carefully against our right to make important choices about our lives.
Should the parliamentary committee’s recommendations be followed, my father will not face such a crucial decision. Whether there may be a small miracle near the end of his life, time will tell.
We, his family, can only bear witness.
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