The statistics are overwhelming – dementia is now the leading cause of death for Australians, and there are almost half-a-million living with this condition. About two million people are involved in the care of someone living with the syndrome.
It is time we had a difficult discussion.
Every state and territory now has voluntary assisted dying laws and while there are some subtle differences, there is one thing that they all have in common – dementia is excluded. The reasoning behind this is partly practical, and somewhat philosophical, leading to dementia belonging in the too-hard basket. Practically, there is only sometimes a window where people have the condition diagnosed and still have the reasoning to meet the hurdle of informed consent. Also, dementia does not neatly fall within the predicted mortality range of six to twelve months. Indeed, as we all know, some linger for many, many years with an active body and an unable-to-consent mind. Philosophically, the whole issue of mental incapacity and mental illness in voluntary assisted dying has troubled legislators and moralists.
I have been spending a lot of time in aged-care facilities, hospitals overridden by those waiting for aged care, and wards operated for those with dementia or other memory conditions. And it is worth acknowledging that for some, this journey is milestoned by a gentle and accepting retreat into oblivion. Their families and friends have an opportunity to care, learn and reflect. But for many, dementia is beset by delusions, fear, humiliation, aggression, frustration and angst. It is agony for the patient and particularly gruelling for their loved ones who grieve for the person who once was, and long for an end to the suffering. There is such a spectrum.
But what if…
I, David Heilpern, date of birth 1 April 1979, of Wategos Beach, being certified below as being of sound mind and able to give consent, direct all medical practitioners, nurses or other carers as below.
If for any reason (including advanced and progressive dementia, stroke, injury or aneurism) I am suffering a lack of memory or cognition or an inability to communicate, to the extent that my quality of life is greatly diminished, evidenced by ongoing suffering, and there is no realistic chance of recovery, I direct and give consent for end of life medication to be administered to me.
For me, ‘ongoing suffering’ may include an inability to make decisions about my own care, incontinence, failure to recognise loved ones, paranoia, delusions, severe loss of memory, confusion, depression, being bedridden or any combination of the above such that two medical practitioners (and each of the loved ones listed below) certify that any remaining and dwindling quality of life is extensively outweighed by the negative aspects of the suffering.
I am aware that I may not be able to consider consent at the time of this directive being activated by administration of end-of-life medication, however this Advance Care Directive is in lieu of that consent.
I make this directive voluntarily, in the absence of any pressure or duress from others, and in the full knowledge that it will remove from my future control the timing of the end of my life thereby reducing the suffering of myself, my family and friends. I am over 18 years, and I am an Australian citizen.
This is the model in the Netherlands, and partially in Canada, and there are variations in other parts of the world. Of course, no-one has to do this, and people of conviction should be able to live out their days and their daze as they wish. But for me, it would be an easy decision.
First, because I would not want to be a burden on my loved ones. I am so grateful to them for the compassion and support they have offered me in my healthy life, let alone needing them to be unduly taxed and guilt-ridden in any potential decrepit ageing.
Second, because of the cost. Here I don’t just mean the depletion of my petty inheritance that could be put to far better use by family and charity than by drip feeding it into the state for care. The expense to the overall community of keeping people alive where they have deteriorated beyond limits is wasteful and indulgent. Spend the money on education and conservation rather than sustaining me. My spot could surely be utilised by someone else thus taking pressure off family, hospitals, or the state.
Third, because this is yet another frontier in the fight for non-physical versus physical pain. If I was suffering from cancer this option would be available to me now. Just because it is the brain not the liver that is diminishing, ought not exclude this as a valid choice.
Fourth, there is the issue of legacy. Call me vain or big-headed, but I would rather my community remember me as sprightly and sparkling rather than the shambling shadows I see in aged care.
Finally, this is my life, and should be my death. I want a say now over how, where and when, I shuffle off this mortal coil.
And one last observation and prayer – next Australia Day, let’s reserve all honours for aged care workers. I pray I will have one tenth of their patience for my loved ones (and they for me) should the need arise.
David Heilpern is a former NSW magistrate and is now Dean of Law at Southern Cross University.
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