This is an open letter to the Premier of Queensland, Annastacia Palaszczuk, the health minister, Steven Miles, and MP for Maiwar Michael Berkman (mylocal member). The letter was written last Monday; I am posting a slightly edited version here. The original letter was also sent to the state opposition leader Deb Frecklington and shadow health minister Ros Bates.
I’m writing to you in relation to the issue of assisted dying/voluntary euthanasia in Queensland.
On Sunday I visited my mother Sue in her aged care facility. Sue is 70, and is in the final stage of early-onset Alzheimer’s disease, which initially forced her to take stress leave (and eventually, her resignation) from her position at Queensland Health in 2002, 15 years ago. She was formally diagnosed with her illness in late 2011, nine years after developing discernable symptoms, though they were not recognised for what they were at the time.
Sue had considerable expertise in the field of dementia beyond her own lived experience. She spent over a decade in the senior levels of the department, writing and administering aged care policy, and many years before that working with elderly people in the community in the employ of Blue Care.
Last Sunday I sat with her for an hour. She is now bedridden and unable to move independently; her muscles are so rigid she is being administered morphine, as moving is painful for her. She was not cognisant of my presence in the room. She grinds her teeth involuntarily, her face is contorted, she has no control of her bodily functions (in the time I was with her she soiled herself twice in 20 minutes), and though she retains some power of speech, she is unable to communicate effectively.
I can tell you with absolute certainty that this indignity and pain is not what my mother wanted. This incredibly bright, capable, compassionate, outgoing woman, who remains much loved and did so much to improve health outcomes for elderly Queenslanders in particular, has seen her worst nightmare – as she often described it to us before her illness – visited upon her.
I have long since lost count of the number of times my mother has expressed her wish to die, at a time when she was fully aware of the horrors that awaited her, and which she is now enduring, as we all are with her. I can also tell you that she has previously asked both myself and my brother to help her to achieve her wish.
Allow me to express that as frankly as my mother intended: she was asking us to kill her. While that is not a request she would have made while in full command of her faculties, I ask you to imagine the terrible distress she was in to have made it, and the anguish that it caused for us.
Of course, we have no legislation providing for assisted dying/voluntary euthanasia in Queensland, as has recently been passed in Victoria.
My brother and I were lucky to have secured power of attorney to make financial and legal decisions on behalf of Sue, and also an advance health directive. However, even if we lived in Victoria, Sue’s legal lack of capacity to make decisions after her diagnosis, despite the fact she retained insight into her condition until very late in the piece, would have meant she did not qualify for assistance under that legislation.
This was contrary to the advice of Alzheimer’s Australia (Victoria), which made the following key recommendations:
- That limiting eligibility to a prognosis of days or weeks remaining prohibits people with progressively deteriorating cognitive impairment from accessing voluntary assisted dying.
- That a decline in quality of life or function is a better indicator of eligibility for people with a degenerative illness.
- That psychological suffering be recognised in the legislation in addition to physical suffering.
- That the term ‘mental illness’ should be clearly defined as distinct from cognitive impairment.
- That people with degenerative disorders should have the right to make enduring requests for voluntary assisted dying in an advance care plan.
- That family members are included in assisted dying decision-making, with the person’s consent and with proper protections for the person.
- That the person with dementia’s right to be fully informed is upheld and that medical practitioners are appropriately trained in dementia care.
I naturally appreciate this is a difficult and sensitive issue. However, it’s a conversation that Australians need to have – and it isn’t going to go away. Dementia is now the leading cause of death for women in Australia and the second leading cause of death overall with more than 425,000 sufferers nationwide.
The estimated cost of dementia-related illness in 2018 is $15 billion. The toll it exacts on families and communities – including the knock-on health effects – is perhaps less measurable, but I can tell you the impact on myself and our family has been profound. I do not say this is to classify anyone with a terminal illness as a burden, but to consider the escalating financial and mostly hidden emotional cost of prolonging unnecessary suffering, often artificially, and against the will of individuals and their families.
I am therefore calling on your government to consider opening formal discussions regarding the potential development of assisted dying legislation in Queensland. The establishment of a parliamentary committee of inquiry, taking submissions from the community, would be an obvious first step. It could then make recommendations which could lead to the possible introduction of legislation in the next term of parliament.
I also request that due consideration be given to provision being made for the hundreds of thousands of sufferers of this terrible and terminal illness, and to their families, who suffer with them, in the event of such legislation being introduced.