Time to change the law

Jun 10, 2024
Homecare mental health

One of my closest friends was recently diagnosed with early stages of dementia. She is 80 years old and believed that the problems she experienced with her memory, were due to normal age-related forgetfulness. She has a science background, and after receiving her diagnosis she started to research the topic in great detail. She read several academic articles on dementia, including the book ‘A Completed Life’ by Dr Rodney Syme which was published posthumously in 2023. The book presents his views on the predicament of people with dementia and his powerful suggestion for further legislative change. The book’s title reflects his life, in which and where all that was possible had been achieved and so was, in a sense, complete.

Dr Syme was a former Melbourne Urologist who had a longstanding interest in the plight of older people with terminal illnesses who were experiencing suffering that could not be relieved. In 1990 he joined the organisation Dying with Dignity Victoria and pursued the quest for VAD, the Voluntary Assisted Dying legislation. This initiative finally succeeded in November 2017 and came into effect in 2019. Voluntary euthanasia and assisted dying are now legal in most Australian states, but only for patients who suffer from a terminal illness, not dementia or Alzheimer’s disease. Dr Syme had personal experience with dementia, because he spent several years caring for his wife Meg, who died in 2021 of advanced dementia. He passed away 3 months later of a stroke.

In his book, Dr Syme wrote: “Dementia is the worst disease known to man. It is the worst journey in the world, a progressive illness without a cure. It lasts from five to fifteen years, gradually stripping away all the assets that make us human and is often accompanied by unrecognised significant physical suffering. In the early, still cognitive stage, psychological and existential suffering can occur from the contemplation of the future. In the middle, diminished and confused stage, awareness of losses is painful, and psychosis may develop. In the terminal stage, the patient is vegetative, and unavoidably will end up in an aged-care facility. Most of these institutions are barely adequate and comes at great financial costs to families and the community at large.

My friend was devastated to realise that this scenario could be her future.

I’m originally from the Netherlands where the “end-of-life-law” allows for euthanasia, based on “intolerable suffering” rather than “terminal illness”. This means that it has been accepted that people diagnosed with dementia can be given assistance in dying while they remain competent.

For some people, the prospect of ever suffering from dementia may be a sufficient reason to make an advance directive (living will). This can either be drawn up independently or discussed first with a GP. A physician can perform euthanasia on a patient with dementia only if such a directive exists, if statutory care is taken and if, in his or her opinion, the patient is experiencing unbearable suffering with no prospect of improvement.

Dr Syme noted in his book that Australia is many years behind the Netherlands, and he believed we have to seriously address this problem in the near future. This Dutch law was established in 2002.

I believe it’s time for Australians to demand a law like this because no-one should be forced to suffer when their lives have lost meaning, and no family should have to witness their loved ones not recognising them anymore or feel like ‘prisoners in an aged care facility’ against their will, often without compassion, that is not caring!

We must recognise that we need a law for all competent consenting adults, including the frail aged, who are not necessary terminally ill. They should be allowed to request assisted dying, and be able to die peacefully and with dignity, at a time and place of their choosing, surrounded by their loved ones.

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