Dementia sufferers – including those with Alzheimer's disease – will not benefit from legal assisted dying in Victoria, according to a leading end-of-life care expert.
Associate professor Bill Silvester, the immediate past president of the International Society of Advance Care Planning and End of Life Care, said it was a "Catch-22" situation for those newly diagnosed with any form of dementia as well as those with advanced cases of the brain disease.
A Victorian parliamentary committee has recommended reforms to give some terminally ill patients the right to choose death. The committee proposed the patients should be adults with decision-making capacity who suffer from a serious and terminal condition at the end of their lives. Dementia, and Alzheimer's, are fatal brain diseases that also lower immunity to other diseases.
"Clearly for people who are developing dementia this new suggested assisted-dying framework is not going to help them because they are caught in the middle," Dr Silvester said. "While they still have mental capacity to make the request when the disease is developing, they are not going to die in the next few months. But once they are close to death they no longer have the mental capacity. It leaves those people in limbo."
Dr Silvester set up the Respecting Patient Choices program at Melbourne's Austin Hospital. He now works in the intensive care unit at Ballarat Hospital.
Dementia is the second-most common cause of death in Australia after heart disease. Research by Alzheimer's Australia (Victoria) shows 97,000 Victorians are living with dementia in 2016, a figure predicted to rise to 390,000 by 2050 without significant medical breakthrough.
Late-stage dementia means a patient can suffer infections, pneumonia, loss of mobility and bodily functions, loss of communication and memory and weight loss.
The state government has six months to respond to its committee's proposals before deciding whether to pass them into law, which would make it legal for a person with the right "classification" to ask a doctor to help them die.
The committee's proposals as they stand do not allow a proxy, spouse or guardian – or family member – to make a request on behalf of a patient. The proposed laws would not allow a request for euthanasia to be made ahead of a person losing mental capacity.
Alzheimer's Australia (Victoria) made a submission to the committee advocating the virtues of choice for patients and the importance of end-of-life care. Chief executive officer Maree McCabe said the nexus between dementia and the right to die was "difficult for the medical profession and very difficult for the person living with dementia and their families".
She said the notion of capacity was problematic because a dementia sufferer's lucidity could shift quickly and while they might understand some ideas they could misunderstand others. She said on average it could take three years to even be diagnosed with dementia, possibly seven.
"During that time capacity can decrease. At the very early stages they would likely be able to make all the decisions they need to make. But as it progresses and parts of the brain die off their ability to make decisions and comprehend those decisions diminishes."
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