Above: John Watkins, CEO of Alzheimer's Australia NSW.
By Stephen Easton
Australians are still afraid to confront their own mortality, making life difficult for their families and aged care providers when it comes to end-of-life care.
Less than one in five Australians have recorded their wishes for their end-of-life care and only 55 per cent of people in NSW are estimated to have a will, according to a report produced by Alzheimer’s Australia NSW.
The discussion paper, which was presented to a group of state MPs at NSW Parliament House in late March, also states that 49 per cent of Australians have not taken any action to prepare for the possibility they may lose the capacity to make decisions.
The main purpose of the paper was to delve into why so few people with dementia make plans for how it will all end, while they still have the capacity.
Based on research conducted with consumer groups, Alzheimer’s Australia NSW found that people were not aware the value of end-of life plans, were unwilling to find out more about them, and/or did not know where to access information about the subject.
The advocacy body also reports that consumers had difficulty understanding the terms used in documentation about end-of-life planning, and did not receive enough support from GPs and other health professionals.
Alzheimer’s Australia NSW chief executive, John Watkins, said the findings fitted with what the organisation heard from its clients and members on a day-to-day basis.
“Planning ahead while you still have the ability to do so can mean significantly less stress on your loved ones at an emotionally tough time,” he said.
The discussion paper also makes ten recommendations, including that the Department of Health and Ageing make it mandatory for all people entering a residential aged care facility, or receiving an Extended Aged Care in the Home (EACH) or EACH Dementia community care package, to have an advance care directive in place, and to have appointed an Enduring Power of Attorney or Enduring Guardian.
Mr Watkins said that while this was “a pretty strong recommendation” and one that could be difficult to enforce, “if it encourages people to put in place these advance care planning directives, that would be very good”.
He added that managers and staff in aged care services were often put in difficult positions that could be resolved more easily if end-of-life planning was more popular.
“I think the biggest benefit [to aged care providers] is clarity and understanding in the minds of the [aged care clients], and their families, and I think that can only help the [aged care staff].
“If there’s a clear understanding, for example, about expectations for end-of-life care, that’s a good thing for the managers and the staff in [aged care]. It would get rid of some confusion, which must cause real difficulties.
“I think operators, including managers and staff, are put into a really invidious position because of misunderstandings and conflict. … A disagreement between the relatives about the type of care that should be provided puts the staff in the middle of a family dispute – and that’s tough going.”
Other recommendations made in the discussion paper include a federal government awareness campaign, making advance care directives a feature of personally controlled e-health records, and the creation of a new Medicare item to allow GPs to bill patients for producing advance care directives.
Alzheimer’s Australia NSW also wants advance care directives to be discussed routinely during health checks for people over 75 years, and the NSW Government to “assist community service providers to include more directed information about advance care planning in their programs for people with dementia who still have capacity to participate in decision making” .