By Yasmin Noone
The Senate Community Affairs Committee has heard evidence of registered nurses (RN) ignoring the advance care directives of dying individuals, poor end-of-life pain management and other negative experiences across the whole continuum of care, during its inquiry into palliative care.
A series of Senate public hearings held throughout the country as part of the inquiry, which officially wind up in Canberra on Tuesday 10 July, have brought the palliative care sector’s failures, successes and needs to the attention the Australian Parliament’s upper house.
Chairman of Alzheimer’s Australia’s Consumer Dementia Research Network, Dr Ron Sinclair, appeared as a witness at the inquiry’s first hearing in the nation’s capital in late-April.
As per the recently published hansard record of the hearing, Dr Sinclair told the committee of his wife’s dementia care experience and recalled how she was treated as she died in 2006.
“Despite there being an advanced directive in place at the time which specified no intervention other than for pain management, staff, including RNs in the facility, ignored the directive and continually tried to treat her, either by calling locums when she developed sickness or whatever, and towards the end of her life they tried to force-feed her and to force her to take fluids,” said Dr Sinclair.
“On the other hand, in the last few weeks of her life, we had to fight to get pain management managed well because the staff there did not use any pain management scales.
“I provided the staff with published literature on end-of-life issues, including pain management issues about the provision of artificial nutrition and hydration, use of antibiotics and so on, and they told me that they had never seen or been told about this sort of information.
“Some of them accepted it with thanks; others would not even read it. The reasons for trying to keep my wife alive centered primarily on what they called ‘their duty of care’, although there were religious and philosophical views as well.”
However, not all witness accounts at the first hearing were negative. Fellow Alzheimer’s Australia advocate, Lyntara Quirke, presented the committee with a good news story, telling the senators how her father, Jim, was well cared for at home until the day he died at age 82.
“He passed away with his family, his favourite cat on the bed and his favourite music playing,” Ms Quirke, the former RN, said.
“…He was very much in control right up until the very last day, refusing food and fluids by demonstrating to us very forcibly that he did not want to be fed.
“He was mobile until a few hours before his death, and there was no artificial feeding or intrusive medical intervention. More importantly, he was never physically or chemically restrained, which is what I see happening on an almost daily basis in residential aged care.”
The Senate Palliative Care in Australia inquiry, announced late last year, aims to investigate how Australia’s palliative care system can be improved to better cope with the changing demands placed upon it.
CEO of Palliative Care Australia (PCA), Dr Yvonne Luxford, told the committee that Australia’s palliative care system fares pretty well compared to many other countries in the Asia-Pacific region.
But, she said, “access to palliative care in Australia is nothing short of a lottery, predominantly determined by your location but also affected by your diagnosis, the education of your health professional, your cultural background and your age”.
Dr Luxford, who is due to present again at the final hearing in Canberra next Tuesday, also stressed the need to increase a community and professional awareness of death and dying as a natural part of life. She called for more resources, professional development courses and education, further palliative care research, extra government funding, and more.
President of the Royal Australasian College of Physicians (RACP), Dr Leslie E. Bolitho AM, appeared before the committee in Sydney on Monday this week.
Dr Bolitho, who said the role of the physician in palliative medicine is crucial, told the senators that palliative care should receive an elevated status in the Australian healthcare system to counteract the challenges of an ageing population.
The Senate aims to issue its inquiry report on 12 September this year.
Whilst I uphold the need for palliative care there is an increasing direction for all clients with a diagnosis of dementia to be treated palliatively and this is a very worrying trend. The lack of professionals to assist in making decisions as advocates of the client and their significant others adds to this concern.