By Yasmin Noone
A host of intense, harrowing stories which detail how Australians are dying in pain, without adequate care, has moved the federal parliament’s upper house to recommend an overhaul of the nation’s palliative care system.
The Senate’s Community Affairs References Committee issued its final Palliative Care in Australia inquiry report yesterday, making 38 far-reaching recommendations for government, sector and community-wide change to the way that palliative care services are rolled out, promoted, and received.
The report calls for greater efforts to better incorporate palliative care services into the broader health system, a national conversation on palliative care, and more consistent streams of federal and state funding.
As the inquiry chair, Senator Rachel Siewert, tabled the final report in chambers last night, she urged her parliamentary colleagues to consider palliative care reform as an “imperative” humanitarian matter, vital to the existence of a “civilised nation”.
Greens MP and party spokesperson for ageing, Senator Siewert, also encouraged the chamber to attempt the possible and improve the current state of play in palliative care, if not for the people who have died facing tragic care circumstances but for those who remain.
“In whatever way we perceive palliative care to be, the bottom line is that it is about life and about the proper care of someone who is alive, someone who still has days, months or years remaining to their life,” Senator Siewert told the chamber as she presented it with the Palliative Care in Australia inquiry report.
“It is about maintaining and improving on a quality of life that you and I would deem reasonable for ourselves and others that ensures comfort, dignity and freedom from preventable pain.
“This is not an impossible ask. In fact it is imperative that we, as a civilised nation, ensure our end days are filled with good experiences and memories of meaningful and worthwhile relationships.”
Palliative care is an issue that everyone will face, she stressed, and therefore one that everyone needs to seriously think about.
“But, as Palliative Care Australia said to the Senate committee, despite government commitment and the dedication of health professionals, carers and volunteers, many Australians continue to miss out on receiving appropriate end-of-life care.
“It became clear during the Senate inquiry that not all Australians who do require palliative care are receiving that appropriate care…
“The committee did hear of many examples of excellent palliative care, but unfortunately we also heard some pretty harrowing cases of failures to provide appropriate palliative care – in fact in situations where services were not able to support somebody and they had passed away before they could get to them on their list.
“…In many cases those personal experiences were very intense and in some cases harrowing, but they taught us some valuable information.”
Political and industry reaction
The report has been welcomed by the aged care sector and those who presented evidence to the inquiry.
CEO of Palliative Care Australia, Dr Yvonne Luxford, said the report clearly shows that the Senate committee heard and “received a clear message from the sector about what needs to be done to improve palliative care in this country”.
“The comprehensiveness of the report and the response from the Senators involved in the Inquiry is extremely encouraging,” Dr Luxford said.
“We look forward to seeing palliative care made a real priority in the current health reforms and recognised as an integral part of the health system [and] …to getting the national conversation started and making quality care at the end of life a reality for all Australians.”
Catholic Health Australia (CHA) echoed the peak body’s comments and congratulated the committee for paying attention to the points made in its and other sector submissions.
In particular, CHA commended the committee’s first recommendation “strongly advocated for by CHA, that the Australian Commission on Safety and Quality consider implementing a national standard for the provision of palliative care”.
Senator Concetta Fierravanti-Wells, Shadow Minister for Ageing and Shadow Minister for Mental Health, who also participated in the inquiry, labeled the report “very important”.
“As Shadow Minister for Ageing, I was particularly pleased to see two important recommendations of the Productivity Commission’s Caring for Older Australians report explored in detail, namely that the aged care sector moves to an entitlement system for aged care and advanced care planning,” Senator Concetta Fierravanti-Wells.
“This inquiry afforded us the opportunity to see practical ways in which these two recommendations could be rolled out.
“It became very clear in this inquiry that many people prefer to die at home. As we look at aged care reform, we need to keep in mind ways that can appropriately respect the desire of those who wish to die at home.”
The Minister for Mental Health and Ageing, Mark Butler, said he supported the inquiry and the need to improve palliative care services.
“Palliative care is an important part of the government’s commitment to a world-class health and aged care system,” Mr Butler said.
“…Clearly the Senate Community Affairs Committee’s report contains recommendations that need to be properly examined and the government was pleased to be an active participant in the Senate Inquiry.”
Minister Butler is yet to formally respond to the report. However, he said its recommendations are yet to be considered by the Australian Government, state and territory governments and intergovernmental bodies like COAG.
The report recommends the extraction of palliative care from the sub-acute care category for funding and the creation of a new funding category for palliative care.
It also proposes better data collection and improved research into palliative care programs and outcomes; case management strategies that cater for sexual and cultural diversity; improved consumer access to information about services; and increased support for carers.
“In many cases people’s choices are not being met,” Senator Siewert said.
“Care depends very strongly on the care provided by both professional paid care and a vast number of unpaid carers. We need to care for those people too.
“One of the things that we heard very clearly is that people need access to information. We heard so many accounts where people did not know where to go in a crisis situation to be able to find out about how they can get support, either for themselves or their loved one. That needs to be clear.
“There needs to be more accessible information. Websites need to be clear about where you can get information. There needs to be education and training across the board of healthcare professionals and of carers, and also education of the community.
“In particular, we also make a recommendation around the need for case management. People explained to us that, when they are trying to make decisions in quite desperate and crisis situations, they do not know where to go to and they do not know how to arrange the care.
“In fact, they are not in a position to be able to make some of those decisions without that information, so case management would help. We also recommend the need for case management.
“As I said, we need to look at training. We have talked about equipment, we have talked about funding for community care and looking at HACC— Home and Community Care—and the possibility of being able to fund palliative care out of that.”
The report also emphasises the need for more education for health professionals and the community, and greater support for people to die in the place of their choice.
“Palliative care has tended to focus in the past, and presently, on the aged and malignant influences such as cancer,” she said in chambers last night.
“We learned that we need to broaden that focus to ensure that there are proper services for younger people and for non-malignant diseases.
“We clearly heard that people want to die in place—they want to pass away in their place of choice, be that at home, where many people to choose to be, or in an aged-care residency, which for some people is at home.”
The 250-page document was based on submissions from 138 organisations, carers and individuals who shared their accounts and their personal experiences.
On the list of those who presented evidence to the inquiry are Palliative Care Nurses Australia; Health Care Consumers Association ACT; HammondCare; Flinders University; University of Notre Dame and St Vincent’s Sacred Heart; Blue Care; Leukemia Foundation; Victorian Aboriginal Community Controlled Health Organisation; University of Tasmania; Silver Chain Western Australia; Resthaven Inc; Cancer Voices South Australia Inc; Pharmacy Guild of Australia; and Aged and Community Services Australia; COTA Australia.
Witnesses from the Department of Health and Ageing presented evidence to the committee as did people speaking independently about their own experience with Australia’s palliative care system.
The committee thanked everyone who contributed to the inquiry and both Senator Siewert and Senator Fierravanti-Wells have since confirmed their appreciation.
“Talking about dying is never easy and I would like to thank those who shared their difficult and personal stories, so openly with us during the inquiry,” said Senator Fierravanti-Wells.
“Finally, I would also like to acknowledge the work done by Palliative Care Australia who helped drive this inquiry.”
To view the full report, visit the Senate’s website here.