November 20, 2019

Improved care for the dying is good news for all

Palliative care experts gather in Sydney this week

The Australian Palliative Care Outcomes Collaboration (PCOC) is hosting its inaugural Outcomes and Benchmarking Conference, highlighting how the use of data and evidence can improve patient care and help families adjust better to loss and bereavement.

Although most people don’t like to talk about death, evidence from PCOC provides a reason for optimism. Data collected by the research centre shows that people who receive palliative care in Australia are less likely to experience serious symptoms such as pain at the end of life – and the rate of those problems is significantly lower than a decade ago.

Professor Kathy Eagar, Executive Director of PCOC, said PCOC clinical outcomes measures were used across almost all Australian specialist palliative care services, leading to better and more consistent practice and improved outcomes for both patients and carers.

“The outcomes patients and carers are now achieving are overwhelmingly positive, for example, less than 2 per cent of people are in severe distress due to pain or breathing difficulties just before death,” Professor Eagar said.

“PCOC is increasingly recognised as a world-leading authority on palliative care outcomes.”

PCOC is based at the Australian Health Services Research Institute, University of Wollongong. Three other Australian universities - University of Western Australia, the Queensland University of Technology, and the University of Technology Sydney – are partners in PCOC, which is funded by the Australian Government Department of Health.

PCOC holds information on about 25 per cent of all predictable deaths each year, amounting to more than 20,000 patients annually. Since its establishment in 2005, it has accumulated records for more than a quarter of a million patients who have received palliative care, which can be used to assess the effectiveness of service delivery.

PCOC National Manager, Dr Barb Daveson, said PCOC is a national evidence hub for palliative care patients’ daily pain and symptom outcomes in Australia.

“It is a well-established core program in palliative care in Australia,” Dr Daveson said.

“PCOC data shows that access to palliative care is still an issue for many, especially in rural and remote areas in Australia. In the years to come, PCOC can help achieve full and adequate integration of palliative care in the Australian health system with Australia being one of the first countries to achieve this.

“The outcomes being achieved through PCOC, which demonstrate a reduction in severe distress just before death are worth celebrating, especially in light of the recent findings in the Aged Care Royal Commission, and the continued focus in Parliamentary Inquiries regarding end of life and palliative care across the country.”

PCOC has led the way in ensuring that patients’ voices are heard, by using patient-reported outcomes measures to drive improvements in service effectiveness.

An important focus for the inaugural conference program is understanding the difference in outcomes for those who die at home compared with hospital.

Using PCOC data, researchers have demonstrated that people are 51 per cent more likely to be free of severe or moderate symptoms just before death if they are in hospital, rather than at home. Yet many people who have a terminal illness express a desire to die at home, highlighting the importance of informed choice for patients and families.

Adjunct Associate Professor Leeroy William, who is President-Elect of the Australian and New Zealand Society of Palliative Medicine, will join a panel of distinguished clinicians and academics in discussing the importance of closing the gap in outcomes between home-based and hospital-based palliative care at the end of life, and how this might be achieved.

The Inaugural Palliative Care Outcomes Collaboration Outcomes & Benchmarking Conference will take place at the International Convention Centre, Sydney, on 20 and 21 November 2019.