Many Australians with terminal conditions are being denied the palliative care they need to end their lives with minimal pain and maximum dignity, according to data from the Australian Institute of Health and Welfare (AIHW). Its report, “Palliative care and health service use for people with life-limiting conditions,” is based on 2019/20 data.
Released during National Palliative Care Week, it reveals the benefits of palliative care for those with a terminal diagnosis but also highlights a widespread lack of access to the symptom control and social and emotional support that palliative care provides.
The AIHW found that eight out of every ten people who die in Australia each year need palliative care to assist them with a range of illnesses, including cancers, kidney failure, liver failure, dementia, and heart disease—that’s almost 2,000 people a week, or 110,000 per year.
But of that number, 62 percent don’t receive it, meaning they suffer unnecessary pain and distress, and their families are subject to additional stress and upset.
The likelihood of getting the care needed varies depending on the disease—people with dementia and heart disease are least likely to get it, while people with cancer are most likely.
It also depends on location—those in major cities are better off than those in rural and remote areas. In some of these communities, only around 15 percent of people with a life-limiting illness received timely palliative care.
Barriers to Access
“We know there are barriers to accessing timely palliative care for a range of communities,” said the Chief Executive Officer of, Palliative Care Australia (PCA), Camilla Rowland. “This new data paints a more detailed picture of who is missing out.
“It’s important to note that not all people with a terminal diagnosis require specialist palliative care, but we also know that access to, and understanding of, palliative care within primary health and aged care—where non-specialist palliative care could be delivered effectively—needs to be much better.”
Some of these findings might cause distress among people working in the field, Ms. Rowland said, describing them as “a skilled, compassionate community of doctors, nurses, allied health professionals, and volunteers.”
But she also pointed out that the AIHW data highlights the positive impact of palliative on those who are able to access it.
It found that the overwhelming majority of palliative care patients report better outcomes with pain and symptom management, and psychological and spiritual needs after palliative care intervention; while their families and carers felt their own problems improved or remained low when the patient was receiving support.
Work Underway to Improve the System
“There is so much more to understand and reflect on in this new data, which is something we will do with our members and services around Australia,” Ms. Rowland said.
“Our work with the Department of Health and Aged Care and Ministers [Mark] Butler, [Ged] Kearney, and [Anika] Wells is positive and I know the actions that need to come from this deepen the health and aged care reforms underway.”
Other data from the study includes:
- There was a 29 percent increase in palliative care-related hospitalisations between 2015/16 and 2021/22.
- Public hospitals spent $532.5 million on palliative care for admitted patients and $154.2 million for non-admitted patients in 2021/22.
- Over 1.3 million palliative care-related prescriptions were written in 2022/23, with four in every five being for pain relief.
- Pain improved or remained low for 71 percent of palliative care phases. This remained stable between 2018 and 2022.
National Palliative Care Week is an annual initiative aimed at increasing people’s understanding of palliative care and encouraging end-of-life planning.