Distressing lack of access to palliative care highlighted in new data

New data released during National Palliative Care Week reveals the benefits of palliative care for those with a terminal diagnosis but also highlights a distressing lack of access to the symptom control, and social and emotional support palliative care offers.

Produced by the Australian Institute of Health and Welfare (AIHW), the data fills in gaps in our knowledge about people with life-limiting conditions and their access to quality palliative care. PCA congratulates the AIHW and all jurisdictions on this achievement under the National Palliative Care Strategy (2018).

“We know there are barriers to accessing timely palliative care for a range of communities,” says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA)

“This new data paints a more detailed picture of who is missing out.”

Some of the key findings from AIHW’s ’Palliative care and health service use for people with life-limiting conditions’ report (based on 2019-20 data):

• 80% of all expected deaths in Australia each year need palliative care – that’s 4 in 5 people with illnesses including cancers, kidney failure, liver failure, dementia, heart disease.
• That is almost 110,000 people per year, or 2000 people a week.
• 62% of all people who need palliative care did not receive specialist palliative care
• People with dementia and heart disease are least likely to receive specialist palliative care, while people with cancer are most likely.
• Those in major cities are more likely to receive timely specialist palliative care than those in rural and remote areas. In some of these communities only around 15% of people with a life limiting illness received timely palliative care.

“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,” Ms Rowland says.

“Some of these findings may cause distress in our sector, which is a skilled, compassionate community of doctors, nurses, allied health professionals, and volunteers, but the AIHW data also points to the positive impact and power of palliative care when people are able to access it.”

Key findings from AIHW’s ‘National Palliative Care Measures’ report:

• The overwhelming majority of palliative care patients report better outcomes with pain and symptom management, psychological and spiritual needs, after palliative care intervention.
• The overwhelming majority of families and carers of people with a life limiting illness felt their own problems improved or remained low with support from palliative care services.

“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 says.

“Our work with the Department of Health and Aged Care and Ministers Butler, Kearney, and Wells is positive and I know the actions that need to come from this deepen the health and aged care reforms underway.”

The Australian Institute of Health and Welfare three data releases for National Palliative Care Week:

1. National palliative care measures
2. Palliative care and health service use for people with life-limiting conditions
3. Palliative care services in Australia

Are available on the AIHW website.