First report on paediatric palliative care in Australia gives snapshot of impact and need

The Paediatric Palliative Care National Action Plan Project has achieved another first in Australia’s care and support of children, young people, and their loved ones living with life-limiting illness.

“For the first time we have data on the delivery of specialist paediatric palliative care in Australia,” say Professor Meera Agar, Chair, Palliative Care Australia (PCA).

“While it’s important to acknowledge the positive impact the sector is having for families and communities, for the very first time, through collaboration and goodwill, we can clearly see the gaps and need to be addressed.”

Data from across state and territory borders has been brought together and analysed for the first time by the Australian Institute of Health and Welfare (AIHW). Drawing on the experiences of the estimated 654 children that died in 2021 with a life limiting illness. Key findings include:

• Only 46% of all children who died in 2021 with a life-limiting condition received specialist paediatric palliative care – 301 children.
• 7 in 8 children died in the family’s end of life location goal.
• Children from regional and remote areas tended to not live as long and die at a younger age than children from major cities.
• Children with non-cancer diagnoses were more likely to be from disadvantaged areas than children with cancer diagnoses.
• Children lived an average of 150km away from specialist palliative care.
• One in 3 children were engaged with a palliative care team for less than 1 month.
• Genetic and neurological conditions were more common in infants, while cancer was more common among all other children.

“To improve the accessibility and quality of paediatric palliative care in Australia, robust data is needed,” Prof Agar says.

“This new report from AIHW is so important to the next phase of the project and will help government at every level direct investment and resources in targeted ways.”

The Paediatric Palliative Care National Action Plan Project is a collaboration between Palliative Care Australia and Paediatric Palliative Care Australia and New Zealand and is funded by the Australian Government Department of Health and Aged Care.

The Action Plan itself was launched in 2023 by Assistant Minister for Health and Aged Care, Ged Kearney and outlines 18 recommendations including measures that deal with quality, access, information sharing, collaboration, data, and research.

“PCA and the sector more broadly will take some time to review this AIHW report and consider next steps for the sector and our advice to government,” Prof Agar says.

“But it’s clear we have some work to do when 54% of children with a life limiting illness (2021) missed out on specialist paediatric palliative care, and one third of children were only referred one month before death.

“Palliative care is focused on making the most out of the life people have left, and when you are dealing with the tragedy of children and young people with a life limiting illness every moment is precious.”

The full report ‘Specialist paediatric palliative care delivered to children who died in 2021’ is available from the AIHW website.

This story was first published on the Palliative Care Australia website.