The state of paediatric palliative care in Australia

Children who received paediatric palliative care lived an average of 150 km away from the hospital at which they received care, according to latest data from the Australian Institute of Health and Welfare (AIHW).

The data is part of AIHW’s report on the delivery of specialist paediatric palliative care in Australia that draws on the experiences of an estimated 654 children that died in 2021 with a life-limiting illness.

This report aims to build the evidence base for the specialist needs of children with life-limiting conditions. It describes the characteristics, quality of care and the types of services received by all children (aged 0–20) who died between 1 January 2021 and 31 December 2021 and received palliative care services from one of eight participating children’s hospital, according to the AIHW. This study population was also compared with all children (aged 0–20) with life-limiting conditions who died in 2021.

Professor Meera Agar, Chair, Palliative Care Australia (PCA), said this new report is important to the next phase of the Paediatric Palliative Care National Action Plan Project and will help government at every level direct investment and resources in targeted ways.

“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 that need to be addressed,” Agar said.

Distance analysis revealed children living in major cities were an average of 35 km from the children’s hospital and those in inner and outer regional areas were an average 275 km away, according to the AIHW report.

“Of the 11 children from remote and very remote areas, the average distance from their usual residence to specialist palliative care was 1740 km, which is roughly the distance from Brisbane to Melbourne.

The report noted that the distribution of the study population across remoteness categories was generally similar to the Australian population of the same age for major cities (70%) and inner and outer regional areas (26%). The proportion, however, was considerably higher for remote and very remote areas (4%). “This comparison should be interpreted with caution as there were only 11 children from remote and very remote areas and the 95% confidence interval for this estimate was [2.1%, 6.4%].”

Key findings of the report include:

• Genetic and neurological conditions were more common in infants, while cancer was more common among all other children.
• Children lived an average of 150 km away from specialist palliative care.
• 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.
• One in 3 children were engaged with a palliative care team for less than 1 month.

Image credit: iStock.com/Chinnapong