Specialist paediatric palliative care delivered to children who died in 2021

Paediatric palliative care aims to help alleviate symptoms and improve the quality of life of a child with a life-limiting condition and their family. Paediatric palliative care differs from adult palliative care in many ways, including illness trajectories, support requirements, specialist workforce requirements, and the unique considerations for advance care planning in paediatric populations (AIHW 2022). It can be delivered by a wide range of health and community providers, is not limited to any specific condition, can be delivered at any stage of illness, and can accompany curative treatments. 

The Paediatric Palliative Care National Action Plan states that every child with a life-limiting condition and their family should have access to at least one specialist paediatric palliative care team. Access to specialist care is associated with improved quality of life, enhanced symptom control, perceived support, fewer hospitalisations, less invasive treatment, and greater use of advance care plans (PCA 2022). To improve the accessibility and quality of paediatric palliative care in Australia, robust data is needed.

Current reporting focuses on adult palliative care as there is a paucity of paediatric palliative care data in Australia (AIHW 2022). Data development is a key activity identified in the Paediatric Palliative Care National Action Plan (PCA 2022), the National Palliative Care Strategy 2018 (Australian Government 2018), and the National Palliative Care and End-of-Life Care Information Priorities report (AIHW 2022). 

Some data on child demographics and clinical indicators are currently collected by 8 children’s hospitals providing specialist paediatric palliative care services. These data are collected via the Paediatric Palliative Care Clinical Indicators survey. This survey is routinely completed by practitioners for the purpose of internal, service-level quality and monitoring following the death of a child. As such, these survey data have not been formally analysed before, and have been collated and analysed for the first time in this report.

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 have died between 1 January 2021 and 31 December 2021 and received palliative care services from one of 8 participating children’s hospitals. This study population was also compared with all children (aged 0–20) with life-limiting conditions who died in 2021. Based on the data provided, a total of 301 children receiving specialist paediatric palliative care from a children’s hospital died in 2021. This study population accounts for 15% of all children who died, and an estimated 46% of all children who died from potentially life-limiting conditions in 2021. Due to the small size of the cohort and confidentiality requirements, only high-level aggregated data are presented in this report.