A new tool that aims to help doctors and other health professionals identify the right time to refer children, young people, and their families to paediatric palliative care has been released.
Palliative Care Australia (PCA) has launched the Timely Referral Paediatric Palliative Care Decision-Making Tool, developed as part of the Shaping the Future Paediatric Palliative Care Project.
Palliative Care Australia chief executive Camilla Rowland said the decision-making support tool highlighted that timely referral was not simply about assessing a stage of illness, but about ensuring families have the right support at the right time.
“Historically, slow referral to paediatric palliative care has limited the support available to children and families,” she said.
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Funded by the Australian Government, its development was a key action item identified in the Paediatric Palliative Care National Action Plan.
Data released by the Australian Institute of Health and Welfare (AIHW) in 2024 found that one in three children who received specialist paediatric palliative care had been engaged with the service for less than one month before their death.
An awareness campaign, Know the Right Time, has also been launched to encourage clinicians to reflect on when and how to make referrals that best support families from diagnosis through to end-of-life care.
The new tool was developed over 18 months in collaboration with families, paediatric palliative care specialists, and referring clinicians including neurologists, oncologists, cardiologists, and neonatologists.
“The tool supports reflective practice, helping clinicians assess a child’s medical condition, psychosocial context, and family needs to determine when referral is appropriate,” Ms Rowland said.
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“Although palliative care can be a confronting term, a timely referral can offer valuable additional support to children, families and their care teams.
“Early involvement allows time to understand what matters most to a child and their family, supports informed decisions, and ensures effective symptom management. It also allows time for important conversations, sibling support, and greater choice – improving quality of life.
“Late referrals greatly reduce the ability to provide these important care interventions, meaning families may not get the support they need when they need it most. It may also result in care teams wondering if things could have been done differently.”
Ms Rowland said the need for this tool would only grow with an estimated 41,775 children and young people aged 0 to 21 years who might benefit from paediatric palliative care services by 2027.
“For clinicians, families, and palliative care teams alike, the message is clear: Know the right time – because timely referral can change the course of care and support for every child and family,” Ms Rowland said.
The Timely Referral Paediatric Palliative Care Decision-Making Guideline Tool is now available for download in both short and full versions.
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