More than 21 million children worldwide need access to palliative care. For many clinicians, particularly those outside specialist paediatric palliative care teams, providing consistent evidence-based palliative care can be challenging without clear clinical guidance.
Australia has addressed this gap by releasing its first national clinical guidelines for paediatric palliative care, developed through an innovative partnership with New Zealand. These guidelines offer practical solutions that healthcare teams can implement immediately.
Tackling three critical challenges
The guidelines focus on three areas that present the greatest difficulties in paediatric palliative care: managing agitation, addressing breathlessness, and sharing significant news with families. Each section provides immediately applicable guidelines that work across diverse healthcare settings.
Managing Agitation: When children become distressed and agitated, clinicians can identify multiple causes and triggers using these stepped approaches. Simple environmental changes and ensuring familiar caregivers stay present often help, while advice on medication provides clear dosing guidance for different age groups including newborns. Comprehensive information help clinicians systematically consider everything from physical symptoms like pain and constipation to environmental factors like noise or positioning.
Addressing Breathlessness: This distressing symptom creates anxiety for both child and family, but practical solutions make a real difference. The guidelines help clinicians identify both respiratory and non-respiratory causes before moving through management strategies that range from environmental modifications like cooling and airflow management to positioning techniques and respiratory support options. Detailed medication tables provide specific dosing for morphine and benzodiazepines, with clear guidance on when to consider continuous infusions.
Sharing Significant News: Difficult conversations become more compassionate with structured communication frameworks like the SPIKES guide that respect family values and cultural differences. Preparation steps guide clinicians through conversations across different developmental stages, from perinatal environments through to adolescence, with specific considerations for cultural sensitivity, interpreter use, and comprehensive follow-up planning.
International collaboration in action
What sets these guidelines apart is their development through a genuine partnership between Palliative Care Australia (PCA) and Paediatric Palliative Care Australia and New Zealand (PaPCANZ) and the New Zealand Paediatric Palliative Care Clinical Network (PSNZ). This Trans-Tasman collaboration demonstrates how international cooperation can enhance paediatric palliative care development.
The partnership adapted New Zealand’s existing clinical guidelines and updated them with the most recent literature, best practice, and consumer input. The guidelines were also tailored to fit the Australian context. As a result, the guidelines reflect best practices from both healthcare systems. This model offers valuable lessons for other nations seeking to develop their own paediatric palliative care guidelines.
Families as partners in development
Central to the guidelines’ development was the meaningful involvement of families with lived experience. Parents, carers, and young people who had navigated the paediatric palliative care system were integral partners throughout the process, ensuring clinical recommendations aligned with real family needs and preferences.
This co-design approach means the guidelines address not just clinical symptoms, but the broader experience of care. They recognise that effective paediatric palliative care is care that supports the entire family through some of the most challenging moments they’ll face.
Building confidence across all settings
Whether working in metropolitan children’s hospitals, regional emergency departments, or community health settings, these guidelines provide healthcare teams with the evidence-based foundation they need to support confident clinical decision-making. The structured approach means that clinicians who may encounter paediatric palliative care situations infrequently can access clear, practical guidelines precisely when families need them most.
By translating complex evidence into immediately applicable guidance, the guidelines bridge the gap between specialist knowledge and frontline care, ensuring that every child and family receives consistent, compassionate support regardless of where they receive care.
Taking action
Healthcare professionals can access these guidelines through the Royal Children’s Hospital Melbourne’s Clinical Practice Guidelines website https://www.rch.org.au/clinicalguide/Paediatric_palliative_care_guidelines/. The guidelines are freely available and designed for immediate implementation across all healthcare settings.
As we work collectively toward ensuring all 21 million children who need palliative care can access safe and compassionate care, these guidelines remind us that progress is possible when families, clinicians, researchers, and policymakers unite around a shared vision of compassionate, competent care.
Contact: For more information about these guidelines, contact Palliative Care Australia at paediatrics@palliativecare.org.au.
Writer bio: On behalf of Palliative Care Australia, Sarah Vercoe is a freelance health writer specialising in emotionally resonant storytelling that humanises healthcare.