Paediatric Palliative Care Clinical Guidelines

This project received grant funding from the Australian Government Department of Health, Disability and Ageing.

These Clinical paediatric palliative care guidelines were developed by the Shaping the Future of Paediatric Palliative Care Project, PaPCANZ and in partnership with New Zealand Paediatric Palliative Care Clinical Network (PSNZ). 

These clinical guideline are written for health care professionals who provide care to children with life-limiting diagnoses. It is intended to inform clinical practice through concise best practice advice. Please contact your Paediatric Palliative Care Service for further advice. Please read our disclaimer 

This guideline has been adapted with approval from the PSNZ New Zealand Paediatric Palliative Care Clinical Network Clinical Guidelines.   

The guidelines focus on three areas that present the greatest difficulties in paediatric palliative care:  

Agitation – management in the palliative paediatric patient,  

  • “Agitation or irritability is used to describe unpleasant psychological and physical arousal, often in circumstances in which the underlying etiology remains unclear. It refers to a complex set of symptoms and signs that are distressing to the patient, their family and caregivers. Agitation/ irritability may consist of psychological symptoms, physical symptoms and autonomic changes.”  

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Breathlessness – management in the palliative paediatric patient,  

  • Breathlessness is described as the subjective feeling of disturbed or difficulty breathing. It can also be called “dyspnoea” or “shortness of breath” and is relatively common in children with life limiting conditions. This symptom frequently occurs alongside other symptoms and is commonly associated with anxiety for the child and family. It often needs rapid and assertive management. 

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Sharing significant news about end of life in paediatrics  

  • Significant news about end of life is information which seriously impacts the family/child’s understanding of their future. It is shared with the family and, where appropriate, the child, to support them to explore care options and make decisions with the care team.  

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Each section provides immediately applicable guidelines that work across diverse healthcare settings.

Information contained in the clinical guidelines include: 

  • Goals of management  
  • Practice Principles 
  • Causes and provoking factors 
  • Clinical features 
  • Recommendations pharmacological management  
  • Non pharmacological management 
  • Dosing information 

Please read our disclaimer here

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