Dr Bronwyn Sacks Paediatric palliative care physician , Victorian Paediatric Palliative Care Program , Royal Children ’ s Hospital and Monash Children ’ s Hospital , Melbourne , Victoria ; chief medical officer , Very Special Kids Hospice , Melbourne , Victoria . Research associate , Murdoch Children ’ s Research Institute , Melbourne , Victoria .

First published online on 9 June 2023

BACKGROUND

AN estimated 14,000 Australian children

aged 0-15 have a life-limiting condition ; around 1500 children aged 0-15 die annually , with 70 % dying in infancy ( birth-one year ). 1-3 Child mortality rates decrease substantially after infancy , until the teenage years , when they again increase . 3

Children may experience life-limiting or life-threatening conditions : life-limiting conditions ( LLCs ) are those where there is no reasonable hope of cure ; lifethreatening conditions are those where curative treatment is feasible but may fail ( see table 1 ). 4 This How to Treat uses the term LLC .

Paediatric palliative care ( PPC ), first described in 2000 , is a distinct albeit closely related field to adult palliative care ( see box 1 ). PPC is an active approach to care embracing physical , emotional , social and spiritual elements , from diagnosis through to death and bereavement . 5 PPC services started operating in NSW and SA in the 1990s . 6 The Australian and New Zealand Paediatric Palliative Care Reference Group was formed in 2005 , and a formal training pathway for paediatricians

Table 1 . Categories of life-limiting and life-threatening conditions

Category

Category 1

Category 2

Detail

Life-threatening conditions for which treatment may be feasible but can fail , eg , malignancy , organ failures for which transplant is possible Palliative care may play a role in parallel planning , and support children through to end of life , or discharge from palliative care if cure is achieved

Conditions where premature death is inevitable , eg , cystic fibrosis and muscular dystrophy Palliative care may work to support chronic health models of care for these children , and escalate palliative care input at times of particular health vulnerability or symptom burden

Category 3 Progressive conditions without curative treatment options , eg , metabolic conditions Palliative care may support these children over many years , from diagnosis through to death and bereavement , often many years later

Category 4

Irreversible , non-progressive conditions causing severe disability that make a child susceptible to health complications and premature death , eg , severe cerebral palsy , hypoxic ischaemic encephalopathies and other acquired brain injuries Palliative care may play a role in supporting families ’ adjustment to uncertainty , and optimising quality of life through to death and bereavement

Adapted from Together for Short Lives 4

subspecialising in palliative medicine was ratified in 2014 . 7

The death of a child is an uncommon yet devastating event ; it has a profound and lasting effect on

parents , siblings , health professionals and communities . Children and their families travel an often lonely journey , laden with complex medical treatment decision-making and

ever-present grief . It is well recognised that “ the healthcare that children with LLCs receive in the last years , months and weeks of their lives can help families to manage the distress and grief associated with death and dying and maximise the child ’ s quality of life ”. 8 The GP can play a crucial role in this care , with consultative support from PPC specialists .

This How to Treat offers an overview of PPC services , symptom burden in this cohort , principles of advance care planning ( ACP ), child and parent experiences , end-of-life care and bereavement . It aims to ensure the GP can recognise when a child may benefit from specialist PPC , engage appropriately with PPC services , and support the child and their family from diagnosis of an LLC through to bereavement .

MODELS OF CARE

DEDICATED PPC programs exist in

Queensland , NSW , Victoria , SA and WA . Each service is affiliated with a major paediatric hospital and there are strong links to paediatric hospices in Queensland , NSW and Victoria . The low number of patients who access PPC , their heterogeneity and