Which children should receive palliative care?
All children with a life-limiting illness can benefit from a palliative approach to their care. In some situations, the child’s general practitioner or paediatrician may be able to sufficiently support the child and family; however, access to a specialist paediatric palliative care service should be available to all children in Australia.
There are over 400 life-limiting conditions of childhood, affecting neonates through to adolescents and young adults. Any organ system can be affected, and most paediatric subspecialties have a cohort of patients with palliative care needs. Some conditions are associated with a gradual deterioration in function that occurs over a number of years, with those affected becoming increasingly dependent on their parents and carers.
More than half of the diagnoses in children with life-limiting illnesses are of nonmalignant conditions.
Life-limiting illness in paediatric palliative care can be categorised as:
- conditions for which curative treatment may be feasible, but which can fail (eg some metastatic or relapsed cancers)
- conditions that are progressive and not curable, but can be managed with disease-modifying therapies (eg cystic fibrosis, Duchenne muscular dystrophy)
- conditions for which only supportive treatment options are available, and management is palliative from either birth or the time of diagnosis (eg trisomy 18, Batten disease, mucopolysaccharidoses)
- nonprogressive conditions and disabilities (eg severe cerebral palsy) that carry a risk of death from complications (eg intractable seizures, respiratory problems).