Paediatric Palliatvie care

Hopkins Symposium: Childhood Dementia: Empowering unified efforts to address unmet needs

Childhood dementia is a collective term for over 100 neurodegenerative disorders that begin in childhood or adolescence, each marked by progressive cognitive decline. Most are rare or ultra-rare monogenic disorders with a combined birth frequency estimated at greater than 1 in 2,900 births. Despite their significant impact, fewer than 5% of these conditions have effective treatments and Australian health systems face significant challenges in meeting the complex and critical needs of affected patients and their families.

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Parental refusal of treatment for leukaemia – When courts decide

Olivia is a 14-year-old girl from rural NSW who was diagnosed with Pre B Acute Lymphoblastic Leukemia (ALL).  The treatment is long and arduous, but if treated immediately has a 90 percent survival rate. Without treatment she will die within four weeks. Olivia has other conditions including epileptic encephalopathy (DEE), a severe intellectual disability, global developmental delay, communication difficulties, drug-resistant seizures and behavioural difficulties. The cancer therapy would require Olivia to have over 50 general anaesthetics as she won’t accept treatment without being restrained.  

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Long-term ventilation in fatal progressive conditions: The ethics of offering, or not

The question of long-term ventilation for children with progressive conditions, such as muscular dystrophy or metabolic disease, is one of the enduring puzzles in paediatric ethics. Is it ethical to put a child on invasive mechanical ventilation when they will never be able breathe again on their own, and will inevitably die from their condition?

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Personalised care of children with medical complexity and their families:

Dr Doug Bryan is a paediatrician who has worked at the Royal Children’s Hospital since 1970. During those 48 years the prognosis and life prospects for children with chronic and complex medical conditions have improved dramatically. This has occurred partly from the discovery of new interventions but also in large part to the development of systems of care that specifically focus on the care and needs of these children and their families.

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