JOURNEYS
Marianne Phillips
August 2011
PAEDIATRIC PALLIATIVE CARE:
• 1 in 1000 children aged 0-18 years
have a life-limiting illness
• 1 in 10,000 children aged 0-18 years
die each year from life-limiting illness
Types of life-limiting illness:
(ACT & RCPCH 2003)
• Group 1: Conditions where treatment may be feasible
but can fail (cancer, organ failure)
• Group 2: Premature death inevitable but may have
long periods of treatment (cystic fibrosis, cardiac anomalies)
• Group 3: Progressive conditions with no curative
options, treatment is palliative and may extend over
many years (metabolic disorders, neurodegenerative disorders)
• Group 4: Irreversible but non-progressive conditions
with likelihood of premature death (severe cerebral palsy,
congenital malformations)
THE CHILDREN:
• diversity of rare conditions
• genetic components (siblings may be affected)
• 30-40% cancer / 60-70% non-cancer
•
• different illness trajectories
• developmental issues
(age, physical, cognitive, emotional)
• ethical and legal differences
(minors & parental
decision making)
THE FAMILY:
• Prefer to remain at home whenever possible.
• Complexity of medical interventions
• Multiple teams and services involved
• Are affected physically, emotionally,
mentally, financially.
JOURNEYS:
• Resource to navigate the systems
• Source of advice and support
– information, care options, financial supports
• Companion
– through diagnosis, the illness, dying, death
and beyond
JOURNEYS:
• Palliative Care Australia
• Sara Fleming & Clinical Reference Group
• Denise Chang & Carers’ Reference Group
•
• Sara Fleming, Sandra Coombs &
Marianne Phillips (for
APPCRG)