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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).

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journeys

JOURNEYS

Marianne Phillips

August 2011

paediatric palliative care
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
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
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
THE FAMILY:
  • Prefer to remain at home whenever possible.
  • Complexity of medical interventions
  • Multiple teams and services involved
  • Are affected physically, emotionally, mentally, financially.
journeys1
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
journeys2
JOURNEYS:
  • Palliative Care Australia
  • Sara Fleming & Clinical Reference Group
  • Denise Chang & Carers’ Reference Group
  • Sara Fleming, Sandra Coombs & Marianne Phillips (for APPCRG)