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JOURNEYS

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

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  1. JOURNEYS Marianne Phillips August 2011

  2. 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

  3. 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)

  4. 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)

  5. THE FAMILY: • Prefer to remain at home whenever possible. • Complexity of medical interventions • Multiple teams and services involved • Are affected physically, emotionally, mentally, financially.

  6. 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

  7. JOURNEYS: • Palliative Care Australia • Sara Fleming & Clinical Reference Group • Denise Chang & Carers’ Reference Group • Sara Fleming, Sandra Coombs & Marianne Phillips (for APPCRG)

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