Which children should receive palliative care?
Four groups of children receiving palliative care have been described(1):
- Life-threatening conditions for which curative treatment may be feasible but can fail. Children in long term remission or following successful curative treatment are not included. (Example: cancer, irreversible organ failures)
- Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. (Example: cystic fibrosis, HIV)
- Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years. (Examples: Batten disease, Duchenne muscular dystrophy).
- Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. (Examples: severe cerebral palsy, multiple disabilities secondary to brain or spinal cord insult).
Program evidence suggests that families engage in pediatric palliative care at different points depending on which group their child’s condition belongs. For example, families in groups 3 and 4 will be seen in the program earlier along the disease trajectory than families in group 1(2).
Each one of the four groups will have different care needs and the classification is important for planning an appropriate multidisciplinary assessment.
Also, it is not suggested that all children in these four groups need active palliative care throughout the trajectory of their disease or condition. Individual needs are an important part of the palliative care process(1).