Table 1 Classification of life-limiting conditions according to the Association for Children with Life Threatening or Terminal Conditions and their Families (ACT)[19, 20]

Group 1

Conditions for which treatment with curative intention is feasible but might fail, e.g., cancer or irreversible organ failure.

Group 2

Conditions for which there are long periods of intensive treatment aimed at prolonging good-quality life but for which premature death is anticipated, e.g., cystic fibrosis, muscular dystrophy.

Group 3

Progressive condition where treatment is exclusively palliative from the time of diagnosis and may extend over many years, e.g., metabolic disorders.

Group 4

Conditions with severe disability, often neurological, which although not progressive cause extreme vulnerability to health complications and where premature death is anticipated, e.g., severe cerebral palsy, chromosomal disorders.