Table 1

Children’s characteristics (n=44)

 Male20 (45.5%)
 Living17 (38.6%)
 Deceased27 (61.4%)
 1–315 (34.0%)
 4–68 (18.2%)
 7–99 (20.5%)
 10–1212 (27.3%)
 Malignancies18 (40.9%)
 Congenital malformations17 (38.6%)
 Cardiovascular4 (9.1%)
 CNS3 (6.8%)
 Other1 (2.2%)
 Undiagnosed1 (2.2%)
Physical abilities†
 Unimpaired or mildly impaired9
 Moderately impaired15
 Severely impaired20
Cognitive abilities†
 Unimpaired or mildly impaired18
 Moderately impaired7
 Severely impaired19
Chance of dying‡
 Low chance of dying10
 Significant chance of dying23
 Terminal prognosis11
  • *For deceased children, the age at death.

  • †Based on the interviews, we estimated average abilities from the moment of the diagnosis until the moment of the interview, or until the start of the terminal phase.

  • ‡Based on the interviews, we estimated the chance of dying at the moment the bad news was delivered. Where several conversations were involved, we averaged the known prognosis.

  • CNS, central nervous system.