Table 1.
Characteristics of all participants involved in the study
| Characteristics | Adolescents interviewed (n = 6) | Children of parents interviewed (n = 13) | Parents a(n = 13) | Oncologists (n = 13) |
|---|---|---|---|---|
| n | n | n | n | |
| Age in years, median (range) | 15 (13–18) | 14 (13–18) | 40 (21–60) | 38 (32–52) |
| Males | 4 | 11 | 3 | 5 |
| Education | ||||
| Uneducated | 1 | 1 | 0 | 0 |
| ≤Secondary | 4 | 9 | 5 | 0 |
| Preparatory | 1 | 3 | 5 | 0 |
| Bachelor’s | 0 | 0 | 2 | 0 |
| M.D.’s | 0 | 0 | 0 | 13 |
| Master’s | 0 | 0 | 1 | 7 |
| Diploma courseb | 0 | 0 | 0 | 5 |
| Type of cancer | ||||
| Haematological neoplasmc | 2 | 2 | ||
| Extracranial solid tumourd | 3 | 9 | ||
| Tumour of the CNSe | 1 | 2 | ||
| Seven deceased adolescents | ||||
| Cause of death | ||||
| Treatment-associated complications | 1 | |||
| Cancer progression | 6 | |||
| Place of death | ||||
| Hospital | 3 | |||
| Home | 4 | |||
| Time between disclosure of therapeutic futility and death in days; median (range) | 75 (3–365) | |||
| Time between start of non-curative treatment and death in days; median (range) | 30 (3–270) | |||
| Duration of interview in min.; median (range) | 28 (11–69) | 44 (19–134) | 51 (17–76) | |
aParents or primary carers: 8 mothers, 3 fathers, 1 sister, and 1 grandmother
bDiploma course in bioethics (n = 2); thanatology (n = 2); palliative care (n = 1)
cAcute lymphoblastic leukaemia (n = 3); acute myeloid leukaemia (n = 1)
dPrimitive neuroectoderm tumour (n = 3); Ewing sarcoma (n = 2); osteosarcoma (n = 4); testicular germ cell tumour (n = 1); colon adenocarcinoma (n = 2)
eCentral nervous system: glioblastoma multiforme (n = 1); astrocytoma (n = 2)