A 7-year review of deaths on the general paediatric wards at John Hunter Children's Hospital, 1991-97

To study the palliative management of children dying on the wards of a tertiary referral centre. In particular to identify areas of difficulty and discuss ways in which these can be improved.

All children between the ages 1 and 19 years dying on the general paediatric wards of the John Hunter Children's Hospital (JHCH) (a tertiary referral centre in New South Wales Hunter Valley) between 1991 and 1998 were included in the study. The main outcome measures were the duration of 'terminal care only' treatment; time spent in hospital in the previous year; analgesia used, dose and route of administration; adjuvant medications; quality of life in the final 24 h.

Eighteen children (aged between 1 and 19 years) died on the general paediatric wards at JHCH between 1991 and 1998. The most common diagnosis was malignancy (five patients), with cystic fibrosis, cerebral palsy and a degenerative neurological disorder each accounting for four patients, and one child had herpes simplex encephalitis. In all children the terminal nature of their condition was recognized and in all but three patients there was documentation of 'not for resuscitation' (NFR) orders following discussion with the child's parents. The mainstay of analgesia was an intravenous narcotic infusion with 11 (61%) children needing a morphine infusion. Fifteen patients (83%) required other medications including antiemetics, anticonvulsants and corticosteroids. Twelve (66%) children were semiconscious or unconscious on the day of death. Three children were uncomfortable and distressed, one alert and symptom free and in two cases the level of consciousness was not recorded. Three children continued to have seizures until their death.

The majority of terminally ill children were managed well with intravenous narcotics and adjuvant medications. There may be scope for such children to be managed successfully at home with appropriate support for the general practitioner by paediatric and palliative care specialists. Some cases in which palliation is difficult do remain in hospital and additional measures need to be employed to ensure a symptom free death for these children.