Conditions of dying in a tertiary children's hospital were assessed in a retrospective cohort study. Non-survivors, excluding newborns and emergency room patients, were allocated to four groups: brain death (BD), failed cardiopulmonary resuscitation (failed CPR), death following a do-not-resuscitate (DNR) order and death following withholding or withdrawal of therapy (W/W). In a 4-year period 190 (1.3%) of 14,903 admitted patients died. Of these 134 (71%) died on the paediatric intensive care unit, 42 (22%) on the ward and 14 (7%) in the operating room. W/W was found in 75 (39%), failed CPR in 57 (30%), BD in 32 (17%), and death following a DNR order in 26 (14%). Justifications for restrictions of treatment (W/W or DNR) were imminent death in 41 (41%), lack of future relational potential in 13 (13%) and excessive burden of disease in 47 (47%). In non-survivors analgesics and sedatives were frequently used to relieve suffering in the terminal phase. General principles for the approach of terminally ill children in whom death may become an option instead of a fate are discussed.
Conclusion: In the majority of children dying in hospital, death occurred following restrictions of life-sustaining treatment, comprising do-not-resuscitate or other forms of withholding or withdrawal of therapy.