Background: The mortality for children with prolonged stay in pediatric intensive care units (PICU) is much higher than overall mortality. The incidence of withdrawal or limitation of therapy in this group is unknown. Purpose: To assess mortality and characteristics of children admitted for C28 days to our ICU, and to describe the extent to which limitations of care were involved in the terminal phase preceding death. Methods: For the period 2003 to 2005 clinical data were collected retrospectively for children with prolonged stay (defined as C28 days) in a medical/surgical PICU of a university children's hospital. Results: In the PICU, 4.4% of the children (116/2,607, equal gender, mean age 29 days) had a prolonged stay. Median (range) stay was 56 (28-546) days. These children accounted for 3% of total admissions and occupied 63% of total admission days. Mortality during admission for this group was five times higher (22%) than the average PICU mortality rate of 4.6%. Withdrawal or limitation of therapy preceded 70% of deaths. Conclusions: Children with prolonged stay in the PICU have a significantly high risk of mortality. Death is typically preceded by limitation of care.

Decisions made varied to a large extent. The poor outcomes should be disseminated among decision makers. Future studies must explore new ways to improve outcome prediction, extend follow-up periods and consider what living with severe handicaps really means for both child and family.