[End-of-life care in a Spanish Pediatric Intensive Care Unit: staff and parental evaluation]

To evaluate end-of-life care in a Paediatric Intensive Care Unit (PICU).

Retrospective study developed in a PICU.

41 workers from the PICU and parents of 26 deceased children (from 2001 to 2005). A questionnaire was designed to investigate end-of-life care.

An age < 1-year old and a chronic or congenital disease correlated with a perceived lack of consistency in information. Nearly 38 % parents were with their children at the time of death; 64 % of all parents consider this "positive", and 13 % consider it "negative". Forty per cent of staff stated that it is "positive" for parents to be by the side of their child at the time of death, and 52 % do not know. Seventy-three per cent of staff, but only 29 % of parents want further professional psychological support for parents. Twenty per cent of children died following withdrawal of life support. The most important factors for this decision were the possibility of survival and quality of life. The majority (73 %) of caregivers express the view that often, this decision should be taken earlier.

Analysis of staff opinions underlines the importance of the way news is communicated, the timing of withdrawal of life support, and the need for psychological support. Parents emphasized the role of the family during time spent in a PICU and during the last moments.