Children’s outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit

Objective:we reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children’s outcomes at 2-year follow-up.study design:in an explorative observational study, 61 cases were evaluated. the children involved had been discussed in such a structured way from 2009 to 2012 in a level iii-d neonatal intensive care unit.results:decisions made were: full treatment (n=6), earlier restriction cancelled (n=3), treatment restriction (n=30) and palliative care (n=22). parents of six children disagreed with the decision proposed. thirteen (54%) of the 24 children who survived (39%) had moderate to severe neurological problems; 8 (33%) had additional sequelae; only one 2-year-old child was healthy.conclusions: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.