title: 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.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Division of Neonatology, Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: J C
authors.initials: JC
authors.lastname: de Boer
authors.affiliation: Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: L
authors.initials: L
authors.lastname: Gennissen
authors.affiliation: Division of Neonatology, Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: Williams
authors.affiliation: Division of Neonatology, Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.|Intensive Care and Department of Pediatric Surgery, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: van Dijk
authors.affiliation: Intensive Care and Department of Pediatric Surgery, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: D
authors.initials: D
authors.lastname: Tibboel
authors.affiliation: Division of Neonatology, Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: I
authors.initials: I
authors.lastname: Reiss
authors.affiliation: Intensive Care and Department of Pediatric Surgery, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: S
authors.initials: S
authors.lastname: Naghib
authors.affiliation: Division of Neonatology, Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands.|Department of Pediatrics, Groene Hart Hospital, Gouda, The Netherlands.
authors.forename: J
authors.initials: J
authors.lastname: Sol
mesh_terms: D002675:Child, Preschool; D000066491:Clinical Decision-Making / Q000941:ethics*; D016638:Critical Illness / Q000401:mortality* / Q000628:therapy*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D008297:Male; D009426:Netherlands; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D011446:Prospective Studies; D016019:Survival Analysis; D028761:Withholding Treatment / Q000941:ethics / Q000592:standards*