J C de Boer1, L Gennissen2, M Williams1, M van Dijk1,3, D Tibboel3, I Reiss1, S Naghib3, J Sol1,4. 1. Division of Neonatology, Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands. 2. Department of Pediatrics, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands. 3. Intensive Care and Department of Pediatric Surgery, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands. 4. Department of Pediatrics, Groene Hart Hospital, Gouda, The Netherlands.
Abstract
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.
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.
Authors: Agnes van der Heide; Luc Deliens; Karin Faisst; Tore Nilstun; Michael Norup; Eugenio Paci; Gerrit van der Wal; Paul J van der Maas Journal: Lancet Date: 2003-08-02 Impact factor: 79.321