title: Talking with parents about end-of-life decisions for their children.
abstract: OBJECTIVE
  Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process.
  
  
  METHODS
  We conducted a prospective exploratory study in 2 Dutch University Medical Centers.
  
  
  RESULTS
  Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision.
  
  
  CONCLUSIONS
  We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.
authors.affiliation: Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, Netherlands; m.a.devos@amc.nl.
authors.forename: Mirjam A
authors.initials: MA
authors.lastname: de Vos
authors.affiliation: Department of Paediatric Intensive Care, Emma Children's Hospital, Academic Medical Centre, University of Amsterdam, Amsterdam, Netherlands;
authors.forename: Albert P
authors.initials: AP
authors.lastname: Bos
authors.affiliation: Department of Paediatrics, Tergooiziekenhuizen, Hilversum, Netherlands;
authors.forename: Frans B
authors.initials: FB
authors.lastname: Plötz
authors.affiliation: Department of Paediatric Intensive Care, VU University Medical Centre, Amsterdam, Netherlands;
authors.forename: Marc
authors.initials: M
authors.lastname: van Heerde
authors.affiliation: Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, Netherlands;
authors.forename: Bert M
authors.initials: BM
authors.lastname: de Graaff
authors.affiliation: Department of Communication and Information Studies, Tilburg University, Tilburg, Netherlands; and.
authors.forename: Kiek
authors.initials: K
authors.lastname: Tates
authors.affiliation: Division of Critical Care Medicine, Boston Children's Hospital; Division of Medical Ethics, Harvard Medical School, Boston, Massachusetts.
authors.forename: Robert D
authors.initials: RD
authors.lastname: Truog
authors.affiliation: Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, Netherlands;
authors.forename: Dick L
authors.initials: DL
authors.lastname: Willems
mesh_terms: D000293:Adolescent; D016223:Advance Directives; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D015278:Intensive Care Units, Pediatric; D008020:Life Support Care; D008297:Male; D009426:Netherlands; D010166:Palliative Care; D010372:Pediatrics; D011368:Professional-Family Relations; D011446:Prospective Studies; D036301:Qualitative Research; D028761:Withholding Treatment
keywords: end-of-life decision-making; palliative care; parents; pediatric intensive care