title: The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands.
abstract: OBJECTIVE
  The goal of this study was to investigate how Dutch pediatric specialists reach end-of-life decisions, how they involve parents, and how they address conflicts.
  
  
  METHODS
  We conducted a national cross-sectional survey among pediatric intensivists, oncologists, neurologists, neurosurgeons, and metabolic pediatricians practicing in the 8 Dutch university hospitals. We collected information on respondents' overall opinions and their clinical practice.
  
  
  RESULTS
  Of the 185 eligible pediatric specialists, 74% returned the questionnaire. All responding physicians generally discuss an end-of-life decision with colleagues before discussing it with parents. In half of the reported cases, respondents informed parents about the intended decision and asked their permission. In one-quarter of the cases, respondents informed parents without asking for their permission. In the remaining one-quarter of the cases, respondents advised parents and consequently allowed them to have the decisive voice. The chosen approach is highly influenced by type of decision and type and duration of treatment. Conflicts within medical teams arose as a result of uncertainties about prognosis and treatment options. Most conflicts with parents arose because parents had a more positive view of the prognosis or had religious objections to treatment discontinuation. All conflicts were eventually resolved by a combination of strategies. In 66% of all cases, pain and symptom management were intensified before the child's death.
  
  
  CONCLUSIONS
  Within Dutch pediatrics, end-of-life decisions are team decisions. Pediatric specialists differ considerably in how they involve parents in end-of-life decision-making, ranging from benevolent paternalism to parental autonomy. Main conflict-solving strategies are taking more time and extending discussions.
authors.affiliation: Department of Pediatrics, Academic Medical Centre/Emma Children's Hospital, PO Box 22660, 1100 DD Amsterdam, Netherlands. m.a.devos@amc.nl
authors.forename: Mirjam A
authors.initials: MA
authors.lastname: de Vos
authors.forename: Agnes
authors.initials: A
authors.lastname: van der Heide
authors.forename: Heleen
authors.initials: H
authors.lastname: Maurice-Stam
authors.forename: Oebele F
authors.initials: OF
authors.lastname: Brouwer
authors.forename: Frans B
authors.initials: FB
authors.lastname: Plötz
authors.forename: Antoinette Y N
authors.initials: AY
authors.lastname: Schouten-van Meeteren
authors.forename: Dick L
authors.initials: DL
authors.lastname: Willems
authors.forename: Hugo S A
authors.initials: HS
authors.lastname: Heymans
authors.forename: Albert P
authors.initials: AP
authors.lastname: Bos
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel / Q000208:ethnology; D002648:Child; D002675:Child, Preschool; D002835:Christianity / Q000523:psychology; D003299:Cooperative Behavior; D003430:Cross-Sectional Studies; D003625:Data Collection; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D033183:Interdisciplinary Communication; D007514:Islam / Q000523:psychology; D008020:Life Support Care / Q000523:psychology*; D018447:Medical Futility / Q000523:psychology; D008875:Middle Aged; D017008:Negotiating; D009426:Netherlands; D010166:Palliative Care / Q000523:psychology; D026706:Paternalism; D010348:Patient Care Team; D010372:Pediatrics; D026684:Personal Autonomy; D011368:Professional-Family Relations; D012068:Religion and Medicine; D016414:Resuscitation Orders / Q000523:psychology*; D028761:Withholding Treatment