title: Parents and end-of-life decision-making for their child: roles and responsibilities.
abstract: BACKGROUND
  Whether parents want to be and should be the decision-maker for their child in end-of-life matters are contested clinical and ethical questions. Previous research outcomes are equivocal.
  
  
  METHODS
  A qualitative interview method was used to examine the views and experiences of 25 bereaved parents in end-of-life decision-making for their child. Data were analysed thematically.
  
  
  RESULTS
  Three types of decision-making roles were identified: self-determined, guided (both involving active decision-making) and acquiescent (passive).The majority of parents had been active in the decision-making process for their child. They perceived themselves as the ultimate end-of-life decision-maker. This was perceived as part of their parental responsibility. A minority of parents did not consider that they had been an active, ultimate decision-maker. Generally, parents in the self-determined and guided groups reported no negative consequences from their decision-making involvement. Importantly, parents in the acquiescent group described their experience as difficult at the time and subsequently, although not all difficulties related directly to decision-making. Parents considered that in principle parents should be the end-of-life decision-maker for their child, but understood personal characteristics and preference could prevent some parents from taking this role.
  
  
  CONCLUSIONS
  This study unequivocally supports parents' desire to fulfil the end-of-life decision-making role. It provides a nuanced understanding of parents' roles and contributes evidence for the ethical position that parents should be the end-of-life decision-makers for their child, unless not in the child's best interests. On the whole, parents want this role and can manage its consequences. Indeed, not being the end-of-life decision-maker could be detrimental to parents' well-being.
authors.affiliation: The Children's Bioethics Centre, The Royal Children's Hospital, Parkville, Australia The Centre for Health & Society, The University of Melbourne, Melbourne, Australia.
authors.forename: Jane
authors.initials: J
authors.lastname: Sullivan
authors.affiliation: The Children's Bioethics Centre, The Royal Children's Hospital, Parkville, Australia The Centre for Health & Society, The University of Melbourne, Melbourne, Australia.
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
authors.affiliation: The Royal Children's Hospital, Melbourne, Australia Department of Paediatrics, The University of Melbourne, Melbourne, Australia Critical Care and Neurosciences Theme, Murdoch Children's Research Institute, Melbourne, Australia.
authors.forename: Paul
authors.initials: P
authors.lastname: Monagle
mesh_terms: D000328:Adult; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D006801:Humans; D007223:Infant; D008875:Middle Aged; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research; D013727:Terminal Care / Q000941:ethics / Q000523:psychology*
keywords: Bereavement; Paediatrics