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Parents and end-of-life decision-making for their child: roles and responsibilities
  1. Jane Sullivan1,2,
  2. Lynn Gillam1,2 and
  3. Paul Monagle3,4,5
  1. 1The Children's Bioethics Centre, The Royal Children's Hospital, Parkville, Australia
  2. 2The Centre for Health & Society, The University of Melbourne, Melbourne, Australia
  3. 3The Royal Children's Hospital, Melbourne, Australia
  4. 4Department of Paediatrics, The University of Melbourne, Melbourne, Australia
  5. 5Critical Care and Neurosciences Theme, Murdoch Children's Research Institute, Melbourne, Australia
  1. Correspondence to Dr Jane Sullivan, The Children's Bioethics Centre, Royal Children's Hospital, Flemington Road, Parkville 3052, Australia; The Centre for Health & Society, The University of Melbourne, Melbourne, VIC 3010, Australia; sulj{at}unimelb.edu.au

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.

Method 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.

  • Bereavement
  • Paediatrics

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