What parents want from doctors in end-of-life decision-making for children

Title

What parents want from doctors in end-of-life decision-making for children

Creator

Sullivan J; Monagle P; Gillam L

Publisher

Archives Of Disease In Childhood

Date

2013

Description

OBJECTIVE: End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents' views and experiences of end-of-life decision-making. DESIGN: A qualitative method with a semistructured interview design was used. SETTING: Parent participants were living in the community. PARTICIPANTS: Twenty-five bereaved parents. MAIN OUTCOMES: Parents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor's role were to provide follow-up support and referral. CONCLUSIONS: Understanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.
2013-12

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Citation

Sullivan J; Monagle P; Gillam L, “What parents want from doctors in end-of-life decision-making for children,” Pediatric Palliative Care Library, accessed October 18, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14701.

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