The enactment stage of end-of-life decision-making for children

Title

The enactment stage of end-of-life decision-making for children

Creator

Sullivan JE; Gillam LH; Monagle PT

Publisher

Palliative & Supportive Care

Date

2018

Subject

end-of-life decision-making; life-limiting illness; paediatrics; Palliative Care; parental support

Description

OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents' experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child's condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people's actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention. Significance of results A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician's support for parents as they care for their child.
2018-01

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).

Citation List Month

March 2018 List

Collection

Citation

Sullivan JE; Gillam LH; Monagle PT, “The enactment stage of end-of-life decision-making for children,” Pediatric Palliative Care Library, accessed October 22, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14582.

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