After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child

Title

After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child

Creator

Sullivan J E; Gillam L H; Monagle P T

Identifier

Publisher

Journal of Paediatrics and Child Health

Date

2020

Subject

adjustment; end-of-life decision-making; ethics; parent; support

Description

AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision-maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death. CONCLUSION: Results suggest that parents can live well with the ELDs they made for their child. End-of-life decision-making knowledge is confirmed and extended, and clinical support for parents informed.

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

April 2020 List

Collection

Citation

Sullivan J E; Gillam L H; Monagle P T, “After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child,” Pediatric Palliative Care Library, accessed December 8, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17044.

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