Considering quality of life in end-of-life decisions for severely disabled children

Title

Considering quality of life in end-of-life decisions for severely disabled children

Creator

Zaal-Schuller IH; Willems DL; Ewals Fvpm; van Goudoever JB; de Vos MA

Publisher

Research In Developmental Disabilities

Date

2017

Subject

Child; disabled children; End-of-life; Healthcare professional; Intellectual Disability; Only Child; parent; Qualitative Research; quality of life

Description

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. AIMS: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. METHODS: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. RESULTS: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS. CONCLUSIONS: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions.

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

February 2018 List

Collection

Citation

Zaal-Schuller IH; Willems DL; Ewals Fvpm; van Goudoever JB; de Vos MA, “Considering quality of life in end-of-life decisions for severely disabled children,” Pediatric Palliative Care Library, accessed October 15, 2018, https://pedpalascnetlibrary.omeka.net/items/show/11272.

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