Let's talk about it: Supporting family communication during end-of-life care of pediatric patients

Meghan L. Marsac, Christine Kindler, Danielle Weiss, Lindsay Ragsdale

Research output: Contribution to journalReview articlepeer-review

30 Scopus citations

Abstract

Background: Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. Objective: This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Design: Systematic review. Results: Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. Conclusions: Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

Original languageEnglish
Pages (from-to)862-878
Number of pages17
JournalJournal of Palliative Medicine
Volume21
Issue number6
DOIs
StatePublished - Jun 2018

Bibliographical note

Publisher Copyright:
© 2018 Mary Ann Liebert, Inc.

Keywords

  • child
  • death
  • family
  • family communication
  • palliative care
  • sibling

ASJC Scopus subject areas

  • General Nursing
  • Anesthesiology and Pain Medicine

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