• Meghan L Marsac, Christine Kindler, Danielle Weiss, and Lindsay Ragsdale.
• 1 Department of Pediatrics, Kentucky Children's Hospital , Lexington, Kentucky.
• J Palliat Med. 2018 Jun 1; 21 (6): 862-878.

BackgroundCommunication 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.ObjectiveThis review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care.DesignSystematic review.ResultsFindings 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.ConclusionsFamilies 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.

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