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Communication and Relationships in Pediatric Palliative End-of-Life Decision Making in the United Kingdom and Japan:
Kanako Takeda1, Noyuri Yamaji2,3,4, Emily Harrop5
1Division of Palliative Medicine, National Center for Child Health and Development, Tokyo, Japan.
Introduction:
Decision making in pediatric end-of-life care for children with life-limiting or life-threatening conditions (LLC/LTCs) is ethically complex and shaped by cultural values and health care systems. Although shared decision making has been increasingly emphasized, comparative evidence on how communication and relationships influence pediatric end-of-life decision making across cultural contexts remains limited. This scoping review compared communication and interpersonal relationships among health care professionals (HCPs), parents, and children in the United Kingdom and Japan.
Methods:
A scoping review was conducted in accordance with the Joanna Briggs Institute Manual for Evidence Synthesis and the PRISMA-ScR guidelines. The protocol was prospectively registered (10.6084/m9.figshare.29923349). Five databases-PubMed, Web of Science, PsycINFO, CINAHL (EBSCO), and Ichushi Web, a Japanese database-were searched for studies published between 2012 and 2025 that addressed communication and relationships in pediatric end-of-life decision making.
Results:
Sixteen reports were included (nine from the United Kingdom and seven from Japan). U.K. studies predominantly employed qualitative interviews and conversation analysis, highlighting structured communication, explicit presentation of options, and multidisciplinary support as facilitators of parental involvement. Japanese studies were largely case-based and emphasized nurses' roles in emotional attunement, sustained relational support, and consensus-building with families. In both settings, parents and HCPs experienced substantial emotional burdens and ethical dilemmas in determining what would best serve the child's interests.
Conclusions:
This review suggested that communication and relationships in pediatric end-of-life decision making were shaped by cultural and structural contexts, as reflected in the United Kingdom's more formalized, option-focused communication and Japan's more relational, nurse-mediated approach to support and consensus-building. A shared challenge across both settings was interpreting the child's best interests while respecting parental involvement. Overall, the findings indicate that trust-based, child-centered, and culturally responsive communication may strengthen support for parents and HCPs navigating end-of-life decisions.
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