Provision of comfort care amidst quicksand: A scoping review of the common elements in neonatal end-of-life care

Background: Neonatal end-of-life (EOL) care remains a complex challenge in modern healthcare. Increasing numbers of infants with life-limiting illnesses are dying at home or in hospitals, with or without hospice involvement. Despite numerous reviews, commentaries, case reports, and original studies addressing neonatal EOL care, there are currently no standardized guidelines. This gap complicates the quality and delivery of care during this fragile phase. Methods: We conducted a comprehensive review of published literature on neonatal EOL care, including systematic reviews, observational studies, and expert recommendations. Common elements were identified across these sources to inform future research directions. Our analysis focused on recurring themes related to symptom management, family-centered care, ethical considerations, and interdisciplinary collaboration. Results: The literature consistently highlights key components of neonatal EOL care: effective pain and symptom control, clear communication with families, psychosocial support, and involvement of multidisciplinary teams. However, significant variability exists in implementation across settings. Few studies provide longitudinal or prospective data, and most recommendations lack empirical validation, underscoring the need for standardized approaches. Conclusion: Current evidence suggests that harmonizing neonatal EOL practices could improve care quality and reduce fragmentation in EOL care coordination. We propose feasibility studies and prospective research to evaluate these common elements for integration into evidence-based guidelines. Such efforts align with the World Health Organization’s (WHO’s) mission to enhance EOL care globally, ensuring dignity and comfort for neonates and their families.