Palliative Care for Children and Adolescents with Non-curative Brain Tumors: A Scoping Review

Children with non-curative brain tumors have a predictable and burdensome neurological decline. Care provision for these children falls in the gap where the acute inpatient services intersect with community-based providers. These children commonly receive care in the community; however, their neurological decline often outpaces engagement with community-based providers. Children with non-curative brain tumors are commonly referred to specialist palliative care services and need timely availability and access to this support. The purpose of this scoping review was to explore the evidence related to standards, guidelines, and models of palliative care provision for children with non-curative brain tumors, and to examine the facilitators and barriers to the implementation of, and access to, these services. Using a narrative synthesis method, a scoping review was conducted according to the Joanna Briggs Institute methodology using six electronic databases (Medline, Embase, Web of Science, Pubmed, CINAHL, and Cochrane Database of Systematic Reviews) from January 2013 to May 2023. A total of 2404 studies were screened for eligibility and 31 were selected for data extraction. There are no international models or standards of care for providing palliative care for children with non-curative brain tumors. Instead, palliative care is delivered at an institutional level, potentially leading to variability in the care that is provided. This variability can threaten the quality of life of these children and their families. Variability in care provision could be minimized by development of standardized palliative care provision. Any proposed standard for palliative care provision for children with non-curative brain tumors should include early integration of palliative care, and allocation of resources to enable training to operationalize referrals to palliative care teams and multidisciplinary care provision across settings, especially home-based care.