Pediatric home-based hospice and palliative care: a scoping review

Pediatric palliative and/or hospice care is provided across a broad spectrum of settings, ranging from inpatient to outpatient to a child's home. Pediatric home-based hospice and/or palliative care teams offer a specialized, interdisciplinary approach to care, allowing children to stay in the home while offering comprehensive support. This scoping review seeks to summarize what is known about pediatric home-based hospice and/or palliative care and to identify gaps in the current research. Following Arskey and O'Malley's scoping review framework, we searched four databases for studies focused on pediatric home-based hospice and/or palliative care programs. Studies were included if they were published between 2000 and 2024, available in English, and focused on children and young adults receiving palliative or hospice care at home, including via telehealth, in the pediatric system. Of 2,552 results initially identified, 96 met our inclusion criteria and were included in this review. Common themes emerged including studies analyzing models of care, characterizing the population, end-of-life decision making, clinical outcomes of home-based hospice and/or palliative care, costs and economic impact, family experiences, quality domains, specific treatment modalities, and the use of telehealth. Overall, the available literature supported home-based hospice and/or palliative care as an effective model of care, reducing the burden on families, improving quality of life, and allowing families to stay in their preferred setting for care without sacrificing clinical outcomes. Key research gaps included small sample sizes, limited use of control groups and scarcity of randomized clinical trials, difficulties including the perspective of the ill child in research, and a need for longitudinal studies on the effects of home-based hospice and/or palliative care on children and families. Given the compelling evidence for the benefits of pediatric home-based hospice and/or palliative care, further research into disparities in care access, best models of care, and novel payment models are critical.