Scoping review supports pediatric home-based hospice, palliative care

Children with life-limiting conditions who receive hospice and palliative care at home appear to fare as well clinically as those cared for in the hospital, while their families report better quality of life and fewer logistical burdens, according to a scoping review published in BMC Palliative Care.¹ Most of that evidence, however, comes from small retrospective studies in high-income countries.¹

The review, led by Ellen Davis of the Northeast Ohio Medical University College of Medicine, with corresponding author Daniel H. Grossoehme of the Haslinger Family Pediatric Palliative Care Center at Akron Children's Hospital, mapped 93 studies published between 2000 and 2024.¹ The authors wrote that the findings should "compel state and federal legislators and payers to work with experienced healthcare providers" to build accountability and new payment models for these programs.¹

Scope of the pediatric home-based palliative care review

More than 21 million children worldwide live with life-limiting conditions that would benefit from palliative care.² The investigators screened 2,552 records from 4 databases.¹ Retrospective analyses of medical records or claims data were the most common design (n = 35), followed by qualitative (n = 24) and survey-based studies (n = 22).¹ The US (n = 24) and Germany (n = 18) contributed the most studies; none came from Latin America.¹

Clinical outcomes and hospital utilization with home-based care

Among studies with comparison groups, inpatient length of stay was significantly shorter with home-based care in all 3 that reported it, and 2 of 3 found fewer admissions.¹ Emergency department visits did not differ significantly in 2 studies.¹ An Indonesian randomized clinical trial in children with cancer found better quality of life and lower symptom intensity after a home palliative care visit.¹ Two German studies reported improved child quality of life by parent proxy, along with reduced caregiver anxiety, depression, and burden.¹

Location of death varied by country. Most children in German and Indian studies died at home, whereas a minority of US children did, particularly those with public insurance.¹ Pain was the most frequently reported symptom managed at home, and 1 study found children self-reported more physical symptoms than parents or hospice nurses perceived.¹

Cost of pediatric home-based hospice and palliative care

In US studies, savings were driven mainly by fewer hospital days.¹ In 1 single-institution analysis, children with 6 months of home-based care exposure had inpatient stays 38 days shorter and mean total hospital charges $275,000 lower.³ In Singapore, children in a home-based program spent an average of 52 more days at home and had lower costs in the last year of life than controls.¹

Family experience, telehealth, and quality domains

Family experience was the most studied theme, appearing in 25 studies.¹ Families valued 24/7 access, trusted relationships, honest communication, and care coordination.¹ Still, caregivers in an Italian study spent a mean of 9 hours a day on hands-on care and managed 5 devices, and siblings often reported lower quality of life.¹

Telehealth appeared to maintain quality, with 1 study finding no differences in emergency department visits, intensive care admissions, or end-of-life quality metrics vs in-person visits.¹ Rural families saved an average of 8 hours per encounter, although non-English speakers and families without patient portal access were underrepresented.¹ Quality research validated the 8 National Consensus Project domains for pediatric home-based care and added 3 more: continuity and coordination, bereavement care, and compassionate care.¹

Limitations and research gaps in pediatric palliative care at home

Prospective and randomized studies were scarce, partly because withholding home-based care from a control group is considered unethical.¹ Sample sizes were small outside multisite studies, and satisfaction was often measured through a single parent, usually the mother, leaving children's and siblings' perspectives largely absent.¹ Although 98% of children who need palliative care live in low-resource settings, only 1 included study came from Africa.¹ The authors also acknowledged that team members coauthored 10 included studies, a single reviewer screened titles and abstracts, and individual study quality was not appraised.¹

They identified 3 priorities: expanding equitable access, especially in rural and resource-limited settings; prospective, longitudinal studies capturing child- and family-reported outcomes; and testing implementation strategies, workforce models, and payment approaches such as hub-and-spoke partnerships.¹

References

1. Davis E, Grossoehme DH, Ajayi T, et al. Pediatric home-based hospice and palliative care: a scoping review. BMC Palliat Care. 2026;25:198. doi:10.1186/s12904-026-02146-5

2. Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manage. 2017;53(2):171-177. doi:10.1016/j.jpainsymman.2016.08.020

3. Postier A, Chrastek J, Nugent S, Osenga K, Friedrichsdorf SJ. Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution. J Palliat Med. 2014;17(2):183-188. doi:10.1089/jpm.2013.0287