Pediatric End-of-Life Care in Rural America: A Systematic Review

Abstract

Background: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. Objective: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. Methods: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. Results: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. Conclusions: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.

Incremental cost analysis of pediatric hospice care in rural and urban Appalachia

“…First, previous studies were conducted on adult rural hospice populations, which are relatively well studied, 30 whereas hospice care for rural pediatric patients remains seriously underinvestigated. 16,31 Second, pediatric patients in rural areas use preventive services less often than their urban peers, 32 relying on care from emergency departments and more aggressive treatments. 9,32,33 However, it is significantly more expensive than preventive care.…”

“…Health care providers are also more willing to use aggressive and costly treatments to extend the child's life expectancy 15 . In addition, many rural areas lack pediatric hospice programs and pediatric specialists, 16,17 with hospice providers covering large service areas requiring long driving times, increasing the total costs of hospice care 7,18,19 …”

“…Although concurrent care is often expected to be more expensive than standard hospice care, several studies have shown that it may reduce the length of hospitalizations 21 in addition to personnel and other hospice costs, 22 dramatically reducing the overall costs of care. However, the question of whether enrollment in concurrent care in rural hospices in the Appalachian region can reduce the costs of care has never been addressed in the existing literature 16 …”

“…14 Health care providers are also more willing to use aggressive and costly treatments to extend the child's life expectancy. 15 In addition, many rural areas lack pediatric hospice programs and pediatric specialists, 16,17 with hospice providers covering large service areas requiring long driving times, increasing the total costs of hospice care. 7,18,19 Since the implementation of the Patient Protection & Affordable Care Act (ACA, Section 2302--pediatric concurrent hospice care), pediatric patients enrolled in Medicaid may receive 2 different types of hospice care: concurrent and standard hospice care.…”

“…However, the question of whether enrollment in concurrent care in rural hospices in the Appalachian region can reduce the costs of care has never been addressed in the existing literature. 16 Understanding the unique financial challenges of providing pediatric hospice care in Appalachia is especially important amid the ongoing rural health care crises which increase disparities in health outcomes between rural and urban areas. 23 Identifying a model of end-of-life care that could provide health benefits while reducing the overall costs of care would contribute to improving health care in rural Appalachia.…”