Choiceless options: when hospital-based services represent the only palliative care offering

• Published in: Pediatric research 2022-03, Vol.91 (4), p.1001-1003
• Main Authors: Weaver, Meaghann S., Lindley, Lisa C.
• Format: Article
• Language: English
• Subjects: Child; Family; Home Care Services; Hospice Care; Hospices; Humans; Medicine; Medicine & Public Health; Palliative Care; Pediatric Surgery; Pediatrics; Perspective; Workforce
• ISSN: 0031-3998; 1530-0447
• DOI: 10.1038/s41390-021-01909-5

Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only viable choice due to geographic gaps in service coverage. Gaps exist not only in access to these key services but also in service quality without national pediatric service standards. While families from rural regions may express a goal to be home with their child for relational and communal care purposes the current setting of services may limit the feasibility of home-based care. Several potential pediatric systems changes (workforce, finance, policy) have the capacity to create and sustain a care model that allows a child with complex, chronic, or life-limiting diagnoses to experience a home other than the hospital. The existence of community-based pediatric palliative and pediatric home-based hospice services with a sustained workforce and high-quality national standard for children would bolster the ultimate congruence of a family’s preference with actual care choices. Impact Families of children with life-limiting diagnoses may express a preference to be home together. Disparities in access to community-based pediatric palliative care and hospice exist for children, particularly in rural regions. These gaps may translate into families experiencing hospital-based settings as the only feasible care model which may result in care escalations and medicalization. Expansion of the community-based workforce and development of pediatric-specific standards for key palliative services would increase home-based care options for families. This paper acknowledges the pediatric palliative and hospice availability crisis in rural regions and urges for improved access to high-quality, community-based services for children.