Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families

Abstract

Up to 40% of patients cared for by pediatric palliative care teams have severe neurologic impairment (SNI). Children with SNI have congenital/chromosomal, central nervous system static or progressive conditions that result in lifelong cognitive disabilities and developmental delay. 1 These children often have complex care coordination and symptom management needs. Many children with SNI receive care from multiple subspecialists at tertiary pediatric hospitals, home nursing care, and developmental services through school or community programs. Palliative care teams can have a large impact through the ways they support these patients and families psychosocially, symptomatically, spiritually, and emotionally. 1