Clinical question: What are the characteristics of children who died in children’s hospitals while receiving palliative care (PC) compared to those who did not?
Background: Approximately 44,000 children die annually in hospitals in the U.S. Since the American Academy of Pediatrics (AAP) released a statement in August 2000 that presented an integrated model for providing PC to children with life-threatening conditions, pediatric PC programs have increased steadily in number. Children who receive PC services are commonly afflicted by genetic/congenital disorders, neuromuscular disorders, and cancer diagnoses. Although it is estimated that 6,320 people under the age of 24 received PC services in 2010, little data exist comparing pediatric inpatients receiving PC and those who do not.
Study design: Multicenter retrospective cohort study.
Setting: More than 40 freestanding children’s hospitals.
Synopsis: Using the Pediatric Health Information System (PHIS) database, which collects administrative and clinical data from more than 40 freestanding children’s hospitals belonging to the Children’s Hospital Association, researchers analyzed the characteristics of children under the age of 18 who died in the hospital more than five days after admission from 2001 to 2011. They extracted demographic data and categorized patients using major diagnostic categories (MDC) based on major organ system or etiology of disease. Identification of patients receiving PC services was by ICD-9 codes, and utilization of medications and procedures was identified by clinical transaction codes (CTC) and ICD-9 codes. The unit billing the last hospital day determined location of death.
Of the 24,342 children studied, only 3.8% received PC services based on coding. Patients less likely to receive PC services included black children (2.3%), those with circulatory diseases (2.8%), and those with neonatal diseases (1.9%). Children who did receive PC services had a significantly lower median length of stay (17 vs. 21 days), average daily charges ($9,348 vs. $11,806), received significantly fewer interventions (mechanical ventilation, invasive monitoring, surgical procedures), and died less frequently in an ICU setting (60% vs. 88%). PC services disproportionately altered the care of children with lymphatic/hematopoietic diseases, significantly decreasing use of mechanical ventilation (75% to 22%) and death in an ICU setting (66% to 21%).
Bottom line: Provision of PC services to children dying in children’s hospitals remains low. It is even lower for children with certain racial backgrounds and disease processes. When provided, PC services reduce length of stay, average daily charges, invasive procedures, and death in an ICU setting.
Citation: Keele L, Keenan HT, Sheetz J. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics. 2013;132(1):72-78.
Reviewed by Pediatric Editor Weijen Chang, MD, SFHM, FAAP, associate clinical professor of medicine and pediatrics at the University of California at San Diego School of Medicine, and a hospitalist at both UCSD Medical Center and Rady Children’s Hospital.