Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)

Abstract

1.Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi).2.Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit. This was a retrospective medical record review of infant decedents who received PPC while hospitalized in a level III NICU at an academic children’s hospital in Alabama from 2009-2017. Demographic characteristics, timing of palliative care consultation, hospice enrollment, final resuscitation status, circumstances at time of death, and interventions received in the last 48 hours of life. Data were analyzed in SPSS using descriptive statistics and t-tests. The percentage of infants receiving PPC in the NICU increased over time from 7% in 2009 to 38% in 2017. Infant decedents (N=140) who received PPC in the NICU were mostly Caucasian (58%) and African American (39%), receiving Medicaid (84%), and had genetic (53%) and prematurity (34%) diagnoses. There were no statistically significant differences between racial or urban versus rural groups in the timing of PPC consultation during the NICU admission. Infants who lived over 1 hour away received PPC significantly later than infants living less than 1 hour away from the NICU (p= 0.03). There were no racial or rurality differences in PPC timing during hospitalization; however, traveling over an hour to the hospital was associated with a delay in receiving PPC.