Patterns of Pediatric Palliative and End-of-Life Care in Neonatal Intensive Care Patients in the Southern U.S.

Context: Despite high rates of mortality among infants in the Southern U.S., little is known about the timing of pediatric palliative care (PPC), the intensity of end-of-life care, and whether there are differences among sociodemographic characteristics.

Objectives: To describe PPC patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC.

Methods: Medical record abstraction of infant decedents who received PPC consultation in two NICUs (in Alabama and Mississippi) from 2009 to 2017 (n = 195) including clinical characteristics, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life.

Results: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (P = 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (P = 0.04).

Conclusion: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.