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

Title

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

Creator

Currie ER; Wolfe J; Boss R; Johnston EE; Paine C; Perna SJ; Buckingham S; KcKillip KM; Li P; Dionne-Odom JN; Ejem D; Morvant A; Nichols C; Bakitas MA

Publisher

Journal of Pain and Symptom Management

Date

2023

Subject

Terminal Care; Infant Newborn; end-of-life care; pediatric palliative care; Neonatal intensive care; intensity of care

Description

OBJECTIVE: Describe pediatric palliative care (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. DESIGN: Retrospective cohort analysis SETTING/ SUBJECTS: Infants who received PPC consultation in the NICU before death in two NICUs (in Alabama and Mississippi) from 2009-2017 (n=195). MEASUREMENTS: Medical record abstraction included: clinical characteristics of NICU infants, 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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

April List 2023

Collection

Citation

Currie ER; Wolfe J; Boss R; Johnston EE; Paine C; Perna SJ; Buckingham S; KcKillip KM; Li P; Dionne-Odom JN; Ejem D; Morvant A; Nichols C; Bakitas MA, “Patterns of Pediatric Palliative and End-Of-Life Care in Neonatal Intensive Care Patients in the Southern U.S,” Pediatric Palliative Care Library, accessed March 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19018.