Variability in Palliative Care and Discharge Disposition in a National Sample of Pediatric Patients: A Retrospective Study

Abstract

This study investigates factors associated with palliative care consultation (PCC) and discharge disposition among pediatric patients who were declared death by neurological criteria (DNC). It hypothesizes PCC is associated with longer stays and chronic conditions. It aims to identify disparities in PCC rates and factors associated with the continuation of technological (somatic) support after brain death, which is costly and indicates difficulties families face in accepting brain death diagnoses. This retrospective observational study used the Pediatric Health Information System database and included patients ≤21 years old who were declared DNC between 2015 and 2022; demographics, diagnoses, discharge disposition, and PCC status were extracted. Generalized linear mixed-effects models were developed. Of 3,169 patients from 44 hospitals, 14.2% (n = 449) received PCC, and 3.1% (n = 97) were discharged as “not expired,” indicating continued technological support after brain death, with transfer to a location other than the pediatric intensive care unit. PCC rates varied from 0 to 80.0% (median 11.0%); the percentage “not expired” ranged from 0 to 33% (median 0.4%). PCC was associated with longer stay in days (adjusted odds ratio [aOR] = 1.01, p < 0.001) and malignant condition (aOR = 2.69, p < 0.001), and negatively associated with trauma (aOR = 0.59, p < 0.001). Discharge as “not expired” was twice as likely in trauma than nontrauma patients (aOR = 2.00, p = 0.006), and less likely in Black than White patients (aOR = 0.34, p = 0.002). PCC rates were lower in trauma patients and higher in malignant conditions and longer stays. White patients had higher rates of discharge as “not expired,” indicating continued ventilatory support at family request. Further research is needed to integrate palliative care and mitigate disparities.

Keywords

palliative care - terminal care - brain death - patient discharge - pediatrics

Publication History

Received: 04 April 2024

Accepted: 06 October 2024

Article published online:
04 December 2024

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