Pediatric Palliative Care for Patients Who Undergo Tracheostomy Placement: A Descriptive Study

Pediatric palliative care (PPC) is specialized medical care for chronically critically ill children (CCIC), which focuses on improving quality of life, defining goals of care, and supporting decision-making. With advancements in management and technologies, including tracheostomy placement, CCIC are living longer. Access to PPC services remains essential.

A retrospective chart review was conducted for patients who underwent tracheostomy placement at a single institution between January 2017 and December 2019. Demographic and baseline medical characteristics were recorded. Attention was given to psychosocial determinants of health and PPC involvement. Based on the timing of PPC consultation, patients were classified into three mutually exclusive groups: PPC prior to tracheostomy, PPC after tracheostomy, and no PPC. Differences between groups were tested using omnibus Kruskal-Wallis, chi-square, and Fisher's exact tests.

PPC was provided for 40 of 99 patients (40%) who underwent tracheostomy placement. Patients who self-identified as Black comprised the largest racial group (55 of 99; 55%). Black patients also represented the largest proportion of those receiving PPC after tracheostomy placement and those who received no PPC (11 of 18; 61% and 36 of 59; 61%, respectively). Patients with neurologic indications for tracheostomy (15 of 29; 52%), complex congenital heart disease (12 of 14; 85%), who were older at time of tracheostomy placement (median 67 months, IQR 12-177; p = 0.004), and who had prior hospitalizations (median of two prior hospitalizations [IQR 0-6] p = 0.008) had higher portions of PPC. Not all patients who died within five years of tracheostomy placement received PPC; patients who died had higher proportions of PPC (20 of 30; 66%).

Initial trends suggest that patients with comorbidities in several organ systems, who were older at time of tracheostomy placement, and those who had multiple encounters with the healthcare system prior to tracheostomy placement had higher proportions of PPC.