Timing of Palliative Care Consultation and End-of-Life Care Intensity in Pediatric Patients With Advanced Heart Disease: Single-Center, Retrospective Cohort Study, 2014–2022

Abstract

Objectives: Pediatric patients with advanced heart disease (AHD) often receive high intensity medical care at the end of life (EOL). In this study, we aimed to determine whether receipt and timing of pediatric palliative care (PPC) consultation was associated with EOL care intensity of pediatric patients with AHD. Design: Retrospective cohort study. Setting: Single-center, 16-bed cardiac ICU (CICU) in a children’s hospital in the Mountain West. Patients: Pediatric patients (0–21 yr) with AHD treated in the CICU and subsequently died from January 2014 to December 2022. Interventions: None. Measurements and Main Results: We compared demographics, EOL characteristics and care, including medical interventions and mortality characteristics for patients by receipt and timing of PPC (i.e., ≥ 30 d from [early] or < 30 d of death [late]) using chi-square and Wilcoxon rank-sum tests. Of 218 patients, 78 (36%) did not receive PPC, 76 received early PPC (35%), and 64 received late PPC (29%). Compared with patients who did not receive PPC, patients receiving PPC had lower EOL care intensity (77% vs. 96%; p = 0.004) and fewer invasive interventions within 14 days of death (74% vs. 92%; p = 0.004). Receipt of PPC, vs. not, was associated with lower rate of death during cardiopulmonary resuscitation (12% vs. 32%; p = 0.004) and more use of comfort care (23% vs. 3%; p = 0.004). Among patients receiving PPC, early PPC was associated with fewer invasive interventions within 14 days of death (65% vs. 85%; p = 0.033). Care intensity was high for patients with early and late PPC. Conclusions: Early PPC was associated with fewer invasive interventions within 14 days of death, yet the care intensity at EOL remained high. With early PPC, families likely receive timely psychosocial and advance care planning support without significantly altering goals of care.