Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Title

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Creator

Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C

Publisher

Journal of Pediatric Intensive Care

Date

2023

Subject

intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis

Description

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.

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

Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C, “Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease,” Pediatric Palliative Care Library, accessed March 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19023.