Care Intensity and Palliative Care in Chronically Critically Ill Infants

Title

Care Intensity and Palliative Care in Chronically Critically Ill Infants

Creator

Deming Rachel S; Mazzola E; MacDonald J; Manning S; Beight L; Currie ER; Wojcik MH; Wolfe J

Publisher

Journal of Pain and Symptom Management

Date

2022

Subject

Palliative care; Neonatal Intensive Care Unit; Infants; Chronic critical illness

Description

ABSTRACT Context Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following discharge. Objectives To describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year. Methods Chart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016-2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year. Results Among 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital/genetic conditions (68.5%), prematurity (28.2%), and birth events (3.3%). At discharge, surgical feeding tubes (75.1%) and tracheostomies (24.5%) were the most common technologies. Infants received a median of 6 [IQR 4-9] medications and were followed by a median of 8 [IQR 7-9] providers. At one year, 91.4% continued with one or more technologies, similar numbers of medications and specialty providers. In the NICU, nearly all families had social work involvement, 78.8% had chaplaincy and 53.8% child life; 19.8% received specialty palliative care consultation. At one year, only 13.2% were followed by palliative care. Conclusions CCI infants receive intensive medical care including multiple medical technologies, medications, and specialty follow up at discharge and remain complex at one year of life. Most receive primary interprofessional palliative care in the NICU, however these infants and their families may have limited access to specialty palliative care in the short- and long-term.

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

September 2022 List

Collection

Citation

Deming Rachel S; Mazzola E; MacDonald J; Manning S; Beight L; Currie ER; Wojcik MH; Wolfe J, “Care Intensity and Palliative Care in Chronically Critically Ill Infants,” Pediatric Palliative Care Library, accessed April 25, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18271.