• Rachel S Deming, Emanuele Mazzola, Jeanne MacDonald, Simon Manning, Leah Beight, Erin R Currie, Monica H Wojcik, and Joanne Wolfe.
• Department of Psychosocial Oncology and Palliative Care (R.S.D., E.M., L.B., J.W.), Dana-Farber Cancer Institute, Boston, MA, USA. Electronic address: rsdeming@gmail.com.
• J Pain Symptom Manage. 2022 Nov 1; 64 (5): 486494486-494.

ContextIncreasingly, 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.ObjectivesTo describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year.MethodsChart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016 and 2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year.ResultsAmong 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital and/or 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.ConclusionsCCI 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.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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