A growing number of newborns with a chronic critical illness (CCI) make it out of the neonatal intensive care units (NICUs). Little was known about the level of care provided to the families upon discharge, as well as about the primary and specialized palliative care they get. For a study, researchers sought to outline the level of main and specialized palliative care that NICU CCI babies received at discharge and after a year.
Chart abstraction of CCI newborns at three academic facilities released with medical technology at ≥42 weeks corrected gestational age between 2016 and 2019, including demographics, care intensity, and main and specialist palliative care received at discharge and one year.
The median NICU stays for 273 babies was 45 days (IQR 23–92). Prematurity (28.2%), congenital and/or genetic disorders (68.5%), and birth-related events (3.3%) were the main diagnosis. The most prevalent medical procedures upon discharge included tracheostomies (24.5%) and surgical feeding tubes (75.1%). Infants were treated with a median of 6 [IQR 4-9] drugs and a median of 8 [IQR 7-9]; healthcareprofessionals observed them. About 91.4% of people kept using one or more technology, a comparable number of drugs, and specialized doctors after a year. Nearly all NICU families had social work assistance, 78.8% had chaplaincy, 53.8% had child life, and 19.8% had specialized palliative care advice. However, only 13.2% of patients were receiving palliative care after a year.
At discharge and throughout the first year after birth, CCI newborns get comprehensive medical treatment that includes a variety of medical technology, drugs, and expert follow-up. However, the infants and their families may have limited access to specialized palliative care in the short and long terms. Therefore, the majority get primary interprofessional palliative care in the NICU.