Survival and long-term outcomes of children who survived after End-of-Life decisions in NICU
Friday, October 13, 2023
8:00 AM – 9:15 AM ET
Location: Bristol (Third Floor)
Background: The majority of deaths in neonatal intensive care units (NICU) follow end-of-life decision-making. Most discussions regarding withdrawal or withholding of life-sustaining interventions (WWLST) occur when infants are dependent on life-sustaining technology (LST). The objective of this study was to examine the prevalence of WWLST discussions, to investigate decisions and to examine survival and long-term outcomes of children after WWLST.
Methods: The charts of 6-years of NICU admissions were reviewed for presence of WWLST discussions or decisions, as well as the long-term outcome at 2-years of all children who survived. The decisions taken were categorized in 4 groups, using a modification of the Verhagen classification.
Results: WWLST discussions occurred for 266 of 5251 infants admitted to the NICU: 151 were term and 115 were preterm infants. In more than 2/3 of these discussions, discussions related concerns about the future, mainly based on severe neurological prognosis. Among all discussions, 164 led to a WWLST decision, 130 of which were followed by the infant’s death. 34 children survived to discharge despite WWLST (20 preterms and 14 males). Among them, 10 died before 2 years old and 11 require frequent medical follow-up. Major functional limitations were common amongst survivors, but eight were classified as functionally normal or with mild to moderate functional limitations.
Conclusions: Many discussions do not result in a WWLST decision. When a decision is taken, survival may occur, which is usually associated with poor long-term outcomes, but this is not universal. Discussions about WWLST should recognize these possibilities.
Valerie Biran, MD, PhD – Neonatal Intensive Care Unit – Robert Debré Hospital; Annie Janvier – Division of Neonatology – Sainte Justine Hospital; Keith Barrington – Division of Neonatology – Sainte Justine Hospital