56 Survival and Long-term Outcomes of Children who Survived after End-of-Life Decisions in the NICU

Abstract

Abstract Background The majority of deaths in neonatal intensive care units (NICU) follow end-of-life decision-making. Most discussions regarding the withdrawal or withholding of life-sustaining interventions (WWLST) occur when infants are dependent on life-sustaining technology (LST) to stay alive. These children are often expected to die within a relatively short time if LST is withheld or withdrawn. The objective of this study was to investigate long-term outcomes of babies who survive despite WWLST decision-making. Objectives The goals of this study were to: 1) examine the prevalence of WWLST discussions with parents in a level 3 NICU; 2) investigate decisions associated with WWLST discussions; and 3) examine survival and long-term outcomes of children when life-saving interventions (LSI) are withheld or withdrawn. Design/Methods In 2020 and 2021, the charts of all 6 years of level 3 unit NICU admissions were reviewed for presence of WWLST discussions or decisions, as well as the functional long-term outcome at 2 years for all children who survived. The decisions taken at the time of the WWLST discussions were categorized into 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 two-thirds of these discussions, themes related to concerns about the future and were 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. Of 34 children who survived to discharge despite WWLST, 20 were preterms and 14 were males. Among these, 10 died before 2 years of age and 11 require frequent medical follow-up. Major functional limitations were common among survivors, but eight were classified as functionally normal or as having mild to moderate functional limitations. Conclusion Many discussions about WWLST do not result in a decision to withhold or withdraw life-saving interventions. When a WWLST decision is taken, survival may occur, which is usually associated with poor long-term outcomes, but this trajectory is not universal. Discussions about WWLST should recognize all possibilities.