432 - Survival and long-term outcomes of children who survived after End-of-Life decisions in NICU

The majority of deaths in neonatal intensive care units (NICU) follow end-of-life decision-making. Most discussions regarding withdraw or withhold life-sustaining interventions (WWLST) occur when infants are dependent on life-sustaining technology (LST) to stay alive and are expected to die within a relatively short time if LST are withheld or withdrawn. However, clinicians can be poor at predicting death.



Objective:

To investigate long-term outcomes of babies who survive despite life-and-death discussions with families and a decision to WWLST.

Design/Methods:

All the charts of 6-years of admissions in a large level 3 French NICU were reviewed for the presence of WWLST discussions and decisions. Functional long-term outcome at 2-years was investigated for all children who survived. The main factors influencing decisions were examined. The decisions taken at the time of the WWLST discussions that ldea to death were categorized in 4 groups, using a modification of the Verhagen classification.

Results:

Over 6 years, 219 of the 5251 neonates admitted to the NICU died before discharge: 59% followed WWLST and 41% died while receiving LST.

WWLST discussions occurred for 266 of 5251 infants: 151 were term (49% had HIE; 29% non-CNS congenital malformations and the 22% remaining had neurological diseases other than HIE) and 115 were preterm (57% had brain injuries, 21% congenital malformations, 18% late-onset sepsis or necrotizing enterocolitis and 4% respiratory failure). In more than 2/3 of these discussions, concerns about the future were based on severe neurological damage. Among all discussions, 164 led to a WWLST decision (70 were physiologically unstable), 130 of which were followed by the infant’s death.

34 children survived to discharge despite WWLST (20 were preterms and 14 were males). Among them, 10 died before 2 years old and 11 require frequent medical follow-up. Major functional limitations were common amongst survivors, but 8/34 were classified as functionally normal or with mild to moderate functional limitations.

Conclusion(s):

Many discussions about WWLST do not result in a decision to withhold or withdraw interventions. 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.