Cause of death and making end-of-life decisions in preterm infants has not changed over time: A mortality follow-back survey.

Aim: This study aimed to evaluate changes over time in cause of death and making end-of-life decisions in preterm infants.

Methods: A follow-back survey was conducted of all preterm infants who died between September 2016 and December 2017 in Flanders and Brussels, Belgium. Cause of death was obtained from the death certificate and information on end-of-life decisions (ELDs) through an anonymous questionnaire of the certifying physician. Results were compared with a previous study performed between August 1999 and July 2000.

Results: In the cohort 1999-2000 and 2016-2017, respectively, 150 and 135 deaths were included. A significantly higher proportion of infants born before 26 weeks of gestation was found in the 2016-2017 cohort (53% vs. 24% in 1999-2000, p 0.001). Extreme immaturity (26 weeks) remained the most prevalent cause with a significant increase in the 2016-2017 cohort (48% vs. 28% in 1999-2000, p 0.001). The overall prevalence of ELDs was similar across study periods (61%). Non-treatment decisions remained the most common ELD (36% and 37%).

Conclusion: Infants born at the limits of viability have become more prevalent among infant deaths, possibly due to a change in attitude towards periviable births. Neither the process of making ELDs nor the cause of death has changed over time.