A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol

Laure Dombrecht, Kim Beernaert, Ellen Roets, Kenneth Chambaere, Filip Cools, Linde Goossens, Gunnar Naulaers, Luc De Catte, Joachim Cohen, Luc Deliens, NICU consortium

Research output: Contribution to journalArticle

2 Citations (Scopus)


BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation - 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap.

METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained.

DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.

Original languageEnglish
Article number260
Pages (from-to)260
Number of pages1
JournalBMC Pediatrics
Issue number1
Publication statusPublished - 3 Aug 2018


  • End-of-life decisions
  • Mortality follow-back survey
  • Neonates
  • Population-based
  • Stillbirths
  • Termination of pregnancy

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