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Letter
End-of-life decisions in neonates and infants: a population-level mortality follow-back study
  1. Laure Dombrecht1,2,
  2. Kim Beernaert1,2,
  3. Kenneth Chambaere1,2,
  4. Filip Cools3,
  5. Linde Goossens4,
  6. Gunnar Naulaers5,
  7. Joachim Cohen1,
  8. Luc Deliens1,2
  9. The NICU consortium
    1. 1 End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel (VUB), Ghent, Belgium
    2. 2 Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
    3. 3 Neonatology, UZ Brussel, Brussels, Belgium
    4. 4 Department of Neonatology, University Hospital Ghent, Ghent, Belgium
    5. 5 Neonatology, University Hospitals Leuven, Leuven, Belgium
    1. Correspondence to Dr Laure Dombrecht, End-of-Life Care Research Group, Ghent University, Ghent 9000, Belgium; laure.dombrecht{at}ugent.be

    https://doi.org/10.1136/archdischild-2021-322108

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      To the editor

      Critically ill neonates present clinical and ethical challenges. The deaths of these infants are often preceded by possibly life-shortening end-of-life decisions (ELD), including non-treatment decisions or pain and/or symptom relief medication. Recent empirical information about this practice is scarce.

      We performed a nationwide mortality follow-back survey for all deaths under the age of 1 between September 2016 and December 2017 in Flanders, Belgium. For all death cases identified through death certificates, treating physicians were sent an anonymous questionnaire about which ELDs were made. Details of the method were published elsewhere.1

      Response rate was 83% (229/276). In 61% of all deceased infants, an ELD preceded death (table 1). Non-treatment decisions including withholding (12%) and withdrawing treatment (25%) are most prevalent (37%). Drugs are administered in 24% of cases, including medication with a possible (14%) and explicit life-shortening intention (10%).

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      Table 1

      Prevalence of end-of-life decisions (ELDs) …

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      Footnotes

      • Collaborators The NICU consortium consisting of Filip Cools, Linde Goossens, Gunnar Naulaers, Luc Cornette, Sabine Laroche, Claire Theyskens, Christine Vandeputte and Hilde Van de Broek.

      • Contributors LDo: literature search, conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript. KB: supervision of the project, literature search, conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript. KC: conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript. FC, LG, GN: conceptualisation and study design, data collection, data analysis, data interpretation, revision of manuscript. JC, LDe: funding acquisition, conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript. JC and LDe are last joint authors.

      • Funding This study was funded by Fonds Wetenschappelijk Onderzoek (G041716N) and Bijzonder Onderzoeksfonds (01J06915).

      • Competing interests None declared.

      • Provenance and peer review Not commissioned; internally peer reviewed.