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Original research
End-of-life decisions in neonates and infants: a nationwide mortality follow-back survey
  1. Laure Dombrecht1,2,
  2. Kim Beernaert1,2,
  3. Kenneth Chambaere1,2,
  4. Filip Cools3,
  5. Linde Goossens4,
  6. Gunnar Naulaers5,
  7. Luc Cornette6,
  8. Sabrina Laroche7,
  9. Claire Theyskens8,
  10. Christine Vandeputte9,
  11. Hilde Van de Broek10,
  12. Joachim Cohen1 and
  13. Luc Deliens1,2
  1. 1 End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium
  2. 2 Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
  3. 3 Department of Neonatology, Universitair Ziekenhuis Brussel, Brussel, Belgium
  4. 4 Department of Neonatology, University Hospital Ghent, Gent, Belgium
  5. 5 Department of Development and Regeneration, KU Leuven, Leuven, Belgium
  6. 6 Department of Neonatology, AZ Sint-Jan Brugge-Oostende AV, Brugge, Belgium
  7. 7 Department of Neonatology, University Hospital Antwerp, Edegem, Belgium
  8. 8 Department of Neonatology, Ziekenhuis Oost-Limburg, Genk, Limburg, Belgium
  9. 9 Department of Neonatology, GZA Ziekenhuizen Campus Sint-Augustinus, Wilrijk, Belgium
  10. 10 Department of Neonatology, ZNA Middelheim, Antwerpen, Antwerpen, Belgium
  1. Correspondence to Dr Laure Dombrecht, End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium; laure.dombrecht{at}vub.be

Abstract

Objectives Neonatology has undergone important clinical and legal changes; however, the implications for end-of-life decision-making in seriously ill neonates to date are unknown. Our aim was to examine changes in prevalence and characteristics of end-of-life decisions (ELDs) in neonatology.

Methods We performed a nationwide mortality follow-back survey in August 1999 to July 2000 and September 2016 to December 2017 in Flanders, Belgium. Data were linked to information from death certificates. For each death under the age of 1, physicians were asked to complete an anonymous questionnaire about which ELDs were made preceding death.

Results The response rate was 87% in 1999–2000 (253/292) and 83% in 2016–2017 (229/276). The proportion of deaths of infants born before 26 weeks’ gestation was increased (14% vs 34%, p=0.001). Prevalence of ELDs remained stable at 60%, with non-treatment decisions occurring in about 35% of all deaths. Use of medication with an explicit life-shortening intention was prevalent in 7%–10% of all deaths. In early neonatal death (<7 days old) medication with an explicit life-shortening intention decreased from 12% to 6%, in late neonatal death (7–27 days old), it increased from 0% to 26%, and in postneonatal death (>27 days old), it increased from 2% to 10%.

Conclusions Over a timespan of 17 year, the prevalence of neonatal ELDs has remained stable. A substantial number of deaths was preceded by the intentionally hastening of death by administrating medication. While surveying solely the physician perspective in this paper, there is a need for an open multidisciplinary debate, including, for example, nursing staff and family members, based on clinical as well as ethical and jurisdictional reflections to discuss the need for international guidelines.

  • end of life care
  • paediatrics

Data availability statement

No data are available. Due to privacy issues our data cannot be made openly accessible.

https://doi.org/10.1136/bmjspcare-2021-003357

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    Data availability statement

    No data are available. Due to privacy issues our data cannot be made openly accessible.

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    Footnotes

    • Contributors All listed authors contributed to the writing and/or revision of the article and approved the final version of the manuscript. LD: literature search, conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript, is guarantor of this publication. 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: conceptualisation and study design, data collection, data analysis, data interpretation, revision of manuscript. LG: conceptualisation and study design, data collection, data analysis, data interpretation, revision of manuscript. GN: conceptualisation and study design, data collection, data analysis, data interpretation, revision of manuscript. LC: data collection, data interpretation, revision of manuscript. SL: data collection, data interpretation, revision of manuscript. CT: data collection, data interpretation, revision of manuscript. CV: data collection, data interpretation, revision of manuscript. HVdB: data collection, data interpretation, revision of manuscript. JC: funding acquisition, conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript. LD: funding acquisition, conceptualisation and study design, data collection, data analysis, data interpretation, writing of the manuscript. JC and LD contibuted as last authors.

    • Funding This study is funded by the Research Foundation Flanders (FWO; G041716N to JC) and the special research fund of Ghent University (BOF; 01J06915 to Luc Deliens). KB is Postdoctoral Fellow of the Research Foundation Flanders (FWO).

    • Disclaimer The study sponsors had no role in study design, collection, analysis and interpretation of data, the writing of the report and the decision to submit the manuscript for publication.

    • Competing interests None declared.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.