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  • Original Article
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Children’s outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit

Journal of Perinatology volume 37, pages 869–874 (2017)Cite this article

Subjects

Abstract

Objective:

We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children’s outcomes at 2-year follow-up.

Study Design:

In an explorative observational study, 61 cases were evaluated. The children involved had been discussed in such a structured way from 2009 to 2012 in a level III-D neonatal intensive care unit.

Results:

Decisions made were: full treatment (n=6), earlier restriction cancelled (n=3), treatment restriction (n=30) and palliative care (n=22). Parents of six children disagreed with the decision proposed. Thirteen (54%) of the 24 children who survived (39%) had moderate to severe neurological problems; 8 (33%) had additional sequelae; only one 2-year-old child was healthy.

Conclusions:

Decisions made varied to a large extent. The poor outcomes should be disseminated among decision makers. Future studies must explore new ways to improve outcome prediction, extend follow-up periods and consider what living with severe handicaps really means for both child and family.

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Acknowledgements

We acknowledge Jeroen Dudink and Liesbeth Smit for their valuable help in classifying the neurological problems at the time of SMMEDM and at 2-year follow-up, respectively. Ko Hagoort is thanked for editorial assistance.

Author information

Authors and Affiliations

  1. Division of Neonatology, Department of Pediatrics, Sophia Children’s Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands

    J C de Boer, M Williams, M van Dijk, I Reiss & J Sol

  2. Department of Pediatrics, Sophia Children’s Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands

    L Gennissen

  3. Intensive Care and Department of Pediatric Surgery, Sophia Children’s Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands

    M van Dijk, D Tibboel & S Naghib

  4. Department of Pediatrics, Groene Hart Hospital, Gouda, The Netherlands

    J Sol

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  1. J C de Boer
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  2. L Gennissen
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  4. M van Dijk
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  5. D Tibboel
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  7. S Naghib
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Corresponding author

Correspondence to J C de Boer.

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The authors declare no conflict of interest.

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Supplementary Information accompanies the paper on the Journal of Perinatology website

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de Boer, J., Gennissen, L., Williams, M. et al. Children’s outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit. J Perinatol 37, 869–874 (2017). https://doi.org/10.1038/jp.2017.30

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