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Multicenter Study
. 2018 Jun 26;18(1):206.
doi: 10.1186/s12887-018-1168-x.

End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium

Isabelle Aujoulat  1 , Séverine Henrard  2 , Anne Charon  3 , Anne-Britt Johansson  4 , Jean-Paul Langhendries  5 , Anne Mostaert  6 , Danièle Vermeylen  7 , Gaston Verellen  8 ; 11 neonatal intensive care units in the Wallonia-Brussels Federation
Collaborators, Affiliations
Multicenter Study

End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium

Isabelle Aujoulat et al. BMC Pediatr. .

Abstract

Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units.

Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58).

Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices.

Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.

Keywords: Belgium; End-of-life; NICU; Preterm birth; Survey.

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Conflict of interest statement

Ethics approval and consent to participate

Advice was sought from the Ethics Committee of Université Catholique de Louvain and Cliniques Universitaires Saint-Luc. Following their advice, ethical approval and consent to participate were deemed unnecessary for this study. Indeed, our study did not fall within the scope of the Belgian Law of 7 May 2004 on Human Experiments, as it did not involve any patients nor patients’ relatives, nor did it require that patient data be shared with the researchers. However, the ethics committees of the 11 participating neonatal care units were informed of the study by their respective representatives in the study.

Competing interests

The authors declare that they have no competing interests.

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