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

Abstract

BackgroundVery 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.MethodsAn 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).ResultsThe 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.ConclusionOur 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.Electronic supplementary materialThe online version of this article (10.1186/s12887-018-1168-x) contains supplementary material, which is available to authorized users.

National Divergences in Perinatal Palliative Care Guidelines and Training in Tertiary NICUs

“…On the contrary, a subset of HCPs even thought there were guidelines available when in fact there were not. Aujoulat et al ( 67 ) similarly showed a subgroup of HCPs who were not aware of the protocols or standardized procedures regarding PnPC. This means that despite the implementation of a guideline, continued information and further training in PnPC within centers remains essential.…”

Belgian end‐of‐life care study did not include French‐speaking units

“…Furthermore, another representative study of those 11 French-speaking neonatal intensive care units, which had a very high response rate, was not taken into account. 2…”

“…We would like to point out that the authors wrongly described the study as a nationwide survey as it did not include the 11 centres in the French‐speaking part of the country. Furthermore, another representative study of those 11 French‐speaking neonatal intensive care units, which had a very high response rate, was not taken into account . This earlier study led to quite different results and conclusions, which could have broadened the discussion and revealed the subtle differences in the ethical and legal implications of the subject, as well as the conclusions drawn by Dombrecht et al…”

Nurses' attitudes toward caring for terminally ill neonates and their families in Iran: a cross-sectional study

“…One of these problems is related to the provision of advanced care for neonates with poor prognoses ( 1 ). Accordingly, one of these advanced care modalities is end-of-life care provided for terminally ill neonates ( 2 ). This type of care is considered standard practice in NICUs ( 3 ).…”