Abstract
BackgroundDeciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs.MethodsWe conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven.ResultsThe main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that justice as resource allocation should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress.ConclusionsParticipants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions.Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/KU Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018.
Highlights
The World Health Organization (WHO) defines extremely preterm infants (EPIs) as infants born before 28 completed weeks of gestation compared to the 40 weeks of a normal pregnancy [1]
As we were interested in how Belgian neonatologists use ethical principles in their clinical–ethical decisionmaking regarding EPI resuscitation, we used a qualitative design supported by the Grounded Theory approach [27, 28]
Ethical principles Based on participants’ accounts of past cases, we identified two main ethical principles guiding participants’ decision-making for resuscitation at birth of EPIs: EPIs’ best interest and respect for parents’ autonomy
Summary
The World Health Organization (WHO) defines extremely preterm infants (EPIs) as infants born before 28 completed weeks of gestation compared to the 40 weeks of a normal pregnancy [1]. Other factors other than the GA contribute determining the individual probability of survival with good outcomes, e.g. clinical conditions at birth, administration of prenatal steroids, technological equipment and pharmaceuticals available at the hospital, and the occurrence of postnatal events (e.g. intracranial hemorrhage) [4, 6, 8]. These figures are in the same range for Flanders where recently the mortality and neurocognitive morbidity was reported [9]. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs
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