Belgian End-Of-Life Care Study Did Not Include French-speaking Units

Friedel, Marie [UCL] Renard, Marleen [UZLeuven] Devlieger, Hugo [UZLeuven] Verellen, Gaston [UCL]

Dear Editors, We have read with interest the article by Dombrecht et al. (2019) published in your journal in its edition of March 2019. The authors address a sensitive topic, namely the reported attitudes of neonatologists and neonatal nurses in the Flanders region of Belgium regarding complex issues around active end-of-live (EOL) practices for foetuses and neonates facing life-limiting conditions. As the authors correctly state in the abstract and full text, the survey was conducted among 8 centres located in the Flemish Community and did not include the 11 centres of the French Community of Belgium. This means that the title which presents the study as “a nationwide survey” is not correct. Furthermore, another representative study conducted collaboratively by those 11 French speaking neonatal intensive care units, with a very high response rate, was not taken into account (Aujoulat et al. 2018). Yet, this study led to quite different results and conclusions which could have broadened the discussion and nuanced the ethical and legal implications as well as the conclusions drawn by Dombrecht et al. (2019). Based on our clinical experience, we do acknowledge that EOL decisions in the perinatal period are complex, but that international guidelines and best practices regarding breaking bad news, involving parents in the decision-making process, dealing with uncertainty about prognosis, ensuring continuity of care by bereavement support, and offering supervision to teams might be helpful. In this respect, the absence of formal training in neonatal palliative care currently offered in Belgium is unfortunate (Arias et al., 2019). However, since 2014, despite some cultural or linguistic differences, the Belgian Paediatric Palliative Care group (www.bppc.be) brings together nurses, physicians, psychologists and social workers from all regions in Belgium, to discuss and elaborate national guidelines regarding paediatric palliative care. This may pave the way for future, hoped for, fruitful collaborations also in the field of neonatology, not only across Belgian teams but also at international level, where the complex psychosocial, medical, ethical and legal issues surrounding decisions and practices around EOL care to neonates are the object of much debate and controversies. Marie Friedel, paediatric nurse; Dr Marleen Renard, paediatrician, Prof. Hugo Devlieger neonatologist; Prof. Gaston Verellen, neonatologist. References: Arias N, Garralda E, Rhee JY. et al. EAPC Atlas of Palliative Care in Europe 2019. Vilvoorde: EAPC Press, 2019. Aujoulat I, Henrard S, Charon A, Johansson AB, Langhendries JP, Mostaert A, Vermeylen D, Verellen G; 11 neonatal intensive care units in the Wallonia-Brussels Federation. End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium. BMC Pediatr. 2018; 26;18(1):206. doi: 10.1186/s12887-018-1168-x. Dombrecht L, Deliens L, Chambaere K, Baes S, Cools F, Goossens L, Naulaers G, Roets E, Piette V, Cohen J, Beernaert K; NICU consortium. Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey. Acta Paediatr. 2019. doi: 10.1111/apa.14797. Page