The first Belgian Perinatal Palliative Care Conference took place in Brussels on November 13, 2015, which was organised by members of two educational programmes on Paediatric Palliative Care:
Dr Nadine Francotte, paediatric haematologist-oncologist at CHC Espérance Liège, president of FAPS; Dr Christine Devalck, paediatric haematologist-oncologist at Hôpital Universitaire des Enfants, Reine Fabiola (HUDERF, Brussels), treasurer at FAPS and Marion Faingnaert, nurse and secretary at FAPS Association and Marie Friedel, paediatric nurse, Lecturer at Haute Ecole Vinci, Research Assistant at Institute of Health and Society (IRSS) at Université catholique de Louvain (UCL) and co-coordinator of the Interuniversity Certificate on Paediatric Palliative Care at UCL.
There were 200 participants at the conference from all regions of Belgium, many of them nurses, along with physicians and psychologists.
The conference offered oral presentations from interdisciplinary perspectives. Neonatologists, psychologists, psychiatrist, ethicists and neonatal nurses shared their clinical experiences.
A joined presentation from Dr Anne-Britt Johannsson, head of the neonatal centre and Dr Marie-Paule Durieux, paediatric psychiatrist, both at Hôpital universitaire des enfants Reine Fabiola (HUDERF) highlighted the complexity of making palliative care decisions for very preterm babies and the intertwining of eros and thanatos in those situations.
Pr. Isabelle Aujoulat, Professor at the Institute of Heath and Society (IRSS) at the Catholic University of Louvain (UCL) made public for the first time the results of a national survey funded by Foundation Houtman-ONE, conducted by Prs. Gaston Verellen and Marc Vainsel and responsible members of the neonatal centres, on end-of life decisions and practices in eleven Belgian neonatal centres. Results showed that the majority of respondents did not request new legislation to frame end-of life decisions in a perinatal context, but required practical guidelines to better guide teams in complex decisions.
Pr. Jean-Paul Langhendries, paediatrician from CHC, St Vincent, Rocourt (Liège) presented the ethical challenge arising in perinatal centers, specifically: What clinical interventions should be offered to newborns with serious brain injuries? He presented the Dutch Groningen protocol and reflected on the difficult balance between avoiding a eugenic risk, taking the responsibility in end-of life decisions, offering family-centred care, and advocating for the child’s best interest.
Dr Pierre Bétrémieux, paediatrician and specialist in perinatology from Centre Hospitalier Universitaire (CHU) in Rennes discussed the French experience of palliative care by describing the care offered to those parents who have made the choice to continue pregnancy even after an antenatal diagnosis with poor prognosis and expected infant death. Furthermore, facilitating ongoing contact between parents and babies until the infant’s death may have better outcomes on parental grief as opposed to limiting contact between parents and babies with life-limiting conditions.
Pr. Marcel-Louis Viallard, responsible of the mobile palliative medicine team at Hôpital Necker-enfants malades and professor at University Descartes in Paris presented with his very appreciated humour the uncertainty as a fundamental concept in perinatal palliative care. He invited us to reflect on how we can offer the best quality of care in the phase of uncertainty as experienced not only by families but also by professionals.
The clinical and personal experiences from the perspective of two paediatric nurses, Mrs Julie Mortiaux from the neonatal centre at Hôpital universitaire des enfants Reine Fabiola (Huderf, Brussels) and Mrs Anne-Sophie de Burlet from Cliniques universitaires St Luc (Brussels), reaffirmed the necessity to create tools and rituals to better accompany families, in a personalised and human way. As the child’s death approaches, there is a lot that nurses can do, such as the creation of a memory box including footprints, photos and little hats. A team reflection, which led to creating practical guidelines for end-of-life decisions, including advanced care planning was presented.
Finally, Mrs Marie Kirsch, psychologist at Cliniques universitaires St Luc (Brussels) illustrated through her clinical practice the importance and the multiple facets of the liaison concept, which is about listening to the personal experiences of families and the meaning-making process through the step-by-step and careful art of human accompanying.
Throughout the conference day, an exhibition of photographs entitled “Just after” created by a bereaved father, Jerome Buyle, showed the daily life in a perinatal centre. The photographs provided the perspective of parents. Jerome confided: “the very short lifetime of our little girl was a sad story, but also a beautiful story.” (Learn more at www.justeapres.info)
Through participant satisfaction surveys, participants provided very positive feedback and encouragement for continued reflection and discussion about paediatric palliative care.
This report was provided by Marie Friedel with acknowledgements to Shelagh McConnell, RN, PhD for the English review