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

Abstract

Objectives: Despite established principles of perinatal palliative care (PnPC), implementation into practice has shown inconsistencies. The aim of this study was to assess PnPC services, examine healthcare professionals (HCPs) awareness and availability of PnPC guidelines, and describe HCPs satisfaction with PC and guidelines.Material and Methods: A nationwide survey was conducted in Swiss tertiary NICUs between April-November 2019. Data were examined by descriptive statistics and linear regression models.Results: Overall response rate was 54% (65% physicians; 49% nurses; 72% psychosocial staff). Half of professionals (50%) received education in PC during their medical/nursing school, whereas 36% indicated they obtained further training in PnPC at their center. PnPC guidelines were available in 4/9 centers, with 68% HCPs being aware of the guideline. Professionals who had access to a PnPC team (P = 0.001) or were part of the nursing (P = 0.003) or psychosocial staff (P = 0.001) were more likely aware of having a guideline. Twenty-eight percent indicated being satisfied with PC in their center. Professionals with guideline awareness (P = 0.025), further training (P = 0.001), and access to a PnPC team (P < 0.001) were more likely to be satisfied, whereas HCPs with a nursing background (P < 0.001) were more likely to be dissatisfied. A majority expressed the need for a PnPC guideline (80%) and further PC training (94%).Conclusion: This study reveals lacking PnPC guidelines and divergences regarding onsite opportunities for continued training across Swiss level III NICUs. Extending PnPC guidelines and training services to all centers can help bridge the barriers created by fragmented practice.

Uncertainty and probability in neonatal end-of-life decision-making: A mixed method study analysing conversations with families of critically ill newborns

“…Our results showed that palliative care was only discussed when parents took a proactive approach to decision-making or when the child's death was imminent. We can only speculate about the reasons of neonatal HCPs for the lag in offering palliative care, e.g., of being trained to cure (35) or of being unfamiliar with the provision of palliative care services (13). Notably, in a recent survey among Swiss NICUs, HCPs reported a lack of training and implementation of PPC guidelines and many expressed dissatisfaction with the provision of and need for training for PPC (13).…”

“…We can only speculate about the reasons of neonatal HCPs for the lag in offering palliative care, e.g., of being trained to cure (35) or of being unfamiliar with the provision of palliative care services (13). Notably, in a recent survey among Swiss NICUs, HCPs reported a lack of training and implementation of PPC guidelines and many expressed dissatisfaction with the provision of and need for training for PPC (13). Early integration of PPC (teams) may enhance informed decision-making, navigate uncertainty, and provide grief support (34).…”

“…Hence, it is of vital importance that HCPs working with neonates with life-limiting or life-threatening conditions and their parents meet the requirements of competent palliative care (4,9,10). However, the current stage of research suggests both variability in practice and a lack of adequate provision of PPC in Switzerland (10)(11)(12)(13)(14).…”

The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey

“…Although there are well established principles of perinatal palliative care, and the benefits for families and babies are well documented, practice remains fragmented and inconsistent (Boan Pion et al, 2021). In the United Kingdom (UK), it is suggested there are 2109 neonates who die per year who would benefit from palliative care (Bliss and Together for Short Lives, 2012), of which 98% die in the hospital setting (Together for Short Lives, 2022).…”

“…Although there are well established principles of perinatal palliative care, and the benefits for families and babies are well documented, practice remains fragmented and inconsistent (Boan Pion et al, 2021).…”