Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen

Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen

Gudrun J; Susanne A

Swiss Medical Weekly

2017

decision making; death; newborn; Switzerland; trisomy 18; major clinical study; newborn period; pregnancy; neonatal intensive care unit; conference abstract; human; child; female; male; palliative therapy; drug withdrawal; brain hemorrhage

Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification D) of sanaCERT Suisse certification. Until presently, the OKS is the only children's hospital in Switzerland which is certified in PPC. Furthermore, our PPC team is a member of the Pediatric Palliative Care Network Switzerland (PPCNCH). In order to focus on neonates, the biggest group needing PPC, we decided to develop a special program for Neonatal Palliative Care (NPC). Background(s): According to epidemiologic data, 400-500 children between the age of 0 and 18 years are dying in Switzerland each year. It's known from the PELICAN study (Bergstrasser; Zimmermann et al., 2016), that about 50% of these children are dying in the first year of life, of which 40% in the neonatal period. Four out of five children are dying in an ICU, the majority of them after a decision-making process with the decision to withhold or withdraw further treatment. Apparently, the neonates represent an important group and therefore it is reasonable to concentrate on NPC in the NICU. Case presentation: We present three neonatal patients suffering from severe, life threatening conditions: one newborn with trisomy 18, one premature of 32 week of gestation with a large intracerebral hemorrhage and a neonate with a life threatening conditions. The presentations demonstrate the difficulties and challenges and illustrate the importance of the involved teams networking in decision making and implementing care for these patients and their families under particular circumstances. The circumstances of death and the definitions of withholding or withdrawing therapy will be explained. Furthermore, the different requirements, discussions and the resources available in these cases will be presented. This indicates the possible improvements and developments in that area. Conclusion(s): Neonates are an important group to consider in a PPC program. Considering that the neonatal period is a very special phase of life for the child and his/her family deserve particular consideration and structures in order to treat them adequately. Caring for a neonate and his family needing PPC is a challenging task for the family and the multiprofessional team. Clear structures and allocated resources are very important to fulfill this need in a meaningful way.

June 2019 List