Development of a Perinatal Palliative Care Model at a Level II Perinatal Center Supported by a Pediatric Palliative Care Network

To describe the model build up to take care of fetuses and newborns eligible to perinatal palliative care (PnPC) followed in an Italian II level perinatal center. Retrospective chart review of all fetuses and newborn infants eligible to PnPC admitted to level II perinatal center within a 4 years period. Forty-five of 848 infants (0.5%) referred to II level NICU were eligible to PnPC. Twenty-seven percentage had fetal diagnosis. Twenty percentage were preterm infants at the limit of viability, 35% were newborns with life limiting or life threatening disease diagnosed or at the postnatal ward, 45% were newborns not responding to intensive care intervention with high health care needs or medical complexity. Fifty-seven percentage of neonates admitted to NICU died before discharge, while 16 (35% of population considered) were discharged home. Median age at death was 4 days after birth, and delivery room death immediately after birth occurred in six patients (13%). Despite the paucity of our population and the high variability in disease trajectories the perinatal palliative care program build up in our region provides a reproducible method for a structured taking in charge of fetuses and neonates eligible to PnPC and their families, from the time of diagnosis to bereavement, in both outpatient and inpatient settings.