Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses

Abstract

Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family’s goals and values. The inclusion of PnPC in the multidisciplinary care of a family facing severe fetal neurologic diagnoses allows for skilled exploration of the values and experience that ultimately drive creation of goals of care. The parental experience of receiving a life-limiting fetal diagnosis pushes parents into an emotional journey, which typically follows a recognizable progression of stages. PnPC providers appreciate the significance of this experiential journey and the importance of parental movement toward readiness to simultaneously welcome and mourn their child. Through longitudinal supportive care, beginning early in the fetal diagnostic progress and continuing throughout pregnancy and into the newborn period, PnPC providers explore the uncharted parental experience alongside the family and support them in creating value-driven care plans for their child. They contribute greatly to the multidisciplinary fetal and neonatal care teams as the advocate for and promote insightful communication and assist in delivery and coordination of value-driven care.