The Role of Perinatal Palliative Care in Fetal Neurology

Abstract

Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex clinical neurologic clinical scenarios. The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should all prompt involvement of a fetal palliative care team to work alongside obstetric and neonatal providers. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions, which have a wide range of severity and difficult to predict short and long-term outcomes. While many of these conditions will lead to the birth of an infant with neurodevelopmental challenges, few will result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help guide and support families through pre- and postnatal decision making and through bereavement care in the setting of fetal or neonatal death. Early involvement of a tailored palliative care team can provide a more holistic approach to the counseling process, facilitate planning and conversations, and ensure that the family’s goals and wishes are acknowledged throughout the infant’s care trajectory.