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Birth defect, Fetal anomaly, Lethal anomaly, Palliative care, Program development



  1. Leuthner, Steven MD, MA
  2. Jones, Emilie Lamberg BSW, RN


Advances in fetal diagnostics have resulted in families facing a pregnancy complicated by a fetal health concern. Perinatal literature supports that these families benefit from extensive counseling and education presented by a multidisciplinary team. In the program described in this article, perinatal palliative care planning is offered to families who have been told that their fetus has a potentially lethal prognosis. Called the "Fetal Concerns Program," it was developed to address the complex needs of families whose fetus has anomalies. This article reviews perinatal palliative care concepts and describes the Fetal Concerns Program's development as a perinatal palliative care service within a broader program. The special role of the nurse coordinator of the Fetal Concerns Program is highlighted.