Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition

Abstract

Objective: To describe our experience in providing a program of structured interdisciplinary care for the families of fetuses prenatally diagnosed with a lethal congenital anomaly.

Study design: We developed a comprehensive "perinatal hospice" program for the supportive care of families with fetuses known to have a lethal condition. Upon prenatal diagnosis of a lethal fetal condition, parents were presented with the option of elective pregnancy termination versus a multi-disciplinary program of ongoing supportive care until the time of spontaneous labor or until delivery was required for obstetric indications. We evaluated patient use of this new service and the natural history of pregnancies managed in this fashion.

Results: The population consisted of 33 patients carrying a fetus with a clearly delineated lethal anomaly. Twenty-eight (85%) chose to participate in the perinatal hospice program. Of these, 11/28 (39%) had an intrauterine fetal death and 17/28 (61%) delivered a live-born infant. Among the live-born infants were 12 vaginal deliveries, 4 preterm and 8 at term. Obstetric indications or maternal request resulted in cesarean delivery for 5/28 (18%), 4 preterm and 1 at term, all live born. All live-born infants died within 20 minutes to 2 months. There were no maternal complications.

Conclusion: The availability of a structured program providing ongoing, comprehensive, multidisciplinary, supportive perinatal care offers a tangible and safe alternative to early elective pregnancy termination for patients carrying a fetus with a lethal congenital condition.