Comprehensive Care for the Family of the Fetus with a Lethal Condition
Many birth defects are currently diagnosed in the antenatal period and birth defects now account for the majority of causes of death in the first year of life in the United States. Prenatal diagnostic capabilities continue to rapidly expand, but unfortunately the ability to adequately treat many of the diagnosed conditions has not kept pace. Likewise, thinking regarding care for families of fetuses that will die before birth or live only a short time after birth has also lagged. The family experience with these pregnancies is analogous to that of families with a terminally ill child and their management is well served with a coherent end-of-life philosophy. The concept of perinatal hospice has been proposed as a comprehensive structured approach for the care of these families. Modern hospice care for adults originated in the 1960s in response to a realization that end of life issues for terminally ill patients were being inadequately addressed with traditional approaches. This philosophy of care rapidly expanded over the ensuing three decades, including application to the management of families with terminally ill children. Perinatal hospice extends the concept of hospice to include comprehensive support from the time of diagnosis through the birth and death of the infant, and into the postpartum period. The availability of perinatal hospice provides a viable management alternative to those families for whom elective pregnancy termination is not a desirable option. After prenatal diagnosis of a lethal fetal condition parents are presented with the option of a multi-disciplinary program of ongoing supportive care until the time of spontaneous labor or until delivery is required for obstetrical indications. Extensive support is also provided in labor through encouragement by nursing staff trained in grief management. Pain relief is administered by the anesthesia service. Labor management is conducted as for other labors with the exception of continuous fetal heart rate monitoring in conditions where an abnormal fetal heart pattern is expected. Method of delivery is based on obstetrical indications with the exception that a cesarean delivery is generally not done for a fetal status that is not fully reassuring, since intervention for this finding will not change the outcome for the baby and places the mother at increased risk for a complication. At birth, the attending neonatologist evaluates the infant, confirms the diagnosis, and places the infant with the parents so they can share in their baby’s life and death. Parents are allowed to stay with the child as long as they wish. They are encouraged to dress the baby, take photographs of the baby and hold the baby. All family members are encouraged to participate, including children when appropriate. All involvement is by parental choice, and they are only involved to their level of comfort. Each family receives a special remembrance decorative gift box as a keepsake and repository for birth items. Comfort measures are emphasized to the family, with staff assisting in this care as needed. The infants are kept warm and cuddled and some even fed. Infants surviving for longer periods are occasionally cared for in the nursery during the postpartum period, if the parents desire. Chaplain and social services provided spiritual and emotional support during this time as needed. Care is continued into the post-partum period by those providing grief support and contact from various members of the hospice team, with the level and timing of involvement dictated by the desires of the parents. The care of these patients has been accomplished without any notable maternal complications, and the response of parents to this philosophy of care has been overwhelmingly positive. When parents are given loving support, freedom from the fear of abandonment and careful counsel regarding clinical expectations in the setting of a lethal fetal condition, they frequently choose the option of perinatal hospice care for the management of their pregnancy. This can be safely accomplished with current methods of obstetrical care. These parents are thus allowed to fully experience the birth of their child and the bonding that occurs during the antepartum and immediate postpartum period. This bonding helps provide a firm foundation for obtaining closure with the death of their child. They may rest secure in the knowledge that they shared in their baby’s life, however brief, and treated their child with the same dignity afforded other terminally ill individuals under the best of circumstances. Related Reading Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol 2001;185:525-29. D’Almeida M, Hume r, Lathrop A, Jnoku A, Calhoun B. Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition; A pilot hospice program. Reitman JS, Calhoun BC, Hoeldtke NJ. Perinatal Hospice: A response to early termination for severe congenital anomalies. In TJ Demy, GP Stewart, eds., Genetics and Reproductive Technology: A Christian Response (Grand Rapids, MI: Kregel Books, 1999), pp. 197-211. Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM. Perinatal Hospice: should all centers have this service? Neonatal Network. 1997;16(6): 101-102. Calhoun BC, Reitman JS, Hoeldtke NJ. Perinatal hospice: a response to partial birth abortion for infants with congenital defects. Issues in Law and Medicine 1997; 13(2): 125-143. Calhoun BC, Hoeldtke NJ. The perinatal hospice: ploughing the field of natal sorrow. Frontiers in Fetal Health: A Global Perspective. 2000; 1(2):16-33.