Research & Information
Perinatal Hospice
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.
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.
This article is used with permission from AAPLOG.
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