Perinatal Hospice: Comprehensive Care for the Family of the Fetus with a Lethal Condition This margazine is part of Focus on the Family.
Excerpts:
A neonatal hospice construct of care has also been described and implemented, [Whitfield 3M, Siegel RE, Glicken AD, Harmnon, RI, Powers LK, Goldson EL. The application of hospice concepts to neonatal care.Am J Dis Child1982;136:421-424.] but this alone is no longer sufficient for the needs of families confronted with the now common scenario of prenatal diagnosis of a lethal fetal condition. In this setting the process of providing care for a family expecting the death of their youngest member no longer begins at birth but at the time of diagnosis.
Therefore, we have extended 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. For those choosing the option of perinatal hospice, the burden of effort in their care lay in the antepartum counseling and preparation.
Each family’s status and care plan are reviewed at regularly scheduled perinatal planning conferences. These multidisciplinary conferences include the maternal-fetal medicine service, anesthesia service, neonatology service, resident obstetrical team, labor and delivery nursing service, antepartum/postpartum nursing service, neonatal nursing service, social service, and chaplain service.
Patients are occasionally invited to meet together with a portion of this multidisciplinary team, depending on their particular circumstances. Careful attention is paid to insure that the care remained patient centered with easy accessibility for the patients and their families to the various members of this care team.
Extensive support is also provided in labor through encouragement by nursing staff trained in grief management. Pain relief was administered by the anesthesia service. Labor management is conducted as 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, except in rare instances where maternal request for cesarean delivery is made, usually out of a desire to see their infant alive before his or her death. In these cases there is extensive counseling to ensure that the patients understood the additional maternal risks entailed in the procedure, the inability of the surgery to change the ultimate prognosis for the neonate, and our recommendation for an attempted vaginal delivery. If patients stated an understanding of these facts and persisted in their desire for cesarean delivery this is generally granted. At birth, the attending neonatologist evaluated the infant, confirm the diagnosis, and placed the infant with the parents so they could share in their baby’s life and death.
The parents are allowed to stay in the delivery suite with the child as long as they wished. We encourage dressing the baby, taking photographs of the baby and holding the baby by all family members, including children when appropriate. Non-anomalous features of the infant are emphasized to the parents. Descriptions of features such as cute hands and soft skin gave the parents a positive focus and remembrance of their child. 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.
Typically, when a lethal congenital condition is prenatally diagnosed options presented to the parents include termination of the pregnancy versus continued pregnancy with routine maternal care and non-intervention for the fetus and neonate at the time of labor and delivery. A bare presentation of these options may leave parents with the perceived choice of futilely watching their infant die, which they may also interpret as increased suffering for their child, versus actively doing something to end this new and sudden emotionally wrenching dilemma. Although this counseling is presented with the intention of being non-directive, it may be viewed by parents as a tacit recommendation for early termination of the pregnancy. Parental decisions may also be strongly colored by the common fear of abandonment of themselves and their unborn child and the anticipation of pain and suffering that both may endure.
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