Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition

Abstract:
Twenty-eight newborns prenatally diagnosed with lethal anomalies were eligible for a pilot hospice program at Rockford Memorial Hospital (RMH). Comprehensive care in a comforting community setting was provided to the 75% of families who chose this option. No maternal morbidity resulted. In the 76% of infants who were born live, survival ranged from 20 minutes to 256 days. Further study of psychological outcomes is warranted.

Extracts:
"the need for comprehensive, especially psychological, care for families of infants who will die in utero, or live for only a short while after birth, has been underestimated. The family's experience with these pregnancies is analogous to that of families with a terminally ill child. Their needs are best fulfilled with a comprehensive end-of-life approach."

"We recognize that when a prenatal diagnosis portends perinatal death of the family's newest member, hospice care must start at the time of diagnosis."

"To provide adequate understanding, especially while exploring anticipatory
grieving, parents were carefully counseled regarding the fetal diagnosis and probable prognosis. Families were allowed to grieve, explore life issues, and prepare for the precious time they might have to spend with their child. Antepartum consultation with the neonatology service included development of a postnatal plan for the eventuality of a live birth."

"Perinatal hospice care has now been offered on the RMH perinatal service for a number of years. During the pilot program, 75% of patients chose to continue their pregnancies in this environment of care, despite prenatal diagnosis of a lethal condition. The care of this group of patients was accomplished without any notable maternal morbidity."

"Typically, the options presented to the parents at the time a lethal condition is diagnosed include abortion of the pregnancy versus continued pregnancy with routine maternal care, and nonintervention for the 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 increasing the suffering of their child, versus actively doing something to end this sudden, emotionally wrenching dilemma."

"Parents of infants with external congenital defects are not repulsed by the appearance of their infant, and most emphasize the normal aspects of the child. A major advantage of perinatal hospice is that a significant majority of these infants may be live-born, allowing the parents and family a chance to share precious time with their infant, even if the infant's life is exceedingly brief."

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Journal Reference:
Calhoun BC, Napolitano P, Terry M, et al. Perinatal hospice. Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition. Journal of American Physicians and Surgeons Volume 11 Number 2 Summer 2006