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

Author:D'Almeida, Michelle

11 J. AM. PHYSICIANS & SURGEONS 52 (Summer 2006).

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 alive, survival ranged from twenty minutes to 256 days. Further study of psychological outcomes is warranted.

In the United States 6,000 to 10,000 of all live births each year are afflicted with defects severe enough to cause neonatal death, and there are also significant numbers with conditions severe enough to cause intrauterine demise. Thus, there are a significant number of families who are candidates for perinatal hospice, a compassionate intervention for which there seems to be an unmet demand.

Some studies note that up to twenty percent of parents with a fetus with known severe chromosomal or anatomic anomalies choose to continue their pregnancy Previous experience with perinatal hospice confirms that finding, and also finds that more than 80% choose hospice when it is offered in a supportive environment.

Modern hospice care for adults originated in the 1960s in response to a realization that end-of-life issues for terminally ill patients were inadequately addressed by traditional approaches. Hospice care rapidly expanded over the ensuing three decades, to include care of terminally ill children and their families.

Whitfield and colleagues developed the idea of prenatal neonatal hospice, but with the now common scenario of prenatal diagnosis of a lethal condition, the families involved need a special type of hospice care. When a prenatal diagnosis portends perinatal death of the family's newest member, hospice care must start at the time of diagnosis. The perinatal hospice furnishes caring support to families who do not want abortion, whatever their moral, psychological, religious, or other reasons may be.

This study, a follow-up to previous experience with perinatal hospice, was carried out at RMH, a community tertiary hospital and an Illinois state-designated perinatal referral center for Northwest Illinois. There are approximately 2,500 deliveries per year at RMH, and 13,000 deliveries per year in its referral area. RMH also serves as one of the four...

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