A Five-Year Review of Referrals for Perinatal Palliative Care

Abstract

San Diego Hospice and the Institute for Palliative Medicine created one of the earliest perinatal palliative care programs in the country. Only four studies have reported outcomes for pregnant women referred to perinatal palliative care services for potentially lethal prenatal diagnoses. To learn: (1) who is referred for perinatal palliative care at San Diego Hospice; (2) what happens after referral to perinatal palliative care; and (3) what happens after delivery for this population. This was an exploratory retrospective electronic chart review of all patients referred to a home perinatal palliative program. Sixty-six women were referred to the San Diego Hospice and the Institute for Palliative Care home perinatal palliative care program between October 2006 and August 2012. Mean age was 31 years. The majority of women were Hispanic, Christian/Catholic, married, with full prenatal care, and previous children. Average gestational age at referral was 27 (18-39] weeks. Thirty-two cases were referred for Trisomy 13, Trisomy 18, or anencephaly. Palliative care services were given over a mean 45 (0-132) days and 3 (0-12) visits prior to delivery. Most women completed a birth plan prior to delivery, chose palliative treatment only, and made final arrangements with the palliative team. Forty-one deliveries resulted in a liveborn infant. Twelve liveborn infants survived past 72 hours and were admitted to pediatric hospice care. One-third of women met with the palliative care team only once or twice prior to delivery, indicating a need for earlier referral to provide more comprehensive palliative care.