Perinatal Palliative Care: Additional Costs of an Interprofessional Service and Outcome of Pregnancies in a Cohort of 115 Referrals.

Abstract

<b><i>Background:</i></b> An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option. <b><i>Objective:</i></b> To (1) determine the profile characteristics of patients referred for prenatal palliative care counseling to Charité Universitätsmedizin Berlin, Germany; (2) evaluate pregnancy outcome; and (3) analyze the additional human resources per family required to provide specialized PnPC. <b><i>Methods:</i></b> Retrospective chart review of pregnant women and infants with potentially LLCs referred for prenatal palliative care counseling between 2016 and 2020. <b><i>Results:</i></b> A total of 115 women were referred for prenatal palliative care counseling. Most cases (57.6%) comprised trisomy 13 or 18 (<i>n</i> = 36) and complex congenital conditions (<i>n</i> = 32). Other life-limiting diagnoses included renal agenesis/severe dysplasia (<i>n</i> = 19), congenital heart diseases (<i>n</i> = 18), neurological anomalies (<i>n</i> = 8), and others (<i>n</i> = 5). In 72.0% of cases (<i>n</i> = 85) parents decided to continue pregnancy and plan for palliative birth. Fifty deliveries resulted in a liveborn infant: 33 of these died in the delivery room, 9 neonates died after admission to rooming-in on one of our neonatal wards, and 8 were discharged home or to a hospice. Total human resources (median, range) provided were 563 (0-2940) minutes for psychosocial and 300 (0-720) minutes for medical specialized PnPC per referral. <b><i>Conclusions:</i></b> Our data confirm previously observed characteristics of diagnoses, referrals, and outcomes. The provision of specialized and interprofessional PnPC services accounted for ∼14 hours per case of additional human resources.