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.
Objective:
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.
Methods:
Retrospective chart review of pregnant women and infants with potentially LLCs referred for prenatal palliative care counseling between 2016 and 2020.
Results:
A total of 115 women were referred for prenatal palliative care counseling. Most cases (57.6%) comprised trisomy 13 or 18 (n = 36) and complex congenital conditions (n = 32). Other life-limiting diagnoses included renal agenesis/severe dysplasia (n = 19), congenital heart diseases (n = 18), neurological anomalies (n = 8), and others (n = 5). In 72.0% of cases (n = 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.
Conclusions:
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.
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