Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort

Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort

Buskmiller C; Ho S; Chen M; Gants S; Crowe E; Lopez S

American Journal of Obstetrics & Gynecology MFM

2022

 Article; Child; Cohort Analysis; Comfort; Consultation; Controlled Study; Demographics; Expectation; Female; Fetus; Fetus Malformation; Hospice; Human; Income Group; Infant; Newborn; Outcome Assessment; Palliative Therapy; Postpartum Hemorrhage; Prenatal Diagnosis; Prognosis; Retrospective Study; Trisomy 13

BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature. OBJECTIVE(S): We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann. STUDY DESIGN: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. RESULT(S): Of 187 PPC consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p=0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p=0.02), but this was associated with mode of delivery and not choice of interventions. CONCLUSION(S): Most families' perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.Copyright © 2022 Elsevier Ltd. All rights reserved.

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