Perinatal palliative care 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 perinatal palliative care outcomes are detailed in peer-reviewed literature.
Objective
This study aimed to describe outcomes of perinatal palliative care at the Fetal Center of the University of Texas Health Science Center at Houston and Women's Center at Children's Memorial Hermann Hospital.
Study Design
This was a retrospective cohort of families receiving perinatal palliative care 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.
Results
Of 187 perinatal palliative care 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<.001), were more likely to change their plans (24% vs 6%; P=.001), and unsurprisingly used more healthcare resources. They were also more likely to have intraamniotic infection or postpartum hemorrhage (9% vs 22%; P=.02), but this was associated with mode of delivery and not choice of interventions.
Conclusion
Most families' perinatal experiences matched birth plans and expectations in this perinatal palliative care 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, such as meeting a live neonate. Perinatal palliative care was safe for maternal patients and equitable across racial, ethnic, and income groups. Perinatal palliative care and some perinatal interventions are options for care of the whole family in complex fetal medicine cases.
perinatal palliative care birth plan outcomes, life-limiting fetal diagnosis family centered care, trisomy 13 18 perinatal palliative care decisions, fetal anomaly comfort care interventions resource utilization, perinatal hospice birth plan matching outcomes, anticipatory grief management lethal fetal diagnosis, Buskmiller perinatal palliative care retrospective cohort, complex fetal medicine family values birth planning, perinatal palliative care maternal safety diverse cohort, life-limiting prenatal diagnosis intervention versus comfort care
PMID 35995365 35995365 DOI 10.1016/j.ajogmf.2022.100725 10.1016/j.ajogmf.2022.100725
Cite this article
Cara Buskmiller, Ho, S., Chen, M., Gants, S., Crowe, E., & Lopez, S. (2022). Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort. American journal of obstetrics & gynecology MFM, 4(6), 100725. https://doi.org/10.1016/j.ajogmf.2022.100725
Cara Buskmiller, Ho S, Chen M, Gants S, Crowe E, Lopez S. Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort. Am J Obstet Gynecol MFM. 2022;4(6):100725. doi:10.1016/j.ajogmf.2022.100725
Cara Buskmiller, et al. "Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort." American journal of obstetrics & gynecology MFM, vol. 4, no. 6, 2022, pp. 100725.
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