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Fetal outcomes and continuity in perinatal palliative care patients at a quaternary care pediatric hospital

Journal of Perinatology volume 43, pages 889–894 (2023)Cite this article

Subjects

Abstract

Objective

Perinatal palliative care (PPC) is the coordinated application of palliative care principles to the care of families, fetuses and newborns with suspected life-limiting conditions. This approach relies on continuity of care that spans pregnancy, birth and beyond. The goal of this retrospective cohort study was to evaluate outcomes and PPC continuity in infants born to families who received PPC at a quaternary care pediatric hospital, and to identify targets to improve care continuity.

Study design

PPC patients seen between July 2018 and June 2021 were identified via local PPC registry. Demographic, outcome, and continuity data were gathered from the electronic medical record. Descriptive statistics were used to calculate the rate of postnatal palliative consult and infant mortality rates.

Results

181 mother-infant dyads were identified as having a PPC consultation and had available data following birth. Overall perinatal mortality was 65%; 59.6% of all liveborn infants died prior to discharge. Only 47.6 % of liveborn infants, who did not die in the perinatal period, received postnatal palliative care. Location of birth (primary versus non-network hospital) was significantly associated with postnatal PPC consult rate (p = 0.007).

Conclusion

Continuation of palliative care after birth in families who received perinatal palliative care is inconsistently achieved. Creating reliable systems for PPC continuity will depend on location of care.

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Fig. 1: Outcomes of newborns after perinatal palliative care consultation.
Fig. 2: Run chart of days of life until postnatal consultation of palliative care.
Fig. 3: Pareto chart of failure of postnatal consults to palliative care.

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Data availability

The dataset generated during and/or analyzed during the current study are not publically available due to concerns in maintaining private health data, but are available from corresponding author upon reasonable request.

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Acknowledgements

The authors would like to acknowledge Drs. Lilli Ding and Qing Duan for their assistance with statistical modeling and data support. We would also like to acknowledge Dr. Jennifer Linebarger for her communication and willingness to share her team’s experiences.

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Author notes

  1. These authors contributed equally: Zachary J. Farmer, Samantha J. Palmaccio-Lawton.

Authors and Affiliations

  1. Department of Neonatology, Nationwide Children’s Hospital, Columbus, OH, USA

    Zachary J. Farmer

  2. Department of Palliative & Hospice Medicine, Nationwide Children’s Hospital, Columbus, OH, USA

    Zachary J. Farmer

  3. Department of Neonatal and Pulmonary Biology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Samantha J. Palmaccio-Lawton

  4. Department of Pediatrics, University of Cincinnati College of Medicine, OH, Cincinnati, USA

    Samantha J. Palmaccio-Lawton

  5. Department of Pain and Palliative Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Hilary A. Flint, Brittney Whitford, Rachel Thienprayoon & Krista Nee

  6. Department of Anesthesiology, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Hilary A. Flint, Brittney Whitford, Rachel Thienprayoon & Krista Nee

Authors
  1. Zachary J. Farmer
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Contributions

KN, HF, RT and BW conceptualized the initial project and design was further developed in coordination with ZF and SPL. ZF and SPL were responsible for primary data collection, analysis and writing the paper. HF, KN assisted with data collection. SPL was responsible for figure and table creation, paper editing, communication with journals and submission.

Corresponding author

Correspondence to Samantha J. Palmaccio-Lawton.

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Farmer, Z.J., Palmaccio-Lawton, S.J., Flint, H.A. et al. Fetal outcomes and continuity in perinatal palliative care patients at a quaternary care pediatric hospital. J Perinatol 43, 889–894 (2023). https://doi.org/10.1038/s41372-023-01664-x

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