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End of life care in a level IV outborn neonatal intensive care unit

Journal of Perinatology (2024)Cite this article

Subjects

Abstract

Objective

Describe care surrounding the end of life (EOL) in the neonatal intensive care unit (NICU).

Study design

Retrospective chart review of 208 infants who died in a level IV referral-only NICU over 5 years.

Results

A goals of care (GOC) conversation was documented before the day of death for 63% of infants. 73% died following withdrawal of life-sustaining treatment (WD); 13% died in a code. The median age at death was 17.5 days. 72% were held by a parent at EOL. 94% of families desired formal memory-making. We identified associations with mode of death and parental holding at death, including: WD was associated with palliative care consultation, early GOC conversations, and increased unit-specific length of stay. Holding was associated with chaplain visits, memory-making, and increased home-to-hospital distance.

Conclusion

We present a detailed description of EOL care in an outborn NICU, including novel data on parental holding and memory-making.

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Data availability

Datasets generated during the current study are available upon reasonable request.

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Acknowledgements

Thank you to Leah Engelstad and Elizabeth Boring.

Author information

Authors and Affiliations

  1. Section of Neonatology, University of Chicago, Chicago, IL, USA

    Catherine M. Groden

  2. Division of Palliative Care, Community Health Network, Indianapolis, IN, USA

    Mona Raed

  3. Division of Hematology-Oncology, Indiana University School of Medicine, Indianapolis, IN, USA

    Paul Helft

  4. Division of Neonatal-Perinatal Medicine, Indiana University School of Medicine, Indianapolis, IN, USA

    Jayme D. Allen

Authors
  1. Catherine M. Groden
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  2. Mona Raed
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  3. Paul Helft
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  4. Jayme D. Allen
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Contributions

CMG conceived the study, performed the chart review, and drafted the manuscript. MR and PH contributed to study design, data analysis and interpretation, and critical review of the manuscript. JDA conceived the study and contributed to data analysis and interpretation and critical review of the manuscript.

Corresponding author

Correspondence to Catherine M. Groden.

Ethics declarations

Competing interests

CMG previously owned stock in Merck. This does not conflict with this study. All other authors report no competing interests.

Ethics approval

This study was deemed exempt by the Institutional Review Board at Indiana University.

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Groden, C.M., Raed, M., Helft, P. et al. End of life care in a level IV outborn neonatal intensive care unit. J Perinatol (2024). https://doi.org/10.1038/s41372-024-01930-6

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  • DOI: https://doi.org/10.1038/s41372-024-01930-6

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