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Am J Perinatol 2024; 41(S 01): e1783-e1791
DOI: 10.1055/s-0043-1768960
Original Manuscript

Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit

Matthew Lin 
1   Division of Hospital Medicine, Department of Pediatrics, Children's National Medical Center, Pediatric Palliative Care Program, Washington, District of Columbia
,
David Williams
2   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
,
Giselle Vitcov
2   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
,
Sadath Sayeed
2   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
,
Danielle D. DeCourcey
3   Division of Medical Critical Care, Boston Children's Hospital, Boston, Massachusetts
,
Joanne Wolfe
4   Department of Psychosocial Oncology and Palliative Care and Department of Pediatrics, Dana-Farber Cancer Institute, Boston Children's Hospital, Boston, Massachusetts
,
Christy Cummings
2   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
› Author Affiliations Funding Dr. Cummings is supported by a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health under award number R01HD094794 (CC PI). This funder played no role in the study design, analysis, or preparation of this article. The other authors received no other external funding for this study.
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Abstract

Objective Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU).

Study Design Single-center cross-sectional survey of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021 was carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, and Wilcoxin rank sum tests were used to evaluate differences between parents who did and did not receive ACP.

Results Out of eligible parents, 40 out of 146 (27%) responded to our survey. Most parents (31 out of 33, 94%) rated ACP as being very important and 27 out of 33 (82%) reported having ACP discussions during their child's admission. Parents preferred initial ACP discussions to occur early in their child's illness trajectory with members of the primary NICU team, with most parents' experiences aligning with these preferences.

Conclusion Parents value ACP discussions suggesting a further role for ACP in the NICU.

Key Points

  • NICU parents value and participate in advance care planning discussions

  • Parents prefer advance care planning with members of the primary NICU, specialty, and palliative care teams

  • Parents prefer advance care planning early in their child's illness trajectory

Keywords

neonatology - advance care planning - palliative care - NICU - neonatal - intensive care unit - perinatal palliative care

Ethical Approval

All components of this research project adhered to the Boston Children's Hospital institutional review board (IRB) research guidelines and ethical standards. The Boston Children's Hospital IRB approved this study (IRB approval number: P00037312).


Authors' Contributions

M.L. conceptualized and designed the study and data collection instrument, conducted data collection, performed supervised quantitative and qualitative analysis, and drafted the initial manuscript. D.W. performed statistical analysis and critically reviewed and revised the manuscript. S.S., D.D.D., and J.W. conceptualized and designed the study and data collection instrument, and critically reviewed and revised the manuscript. C.C. and G.V. conceptualized and designed the study and data collection instrument, performed qualitative analysis, and critically reviewed and revised the manuscript. All authors approve the final manuscript as submitted and agree to be accountable for all aspects of the work.


Supplementary Material



Publication History

Received: 19 January 2023

Accepted: 07 April 2023

Article published online:
18 May 2023

© 2023. Thieme. All rights reserved.

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