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Am J Perinatol 2024; 41(S 01): e1657-e1667
DOI: 10.1055/s-0043-1768488
Original Article

Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit

Matthew Lin 
1   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, Massachusetts
5   Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts
,
Christy Cummings
2   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
› Institutsangaben Funding C.C. 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 (C.C. 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 This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU).

Study Design Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding.

Results A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports.

Conclusion ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs.

Key Points

  • ACP is associated with improved parent-reported end-of-life outcomes.

  • Parents conceptualize end-of-life care outcomes in nuanced ways.

  • Families should have the opportunity to participate in ACP discussions that meet their unique needs.

Keywords

palliative care - neonatology - advance care planning - neonatal intensive care unit - goals of care - end-of-life care - do-not-resuscitate order - communication

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.


Ethical Approval

All components of this research project adhered to the Boston Children's Hospital IRB research guidelines and ethical standards. The Boston Children's Hospital IRB approved this study (IRB- P00037312).


Supplementary Material



Publikationsverlauf

Eingereicht: 06. Januar 2023

Angenommen: 20. März 2023

Artikel online veröffentlicht:
28. April 2023

© 2023. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

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