Buy Article Permissions and Reprints 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).

Publication History

Received: 06 January 2023

Accepted: 20 March 2023

Article published online:
28 April 2023

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