Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
advance care planning; neonatal intensive care unit; Advance Care Planning; article; child; decision making; expectation; human; infant; Infant Newborn; outcome assessment; rank sum test; satisfaction; shared decision making
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. RESULT(S): 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(S): 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..Copyright Thieme. All rights reserved.
Lin M; Williams D; Vitcov G; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
American Journal of Perinatology
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</a>
The Case for Advance Care Planning in the NICU
Case Planning; NICU; Decissional-Support; Advanced Care Planning; ACP; Newborn Period
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
Lin M; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057824</a>