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Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions*

DeCourcey, Danielle D., MD, MPH1; Silverman, Melanie, MPH1; Oladunjoye, Adeolu, MPH1; Wolfe, Joanne, MD, MPH2

doi: 10.1097/CCM.0000000000003472
Pediatric Critical Care

Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with cancer where it is correlated with high-quality end-of-life care. The impact of advance care planning on end-of-life outcomes for children, adolescents, and young adults with complex chronic conditions is unknown, thus we sought to evaluate parental preferences for advance care planning and to determine whether advance care planning and assessment of specific family considerations during advance care planning were associated with differences in parent-reported end-of-life outcomes.

Design: Cross-sectional survey.

Setting: Large, tertiary care children’s hospital.

Subjects: Bereaved parents of children, adolescents, and young adults with complex chronic conditions who died between 2006 and 2015.

Interventions: None.

Measurement and Main Results: One-hundred fourteen parents were enrolled (54% response rate) and all parents reported that advance care planning was important, with a majority (70%) endorsing that discussions should occur early in the illness course. Parents who reported advance care planning (65%) were more likely to be prepared for their child’s last days of life (adjusted odds ratio, 3.78; 95% CI, 1.33–10.77), to have the ability to plan their child’s location of death (adjusted odds ratio, 2.93; 95% CI, 1.06–8.07), and to rate their child’s quality of life during end-of-life as good to excellent (adjusted odds ratio, 3.59; 95% CI, 1.23–10.37). Notably, advance care planning which included specific assessment of family goals was associated with a decrease in reported child suffering at end-of-life (adjusted odds ratio, 0.23; 95% CI, 0.06–0.86) and parental decisional regret (adjusted odds ratio, 0.42; 95% CI, 0.02–0.87).

Conclusions: Parents of children, adolescents, and young adults with complex chronic conditions highly value advance care planning, early in the illness course. Importantly, advance care planning is associated with improved parent-reported end-of-life outcomes for this population including superior quality of life. Further studies should evaluate strategies to ensure high-quality advance care planning including specific assessment of family goals.

1Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital, Boston, MA.

2Division of Pediatric Palliative Care, Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA.

*See also p. 140.

All authors approved the final article as submitted. Dr. DeCourcey conceptualized and designed the study, drafted the initial article, revised the article, and approved the final article as submitted. Dr. DeCourcey had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Ms. Silverman designed the data collection instruments, supervised the data collection, carried out the analyses, wrote the methods section, reviewed and revised the article, and approved the final article as submitted. Ms. Silverman also had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Mr. Oladunjoye coordinated and completed survey data collection and reviewed and revised the article. Dr. Wolfe participated in study design, data analyses, reviewed and revised the article, and approved the final article as submitted.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s website (http://journals.lww.com/ccmjournal).

All phases of this study were supported, in part, by the Agency for Healthcare Research and Quality (AHRQ K12 HS 22986-02): Mentored Career Development Award in Child and Family Centered Outcomes Research.

Dr. DeCourcey’s institution received funding from the Agency for Healthcare Research and Quality (AHRQ), and she received support from the AHRQ. The remaining authors have disclosed that they do not have any potential conflicts of interest.

For information regarding this article, E-mail: danielle.decourcey@childrens.harvard.edu

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