An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial

Justin N. Baker, Sarah Friebert, Jennifer Needle, Ji Ji Jiang, Jichuan Wang, Maureen E. Lyon

Research output: Contribution to journalArticlepeer-review

6 Scopus citations


BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences.

METHODS: Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence.

RESULTS: Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01).

CONCLUSIONS: High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

Original languageEnglish (US)
Article numbere2021054796
Issue number5
StatePublished - May 1 2022

Bibliographical note

Publisher Copyright:
Copyright © 2022 by the American Academy of Pediatrics.


  • Adolescent
  • Advance Care Planning
  • Advance Directives
  • Child
  • Death
  • Family
  • Female
  • Humans
  • Male
  • Neoplasms/therapy
  • Terminal Care

PubMed: MeSH publication types

  • Randomized Controlled Trial
  • Journal Article
  • Research Support, N.I.H., Extramural


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