Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care

Abstract

IMPORTANCELack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. OBJECTIVE To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. EXPOSURE Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. MAIN OUTCOMES AND MEASURES The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions).RESULTS A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). CONCLUSIONS AND RELEVANCEMany families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and (continued) Key Points Question Do families of adolescents with cancer know what the adolescent would want if they were dying? Findings In this cross-sectional study of 80 adolescent-family dyads (160 participants), critical congruence gaps were found between adolescents with cancer and thei...

Longitudinal understanding of prognosis among adolescents with cancer

“…6,22 Taken together, it seems that parents' and oncologists' expectations of treatment success may occasionally diverge from the expectations of their adolescent child, perhaps complicating decision-making, particularly for adolescents with advanced cancer. 6,21,23 We observed no marked changes in adolescents' prognosis understanding over time. We did not find longitudinal studies of this nature for comparison; thus, this represents a novel contribution to the literature.…”

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“Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer

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