A significant incongruence between adolescents with cancer and their families when it comes to end-of-life (EOL) care decisions was revealed in a recently published study. Researchers conducted a cross-sectional study of 80 adolescent-family dyads (160 participants) and found families had a poor understanding of their adolescents’ preferences for the best time to bring up end-of-life decisions. A significant disconnect was also noted regarding the issues of dying a natural death and being off life support.

The researchers examined patient-reported EOL values and needs of adolescents with cancer and congruence with their families’ understanding of these needs. The study was conducted between July 16, 2016, and April 30, 2019, at 4 US tertiary care pediatric hospitals: Akron Children’s Hospital in Akron, Ohio; St Jude Children’s Research Hospital in Memphis, Tennessee; University of Minnesota Masonic Children’s Hospital in Minneapolis; and Children’s National Hospital in Washington, DC. The respondents included adolescents between the ages of 14 and 21 years with cancer at any stage. Family members included legal guardians for minors or chosen surrogate decision-makers for adolescents who were18 and older.

The researchers report that to date this is the largest study of its kind, and results suggest there may be ways to help limit unnecessary and avoidable suffering. Agreement between patients and their families/caregivers regarding advance care planning “is understudied, particularly in pediatrics,” said study investigator Daniel H. Grossoehme, DMin, MS, of the Rebecca D. Considine Research Institute and the Haslinger Family Pediatric Palliative Care Center, both at Akron Children’s Hospital (email communication, July 2020). “There is always a sense that the parents are the best decision-makers. They want to make a good decision and do what the teenager wants, but it had never been studied.”

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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). Among the adolescents, 55.0% (44) were female, 75.0% (60) were White, and mean age was 16.9 years. Among the family members, 82.5% (66) were female, 81.3% (65) were White, and mean age was 45.3 years. Leukemia and solid tumors accounted for more than 60% of diagnoses, followed by brain tumors (20.0%) and lymphoma (11.3%). None of the adolescents had an advance directive.

The importance of “dying a natural death” and of “being off machines that extend life, if dying” was rated as very important or important by 60.0% of adolescents, and 76.2% wanted to “stay in their own home, if dying.” The study showed that 86% of the adolescents thought the best time to bring up EOL decisions was early. It also revealed only 39% of families accurately reported their adolescents’ preference for early timing of discussions regarding these decisions.