Families’ Understanding of Adolescents Values Regarding EOL Care

Families of dying adolescents were found to have a poor understanding of their adolescent’s values in terms of their own end-of-life care.

A cross-sectional survey published in JAMA Network Open found that families had a poor understanding of their adolescent’s values in terms of their own end-of-life (EOL) care with respect to when to initiate EOL conversations and preference for being off machines that extend life, if dying. 

Researchers indicated that pediatric advance care planning (ACP) could aid in minimizing these misunderstandings, possibly even affecting the broader domain of clinical practice guidelines for quality palliative care. 

“Access to (pediatric ACP) to increase congruence for interested and ready adolescent-family dyads may be more beneficial than simply asking adolescents about their EOL treatment preferences by helping families with the burdens of making EOL decisions, ensuring that adolescents’ preferences are heard, and opening up conversations on topics that both the adolescent and family member may be thinking about, but avoiding,” the authors wrote. 

The survey was conducted among adolescent-family dyads from July 16, 2016 to April 30, 2019 at 4 tertiary care pediatric US hospitals. The participants included 80 adolescent-family dyads (n = 160) within a larger study facilitating pediatric advance care planning. 

The main outcome was congruence between adolescents with cancer and their families regarding adolescents’ values, goals, and beliefs about end-of-life care. 

Overall, family members’ understanding of their adolescent’s beliefs about the best time to bring up EOL decisions was poor. Notably, 86% percent 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), while only 39% of families were aware of this (prevalence-adjusted and bias-adjusted κ [PABAK], 0.18).

Families’ understanding of what was important to their adolescents when dealing with their own dying was excellent though for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95). However, families’ understanding was poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). 

“These gaps in understanding have serious clinical consequences because modern medicine has medicalized dying, resulting in most adolescents who die from cancer dying after withholding for withdrawing life-sustaining treatment,” the authors wrote. “The high premium adolescents placed on understanding their treatment choices and saying everything they have to say to their families underlines the importance of timely pACP, which may ease the families’ burden of making EOL decisions on behalf of their child.”

Moreover, the importance of being at peace spiritually at the EOL was almost universal, with 92.5% of participants indicating its importance. Given this finding, researchers suggested that spiritual assessments and appropriate referrals should be made to ensure culturally sensitive care. 

Additionally, consistent with study findings, many adolescent patients with life-limiting conditions perceive themselves to be a burden, which may not reflect how their families feel. Some even base their own treatment decisions on the perceived burden the treatment creates. Furthermore, resolving these feelings of being a burden is a need that could be addressed through pediatric ACP. 

“Ultimately, what is at stake here is excessive and unwanted treatment, leading to unnecessary and avoidable suffering,” the authors wrote.


Friebert S, Grossoehme DH, Baker JN, et al. Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals and Beliefs About End-of-Life Care. JAMA Network Open. doi:10.1001/jamanetworkopen.2020.5424.