Tackling Taboo Topics How to Have Effective Advanced Care Planning Discussions With Adolescents and Young Adults With Cancer Tackling Taboo Topics

Walter JK, Rosenberg AR, Feudtner C. — Wed, 01 May 2013 00:00:00 GMT

How can we clinicians talk about important but scary topics with patients and their parents? More specifically, for adolescents and young adults with cancer, how can we best engage them in advanced care planning (ACP) in a timely manner, especially in light of the reluctance by patients, families, and clinicians to open up this conversation? These are important questions: if the disease advances and the adolescent or young adult patient is no longer able to participate in decision making, then the parents or other family members will be called on for guidance regarding the medical choices the patient would have made, providing a so-called substituted judgment on behalf of the patient. Yet, frequently parents and family members do not know in sufficient detail what the patient would have wanted. Discussions that would have clarified these issues are often avoided or postponed because they are often felt to be too scary, depressing, or daunting. Indeed, getting patients and families to have these conversations has been a major hurdle since ACP was first advocated more than 20 years ago. So what to do?

Family-Centered Advance Care Planning for Teens With Cancer ACP for Teens With Cancer

Lyon ME, Jacobs S, Briggs L, et al. — Wed, 01 May 2013 00:00:00 GMT

Importance

Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied.

Objective

To examine the efficacy of family-centered ACP.

Design and Setting

Two-group randomized controlled trial in a pediatric oncology program.

Participants

Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012.

Intervention

Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information.

Main Outcome Measures

Statement of treatment preferences and Decisional Conflict Scale score.

Results

The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 (“treatment would extend my life by not more than 2 to 3 months”), intervention dyads demonstrated higher congruence (κ = 0.660; P < .001) vs control dyads (κ = −0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation.

Conclusions

Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.

JAMA Pediatrics: Palliative Care/End-of-Life Care Topic Collection

Tackling Taboo Topics How to Have Effective Advanced Care Planning Discussions With Adolescents and Young Adults With Cancer Tackling Taboo Topics

Family-Centered Advance Care Planning for Teens With Cancer ACP for Teens With Cancer