Family-Centered Advance Care Planning for Teens with Cancer
Lyon, M., Jacobs, S., Briggs, L., Cheng, Y., & Wang, J. (2013). Family-centered advance care planning for teens with cancer. JAMA Pediatrics, 167(5), 460-467. doi: 10.1001/jamapediatrics.2013.943.
This randomized controlled trial in a pediatric oncology program focused on the needs of 60 adolescent oncology patients for participation in Advance Care Planning to examine the efficacy of family-centered ACP. The goal was to test a model of ACP that anticipates these issues, fully empowers the family and adolescent, and keeps the key role of health care professionals central. Participants aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study in 2011/12. Intervention 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. This study found that family-centered advance care planning enabled families to understand and honor their terminally-ill adolescents’ wishes and to lessen suffering and improve quality of life. Family-centered ACP facilitated access to ACP for adolescents and African American families, may potentially decrease health disparities. This study suggests that family-centered ACP may be a model for a system change to implement to existing American Academy of Pediatrics and Institute of Medicine recommendations.
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