What Do Adolescents Want? Values, Goals, and Beliefs of Teens with Cancer (TH322B)

Abstract

•Describe patient-reported palliative care needs of teens with cancer.•Discuss implications of patient-reported outcomes for family-centered advance care (ACP) planning. The National Cancer Institute’s (NCI) 2016 recommendations advise parents to have open and honest communication about cancer with their children. Parents are interested in their adolescents-patient’s voice. Best timing and strategies to structure and facilitate this communication is unknown. This study examined patient-identified palliative care needs, goals, and values of teens with cancer. Surveyed adolescents with cancer randomized to a pediatric ACP intervention using the Lyon Advance Care Planning Survey-Adolescent Version-Revised. Adolescents’ (N=45) mean age 17 years (range ≥14-<21 years); 39% male; 81% white. Though 91% felt that being able to complete an advance directive (AD) was important, most teens had never talked about EOL care wishes. 96% would want their family to be involved in EOL decisions. Problems rated as worse than death were: not being able to communicate wishes to family, 58%; living with great pain, 42%; and total physical dependency, 22%. At EOL, adolescents desire honest answers from physicians (100%), being at peace spiritually (98%), physical comfort (93%), feeling strongly about being able to stay in own home (73%), understanding treatment choices (98%), saying everything I want to say to people in my family (100%), not being a burden to loved ones (89%), and knowing how to say good bye (91%). 56% of teens want to die at home with or without hospice and 9% in hospital. 58% of teens preferred to have ACP conversations early (when healthy, first diagnosed). Communicating EOL wishes to their family is very important to teens with cancer, consistent with ACS recommendations. Crucial information surrounding ADs and EOL wishes can be gained from teens with cancer.