How I Wish to be Remembered: The Use of an Advance Care Planning Document in Adolescent and Young Adult Populations

Abstract

BACKGROUND: Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language. OBJECTIVE: To explore whether adolescents and young adults living with a life-limiting illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document. METHODS: Adolescents and young adults with metastatic cancer or pediatric human immunodeficiency virus (HIV)-1 infection were presented Five Wishes, an advance directive document for adults. Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant's age; (2) helpful for other people the participant's age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document. RESULTS: Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes would be "helpful" or "very helpful" to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes "stressful" or "very stressful." Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making. CONCLUSIONS: An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. Future research should further validate the preferences identified by participants and explore whether an age-appropriate document can improve communication with family and staff in EOL care.