Including the Perspective of the Adolescent in Palliative Care Preferences

Abstract 

Improving communication with an adolescent with a life-limiting or life-threatening disease is key to providing comprehensive care and support. A pediatric hospital in the Midwest uses a communication tool (CCCT) to facilitate conversations about the adolescent's wishes, beliefs, values, preferences and goals. Information gathered in a CCCT conversation becomes a key intervention to providing compassionate, appropriate care that is directed toward quality of life consistent with the adolescent's and family's goals.

Key Words: Palliative care, adolescent, cystic fibrosis, communication, quality of life