(HealthDay News) — Adolescents and young adults (AYAs) with life-threatening illness want to be able to choose and record specific information for their end-of-life care, according to a study published online Oct. 8 in Pediatrics.
Lori Wiener, Ph.D., from the National Institutes of Health in Bethesda, Md., and colleagues analyzed data from 52 participants (age 16 to 28 years) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) who ranked statements presented in the pages from the advance care planning guide My Thoughts, My Wishes, My Voice and the adult document Five Wishes. Participants suggested changes in content, design, format, and style, and a new document, Voicing My Choices, was developed.
The researchers found that AYAs living with a life-threatening illness wanted to be able to choose and record specific information. This information included the kind of medical treatment they did and did not want to receive; how they would like to be cared for; information that they wanted their family and friends to know; and how they wanted to be remembered.
“This study identified items that are important in a specific document that allows compassionate and self-directed care, support, and comfort both before and after death,” the authors write. “Voicing My Choices allows AYAs to reflect on their life and to make choices about what nurtures, protects, and affirms their remaining life and how they wish to be remembered into the future.”