title: Allowing adolescents and young adults to plan their end-of-life care.
abstract: OBJECTIVE
  The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness.
  
  
  METHODS
  Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document.
  
  
  RESULTS
  AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.
  
  
  CONCLUSIONS
  AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland 20892, USA. wienerl@mail.nih.gov
authors.forename: Lori
authors.initials: L
authors.lastname: Wiener
authors.forename: Sima
authors.initials: S
authors.lastname: Zadeh
authors.forename: Haven
authors.initials: H
authors.lastname: Battles
authors.forename: Kristin
authors.initials: K
authors.lastname: Baird
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Ballard
authors.forename: Janet
authors.initials: J
authors.lastname: Osherow
authors.forename: Maryland
authors.initials: M
authors.lastname: Pao
mesh_terms: D000293:Adolescent; D000328:Adult; D032722:Advance Care Planning; D005260:Female; D006801:Humans; D008297:Male; D055815:Young Adult