Poster Presentation COSA-IPOS Joint Scientific Meeting 2012

My Choice, My Voice: End of life planning with adolescents and young adults  (#520)

Sima Zadeh 1 , Lori Wiener 1 , Maryland Pao 2
  1. National Cancer Institute, Bethesda, MD, United States
  2. National Institute of Mental Health, Bethesda, MD, USA


Each year, more than 11,000 adolescents and young adults (AYA), ages 15-34, die from cancer and other life-threatening conditions.1  To facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis and continue throughout the course of illness.2 3 4  The American Academy of Pediatrics, the Institute of Medicine and the World Health Organization recommend involving AYA in decisions regarding their care as much as they are developmentally ready.5 6 4  Allowing AYA involvement in EoL planning can help parents and healthcare agents make informed decisions, alleviate distress, avoid decisional regret, and improve the patient’s quality of life.7 8 


Two studies were conducted to determine AYA interest in EoL planning and the specific aspects of EoL planning AYA want to participate in. In Study I, participants rated the helpfulness, stressfulness, and appropriateness of concepts within Five Wishes® they believed to be important in EoL planning. A new document was then created. In Study II, participants were randomly presented pages from Five Wishes® and the newly created document, and asked to rank each item on several factors including how likely they would be to complete each statement and also on content, design, format and style.


Results from both studies indicated that AYA were very interested being included in EoL planning and specific items to include within an advance care-planning guide. These findings led to the development of My Choice, My Voice: An Advanced Care Planning Guide for AYA.


With the recent completion of this document, clinicians now have a tool with which they can engage AYA in EoL planning. This presentation will review study findings and introduce My Choice, My Voice, as well as provide guidance on how to incorporate it into care. 

  1. National Vital Statistics System, National Center for Health Statistics, CDC. 10 Leading Causes of Death by Age Group, United States. 2011. Available at:
  2. Larson DG, Tobin DR. End-of-life conversations: evolving practice and theory. JAMA. 2000; 284: 1573-8.
  3. Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr. 2006;18:10-4.
  4. Field M, Behrman R, editors. When children die: improving palliative care and end of life care for children and their families. Washington, DC: National Academy Press; 2002.
  5. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106(2):351–7.
  6. McGrath PA. Development of the World Health Organization Guidelines on cancer pain relief and palliative care in children. J Pain Symptom Manage. 1996;12(2):87–92.
  7. Kane JR, Joselow M, Duncan J. Understanding the illness experience and providing anticipatory guidance. In Wolfe J, Hinds PS, Sourkes BM, eds. Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia, PA: Elsevier Incorporated; 2011: 30-40.
  8. Barfield RC, Brandon D, Thompson J, Harris N, Schmidt M, Docherty S. Mind the child: Using interactive technology to improve child involvement in decision making about life-limiting illness. The American Journal of Bioethics. 2010;10(4):28-30.