Allowing Adolescents and Young Adults to Plan Their End-of-Life Care

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 (A...

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Bibliographic Details
Published in:Pediatrics (Evanston) 2012-11, Vol.130 (5), p.897-905
Main Authors: WIENER, Lori, ZADEH, Sima, BATTLES, Haven, BAIRD, Kristin, BALLARD, Elizabeth, OSHEROW, Janet, PAO, Maryland
Format: Article
Language:English
Subjects:
Adolescent
Adolescent medicine
Adult
Advance Care Planning
Biological and medical sciences
Company business planning
Demographic aspects
Ethics
Female
General aspects
HIV
Human immunodeficiency virus
Humans
Male
Medical sciences
Palliative care
Pediatrics
Planning
Public health. Hygiene
Public health. Hygiene-occupational medicine
Teaching. Deontology. Ethics. Legislation
Teenagers
Terminal care
Young Adult
Young adults
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Summary: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. 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. 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. 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.
ISSN:0031-4005
1098-4275
DOI:10.1542/peds.2012-0663