Allowing adolescents and young adults to plan their end-of-life care

Lori Wiener, Sima Zadeh, Haven Battles, Kristin Baird, Elizabeth Ballard, Janet Osherow, Maryland Pao

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)897-905
Number of pages9
JournalPediatrics
Volume130
Issue number5
DOIs
StatePublished - Nov 2012

Fingerprint

Terminal Care
Young Adult
Advance Care Planning
HIV Infections
Parturition
Wishes
End of Life Care
Young Adults
Neoplasms
Illness
Therapeutics

Keywords

  • Adolescents
  • Advance care planning
  • Cancer
  • Decision-making
  • End-of-life
  • HIV
  • Young adults

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Arts and Humanities (miscellaneous)

Cite this

Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5), 897-905. https://doi.org/10.1542/peds.2012-0663

Allowing adolescents and young adults to plan their end-of-life care. / Wiener, Lori; Zadeh, Sima; Battles, Haven; Baird, Kristin; Ballard, Elizabeth; Osherow, Janet; Pao, Maryland.

In: Pediatrics, Vol. 130, No. 5, 11.2012, p. 897-905.

Research output: Contribution to journalArticle

Wiener, L, Zadeh, S, Battles, H, Baird, K, Ballard, E, Osherow, J & Pao, M 2012, 'Allowing adolescents and young adults to plan their end-of-life care', Pediatrics, vol. 130, no. 5, pp. 897-905. https://doi.org/10.1542/peds.2012-0663
Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J et al. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012 Nov;130(5):897-905. https://doi.org/10.1542/peds.2012-0663
Wiener, Lori ; Zadeh, Sima ; Battles, Haven ; Baird, Kristin ; Ballard, Elizabeth ; Osherow, Janet ; Pao, Maryland. / Allowing adolescents and young adults to plan their end-of-life care. In: Pediatrics. 2012 ; Vol. 130, No. 5. pp. 897-905.
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