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American Academy of Pediatrics
Article

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

Lori Wiener, Sima Zadeh, Haven Battles, Kristin Baird, Elizabeth Ballard, Janet Osherow and Maryland Pao
Pediatrics November 2012, 130 (5) 897-905; DOI: https://doi.org/10.1542/peds.2012-0663
Lori Wiener
aPediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland;
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Sima Zadeh
aPediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland;
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Haven Battles
aPediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland;
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Kristin Baird
aPediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland;
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Elizabeth Ballard
bDepartment of Psychology, Catholic University of America, Washington, District of Columbia;
cOffice of the Clinical Director, National Institute of Mental Health, Department of Health and Human Services, Bethesda, Maryland; and
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Janet Osherow
dPediatric Infectious Disease Department, Georgetown University, Washington, District of Columbia
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Maryland Pao
cOffice of the Clinical Director, National Institute of Mental Health, Department of Health and Human Services, Bethesda, Maryland; and
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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.

KEY WORDS
  • adolescents
  • end-of-life
  • advance care planning
  • decision-making
  • young adults
  • cancer
  • HIV
  • Abbreviations:
    AYAs —
    adolescents and young adults
    EoL —
    end-of-life
    MTMWMV —
    My Thoughts, My Wishes, My Voice
    • Accepted June 20, 2012.
    • Copyright © 2012 by the American Academy of Pediatrics

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    Pediatrics
    Vol. 130, Issue 5
    1 Nov 2012
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    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
    Pediatrics Nov 2012, 130 (5) 897-905; DOI: 10.1542/peds.2012-0663

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    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
    Pediatrics Nov 2012, 130 (5) 897-905; DOI: 10.1542/peds.2012-0663
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    Keywords

    • adolescents
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