Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

Objectives: This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes. Methods: Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home...

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Bibliographic Details
Published inJournal of aging and health Vol. 21; no. 4; pp. 627 - 650
Main Authors Black, Betty S., Fogarty, Linda A., Phillips, Hilary, Finucane, Thomas, Loreck, David J., Baker, Alva, Blass, David M., Rabins, Peter V.
Format Journal Article
LanguageEnglish
Published Los Angeles, CA SAGE Publications 01.06.2009
SAGE PUBLICATIONS, INC
Subjects
Advance Care Planning
Advance Directive Adherence
Advance Directives
Aged
Aged, 80 and over
Alzheimer's Disease
Caregivers
Comprehension
Decision Making
Dementia
Dying
Family
Female
Health Professions
Health technology assessment
Humans
Interviews as Topic
Male
Medical Decision Making
Nursing Homes
Older people
Palliative care
Patients
Preferences
Proxy
Qualitative research
Terminal Care
United States
United States
treatment preferences
advance directives
nursing home patients
advance care planning
advanced dementia
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Summary:Objectives: This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes. Methods: Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home patients with dementia. The data were content analyzed. Results: Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by “machines” or “extraordinary measures.” Discussion: Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.
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ISSN:0898-2643
1552-6887
DOI:10.1177/0898264309333316