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Journal of Aging and Health
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*Advance Directives
*Dementia
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Article

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

Betty S. Black, PhD1*, Linda A. Fogarty, PhD2, Hilary Phillips, MA3, Thomas Finucane, MD4, David J. Loreck, MD5, Alva Baker, MD6, David M. Blass, MD1, and Peter V Rabins, MD4

1 Johns Hopkins University School of Medicine
2 JHPIEGO Corporation
3 Johns Hopkins Krieger School of Art & Sciences
4 Johns Hopkins Bayview Medical Center
5 University of Maryland School of Medicine
6 Copper Ridge Institute

* To whom correspondence should be addressed. E-mail: bblack{at}jhmi.edu.


  Abstract
Objectives: This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-oflife (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.

First published on March 5, 2009, doi:10.1177/0898264309333316

Journal of Aging and Health 2009;21:627.

A more recent version of this article appeared on June 1, 2009

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