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

Johns Hopkins University School of Medicine, Baltimore, Maryland, bblack{at}jhmi.edu

Linda A. Fogarty, PhD

JHPIEGO Corporation, Chapel Hill, North Carolina

Hilary Phillips, MA

Johns Hopkins Krieger School of Arts & Sciences, Baltimore, Maryland

Thomas Finucane, MD

Johns Hopkins Bayview Medical Center, Baltimore, Maryland

David J. Loreck, MD

University of Maryland School of Medicine, Baltimore

Alva Baker, MD

Copper Ridge Institute, Sykesville, Maryland

David M. Blass, MD

Johns Hopkins University School of Medicine, Baltimore, Maryland

Peter V. Rabins, MD

Johns Hopkins University School of Medicine, Baltimore, Maryland

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.

Key Words: advance care planning • advance directives • treatment preferences • nursing home patients • advanced dementia

This version was published on June 1, 2009

Journal of Aging and Health, Vol. 21, No. 4, 627-650 (2009)
DOI: 10.1177/0898264309333316


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