Related Experiment Video
Updated: Jun 25, 2026

Oral Health Assessment by Lay Personnel for Older Adults
Published on: February 2, 2020
Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care
Betty S Black1, Linda A Fogarty, Hilary Phillips
1Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, 600 North Wolfe Street, Meyer Building, Room 279, Baltimore, MD 21287, USA. bblack@jhmi.edu
Objective:
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.
Related Concept Videos
Ethical Dilemmas II
Standards of Care II
Ethical Issues
Ethical Concerns in Healthcare:
Dementia
The progression of dementia is generally gradual.
Nursing Ethical Principles II
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's cancer...
Kubler Ross's Stages of Dying
In denial, individuals reject the reality of their condition, often thinking, "This isn't true; I feel fine," as a way to protect themselves from emotional distress. Anger...