Surrogate Decision Makers ’ Understanding of Dementia Patients’ Prior Wishes

Objectives: This study examines how surrogate decision makers for demen-tia 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 nurs-ing 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 hav-ing EOL care discussions included factors that were both intrinsic and extrin-sic 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 normal-izing discussions of dying, encouraging advance care planning, helping them at PENNSYLVANIA STATE UNIV on September 18, 2016jah.sagepub.comDownloaded fro