A community survey of Sioux Falls, South Dakota was conducted in 2004 to understand knowledge, attitudes, and preferences about end-of-life (EOL) care and to generate conversations about these topics. Questionnaires were sent to 5,000 randomly selected households, with a return of 1,042 (21%). Most respondents said preparation for EOL is very important, yet far fewer had taken steps to ensure their EOL wishes would be known or met. These disparities are examined, with recommendations for future research and public policy. Bivariate analyses revealed significant differences by age, sex, education, marital status, and religiosity. Community studies are important for baseline understanding, evoking conversation, and setting goals for change. Public education is needed to strengthen understandings of hospice care, and professional education is needed to raise awareness about practitioners' roles in resolving discrepancies between what people want and what they get at end of life.
Disparities between what South Dakotans want at EOL and what actions they have taken to address those preferences challenge individuals, families, and professionals to engage in conversation to redress this inconsistency. Receptivity to physician-initiated EOL conversations suggests this talk be included with all patients, not just those who are elderly or at EOL. Data from this statewide study of community-dwelling adults provide information to better understand EOL preferences and to inform health policy and practice.
Participant reflections illuminated characteristics of a "good" death, how the health care system is understood in the face of dying, people's supportive roles in relation to the dying person, and the impact death has on survivors' own actions and preferences for EOL care. Recommendations for future research and application are discussed.
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