Learning Objective #1: critically examine the design, methodology and findings of a statewide research program related to knowledge, attitudes, and preferences about end-of-life care.

Learning Objective #2: discuss implications of research findings for replication in other geographic areas and for health policy and legislative initiatives.

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This session will examine findings of a statewide research study conducted by LifeCircle South Dakota: Partners Improving End of Life Care. LifeCircleSD is an interdisciplinary coalition whose purpose is to improve end-of-life care for residents of the state. South Dakota is a rural state, with a population of approximately 775,000 people (approximately 10 people per square mile). People of South Dakota are predominantly white non-Hispanic (87%) with American Indians accounting for the largest minority (8.6%). The research was conducted as a survey, replicating and expanding previous research conducted by Life’s End Institute of Missoula, Montana. Questionnaires were sent to 10,204 randomly selected households, with a return rate of 25%. Analyses reveal that what people want at end of life, what they are receiving, and what people do to achieve their desired end-of-life experiences are disconnected. Findings of the survey research will be augmented by qualitative interview data with survey respondents who reported experiencing the death of someone close to them within the last five years. The survey findings will be compared to findings of a study conducted one year earlier, prior to the intense debate and national coverage of end-of-life issues surrounding the death of Terri Schiavo in early 2005; and statistically significant patterns by sex, race, and age will be presented. Discussion will address the ways in which the research has engaged communities and the ongoing work of disseminating findings so as to inform health policy, legislation, and community planning. Implications for further research will be explored.