South Dakota's Dying to Know: A Statewide Survey about End of Life

Objective: To develop a baseline understanding of attitudes, advance planning, knowledge, and preferences about end-of-life (EOL) care among community-dwelling South Dakotans. Methods: Surveys were sent to 10,204 randomly selected households in South Dakota in August 2005, resulting in a 24.8% return rate (N 2533). Data were entered into the computer for subsequent univariate (frequencies) and bivariate (using chi(2)) analysis. Results: Most respondents said preparation for EOL was very important, yet far fewer had actually taken steps to ensure their EOL wishes would be known or honored. Most people did not want artificial hydration/nutrition at EOL, preferred to die at home, and harbored misconceptions about pain; yet, most had not engaged in conversations with their physician, minister, or lawyer about these issues. While some adults were unfamiliar with hospice care, when provided with a definition, a majority indicated that they would want hospice care if they were dying and preferably in their own homes. Conclusion: 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.