"South Dakota's Dying to Know": personal experiences with end-of-life care

Abstract

Objective: The aim of this study was to explore end-of-life (EOL) experiences of South Dakotans who had experienced the death of a loved one in the last 5 years.

Methods: A mail questionnaire generated a return of 893 people interested in sharing their experiences about the death of a loved one in the last 5 years. From those respondents, 35 people were randomly selected for this qualitative study. Unstructured interviews were conducted, tape-recorded, and transcribed. Data were entered into the computer for analysis, and qualitative analysis was used to extract themes from the narratives.

Results: Participants spoke of 42 deaths, with equal thirds being positive, negative, or neutral experiences. Participants primarily discussed deaths of loved ones who were older, most typically their father or mother. Of 10 emergent themes, the most frequently cited was the importance of communication among the dying person, his or her loved ones, and health care providers. Themes revealed components of the dying experience that contributed to quality of life at end of life as well as areas for improvement.

Discussion: 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.