Attitudes, values, beliefs, and practices surrounding end-of-life care in selected Kansas communities

Abstract

Objective: This study was designed to better meet end-of-life care needs for patients and their families in rural Kansas communities. Methods: Initially, statistical information indicated an underutilization of hospice services in rural communities. To evaluate the data, focus groups were conducted in targeted communities in order to determine attitudes, values, beliefs, and practices surrounding end-of-life care. A script was developed using established focus group protocols. Each focus group was recorded and the tapes were transcribed. Transcripts were reviewed and categorized for similarities and emerging key issues. Results: Five major areas of concern were identified using this methodology. Major concerns were: (1) participants believed that control over decisions about care at the end of life is the patient’s right; (2) while participants saw a need for advance directives, they avoided using them; (3) group participants believed that the patient’s wishes should be given first priority and this was viewed as a patient’s right; (4) there was an expressed lack of trust in the existing health care system and its providers; and (5) participants expressed more fear over the manner of death than death itself. They fear a technological death as opposed to a good death. Conclusions: The values most important to the group participants included: freedom and independence, trust, honesty, the right to information, and the importance of family. This information will be utilized in the development of programs and interventions to effect changes in end-of-life care, not only in Kansas, but also in areas with a comparable population.