Patient Control, Ethnicity, and End-of-Life Care

Volker, Deborah

Abstract

The lay public and health care professionals share an interest in improving care of the dying and promoting dignified dying. However, empirical evidence of what constitutes a dignified death for the patient is lacking. Maintaining a sense of control is also considered an important element in this, but control over one?s future may be a Western notion with questionable relevance to culturally diverse patient groups. Therefore, the purpose of the proposed study is to improve understanding of adult cancer patients? preferences for control in the context of end-of-life care A naturalistic, hermeneutic approach will be used to interview a tri-ethnic group of people with advanced car Because Non-Hispanic Whites, Hispanic, and Non-Hispanic Black people are the largest ethnic groups in the United States, people from these three groups will be included in the study. Advanced practice oncology nurses will also be interviewed in order to gain insight into their experience of patient preferences for control at the end of life.
The specific aims of the study are to: (1) explore what adult patients with advanced cancer want in regard to personal control at the end of life, (2) examine differences between Non-Hispanic White, Hispanic, and Non-Hispanic Black patient preferences for personal control at the end of life, and (3) explore the experiences that oncology advanced practice nurses have had with patients in regard to personal control at the end of life. Findings from this study will provide insight into patient preferences for control at the end of life, and can be used to improve clinical care for patients with advanced cancer. Study findings may also provide guidance for future research to design and test interventions designed to identify and promote patient preferences for end-of-life care.