End of Life Decision Making, Communication and Meaning

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DESCRIPTION (provided by applicant): This two-year qualitative, anthropological, exploratory study will examine the ways in which underserved women with cancer and the diverse individuals who provide their care approach and understand end-of-life issues and decisions. The study will also test the feasibility of a narrative intervention-an "ethical will"- intended to improve the quality of the patients' end of life. Unlike conventional wills, which transfer worldly possessions, an ethical will is an enduring document that expresses an individual's values, beliefs, life lessons, hopes, love, and forgiveness in the form of a written legacy. The proposed community-based participatory research study features a series of in-depth interviews with 15 participant groups, each of which consists of five individuals: an underserved woman with metastatic cancer, as well as her main informal caregiver, hospice nurse, physician, and complementary and alternative medicine practitioner (for a total of 75 participants). The primary specific aims of the study are: 1) the collection and analysis of qualitative data on the beliefs, concerns, expectations, and goals regarding the end of life as expressed and understood by underserved women with cancer and those providing their care; 2) the collection and analysis of qualitative data on communication about end-of-life issues and decisions among underserved women with metastatic cancer and those providing their care; and 3) the development and pilot testing of an ethical will narrative intervention, which will be evaluated in a subsequent RCT. A secondary aim is to determine the feasibility of recruiting and retaining underserved women with cancer at the end of life and those who provide their care. The goal of the proposed ethical will intervention is to decrease suffering and to ease concerns and anxiety regarding death by supporting and strengthening dying women's and their surviving loved ones' sense of meaning. In the subsequent RCT, we will explore whether the examination of value systems that accompanies the creation of an ethical will has secondary benefits, including helping patients identify best care choices, enhancing patient-practitioner communication, enriching family relationships at the end of life, and functioning as a healing tool for loved ones during bereavement. The burden of cancer morbidity and mortality is disproportionately borne by low-income women, particularly women of color. The majority of end-of-life research in the United States to date, however, has focused primarily on white European American, middle class patients in hospitals or extended care facilities. Our qualitative study focuses on the cultural contexts of end-of-life issues, communication, and decision making among underserved, community-dwelling women with metastatic cancer.