This research will address cultural variation in approaches to autonomous decisionmaking, treatment preferences at the end of life, and family caregiver satisfaction with end of life care for their family member. The long-term objective is to develop models of cultural variations towards end of life decisions in order to promote respect for diversity and provide quality care to patients and their families dealing with eventually fatal illnesses. A cohort of 108 patients diagnosed with advanced lung or colon cancer, half of whom will be African American and half White (not of Hispanic origin), along with their identified family caregivers, will be studied prospectively over a two year study period. After death interviews will be conducted with family caregivers of patients who die. Survivor interviews will be conducted with patients who are still alive (and their family caregivers) at 8 months. Analysis of quantitative and qualitative data will lead to the identification of 1) A subset of values and outcomes which are important to both groups; 2) Subsets over which there are substantial differences by study group, e.g., treatment preferences for end of life care, characteristics of the patient's death and dying, valuing of the basic tenets of autonomy, and caregiver satisfaction with patient's end of life care, and 3) Reasons for the above differences using a combination of qualitative and quantitative techniques. The success of the project will be determined by our ability to identify a set of factors related to cultural variation and to be able to elucidate differences between and among study groups through analyses of the data. The results of this research will allow us to develop a subsequent, larger scale, research application on cultural variation and end of life care that can be tested with additional minority populations.
