End-of-Life Care for African Americans

Aim 1: A. We will conduct semi-structured interviews with patient/caregiver pairs and focus groups with providers that will test the communication strategies of available audiovisual materials and materials that we will develop for the intervention. The audiovisual segments will be taken from an available EOL care educational digital versatile disc (DVD). We aim to interview 12 patients and their caregivers, or more until thematic saturation is reached. We will obtain informed consent, and all interviews will be audiotaped and transcribed. Interviews will be conducted separately, and will last 30 to 45 minutes. B. Two focus groups will be conducted with palliative care providers to identify communication strategies they use with AAs. One will be conducted with providers from Parkland Hospital. The other will be conducted with providers from University Hospitals, the Dallas VA, and Baylor University Medical Center in Dallas. Informed consent will be obtained. All sessions will be audiotaped and transcribed. The focus groups will last 45 to 60 minutes. C. We will create additional DVD segments that will address previously identified barriers to EOL care for AAs, including: 1) spiritual/religious conflict, and 2) medical mistrust. We will obtain feedback on the newly developed segments from 10 new patient/caregiver dyads (semi-structured interviews) and 6 to 8 AA religious leaders (focus group) recruited from local churches. Informed consent will be obtained prior to conducting the interviews and focus groups. All will last 30 to 60 minutes. D. A lay health advisor (LHA) will be recruited from the community to provide counsel about EOL care to patients who will receive the intervention. The LHA and the PI of the project will undergo training in how to provide culturally sensitive EOL care for AAs via the APPEAL (A Progressive Palliative Care Educational Curriculum for the Care of AAs at Life's End) Curriculum created at Duke University. After training, the LHA will participate in in-service work with the Parkland Palliative Care Team and the PI. Aim 2: We will use an e-EOL algorithm to identify AA patients hospitalized at Parkland who have advanced breast, lung, and colorectal cancer to identify potentially eligible candidates for the intervention utilizing EMR data from Parkland Hospital (See Aim 1 eligibility criteria). Once eligibility is confirmed the LHA will introduce the study to the patient and obtain informed consent. Each patient will be asked to identify a primary caregiver that will be able to participate in the intervention. The LHA will contact the patients' primary caregivers to confirm participation in the study and arrange a time to meet with both the patient and caregiver to conduct the intervention. We anticipate that 24 patient-caregiver pairs will receive the intervention (8 for each type of cancer). The LHA will meet with eligible patients and caregivers and assist them in watching the developed DVD segments. Afterward, the LHA will answer questions and provide additional information. They will tailor the discussion to the patient's values, preferences, concerns, and clinical circumstances. The primary process outcome tested will be the feasibility and acceptability of the intervention. Feasibility success will be measured by the number and rates of patients/caregivers who complete the intervention and follow-up interviews. The primary decision-making outcome is change in intent to discuss EOL care options based on the Transtheoretical Stages of Change Model (i.e., pre-contemplation, contemplation, preparation, and action). Secondary outcomes measured will include: knowledge of prognosis and EOL care options, decisional conflict, quality of life, and health care utilization. Other patient and treatment variables will also be collected, per the study protocol.