End-of-Life Care for African Americans

Racial differences in health care are documented across the health care continuum and persist in aging and end-of-life (EOL) care. African Americans (AA) and other underrepresented minorities often choose more aggressive therapies at the end of life and are less likely to utilize hospice care in the terminal stages of their illness. Potential reasons for these disparities include: lack of knowledge of and misperceptions about palliative and hospice care, spiritual beliefs, and mistrust in the health care system, among others. Despite the literature on disparities in end-of-life (EOL) care and reasons for underuse and the presence of national EOL care guidelines, attempts to address this problem have been limited and often not rigorously evaluated. The majority of interventions to promote EOL care were done in majority populations and focused predominantly on trying to change physician awareness of patient's pain, symptoms, and values or to change physician communication behavior. While these early studies made tremendous contributions to the study of EOL care and the needs of the terminally ill, the interventions associated with these studies did not reach their desired effectiveness. The investigators propose a different strategy that would focus specifically on previously identified barriers to utilization of advance directives, palliative care, and hospice care among African Americans - including physicians' difficulty and discomfort with prognostication, AA patients' knowledge, attitudes and beliefs towards hospice and palliative care, conflict between patients' spiritual beliefs and the general hospice and palliative medicine philosophy of care, and medical mistrust. The goal of this project is to improve methods of prognostication for physicians and increase awareness of EOL care options for AAs. To overcome the dual challenges of physicians' reluctance to discuss EOL care and patients' discomfort in engaging in such conversations, the investigators will use the electronic medical record (EMR) to automatically identify AA patients with life-limiting illness who are eligible for counseling about EOL care options. To change knowledge and attitudes toward EOL care options among AA patients, the investigators will design a culturally sensitive intervention that will combine multimedia materials and a culturally concordant lay health advisor who will deliver tailored education and counseling.

Sex

All

Minimum age

21 Years

Inclusion Criteria:

Aim 1 patients must:

1. receive their care at Parkland and be diagnosed with advanced cancer (breast, lung, or colon);
2. self-identify as AA;
3. be proficient in English;
4. be competent to give informed consent; and
5. have no evidence of cognitive impairment (Mini-Cog score of ≥3 or 1-2 with normal clock draw).

Aim 2 Patients must:

1. be hospitalized at Parkland
2. be diagnosed with advanced cancer (breast, lung, or colon)
3. self-identify as AA;
4. be proficient in English;
5. be competent to give informed consent;
6. have no evidence of cognitive impairment (Mini-Cog score of ≥3 or 1-2 with normal clock draw); and
7. have never received palliative or hospice care.

All Caregivers (Aim 1 and 2) must be:

1. identified by the selected patients as their primary caregiver;
2. be 21 years of age or older;
3. proficient in English; and
4. competent to give informed consent.

For the expert provider focus group, participants must be a health care provider (physician, nurse practitioner, chaplain, social worker, nurse) who works within hospice and palliative medicine.

(Note: patients who enter palliative care or hospice during follow-up interviews will be allowed to remain in the study)

Exclusion Criteria:

For patients:

1. identify with a race other than African American or
2. have a diagnosis other than advanced breast, lung, or colorectal cancer.