End-of-Life Curriculum for African-Americans

by Richard Payne

I am an African-American physician who has practiced in academic environments for my entire career. I have also experienced firsthand the struggles of fellow African American patients and families with end of life decision-making. Therefore I was particularly interested in providing educational and training opportunities for colleagues that would improve their skills, competency and confidence to address end of life concerns in African American patients and families.

For the past 20 years or so, we have had what could be called a national movement in end-of-life care in this country. While much work has been accomplished, many of us in the research field perceived a gap in our national discourse and educational efforts of health care providers. This gap related to the voice of medically under-served communities—particularly ethnic minority communities of color such as African-American, Latino and Asian communities. Our clinical experiences supported empirically-based research studies that documented disparities in utilization of hospice and palliative care services in these communities. The sources of these disparities are complex. They are related to misunderstandings of the goals of such care as well as concerns about the ability and relative unwillingness of providers to provide care in a manner that respects deeply held cultural, religious and other personal values.

Working with colleagues at Howard University College of Medicine, we secured a grant from the Robert Wood Johnson Foundation to conduct a needs assessment and write a curriculum to address issues of cultural and spiritual beliefs, preferences for care, mistrust of health care institutions, and communication needs of African Americans facing end of life decisions. We named this curriculum APPEAL (A Progressive Palliative CareEducational Curriculum for African Americans at Life’s End), which is taught in eight modules over one and a half days of instruction. Examples of the modules include Culturally Appropriate Communication, Patient-Centered Decision Making, Hospice-Contemporary Challenges, and Spirituality in End-of-Life Care.

The curriculum is written from an interdisciplinary perspective—not just for physicians—and combines didactic educational materials, with interactive learning activities and discussion and processing of powerful stories and images of patients, family members, clinicians, pastors and chaplains concerned about improving palliative and end of life care for African-American patients and communities.

A unique aspect of this curriculum is an explicit focus on religious and spiritual views of African Americans, a major factor influencing attitudes and preferences for care at the end of life. Participants are also given a DVD, titled “When We are Asked,” which is filled with powerful images and visual stories from patients, families, doctors, chaplains, pastors and others that personalize the concerns of African Americans dealing with serious illness. These images, along with the African-American faculty that teach the curriculum, provide a truly authentic voice of the community. Participants have provided feedback that the curriculum not only improved their knowledge and skills concerning palliative care, but also provided opportunities for personal reflection and growth concerning their duties and responsibilities as professional caregivers.

APPEAL® is one of the signature programs of the Duke Institute on Care at the End of Life. We collaborate with a team of instructors that include nurses, physicians, chaplains, hospice and health care administrators. In the past five years, working with this interdisciplinary faculty of instructors, we have partnered with home care and hospice programs and hospitals and health systems to sponsor the training of hundreds of health care providers, administrators, family caregivers, chaplains and pastors in every region of the United States.

We have come a far way since end of life issues first garnered national attention, and with work like APPEAL®, we hope to continue this work to all neighborhoods and people.

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