African Americans face lower quality end-of-life care and are less likely than whites to use hospice or complete advance care planning. Duke University’s Dr. Kimberly Johnson is addressing this disparity by partnering with AME Zion churches across North Carolina to provide access to these services.
Since arriving at the Duke School of Medicine in 1997, Dr. Johnson has focused her research on health disparities concerning end of life care. “People understood a lot about disparities in disease prevention and chronic disease management,” she says, “but there had been little attention to racial and ethnic disparities for people with serious illness approaching end of life.”
For example, interventions that improve the quality of care for seriously ill patients—like hospice and advance care planning—are used by ethnic and racial minorities at significantly lower rates.
Johnson’s work uncovered various factors that contribute to these end-of-life disparities among African Americans, including religious beliefs, discomfort discussing death, a strong desire for aggressive care at the end of life, and distrust of the medical system. She showed that it is the combination of these cultural beliefs—not any one of them alone—that added up to African Americans being less likely to pursue hospice or participate in advance care planning.
Some of her research has focused on finding ways to increase the use of hospice, palliative care, and advance care planning among African Americans through education, partnerships with faith communities, and increasing the percentage of African American hospice workers
To address these challenges Dr. Johnson is developing and implementing a faith-based palliative care education program with funding from AVDF. The proposed project will leverage the influence and resources of a network of AME Zion churches across North Carolina through an existing partnership with AME Zion HEAL (Health Equity Advocates and Liaisons).
The partnership includes a network of 18 faith leaders representing 17 predominantly African American churches in the state. The churches are actively engaged in efforts to reduce health disparities through their socio-cultural and spiritual work. The partnership between Duke and AME Zion HEAL will further this work as it relates to palliative care and advance care planning. The aim of the project is to reduce racial disparities in palliative care for African Americans by developing and implementing a sustainable, faith-based model of palliative care education and advance care planning which starts within African American churches and extends to the community.
The research team will utilize focus groups and surveys to assess spiritual and cultural beliefs of the faith leaders and congregants. The information gathered will then inform a culturally tailored, faith-based palliative care education program. Following the creation of the program, Duke and AME Zion HEAL will implement the program across the 17 partner churches.