African Americans are 50 percent less likely to access or receive palliative care than white patients because of racism, a lack of cultural understanding among physicians and a history of distrust in the health care system among African American patients. As a result, the last few weeks and months of life of these patients, and those of their loved ones, may be additionally burdened.
The University of Alabama at Birmingham, in collaboration with Johns Hopkins Kimmel Cancer Center, University of Colorado Anschutz Medical Campus and TidalHealth Peninsula Regional, received a multi-site grant to study how to enhance palliative care services among African American cancer patients at cancer centers across the country.
Palliative care has been repeatedly demonstrated to reduce physical and psychological symptoms, provide personalized care, and improve quality of life for patients with serious illness. It can also help prevent unnecessary suffering at the end of life.
Culture, religion/spirituality, and trust in health care systems shape how people make meaning of their illness, suffering and dying, and strongly influence their responses to diagnosis, illness and their preferences for treatment. Yet, historically, palliative and end-of-life care has been rooted in white, middle-class cultural and religious values, with little recognition of cultural differences and lived experience of racism. A lack of recognition of these cultural values may compromise care.
With this grant, researchers are working to address the cultural, environmental and economic barriers that limit the palliative care access in the African American community through the use of community health workers.
“This is such an important step toward achieving health equity for African Americans with serious illness,” said Ronit Elk, Ph.D., principal investigator at the UAB site, associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care. “The key to addressing these health inequities is involving the community and listening to their feedback. By partnering with community health workers, as well as asking for and receiving input from the African American community in Birmingham, as we will do in the first phase of the study, we are collaborating with members of the community who understand its cultural values and lived experiences.”
CHWs are non-clinician, culturally competent, community-based workers whose role is to promote access to services, provide health education, support care delivery and promote advocacy in underserved populations. CHWs enhance care for patients with advanced chronic diseases, and their impact on improving care for these patients is well-established.
With this funding, researchers developed an integrated CHW model — titled the Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care, or DeCIDE PC — that uses CHWs as care team members to improve palliative care outcomes for underserved patients with advanced-stage illnesses. In DeCIDE PC, CHWs are trained to provide advocacy, support, motivation, empowerment and education regarding palliative care and end-of-life care to African American patients with advanced cancer and their caregivers. CHWs help people within their communities know what resources are available to them and work with health care providers in those areas to help them understand the barriers to palliative care and develop a solution to overcome these barriers.
“The path toward health equity begins with partnering with the community,” Elk said. “This approach is based on a collaborative partnership between community members and academia as a way to finding solutions to a problem that affects the community.”
Through their research, Elk and her colleagues hope to establish that practical CHW-based palliative care programs for patients and caregivers are effective in supporting patients’ quality of life, symptom management and achievement of care that aligns with their goals. They also hope to develop a generalizable knowledge about how circumstances in these communities affect the implementation of CHW-based palliative care programs.
“Being diagnosed with advanced cancer is a particularly vulnerable time in life, and we know that African American patients are less likely to use palliative care,” said Fabian Johnston, M.D., principal investigator and associate professor of surgery and oncology at Johns Hopkins University. “In this study, we will empower African American advanced cancer patients by adding a community health worker to their care team. We will then investigate whether the support that community health workers provide can help patients achieve higher quality of life, better control of their symptoms and higher satisfaction with their care. We are proud to offer this intervention at three different study sites and hope to ultimately improve an important area of health disparities.”
Researchers will measure the success of the CHW-based palliative care programs through patient-reported outcomes, completion rates of advanced care planning and resource utilization, and many other factors. The primary outcome of the study is quality of life as measured by the Functional Assessment of Chronic Illness Therapy-Palliative Subscale at six months. These outcomes will be examined from a multitude of perspectives to determine the effectiveness of these programs.
In addition to Elk and Johnston, Robert Joyner, Ph.D., who serves as the site PI at TidalHealth, and Jean Kutner, M.D., from the University of Colorado for the Palliative Care Research Cooperative Group are involved in the study. Other researchers for this study include Alison Woods, M.D., Gayane Yenokyan, Ph.D., Jill Owczarzak, Ph.D., Lisa Cooper, M.D., Sherry Leung and Amn Siddiqi and Lynne Armiger, CRNP.