African Americans are 50% less likely to access or receive palliative care than white patients due to racism, a lack of cultural understanding among physicians, and a history of distrust of the healthcare system among African American patients. Therefore, the last weeks and months of the lives of these patients, as well as those of their relatives, may be further 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 improve palliative care services in African-American cancer patients at cancer centers across the country.
Palliative care has been repeatedly shown to reduce physical and psychological symptoms, provide personalized care, and improve quality of life for patients with serious illnesses. 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 sense of their illness, suffering, and death, and strongly influence their responses to diagnosis, illness, and death. their treatment preferences. 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 the lived experience of racism. A lack of recognition of these cultural values can compromise care.
Through this grant, researchers work to overcome cultural, environmental, and economic barriers that limit access to palliative care 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., lead researcher at the site. of UAB, Associate Director of 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 to engage the community and listen 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 in the first phase of the study, we are collaborating with community members who understand its cultural values and live experiences.”
CHWs are culturally competent, non-clinical community workers whose role is to promote access to services, provide health education, support care delivery, and promote advocacy with underserved populations. CHWs improve care for patients with advanced chronic conditions, and their impact on improving care for these patients is well established.
With this funding, researchers have developed an integrated CHW model – titled Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care, or DeCIDE PC – that uses CHWs as members of the care team. to improve palliative care outcomes for underserved patients with advanced palliative care. 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 to their caregivers. CHWs help people in their communities know what resources are available to them and work with healthcare providers in these areas to help them understand the barriers to palliative care and develop a solution to overcome those barriers.
“The path to health equity begins with partnership with the community,” Elk said. “This approach is based on a collaborative partnership between community members and academia as a way to find solutions to a problem that affects the community.”
Through their research, Elk and colleagues hope to establish that practical CHW-based palliative care programs for patients and caregivers are effective in supporting patient quality of life, symptom management, and achieving care that matches. to their goals. They also hope to develop generalizable knowledge of how circumstances in these communities affect the implementation of CHW-based palliative care programs.
“Receiving a diagnosis of advanced cancer is an especially vulnerable time in life, and we know that African American patients are less likely to use palliative care,” said Fabian Johnston, MD, principal investigator and associate professor of surgery. and oncology at Johns Hopkins University. “In this study, we will empower African American patients with advanced cancer by adding a community health worker to their care team. We will then explore whether the support provided by community health workers can help patients achieve better quality of life, better control of their symptoms, and greater satisfaction with their care. We are proud to offer this intervention at three different study sites and ultimately hope to improve an important area of health disparities.
Researchers will measure the success of CHW-based palliative care programs through patient-reported outcomes, advanced care planning completion rates and resource utilization, and many other factors. The primary outcome of the study is quality of life as measured by the functional assessment subscale of chronic disease palliative therapy at six months. These results will be examined from a multitude of perspectives to determine the effectiveness of these programs.