Channing E. Tate, PhD, MPH, University of Colorado Cancer Center Rising Star, has seen through her personal and professional experiences how aging populations and communities of color often fall through the cracks of health care, especially at the end of life.
Although hospice use has grown over the last several decades, it is still an underutilized health care service, especially in communities of color. The reason for underuse are numerous and complex, but Tate believes that lack of knowledge of hospice care and misconceptions about hospice are key barriers to enrollment.
Hospice is specialized medical care that supports people near the end of life. Anyone with a life-limiting illness is eligible to receive hospice care, but the top three diagnoses of hospice recipients are cancer, Alzheimers Disease and Related Dementias (ADRD), and heart disease. Tate focuses on eliminating disparities and promoting health equity in Black Americans who disproportionately suffer the burden of cancer and heart disease.
With recently awarded support from the Cambia Health Foundation, Tate, an assistant professor of internal medicine and geriatric medicine in the CU School of Medicine, is embarking on nationwide research to begin to better understand the barriers to hospice us in the Black community. She was named one of 12 Sojourns Scholars, a cohort representing emerging palliative care leaders and researchers.
As a Sojourns Scholar, Tate receives a two-year, $180,000 grant to conduct an innovative and impactful project tied to a leadership development plan that “positions the scholar for growth as a national leader in the field of palliative care,” according to the Cambia Health Foundation.
Tate, an investigator at the Adult & Child Center for Outcomes Research & Delivery Science (ACCORDS) and the Colorado Program for Patient-Centered Decisions (CPPCD) on the CU Anschutz campus, will expand on a study she initiated during her doctoral research, surveying older Black adults about their knowledge of and feelings toward hospice care. She aims to recruit 400 Black adults age 65 and older from across the United States.
“One of the most important aspects of the study is understanding self-efficacy,” Tate explains. “How empowered does a person feel to make decisions about hospice and end-of-life care?”
Drawing from personal experience
While conducting her doctoral research, Tate surveyed 144 older Black adults in Colorado about hospice care, including what their previous experiences with it had been and whether they’d consider it for themselves. Hospice care focuses on quality of life for people experiencing advanced, life-limiting illness and provides support and resources to their caregivers.
Some participants in Tate’s research revealed certain mistrust in the health care system and in hospice, and certain beliefs about hospice as something that hastens death. Tate even experienced initial resistance to hospice care in her own family when her mother neared the end of her life.
“With my mom, it all just happened so fast, so at first it was like, ‘Hospice, what’s that?’” Tate remembers. “But once she was receiving hospice care and we saw that we could get help doing those daily living things like bathing and toileting and managing the meds, it was such a relief. It really helped us come to terms with the fact that mom was going to transition, and then we received wonderful support after that transition.”
When Tate’s father neared the end of his life following a lung cancer diagnosis, Tate and her sisters drew on their familiarity and comfort with hospice “and it was one of the great joys of my life that my father was able to die in his home that he loved and cherished,” she says. “Hospice brought all the equipment we needed and he died in my arms with all of our family there. At the time my aunt said, ‘Thank you for doing this for my brother, this was really beautiful.’”
Empowered in decision making
However, through her research Tate has learned that significant stigmas about hospice care exist within communities of color. In many communities, including Black, Hispanic, and Native American, significant priority is placed on taking care of loved ones at home.
“I was hearing that people saw hospice as a physical place that your loved one goes to die, and there often wasn’t the knowledge of hospice as a system of care that can happen in the home,” Tate says. “Beyond issues of mistrust in the health care system, there wasn’t great awareness of the amount of control you can have with hospice, or an understanding that Medicare pays 100% of hospice care.”
By expanding her research nationally, Tate will draw deeper understanding of regional differences that may exist in perceptions and understanding of hospice, especially in areas with larger Black populations. Participants will be randomized to a group that reviews either a hospice decision making tool or an attention control activity, and immediately after surveyed about their knowledge, opinions, and self-efficacy relating to hospice. They will be surveyed again 30 days later.
Ultimately, Tate aims to follow up with in-person interviews after analyzing the data drawn from the 400 participants’ surveys.
“Something that’s really motivating me is we are approaching a crisis in this country,” Tate explains. “Black adults are one of the fastest groups reaching the age of 65 and we know Black adults approaching 65 experience worse mortality and morbidity from the top diagnoses of hospice enrollment.
“One of the studies I did previously was asking people about mistrust in health care. Something I tell medical students I teach is that the Black adults they’re seeing in clinic who are 65 may not have had regular health care until they turned 65 and got Medicare. So when these students see these folks in clinic, it is often the first time in their lives they’ve had routine health care. When I asked the older Black adults about health care when there were young, some mentioned receiving the polio or smallpox vaccine at school when they were kids and that’s it. Few mentioned receiving primary care.”
Tate adds that while she personally is a strong proponent of hospice care, her aim is not to steer people of color toward one particular end-of-life choice “but to create opportunities for education so that people are informed about their choices and empowered to make decisions at one of the most vulnerable and profound times of life.”