Researchers Test New Model for Enhancing Health Equity in Palliative Care

August 1, 2022
Hospice News
By Jim Parker

Four academic institutions are collaborating to test the ways community health workers could enhance palliative care for African American cancer patients.

The National Institutes of Health is financing the research, which includes the University of Alabama at Birmingham, Johns Hopkins Kimmel Cancer Center, the University of Colorado Anschutz Medical Campus, and Maryland-based TidalHealth Peninsula Regional. Three of these organizations will be enrolling patients in the study, with the University of Colorado team focusing on statistical analysis.

“The goal of this study is that they get to enhance the quality of care and reduce symptoms for African American patients who have advanced cancer and to make sure that the care that they’re getting is consistent with their goals — and connecting people with the relevant services,” Dr. Jean Kutner, professor of medicine at professor of medicine at University of Colorado Anschutz Medical Campus, told Hospice News. “So it could be that whole spectrum —palliative care early in the trajectory of the illness through end of life.”

The methodology centers around community health workers, non-clinicians who work to promote access to services, educate patients and families, and conduct outreach with underserved populations.

The four institutions will train these workers to advocate for greater access to palliative care among African American communities, as well as provide support and education to patients with advanced cancer and their caregivers.

The model is designed to help ensure patients are aware of the health care options that are available to them. Participating community health workers also engage with providers to identify the barriers to care that this population experiences and develop interventions, according to Dr. Fabian Johnston, associate professor of surgery and oncology at Johns Hopkins University.

“A community health worker — when integrated as part of the health care team or ancillary to the health care team — is extremely important,” Johnston told Hospice News. “They didn’t speak in medical jargon. They came from the communities. They were strong advocates and had worked to empower patients. They were about meeting people where they are, and that’s what palliative care does. I think this really is synergistic.”

Johnston, both a palliative care specialist and oncology surgeon, was a co-author of a previous study that examined this method and concluded that it showed promise, published last year in the Journal of Oncology Practice. That study examined outcomes for 24 patients, whereas the current project will occur at a much larger scale across a more diverse population.

As this work began, he reached out to potential partners to ensure that the study included a representative sample of African American communities. This includes those who live in rural or urban areas and different geographical regions, as well as encompassing a sizable range on the socioeconomic spectrum.

Participating institutions also needed to have a robust palliative care program as well as sufficient research capabilities, Johnston said.

One of the key aspects of this collaboration is that researchers are working in concert with representatives of the communities they hope to serve, according to Dr. Ronit Elk, professor of medicine and associate director for the Center of Palliative and Supportive Care at the University of Alabama at Birmingham.

“What I love about this particular study is that it’s actually going to spend at least 6 to 7 months of the first year talking to the people in the community,” Elk told Hospice News. “At each of the three sites, we will be partnering with a community advisory group. We will get their input to see whether this particular strategy works, what needs to be adjusted, etc.”

Among the goals of that engagement is the cultivation of trust. A long history of systemic racism has eroded trust in the health care system among communities of color, according to Elk. Rebuilding that trust will be key to fostering greater health equity, she said.

Data on pre-hospice palliative care utilization among African Americans are scarce, and to date research into that issue has been a mixed bag.

A number of studies have concluded that disparities do exist, and others have found that African Americans were equally likely to receive a palliative care consultation, according to a recent report from the Center to Advance Palliative Care (CAPC).

However, the bulk of these studies were limited in scope, focused on specific diseases or locales, and centered around hospital-based palliative care rather than services delivered in the community.

Complicating matters are the general lack of awareness or availability of palliative care among the general public as well as a large contingent of health care providers. The lack of a robust payment system for palliative care also creates barriers to access.

“I would definitely say that there are structural issues that influence or that result in some of those disparities that we’re seeing, including the availability of palliative care services,” Kutner said.

Many of these prior studies also zeroed in on hospice care specifically as opposed to palliative care prior to a six-month terminal prognosis.

When it comes to hospice in particular, the numbers paint a clearer picture.

About 82% of hospice patients in 2018 were White, compared to 8.2% for African Americans and 6.7% for Hispanics, according to the National Hospice & Palliative Care Organization. The total for all other racial or ethnic demographics totaled 3.1%.

A growing body of research also has found that disparities exist when it comes to the quality of hospice, palliative care, and/or pain management offered to African American patients.

African Americans are less likely to receive effective pain and symptom management than White patients, and often poor-quality clinician/patient communication, the CAPC report indicated.

“‘Disparities’ means ‘difference.’ It’s another euphemism,” Elk told Hospice News. “It’s always been the minoritized groups who get [worse] care. That’s the reality.”

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