A national team of researchers are collaborating to improve access to palliative care among tribal communities in the United States.
The project will focus on the Cheyenne River, Rosebud and Pine Ridge Reservations in South Dakota. It follows previous work to improve cancer care on the Rosebud and Pine Ridge reservations in the same state. A five-year $3 million grant from the National Cancer Institute and Avera Health’s Walking Forward program.
The team includes representatives from the South Dakota State University College of Nursing, the Great Plains Tribal Chairmen’s Health Board, the Indian Health Service Great Plains Region and the Rural Health and Palliative Care programs at Massachusetts General Hospital.
“Here in South Dakota, if you look at where the actual palliative care programs are relative to the location of the reservations, you’re looking at well over 60 to 100 miles or more for access,” said Mary Isaacson, associate professor of graduate nursing at South Dakota State University, a co-investigator on the project. “Infrastructure issues are also very challenging for our tribal communities. The Indian Health Service is always severely underfunded.They barely have enough money to do preventative care which they don’t, let alone try to provide specialty palliative care services.”
Hospice utilization is very low among the Native American population, representing only 0.4% of hospice patients during 2017 compared to more than 82% for caucasian patients and slightly above 8% for African Americans.
A 2014 literature review by the U.S. Centers for Medicare & Medicaid Services (CMS) found that, nationwide, a lack of cultural sensitivity among health care providers often dissuaded individuals among the First Nations from seeking hospice care, indicating that culturally sensitive care could increase access among that demographic.
Other barriers among the tribes included a level of discomfort with the presence of chaplains, particularly if the patient and family are not members of that faith. In addition, some see the involvement of social workers as threatening, associating them with government agencies perceived as disruptive.
Key to the effort will be development of palliative programs that are culturally appropriate for tribal patients, acknowledging that the needs and messaging may vary among different tribal communities. The current effort is focused on members of the Oglala, Sicangu and Cheyenne tribes. Researchers will visit with cancer patients and their caregivers, as well as tribal leaders, spiritual leaders and healers.
“We need to ensure that the approach to palliative care services is culturally congruent with their tribal life ways, because we have to recognize that the trust of health care [in tribal communities] is very limited, because services haven’t been delivered in a very equitable fashion,” Isaacson said. “Many [health care providers] are white, and we’re not from the same population. That can also be a barrier because there’s a lack of trust with the health service provider that doesn’t look like you or speak your language.”
The first year of the project will focus on assessing the palliative care needs of the three tribes, with program development set to begin in year two. During the third and fourth year, the team will focus on implementation of their findings in a staged delivery approach.