Associate professor Mary Isaacson of the South Dakota State University College of Nursing in Rapid City is part of a national research team that will develop culturally appropriate Native American palliative care programs. Palliative care provides support for those receiving treatment for serious life-threatening illnesses, which then helps improve the quality of life for the patient and families.
The project, which targets the Oglala, Sicangu and Cheyenne tribes in South Dakota, is funded by a five-year, $3 million National Cancer Institute grant through Avera Health’s Walking Forward. The Avera research program has been improving cancer care in communities on the Rosebud and Pine Ridge Reservations for some time, but this will be its first project on the Cheyenne River Reservation.
In addition, 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 will be working on the project. Eight hospitals with more than 50 beds in South Dakota have palliative care programs, according to a Center for Advanced Palliative Care report.
“Indian country is rural and frontier, as is much of the state, but there are even greater challenges on Native American reservations because the lack of infrastructure is even more pronounced,” Isaacson said. She has been doing research on American Indian health and palliative and end-of-life care for more than 10 years.
Most recently, she worked with Oglala elders on an advanced care directive project that also addressed the need for palliative and end-of-life care on the Pine Ridge Reservation. The closest palliative care program at Rapid City Regional Health is more than an hour’s drive from Pine Ridge.
Developing culturally sensitive approach
“Palliative care and hospice are culturally relevant and supported within Lakota culture,” Isaacson said. “However, the approach used when discussing life-limiting illnesses “still requires great cultural sensitivity.”
Isaacson will work with Tinka Duran, director of prevention programs for the Great Plains Tribal Chairman’s Health Board and an enrolled member of the Rosebud tribe, to explore what the palliative care needs are among the three tribes, recognizing that a culturally tailored program may look different for each tribal community.
They will visit with cancer patients and their caregivers, as well as tribal leaders, spiritual leaders and healers.
“We need to make sure we are engaging with individuals in the most respectful manner,” Isaacson said. That applies to both the needs assessment and to palliative care delivery.
“In our society, we feel that quickly getting to the heart of the matter with the patient is so important, but in the Native American context, talking to the family as well as the patient helps build trust,” she pointed out.
In addition, “sometimes we need to speak in third person—some traditional individuals feel if you say something bad out loud that it will come true.” However, she noted, the approach must vary based on how traditional—or nontraditional—the individuals and their families are.
After completing the needs assessments, the researchers will develop the palliative care programs in year two. During years three and four, Isaacson anticipates the team will use a staged delivery approach, likely starting with the Sicangu at Rosebud. That then allows the researchers to adjust the program before rolling it out for the Oglala at Pine Ridge and finally at the Cheyenne River Reservation.
Isaacson and Duran will also be working with Dr. Francine Arneson, a palliative care specialist at Avera Health, and two Massachusetts General physicians who have helped start palliative care programs in Honduras and Jamaica. “When more advanced palliative care is necessary (than can be locally provided), we will need to figure how and where patients can get more specialized care,” Isaacson explained.
In addition to providing telehealth services, Massachusetts General also has a rural health fellowship through which their physicians support Indian Health Services on the Rosebud Reservation. This provides some stability for the Rosebud Comprehensive Health Care facility, which has struggled with limited funding and high turnover rates. “It’s very impressive,” Isaacson said. “It will be an interesting partnership.”