Care for Our Elders/Wakanki Ewastepikte

Evidence-level

Effective (About evidence-level criteria)

Description

American Indian and Alaska Native elders seeking medical attention often experience cultural barriers. For example, while many Lakota elders are fluent in English, their healthcare providers often don't speak Lakota or ask if patients would like a translator. If patients have to hear difficult news, for example, they might prefer to hear it in their native language, since they don't have to mentally translate the doctor's words into Lakota first. Speaking and listening in Lakota becomes more personal, and the elders are better able to deal with the news.

In addition, the Lakota people, among other tribes, do not view property or wealth the same way white people often do. While Lakota elders may not see a need for a legal will explaining who will inherit what, their property will still be divided or transferred by the government.

Care for Our Elders began when a palliative care physician asked Associate Professor Mary Isaacson from South Dakota State University and her nursing students why American Indian patients from the western side of the state were traveling to Sioux Falls to receive palliative care and hospice care, when the majority of reservations are located in western South Dakota. This group met with healthcare, palliative care, and hospice care providers to discuss why this was the case. Many providers said that they were hesitant to broach the subject with their older patients, in case the suggestion of hospice care was interpreted as the providers giving up on their patients.

However, when this group discussed palliative and hospice care with Lakota healthcare professionals in the region, they explained, "No, this is something we need." Isaacson then met with Lakota elders and discussed how palliative and hospice care might work on the reservations and what the elders wanted from those programs. The elders saw death not as giving up, but as another cycle of life.

Care for Our Elders collaborates with local organizations and branches such as the Oglala Sioux Tribe Health Administration, Oglala Sioux Tribe Health Education, Dakota Plains Legal Services, and Indian Health Service in order to increase awareness of the need for advance care planning by American Indian elders in South Dakota.

The program was initially funded by a $2,500 Delores Dawley Faculty Seed grant and is now supported by a $10,000 grant from the South Dakota Cancer Coalition.

Services offered

Three Pine Ridge Reservation elders received training to become advance directive coaches. The program has found that elders are more receptive to coaches from their culture than to coaches from outside their culture. These coaches:

• Delivered Public Service Announcements on the local radio station
• Developed a 30-minute informational television program with the Oglala Lakota College media personnel
• Traveled to community centers and health fairs around the Pine Ridge Reservation to inform fellow elders about their palliative care and end-of-life options and resources

In addition, the advance directive coaches and Isaacson designed a new advance directive brochure. This brochure, illustrated by a Lakota artist, translates key terms into Lakota and medical jargon into everyday language. Social workers and nurses use the brochures to talk elders through choosing a Healthcare Decision Maker and why it's important. In addition, the brochure provides the names of Indian Country partners and contact information for Dakota Plains Legal Services.

In turn, Dakota Plains Legal Services provides free services to any Lakota elder aged 62 or older and will drive to any community where at least four individuals are requesting their services. For Pine Ridge, a reservation that encompasses over 2 million acres, Dakota Plains' offer can provide immense relief to elders without transportation.

Results

Since the program's inception, the three advance directive coaches have traveled over 1,000 miles, visiting 11 different communities and completing 229 face-to-face contacts. The advance directive coaches completed contact sheets, which asked elders whether they had ever heard of palliative care or whether they had heard of or had a living will.

Before Care for Our Elders, 84% of those surveyed had never heard of a living will, and only 1 of the 229 elders had a living will. None of those surveyed had heard of palliative care. Thanks to the program, more Lakota elders understand the differences between a will and a living will as well as the need to have end-of-life discussions with family and healthcare providers.

Massachusetts General Hospital became aware of Care for Our Elders and invited Isaacson, the Avera health system's Walking Forward program, and Great Plains Tribal Leaders' Health Board to collaborate on the development of a culturally tailored palliative care program on the Pine Ridge, Rosebud, and Cheyenne River reservations. The research team completed focus groups with cancer survivors and family caregivers and completed interviews with oncology and primary care providers along with tribal healers and leaders to understand the needs, barriers, and resources needed in order to create culturally tailored palliative care.

The Wawokiya Health Advocate (WHA) clinical trial in Pine Ridge, Rosebud, and Cheyenne River communities ended in March 2024, and analyses of results are currently in progress. The WHAs conducted a needs assessment of patients and families, assessing for distress (physical, emotional, spiritual) and connecting them to resources to improve quality of life as needed. These resources are varied and can include filing the necessary documents to obtain an air conditioner or to obtaining durable medical equipment. The WHAs are also a listening ear for patients and families, where they can share their hopes and wishes regarding care.

Dr. Isaacson and Dr. Karla Hunter (South Dakota State University, communications professor) and their collaborative partner, Great Plains Tribal Leaders Health Board, are completing a clinical trial testing the efficacy of a culture-centric palliative care message. The team and their Community Advisory Board members from Pine Ridge, Rosebud, and Cheyenne River developed a 2-minute video message to teach about palliative care. The message was developed after the team completed Talking Circles in the three reservation communities to learn more about serious illness care from the perspectives of persons with serious illness and their loved ones. Results are pending.

For more information about pre-program focus groups and program results, respectively:

Isaacson, M.J. (2018). Addressing Palliative and End-of-Life Care Needs with Native American Elders. International Journal of Palliative Nursing, 24(4), 160-68. Article Abstract

Isaacson, M.J. (2017). Wakanki Ewastepikte: An Advance Directive Education Project with American Indian Elders. Journal of Hospice & Palliative Nursing, 19(6), 580-87. Article Abstract

For more information about the WHA clinical trial:

Isaacson, M.J., Duran, T., Johnson, G.R., Soltoff, A., Jackson, S.M., Purvis, S.J., … & Daubman, B-R. (2023). Great Plains American Indians' Perspectives on Patient and Family Needs Throughout the Cancer Journey. Oncology Nursing Forum, 50(3), 279-89.

Daubman, B-R., Duran, T., Johnson, G., Soltoff, A., Purvis, S., Sargent, M., … & Isaacson, M.J. (2023). "You Can't Record That!" Engaging American Indian Traditional Healers in Qualitative Research. Journal of Pain and Symptom Management, 65(5), e507-09.

Isaacson, M.J., Duran, T., Johnson, G., Soltoff, A., Jackson, S., Petereit, D., … & Daubman, B-R. (2022). "Calling the Spirit Back:" Spiritual Needs Among Great Plains American Indians. Journal of Pain and Symptom Management, 64(3), 268-75.

Soltoff, A., Purvis, S., Ravicz, M., Isaacson, M.J., Duran, T., Johnson, G., … & Daubman, B-R. (2022). Factors Influencing Palliative Care Access and Delivery for Great Plains American Indians. Journal of Pain and Symptom Management, 64(3), 276-86.

Challenges

Implementing Care for Our Elders took longer than anticipated. The advance directive coaches and Isaacson went through the Oglala Sioux Tribal Research Review Board (OSTRRB) and had to start their educational program two months later than planned. Since this step was important to the group, they simply readjusted their schedule and began the educational programs, which included some data collecting, in mid-August instead of June of that first year. Due to changes within health administration, the group needed to present their proposal again so that new staff members were aware of the program.

Other barriers in carrying out the program include the immense size of the reservation and weather conditions that prevent program coordinators and participants from traveling.

Replication

Healthcare providers working with patients from other cultures need to move from broad generalizations about a culture to more specific information about a group or patient within that culture. Isaacson, for example, might read about American Indian health issues but then speak with the spiritual healer or medicine man from a specific Lakota tribe. She asks how she can best approach a subject like Alzheimer's with a patient. When she meets with patients, she invites them to bring family members and other support.

When delivering difficult news, healthcare professionals should ensure that family is present. It is also culturally appropriate to ask if they would like to pray before the discussion. The prayer can be generic and offered to the creator. American Indian patients should be encouraged to ask questions, as they often defer to the provider as a sign of respect.

Providers should also be willing to take on the role of facilitator or encourager and leave the role of doer to the elders. Care for Our Elders works because it stems from what the elders want and need, not from what others want for them.

In addition, program coordinators recommend involving the community every step of the way. Letting the community lead the program helps to ensure that it is done in the most culturally respectful way possible.

The advance directive brochure is now available via the South Dakota Department of Health educational materials catalog (under the category "Cancer") and can be downloaded or ordered free of charge. The brochure is not copyrighted, so any group can borrow, use, or distribute the brochures and make any changes in order to make the brochures specific to their targeted audience.

For those who want to train advance directive coaches or provide advance directive education, the National Hospice and Palliative Care Organization offers useful information in plain language. Isaacson used information from this and other websites to create packets for the advance directive coaches. They talked through the information together, and the advance directive coaches were able to keep the packets for future reference.

Contact Information

Mary Isaacson, PhD, RN, RHNC, CHPN, FPCN, Associate Professor
South Dakota State University, College of Nursing
605.670.0975
mary.isaacson@sdstate.edu