Care for Our Elders/Wakanki Ewastepikte
- Need: To provide Lakota elders with tools and opportunities for advance care planning.
- Intervention: An outreach program in South Dakota helps Lakota elders with advance care planning and wills by providing bilingual brochures and advance directive coaches.
- Results: Care for Our Elders saw an increase in the number of Lakota elders understanding the differences between a will and a living will and the need to have end-of-life discussions with family and healthcare providers.
Evidence-levelEffective (About evidence-level criteria)
American Indian, Alaska Native, and Native Hawaiian 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 Caucasians 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 Indians 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 might be 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.
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
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.
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 actually 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, Avera's Walking Forward program, and Great Plains Tribal Chairmen's Health Board to collaborate on the development of a culturally tailored palliative care program on the Pine Ridge, Rosebud and Cheyenne River reservations. Planning is currently in process but delayed due to COVID-19.
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), 160-168. Article Abstract
Isaacson, M.J. (2017). Wakanki Ewastepikte: An Advance Directive Education Project with American Indian Elders. Journal of Hospice & Palliative Nursing, 19(6), 580-587.
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. 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.
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 Native American health issues but then speak with the spiritual healer or medicine man in a specific Lakota tribe. She asks how she can best approach a subject like Alzheimer's with a patient. When she meets with a patient, she invites the elder to bring family members and other support.
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 "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 change whatever they need to 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 InformationMary Isaacson, Associate Professor
South Dakota State University, College of Nursing
Aging and aging-related services
American Indian or Alaska Native
Culture and cultural competency
Hospice and palliative care
June 27, 2016
Date updated or reviewed
June 9, 2020
Suggested citation: Rural Health Information Hub, 2020. Care for Our Elders/Wakanki Ewastepikte [online]. Rural Health Information Hub. Available at: https://www.ruralhealthinfo.org/project-examples/913 [Accessed 2 December 2020]
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