Newswise — Three Lakota elders are discussing advanced care planning and wills with their peers on Pine Ridge and other South Dakota reservations through an outreach project done in collaboration with South Dakota State University. In summer 2014, assistant nursing professor Mary Isaacson met with Pine Ridge Reservation elders to discuss end-of -life care.
What emerged from those discussions was the overwhelming need for advanced-care planning or advanced directives, explained Isaacson. She was recently appointed to a national panel on palliative and hospice care created by the American Nurses Association and the Hospice and Palliative Nurses Association.
By July 2015, Pine Ridge elders Patricia Catches The Enemy, Valaria Red Cloud and Garfield Apple had worked with Isaacson to develop a Lakota-specific advanced directive brochure and received training to be advance directive coaches. While attending events, such as pow-wows and flea markets, and visiting community centers where elder meals are served, they hope to start conversations about advanced care planning and wills.
The initial work was done through a $2,500 Delores Dawley Faculty Seed grant. A larger grant from the South Dakota Comprehensive Cancer Control Program supports the outreach program.
Adapting approach to Lakota cultureIsaacson worked with the Lakota elders to adapt a South Dakota Comprehensive Cancer Control Program brochure to their needs and to incorporate other national hospital and palliative care organization guidelines. The group simplified the terminology, translated key points into the Lakota language and contracted with a Lakota artist for illustrations.
For many elders, Lakota is their first language, Isaacson explained. “I never thought of it—they are bilingual. Yet, because they are fluent in English, we neglect to ask if they would like an interpreter.” In many cases, particularly when faced with bad news, the Lakota language is the better choice. That’s why the brochure contains key messages in Lakota.
Even when they go to the Indian Health Service facility, having those conversations in Lakota is not an option, she pointed out. Indian Health Service has also asked to reprint the brochure and the trained elders will accompany them to their distribution sites.
When choosing the artwork, the elders wanted the moccasins on the brochure to symbolize the last part of their life journey. “The moccasins needed to be old and worn because they are,” recalled Isaacson.
In their Care for Our Elders or Wakanki Ewastepikte brochure, the elders emphasized the message: “If we do not make these choices, the government will make them for us.” Isaacson explained that the issue about property and sovereign nation status is unique to Native Americans because materialism or wealth is not part of their cultural belief system.
Encouraging action“Remoteness is one of the major challenges,” said Isaacson, with villages and towns scattered across over more than 2 million acres on Pine Ridge, the second-largest reservation in the country.
However, Dakota Plains Legal Services of Pine Ridge is providing free services to those 62 or older wanting to write wills and advanced directives. If groups of four to five individuals in an outlying community need their services, Dakota Legal will come to them.
“It’s about raising awareness,” Isaacson explained. “It’s about having the conversation with family members and providers.”
Lakota elder Catches The Enemy, a breast cancer survivor who worked with the Oglala Sioux Tribal burial program in the 1990s, said she wants people to know the options they have and encourages them to plan ahead.
“I hope what we do can be carried on. It is much needed, she added.
About South Dakota State UniversityFounded in 1881, South Dakota State University is the state’s Morrill Act land-grant institution as well as its largest, most comprehensive school of higher education. SDSU confers degrees from eight different colleges representing more than 175 majors, minors and specializations. The institution also offers 32 master’s degree programs, 15 Ph.D. and two professional programs. The work of the university is carried out on a residential campus in Brookings, at sites in Sioux Falls, Pierre and Rapid City, and through Cooperative Extension offices and Agricultural Experiment Station research sites across the state.