Helping Lakota elders with advance care planning

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in, Journal of Active Aging, Cancer Today, Kaiser Health News, the Connecticut Health I-Team and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Photo: Mary IsaacsonPowwows provide a good venue for Pine Ridge elders to discuss advanced care planning and wills.

Photo: Mary IsaacsonPowwows provide a good venue for Pine Ridge elders to discuss advanced care planning and wills.

A unique outreach program is helping elders of the Lakota nation to address issues of palliative and end of life care among residents of reservations throughout South Dakota. The program incorporates culturally appropriate language and uses peer educators to promote advance care planning and wills.

When Mary Isaacson, an assistant nursing professor at South Dakota State University, began exploring the issue with older adults from the Pine Ridge reservation in 2014, she found an overwhelming need for education and materials. Within a year, Pine Ridge elders Patricia Catches The Enemy, Valaria Red Cloud and Garfield Apple collaborated with Isaacson to develop a Lakota-specific advanced directive brochure and received training to be advance directive coaches. While attending events, such as powwows and flea markets, and visiting community centers where elder meals are served, they hope to start conversations about advanced care planning and wills.

Adapting approach to Lakota culture

Isaacson, with funding from the South Dakota Department of Health’s Comprehensive Cancer Control program, worked with the Lakota elders to adapt a health department cancer brochure to meet 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. So the brochure contains key messages in Lakota.

“It’s about raising awareness,” Isaacson said. “It’s about having the conversation with family members and providers.”

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 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,” Isaacson said.

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.

Vi Waln, a member of the Rosebud Sioux Tribe, explains in this South Dakota Magazine article, “If my death is to come from an illness or old age I most certainly would want to make my journey to the other side from my own home. The only way I can do this is to prepare legal documents in advance.”

Encouraging action

Remoteness is a major challenge according to Isaacson. Villages and towns are scattered across more than two million acres on Pine Ridge, the second-largest reservation in the country. One local law office volunteers its services to those 62 or older wanting to write wills and advanced directives and will even travel to the reservation if demand is high enough.

Catches The Enemy, a Lakota elder and 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 said.

For reporters wanting to cover the issue:  How do native cultures address death and dying in your state or region? What programs and services are available?

Here are some resources to get you started:

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