Helping Indigenous elderly plan for the future
A new advance care plan plays a role in sharing end-of-life wishes for Indigenous people
It always is hard to think about the end of life. For Indigenous communities especially, such discussions are not always in line with culture and tradition. This mismatch can leave questions if an Elder, for example, is incapacitated or suffers a major medical event and family members, loved ones, and caretakers don’t know her or his wishes.
“When you look at tribal communities,” explained Tasha Peltier, community engagement advocate for Quality Health Associates of North Dakota, “some of us are still navigating the impacts of colonization and the historical trauma that came with it. In dealing with these issues, it can be difficult to think about things down the road. Many of our elders are functioning in survival mode: ‘What do I need to do today to make sure my needs, or my family’s needs are met?’”
Peltier explained that often planning for the future is a privilege not everyone has. Indigenous people can’t necessarily plan for illness or transitional care in the same way as non-Indigenous people. When they are consumed with how they will eat, or pay bills, planning for the future tends to fall off the list.
With the goal of helping Indigenous elderly, the National Indigenous Elder Justice Initiative (NIEJI) at the Center for Rural Health (CRH), within the University of North Dakota School of Medicine & Health Sciences, has developed a new product: the My Advance Care Plan & Guide for Native Americans. The guide is designed to assist these individuals in planning for health issues and end-of-life decisions, and helping them share their wishes with a care team and loved ones.
The culturally-appropriate guide is intended to help encourage discussions and assist people with putting their wishes into writing.
Peltier shared that one of the things that plays into how this plan will be used depends on the person’s understanding of the issues.
Sections of the guide include: what is important to you now; how you like to make decisions; what care and treatment you would like in the future; and what is important to you after your death.
Explaining how she got the idea of a local end-of-life guide after seeing a similar document developed by the Māori people of Aotearoa in New Zealand, Dr. Jacque Gray, director of NIEJI, said that she “felt this could be a valuable tool for many of our Elders and their families, and received permission to adapt it for the Indigenous peoples throughout the United States.”
Gray added that she wanted to make sure such a document was not only culturally-appropriate, but respected the different traditions and values of the various tribes/bands/clans throughout the country.
“We chose language and images that would help members of all tribes feel more comfortable while thinking about difficult situations,” she said.
The guide asks individuals to think about who they want making medical decisions on their behalf, if they are unable to do so. It also talks about subjects such as what worries them about the future; what type of medical care they prefer (medicine/treatment); the environment in which they wish to spend their last days; and how they want to be laid to rest. It also respects readers for whom speaking of future death and dying is counter to tradition.
Peltier noted, “The different language being used is helpful, looking at a spiritual journey. That language matters and it is helpful to have that incorporated into this plan. I am from Standing Rock Tribal Nation, and we see death as a transition – we are all on a path, and death is a transition to the next part of our journey. Not every tribe looks at it the same way, so I think those pieces are important.”
Encouraging important discussion
Peltier received a draft of the plan in 2021 to share with Indian Health Service providers as they worked on an age-friendly project, looking at the care being provided to geriatric patients and finding ways to provide better care. The plan fit within the scope of the project and the feedback from the providers has been positive.
“As far as the content and what it looks like, the providers think it is great,” said Peltier. “But they do not have the time to go through the plan with a patient during an appointment. So we discussed who would have the time to go through this with the patient and we created a process to refer the patient to a social worker in the facility, who can take the time to walk the individual through the plan.”
Peltier shared that asking someone to come back to the facility for another appointment may be difficult, due to transportation constraints. If such a barrier exists, bringing the document home and working through it with family could be an option.
Who helps make decisions?
The plan is not a legal document, but discusses when it may be appropriate to appoint an enduring power of attorney (EPOA), or someone who legally may make medical decisions and should be included in any discussions about future care and treatment options. If there is no EPOA, there is a space for the individual to write down who they would like to be asked to make decisions.
“Tools like these are helpful, especially when you have multiple family members,” said Peltier. “Indigenous people have big, extended families. Our kinship looks very different. It is not the typical nuclear family that may be making these decisions. When a parent passes away, an auntie or uncle may step into that role. We have a different way of identifying our kinship and these roles are strong and important.”
She continued, “When you are looking at who should be making decisions, sometimes that looks different. Who in that tight-knit family will be making those decisions? It might not be a son or daughter. It might be a niece or nephew. It can get complex. They may be the oldest in that family. Having documents like this to help make these decisions is beneficial.”
CRH works with tribal communities to help improve health outcomes and well-being for American Indians, and assists to bring awareness to, and prevent, elder abuse through the work of NIEJI.
“The Center of Rural Health is focused on helping Indigenous Elders live healthier lives,” said Brad Gibbens, acting director of CRH. “Having the ability to encourage individuals to take control of their health and end-of-life decisions and make their wishes known is something we are proud to be a part of.”
The My Advance Care Plan & Guide for Native Americans is available online. For more information, please visit nieji.org.