Native American seniors are much less likely than other racial and ethnic groups to receive hospice and palliative care, but a new partnership between a Capay Valley tribe in Yolo County and a local hospice provider seeks to change that.
Yolo Hospice, a non-profit hospice provider serving five Northern California counties, including Yolo County, recently received a $1 million grant from the Yocha Dehe Wintun Nation, a sovereign Native American Tribe. The grant will fund research and efforts to counteract the challenges that residents of rural and Native American communities face when trying to obtain and plan for end-of-life care.
The cost of services, inability to take time off from work, and transportation barriers are among factors that make hospice and palliative care inaccessible to Indigenous communities in the state and nationwide. Experts also attribute Indigenous communities’ difficulty accessing end-of-life services to a lack of cultural sensitivity among health care professionals.
“Providing comfort to a loved one in their final days is one of the most difficult challenges a family will ever face,” the Yocha Dehe Tribal Council said in a statement to the California Health Report. “Those difficulties are compounded in rural and Native American communities where too often it’s a struggle to find help with providing that care. We are humbled to be part of the solution.”
Hospice care involves a range of services provided to terminally ill patients and their families at the end of life, including nursing care, palliative care, and emotional support. Services are typically offered to patients in their home, or at a nursing home or assisted living facility where they reside.
This type of care is generally much less expensive than providing end-of-life care to a patient in the hospital and, when done right, is usually more comfortable for patients. Most hospice care is paid for by Medicare, so making this benefit more accessible is not only good for patients but also reduces taxpayer spending on health care through the Medicare program.
But, just 0.4 percent of Medicare patients who received hospice care in 2017 were Native American, despite the fact that this demographic makes up 1.3 percent of the U.S. population, according to a report by the National Hospice and Palliative Care Organization. In comparison, almost 83 percent of Medicare patients receiving hospice care in 2017 were white, more than 8 percent were Black, over 6 percent were Hispanic, and 1.7 percent were Asian American.
Yolo Hospice is the only hospice provider in the largely rural Capay Valley, located northwest of Sacramento. The funding from the Yocha Dehe tribe will allow the community-based organization to initiate a three-year project to study why Native Americans trail other groups in accessing end-of-life services. During the project’s first year, the nonprofit hospice will conduct research and collect data to better understand the needs of rural and Indigenous communities. The following year, the hospice will perform an analysis to determine the best way to remove barriers to care.
By 2023, Yolo Hospice plans to launch a program that will make a wide range of services including palliative and hospice care, bereavement services and caregiver relief—more available to the tribal and rural Californians the organization serves. All age groups may benefit, but Yolo Hospice primarily serves seniors, said CEO Craig Dresang.
“Not only do we want to understand what the barriers are to accessing high-quality care for folks who are Native American, but, also, what do we have to learn from these ancient populations in our own service area about how they process grief, deal with loss, care for the sick, within their own communities?” he said.
Dresang described the effort as a first-of-its-kind initiative in California. He said he was not aware of any similar partnerships in the state between a hospice and a tribe. He expects Yolo Hospice to change its model of care based on the project findings. The organization also plans to hire a Native American nurse and social worker to ensure that its program outreach aligns with the local Indigenous community’s values and goals.
Dresang pointed out that the Yocha Dehe tribe has a centuries-old legacy of supporting community members during times of loss or grief, with families rallying around terminally ill loved ones with a commitment their non-Indigenous counterparts often lack.
Health care professionals, however, don’t always acknowledge or honor Indigenous approaches to hospice or palliative care. Amber Christ, directing attorney of health policy at Justice in Aging, an advocacy organization that fights senior poverty through the law, said that Native Americans seeking end-of-life services struggle to find culturally appropriate and respectful care.
“As an example, some hospice and palliative care programs require advance directives when planning for death; that may not be culturally okay for some communities,” she said in a statement to the California Health Report. “Dedicated funding like this grant is critical to addressing these barriers and for working directly with tribal elders, leaders and members to develop palliative and hospice care programs that meet the community’s needs.”
Although the Yocha Dehe’s $1 million grant will serve residents of the Capay Valley area, Yolo Hospice is already in contact with providers in other regions, including Humboldt and Nevada counties and Washington state, interested in duplicating the effort. As chairman of the Hospice Coalition of California, Dresang said that he can easily work with member hospices that serve Indigenous populations on efforts to make their care accessible and culturally sensitive too.
“We’re looking at the needs of our local communities here within our five-county service area,” he said. “Every tribe has its own unique characteristics and beliefs, so there is a lot of difference from one community to the next. However, we also think there’s going to be some common threads, and we’re very interested to see what those might be, so we will be branching out and working with other hospice providers as well.”
Joe Rogers, CEO of the Hospice of Humboldt, wants to learn more about how to better serve the Native American community. Humboldt County is home to tribes such as the Karuk, Hupa, Tolowa, Wiyot and Yurok. “I applaud [Dresang] for getting the grant and really going at an area that’s vastly underserved,” Rogers said. “I’m very interested in seeing what he comes up with, or if there’s some way we can be a part of it up here.”
Although the three-year partnership between Yolo Hospice and the Yocha Dehe tribe has just started, Dresang believes the project will make a substantial difference in the lives of Indigenous and rural residents. Learning about the service gaps these communities face is the only way to close them, he contends.
“We don’t know how to address an issue unless we’re aware that it’s an issue to begin with,” Dresang said. “So, I think it will absolutely change how we deliver care in rural communities and among Native American populations. I think it will make us better. I think it will make us more thoughtful in how we provide care, and I believe there’s going to be things we learn that we can incorporate for all of the populations, for all of the communities we serve.”
Resources for Seniors and Their Family Members
Get Palliative Care: Information for patients and families from the Center to Advance Palliative Care.
Palliative Care Options from the California Department of Aging
Coalition for Compassionate Care of California provides information for people to have conversations about how they’d like their loved ones to plan ahead for future medical and other needs.
California Senior Medicare Patrol has a hotline, 855-613-7080, and information on how to detect, prevent and report Medicare fraud and abuse, including related to hospice.
Contact Medicare: 1-800-633-4227