Hospices Seek to Improve Health Equity Among Tribal Communities

A lack of culturally inclusive care and mistrust of the health system are contributing to low hospice utilization among Native Americans.

Native Americans are the least likely to enroll in hospice among racial and ethnic groups. Many in that community also lack access due to geographic and financial barriers.

They comprised 0.4% of all Medicare hospice patients in 2018, according to the National Hospice and Palliative Care Organization (NHPCO).

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Similar to other underserved populations, fear of discrimination and mistrust are the biggest walls between Native Americans and hospice care, according to Craig Dresang, CEO of California-based YoloCares.

“The biggest issue that is faced by Native communities when considering hospice is inherent mistrust in the system,” Dresang told Hospice News in an email. “Native communities have generations of historic intergenerational trauma that are inherently linked to mistreatment and misconduct in health care settings. Many hospice systems have perpetuated issues of mistrust — even to this day — whether through blatant discrimination or subtle micro-aggressions.”

A multifaceted problem

Many Native American seniors live in rural, frontier, tribal and geographically isolated communities and territories across the country. This poses unique physical challenges in access and availability of health care, according to Julie Reynolds, executive director of Washington-based Walla Walla Community Hospice (WWCH).

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As 2021 study published in The Journals of Gerontology identified other leading deterrents:

  • Difficulties obtaining and using health insurance
  • Limited availability of health services in their regions
  • Health-related self-efficacy and knowledge
  • Accessibility and transportation barriers
  • Tribal/National policy differences

“Sometimes the challenge of receiving hospice care is literal, as hospice staff navigate parts of reservations that may be remote with challenging roads for travel, dark night skies, no cell service and some patients and their families live off-grid,” Reynolds told Hospice News in an email.

More than 6.5 million Native Americans make up 574 tribal nations and villages across the United States, according to a 2021 report from Alive Hospice.

On the payer and provider side, a lack of data complicates efforts to better address and understand Native American health care needs at the end of life, according to U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra.

Tribal communities are not part of the United States health system and are not required to submit data on health outcomes, experiences or services, which limits the scope of understanding among payers and providers, Becerra explained.

“We don’t have in our system of public health a way to get the various tribal territories and governments to give us data that gives us answers, because they are not obligated to in our republic and state system,” Becerra said at the HLTH conference in Las Vegas.

Breaking down the barriers

With health equity emerging as a rising priority, some payers and providers are trying to reduce disparities among Native American, indigenous and tribal populations. The U.S. Centers for Medicare & Medicaid Services (CMS) recently released new strategies to address factors behind health disparities among these communities.

One of these strategies included the CMS Framework for Advancing Health Care in Rural, Tribal, and Geographically Isolated Communities, which outlines six priorities the agency will focus on during the next five years. This includes expanding access to health care coverage, benefits and services to patients in rural, tribal, frontier or geographically isolated areas, along with strengthening support for health care professionals serving these regions.

“People living in rural, tribal, and geographically isolated communities face barriers to accessing comprehensive, high-quality and affordable health care services,” the agency stated in the framework. “Compared to national averages, individuals living in rural and tribal communities and the U.S. territories experience disparities in health outcomes. Most U.S. territories have also reported health care practitioner shortages, which, combined with remote island geographies, can require individuals to travel long distances to receive health care services that are not available.”

The CMS document also proposed solutions related to value-based care, optimizing medical and communication technology, and increasing the collection and use of standardized patient data.

On the provider side, cultural awareness training and education have been key initiatives among hospices to reach indigenous, tribal and Native American populations.

Expanding these education programs to foster greater understanding of tribal traditions, beliefs and values is an important and critical measure for hospices to take in order to improve access for these underserved communities, according to Reynolds.

“Some hospice staff may not be aware that for many Native American families the name of a loved one is not uttered for a year after they have passed,” Reynolds told Hospice News. “It may create undue suffering for bereaved Native Americans if the system that the hospice operates under, or its staff, does not take this practice into account.”

Hospices have also aimed to build a more diverse workforce. A lack of Native American representation can lead some hospice staff to feel ill-equipped to provide culturally sensitive and quality care to patients and their loved ones, Reynolds said.

WWCH has been working closer with Native American communities across its service region, according to Reynolds.

The hospice began partnering with the Yellowhawk Tribal Health Center in 2018 to develop cultural sensitivity staff training programs and bring more collaborative and inclusive care to seniors living on reservations. The center provides primary care, dentistry, and other services to the Yellowhawk Tribal reservation and other First Nations residents.

Hospice providers also need to examine their own inherent personal biases, according to Dresang.

“An issue that providers need to address is tied to language and the honoring of beliefs and traditions. Native and Indigenous people do not always believe in the finality of death, so we need to reconfigure our ingrained Westernized ideologies if we want to have meaningful connection,” Dresang told Hospice News. “Hospice organizations should consider using language that is more reflective of spirit and soul and less focused on the physical mind and body.”

For example, it may be necessary to replace terms like “end-of-life care” with words that reflect a community’s culture and language, such as “passing over” and “transitioning,” which can relate more closely with Indigenous beliefs, according to Dresang.

YoloCares hosts educational workshops and booths at Native American Pow Wow heritage celebrations across Northern California to help de-stigmatize the topic of hospice, he added.

The hospice provider earlier this year in March received a $1 million grant from the Yocha Dehe Wintun Nation to fund research and efforts aimed at reducing challenges to end-of-life care access among Native American communities.

YoloCares also renamed its Native American initiative/program to The Life Transitions Project in an effort to “more accurately represent a belief system that hinges on the fluid nature of transitioning from one journey to the next,” Dresang said.

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