Two years ago, YoloCares received a grant from the Yocha Dehe Wintun Nation to research, explore, and remove barriers to care for Indigenous and rural populations. This venture, called The Life Transitions Project, resulted in hundreds of hours of outreach, focus groups, workshops, surveys, research, and the creation of a local advisory board. The discoveries range from obvious to unexpected…and even tragic.
One of the unexpected and most heartbreaking discoveries has to do with a historical invisibility and silence of a people, their culture and their needs. This problem of invisibility was sown by the systematic massacre of Native Americans in California during the 1800s. Benjamin Madley, a UCLA professor and historian of Native Americans, estimates that between 9,000 and 16,000 Native Californians were killed by vigilantes, state militiamen and federal soldiers between 1846 and 1873.
The killings were characterized as an organized destruction of the largely peaceful indigenous peoples of the state. The stories were documented in Madley’s first book, “An American Genocide,” published by Yale University Press.
Just 90 miles from Davis in Lake County, the U.S. military participated in the 1849 massacre of 800 Pomo tribesmen on land now known as Bloody Island. Capitol Hill was complicit in the Bloody Island Massacre and many other massacres in the Sierra Nevada gold fields. At the time, California’s Chief of Indian Affairs said, “The killing of Indians is a daily occurrence. If means are not quickly found by which the unauthorized expeditions which are constantly in search of them can be held back, they will soon be exterminated.
Beliefs related to racial superiority were used to justify the killing; greed fueled a sense of urgency. Just two years after the discovery of gold, California became a state in 1850…the decade when the slaughter of indigenous peoples reached its peak. Many gold fields were on the ancestral lands of the tribes.
It was a widely held belief in 19th century California that all Native Americans should be exterminated. According to a San Francisco newspaper, “whites are increasingly impressed with the belief that it will be absolutely necessary to exterminate the savages before they can work the gold mines much longer in safety” . In exchange for 2,000 Indian scalps, one of the killers sent a bill for $11,143 to California. The state paid for it almost in full. California spent $1.5 million on 24 different Indian-killing militia campaigns between 1850 and 1861. Congress reimbursed the state for all but $200,000.
A young Pomo girl who survived the Bloody Island massacre said she escaped certain death by hiding below the surface of Clear Lake and using the reeds that grow along the shore as breathing tubes. When she surfaced, she saw that her entire family had been killed. Survivors of these brutal events quickly learned that future survival would mean keeping a low profile or going completely invisible.
For many, this notion of remaining silent, withdrawn and obscure has been passed down from generation to generation. There is a deep and understandable sense of distrust that has existed for almost two centuries. This unacknowledged and unresolved history has turned into barriers that prevent some Native American families from accessing care from what are perceived to be predominantly white health systems and organizations.
According to Aliya Patel and Brandy Jones, the YoloCares research coordinators who run the Life Transitions Project, “there can be a reluctance to accept community support and a distrust of strangers coming into the home to provide care” .
Patel said the project’s findings also made it clear that providing culturally appropriate care to Native American families is not a one-size-fits-all proposition. Traditions and experiences vary widely from tribe to tribe, family to family, and within the same region. Individuals may subscribe to all, some, or none of these beliefs and values.
* Beliefs about death are sacred and personal, involving different customs, traditions and religions. While many Americans view death as something to be avoided and a definite end, many Native American families view death as a natural occurrence in life…something to be accepted rather than feared. Rather than disconnecting from the dead, Native American peoples continue to have a relationship with them.
From the Native American point of view, death is not a defeat. There is no central set of rules or beliefs and historically spiritual teachings were never written down, only passed down from generation to generation. Native American beliefs are deeply rooted in their cultures and histories, as well as in their spirituality. Native American death rituals vary widely across different tribal traditions, although they may share some common beliefs.
* Pain and death must be dealt with in a way that heals mentally and spiritually. American health care tends to focus first on a person’s medical condition and physical symptoms at the start of care. Research suggests that many rural and indigenous people would benefit from having their spiritual and mental health taken care of before introducing the technical or clinical aspect of care.
In palliative care, when a patient is admitted, a nurse is probably the first person someone will see. However, the results indicate that for some people, it may be more meaningful to schedule an initial visit with a chaplain or spiritual care advisor who accompanies a nurse.
* Non-tribal health professionals need help in overcoming language barriers, cultural beliefs regarding discussion of death, appropriate behaviors regarding home visits and touching, and community presence in the home where the family and friends are part of the care team.
* There are a number of practical barriers to care, including a lack of knowledge about available services, lack of insurance and transportation difficulties.
Although California’s Native American population dropped dramatically, from 150,000 to 30,000 in the mid-19th century, it has since rebounded. California now has the largest native population in the United States with approximately 723,000 Native Americans, many of whom belong to the state’s 110 federally recognized tribes.
The Life Transitions Project aims to clarify and understand cultural, economic, social and other critical barriers to end-of-life and palliative care services. The next phase of work will include exploring potential solutions to overcome barriers and building community partnerships that will help address historical disparities. Additional work will also be carried out to learn more about the specific needs of the target communities.
Many rural patients living with life-threatening illness continue to suffer from pain, stress, and untreated or undertreated symptoms that could be alleviated by better access to palliative care. Only 22 of California’s 58 counties have a community-based hospice program. One of the planned outcomes of the Life Transitions project is to develop a model that can be replicated in the five counties served by YoloCares. According to Stephanie Baxter, Director of Patient Care, “This work reflects the agency’s commitment to developing culturally competent clinical practices.”
— Craig Dresang is the CEO of YoloCares.