Margaret Moss, a prominent American Indian nurse scientist, lives in the shadow of tragedy.
Her mother died of complications from diabetes; her sister died of liver failure; her brother was killed in a motorcycle accident; and another brother died of HIV/AIDS. Her brother-in-law was murdered, and several aunts and uncles died prematurely.
It’s almost as if her entire family was cursed. Moss, in fact, believes it was—but not by spirits. She says her family has been cursed by a health care system that fails to adequately serve American Indians. Moss’ deceased family members received health care in part paid for or provided by the federal government. At other times, urban Indian health care was simply unavailable. But misguided laws, culturally insensitive care, and low-quality education contributed to a climate in which her family failed to thrive.
Moss is not alone. American Indians, she notes, have shorter life expectancies than other Americans and experience disproportionately high rates of death from diseases such as cirrhosis and diabetes, motor vehicle accidents and other unintentional injuries, and assault, homicide, and suicide, according to the Indian Health Service, the federal health program for American Indians and Alaska Natives.
“I started putting it together, and our family experiences were actually falling in line with Indian Health Service statistics,” she says. “It kind of shocked me.”
But it wasn’t until Moss became a nurse that she began to fully understand how the “system” undermines the health, and the lives, of native people.
In 1991, Moss took a position as a registered nurse at the Santa Fe Indian Hospital in New Mexico, where she cared for members of Pueblo, Apache, and Navajo nations. The elders, she came to realize, often shunned long-term care and instead chose to return home even though they lacked respite and in-home care. “They would literally rather go home and die than go to an out-of-culture nursing home,” she says.
That’s because “Anglo” facilities in her region did not take into account the spiritual and cultural needs of American Indian patients, she says. Elders, for example, were not allowed to pray outside in the early morning, fast, take long walks so they could “touch the earth,” or burn food at meal times as spiritual offerings. “These are things they have to do,” Moss says. “It’s not like ‘Oh, I’ll just go to church on Sunday.’ If they don’t do these things, they will bring bad luck on their families.” Forced to choose between their spiritual needs and their physical ones, they chose the spiritual, she says.
That experience prompted Moss to explore ways to provide culturally sensitive long-term health care facilities for American Indians. She enrolled in a doctoral program in nursing at the University of Texas at Houston and earned her degree in 2000.
But providing culturally sensitive nursing care to American Indians proved to be more daunting than she first imagined. One reason was that nursing education programs do not adequately address the cultural concerns of American Indians, she says. And few American Indians become nurses, in part because of low-quality educational opportunities and comparatively low high school graduation rates. “If we can’t even get them out of high school, how are they going to go on and get their bachelor’s, master’s, and doctoral degrees?” Moss asks.
Moss encountered legal barriers as well. Plans to create long-term care facilities that cater to American Indians may well be doomed by state laws—many in the West—that ban funding for more nursing home beds. The intent of these laws is to shift resources to programs that enable people to age in their own homes, but that leaves American Indians without the access they need to culturally sensitive facilities. American Indians do have the legal authority to build nursing homes on tribal lands, she notes, but they are not eligible for state funding to do so and therefore cannot afford to construct such facilities.
This funding “Catch-22” drove Moss back to school. In 2006, she earned her JD from Hamline University School of Law in Saint Paul, Minn. and, in so doing, became the only American Indian in the country who holds doctorates in both nursing and the law.
In 2008, Moss received a Robert Wood Johnson Foundation (RWJF) Health Policy Fellowship and worked for the Senate Committee on Aging, where she drew attention to health disparities and took the lead on legislation that coordinates federal funding for Alzheimer’s disease.
Now associate professor and specialty director of the nursing management, policy, and leadership program at Yale University School of Nursing, Moss is working to raise awareness about aging and health disparities faced by American Indians. She is currently editing and writing the first textbook on American Indian health and nursing, which she expects will be published this year.
The working subtitle is “What They Never Taught You in Nursing School,” and she says it is chock full of ways to provide culturally sensitive care for American Indians. “I’m hoping it will be picked up by nursing schools so students can get first-hand information about American Indian health,” Moss says. “What nursing students learn now about the subject could be summed up in one paragraph.”