Cultural Divides in Navajo Mountain

Image

NAVAJO MOUNTAIN, San Juan County - Buck Navajo Jr. sits on a bed inside his hogan as afternoon light illuminates dust motes twirling in the air. His left arm suspended in a sling, the medicine man's free hand waves as he gently chides his granddaughter.

Paulette Smallcanyon, his kin by clan, has come here this July day toting a 22-page questionnaire about cancer screening. But he considers the topic taboo, and is reluctant to answer.

Smallcanyon is a "patient navigator," seeking Navajo who are enrolled in Medicare but are not getting the cancer screenings it offers. Along with other American Indian navigators working with the Huntsman Cancer Institute, her mission is to help seniors in her tribe get tested and treated for cancer.

"Probably over half of them have never had a cancer screening," said Eleanor Yazzie, a Navajo Mountain patient navigator who has interviewed about 40 elders since she was hired a few months ago. "They said they're healthy and they don't need to go to the clinic."

Research shows minorities don't receive the same level of cancer care as the general population, but American Indians may be the most underserved. Cancer was their second leading cause of death in 2004, regardless of gender.

While American Indians generally have a lower incidence rate of cancer than non-Hispanic whites, they have the highest five-year mortality rate of any group in the country. Research published in the journal Cancer in August, however, challenged the low incidence rate, showing the race of American Indian patients in central cancer registries has been misclassified.
Since 2006, Huntsman Cancer Institute has been working to develop patient navigators in Utah and Montana tribes as part of a pilot study with the Centers for Medicare and Medicaid Services.

Navigators guide elders through the maze of doctor's offices, clinics, hospitals, payment systems and other features of the Indian Health Service.

Nationally, navigators are seen as an innovative tactic to reduce racial and ethnic disparities in medical treatment. Among Utah's tribes, however, the program is struggling to overcome indifference, suspicion and other hurdles American Indians face in getting health care.

'I don't want to talk about it'

The first challenge for Navajo navigators: finding their way to the elders.

The Navajo Nation is 25,000 square miles, an area roughly the size of West Virginia. Much of it is considered
news "frontier," meaning fewer than five people call a square mile home. Many don't have phones, and those who do have spotty coverage.

Navigators rely on Medicare rolls to identify eligible elders - but records are outdated and unreliable. Scores of the people listed died years ago.

The journey to an elder's home can also be unpredictable. Rain can transform the reservation's reddish-brown dirt into goop, making its 4,800 miles of unpaved roads slick and impassable.

Once a navigator has finally arrived, elders may refuse to discuss cancer, a disease for which the Navajo language has no word. It is instead "lood doo na'ziihii" - literally translated, "the sore [or wound] that does not heal." It finds people who cross the path of an animal, such as a snake, Buck Navajo Jr. explains. Or those who are near lightening bolts charging from the sky and striking the Earth.

Merely uttering "lood doo na'ziihii" can bring it on oneself.

"They say, 'I don't want to talk about it,'" said Janice Jumbo, site coordinator for the pilot program on the Navajo Nation and a doctoral candidate in epidemiology and public health. "Or they say, 'Why are you asking me these questions? I'm a healthy person now,' " she said.

Many will closely guard a diagnosis, embarrassed to tell family or friends since they feel it was their misstep or indiscretion that caused it. Some Navajo fear treatment cannot conquer cancer and see it as a death sentence.

Willa Mae Jones, a case manager for the Breast and Cervical Cancer Prevention Program on the reservation, said cancer-survivor and other disease support groups are rarely successful.

"They don't have anonymity," she explained.

Putting traditional care first

Navajo have turned to the Evil Way, the Lightening Way and other healing ceremonies for generations. Today, some postpone modern treatments to give the care from a medicine man first priority.

Nathan Redhouse, Jumbo's kin by clan, arranged an Enemy Way ceremony in July after suffering for years from inexplicable joint and body pain. High in the trees of the northern Arizona mountains near Lukachukai, he sat on the dirt floor of a stick hogan. Smoke and the medicine man's singing flowed through the air.

Outside, a dozen men on horseback waited to ride with Redhouse, who would soon accompany the healer to another patient's home and pass on a ceremonial staff dressed in yarn and feathers. Others planned to follow in a convoy of cars and trucks decorated with yarn.

In a cook shed nearby, relatives prepared food for the guests. Jumbo arrived with a watermelon, candy, soda and a sack of Bluebird flour. At the other patient's home, Redhouse, his family and guests would feast on mutton stew and fry bread. The night - one of six in this nearly weeklong ceremony - would end with a Squaw Dance lit by a bonfire.

Some ceremonies are performed seasonally, requiring Navajo to delay other treatment for up to a year. And they're costly. Some medicine men charge $1,000 or more - plus the cost of items needed for the ceremony, such as Pendleton blankets, sheep or jewelry.

"A lot of elders spend so much time and money on traditional help, they don't have the money to get conventional treatment," Jones said.

Suspicion of white health-care providers, too, keeps some Navajo out of clinics.

"In their mind, I guess, the big picture is that white man brought cancer to the Navajo people," Jumbo said, "and the Navajo people are going back into the clinics so the white man can study them."

'Ship them out'
Tribal members receive free primary health care from Indian Health Service (IHS) hospitals and clinics. Although there are 12 on the vast reservation, an appointment can still mean traveling hundreds of miles.

Getting cancer care is even more difficult. The IHS Contract Health Service makes such specialty treatment available from providers off the reservation, but it can be unaffordable and hard to access - as Priscilla T-Yazzie found.

Passing through Flagstaff, Ariz., in January 2006, she stopped at an emergency room to investigate her coughing spats and high fever.

"I thought I had bronchitis," the 58-year-old retired social worker said.

A chest X-ray, however, revealed spots on her lungs. The ER doctor referred her for more testing. A CT scan at the Tuba City Indian Medical Center - not arranged until seven months later - revealed she had cancer. A year after the spots were first identified, she finally started chemotherapy.

"If someone requires neurosurgery, we have to ship them out," said Douglas Peter, director and chief medical officer of the Navajo branch of the Indian Health Service. "We don't have the resources nor the capacity nor the location to serve people with all kinds of tertiary [or specialized] care."

Bringing in specialists is not an option, since most doctors can't justify spending the time or expense to treat a small number of people in an isolated rural area, he added.

So cancer patients who need chemotherapy and radiation face road trips to Salt Lake City, Flagstaff, Phoenix, Albuquerque or Gallup - sometimes multiple times a week.

"There is no cancer treatment available other than surgery - which is not always the standard of care," said Linda Cothron, community health nurse director of the Kayenta Public Health Nursing Program in Kayenta, Ariz. "The fact that somebody can be suffering from cancer and not have anything available is outrageous."

For low-income Navajo without cars, a shuttle is available - but some board as early as 3 a.m. to collect their fellow passengers.

"And then they're coming back late at night and heaven forbid you should have [nausea] or diarrhea because you got chemotherapy or radiation," Cothron said. "You're in a vehicle of strangers."

T-Yazzie's husband left her after she was diagnosed with lung cancer - "He knows I'm not going to get well."

At first, she traveled to Gallup several times a week for seven hours of chemotherapy - but not for long.

Doctors "told me it was an 'option,'" said T-Yazzie, who was spending the day in a three-person room at the Tuba City Indian Medical Center, receiving intravenous antibiotics for an infection. "So I didn't go back."

Mixed reception

Between the Utah and Montana sites, 1,072 American Indians have been recruited to participate in the navigator project - 728 shy of the 1,800-person goal. Half will be mentored by a navigator, and their experiences will be compared to the half who receive less help.

Sandra Marsh, project coordinator at the University of Utah, approached multiple tribes in Utah: Utes, Paiutes, Goshutes and Shoshone among them. All tribes, except the Navajo, either didn't express interest, didn't follow up with signed agreements
or had too few elders on Medicare who were eligible to participate.

On the Navajo reservation, navigator turnover is a problem. As of mid-September, Marsh said, only Eleanor Yazzie was still actively working.

Tribes' suspicion and the mistreatment of members during past studies may be partly to blame, she said, but "we're aware of that and we want to learn the lessons from that."

Still, she's hopeful. The Navajo site in Utah and the Blackfeet and other sites in Montana could still yield data by 2010 - when the pilot project ends - that justifies using navigators in Medicare and other federal health programs, she said.

In the end, Buck Navajo Jr. answered Smallcanyon's questions and completed his questionnaire. In coming months, a patient navigator will be back to try to talk him into his first cancer screening.

 Lisa Rosetta covers health policy and reform for the Salt Lake Tribune. lrosetta@sltrib.com