Lost translation In Alaska

Lost translation – In Alaska, neglecting to provide interpreters for non-English speaking Medicaid patients means some doctors are breaking the law.

By Joshua Lang
Published on Thursday, September 9, 2010

Imagine: You’re going into an operation with a significant chance of not returning to the waking world. You hardly understand the idea of cancer, let alone how doctors fix it. All you know is that it hurts. The medical staff tells you that to save your life you have to go in to surgery, but the details are fuzzy. They are going to cut what? Slice where? Take what out? Before long you’re on the gurney headed to the operating room. You are still confused. “Where am I going?” you ask. No one answers. They strap you down like a mental patient. You struggle, and to calm you down, they play foreign music, smile, and do a jig as your consciousness fades to black.

This scenario is not fiction. Nor is it legal. It happened here, in Anchorage.

“I asked them, ‘What are you doing?’ And they did not respond. They put me on the surgery bed. They tied me down,” Rebecca says. “I asked them, ‘What is going on? Why are you tying me down?’ I couldn’t understand. They just started dancing and singing, playing music. I was strapped to the bed. I was scared. I guess they were trying to entertain me…”

Photo of Rebecca by Joshua Lang

It’s a disturbing scenario—for most people, intolerable. But it’s happened twice to Rebecca, a 36-year-old refugee and single mother originally from Sudan.

Many Alaska physicians are breaking the law—specifically, “Title VI of the 1964 Civil Rights Act, which requires that any health care provider who receives federal funds, including funding from Medicaid, Children’s Health Insurance Program or Medicare, to take reasonable steps to ensure meaningful access to its health services,” says Doreena Wong, a health policy expert and lawyer at the National Health Law Program, a public interest law firm based in Washington, D.C.

“It is horrifying to watch a human being treated this way. If you look at it from the doctor’s office, they don’t want to get known for this,” says Karen Ferguson, the director of the Refugee Assistance & Immigration Services (RAIS) program in Anchorage. She has a packet of information and a stocked reserve of horrific stories—cases of doctors’ seemingly malicious abuse of refugees in ill health. Her most poignant example is Rebecca.

Although Rebecca is from Sudan and now lives in Anchorage, the majority of her life was spent in Ethiopia. When she was 13 her family fled the religious persecution of a fundamentalist Islamic government. She trekked nearly 500 miles from her home in the south to a camp near the capital of Ethiopia, Addis Ababa.

“We walked for days and days in the bush. Nothing to cook, nothing to eat—only water. Bullets flying, people taking clothes, a lot of people dying, people being killed. They were shooting at us! I wanted to go back home because it was too far. I was tired. They said, ‘We are close; Ethiopia is close.’ So I kept going. After we arrived, they took us to the camp.”

For 22 years, Rebecca lived in that camp. She found a job as an assistant to the pharmacist. She married. She had children. But shortly after her last child was born, her husband died from an infection. Survival became a daily dilemma, and with dwindling options, she applied for asylum in the United States. Numerous interviews, security checks and examinations later, her application was accepted.

On October 6, 2008, she left for America. There were a number of firsts: her first escalator, her first airplane ride, her first time in New York, and her first steps in Alaska, her new home. Rebecca describes the transition in simple terms, “Life here in America is not the same as Ethiopia. Here there are laws.” Her case manager at Catholic Social Services is Rhoda Essary, a British transplant without the accent. She described Rebecca’s transition as stoic, “at least until she began coughing up blood.”

Rebecca had been in Anchorage for a month. “The side of my body was numb. If you pinched me, I didn’t feel it,” says Rebecca. Unfortunately, the doctors never heard this. They did not find out about the numbness until it was nearly too late.

Rhoda accompanied Rebecca to a clinic at the corner of Boniface and Northern Lights. It has a sign in red plastic that reads, “Medical Clinic,” and a neon orange sign below it, “Urgent Care Walk-In.” There was one serious problem: Rebecca had possibly less than a dozen words in her English vocabulary. There are phone lines that doctors can call at any moment for an interpreter, but the clinic refused any suggestion that an interpreter was needed. If she wanted someone, they said, find a family member or a friend. But Rebecca had no friends yet, and her children were equally linguistically confused.

The clinic sent her home, diagnosed with a “touch of pneumonia,” according to Rhoda. No one from the clinic would comment on the details of the case.

Rebecca continued to cough up blood. Her symptoms worsened. Finally, she was persuaded to visit the emergency room. “They told me that I had an hour to live,” says Rebecca. Rhoda explained that she had used her cell phone this time to call an interpreter, facilitating a proper diagnosis. There was a mass in her heart—no pneumonia. Her situation too urgent to even give her a chance to call her children, Rebecca was rushed into open-heart surgery.

The urgent care clinic broke the law while treating Rebecca. Doreena Wong from the National Health Law Program explains that, “this case illustrates the serious consequences when a health care provider does not have the necessary language assistance… The suffering of the patient could have easily been avoided if an interpreter had been used, and the clinic was fortunate that the doctors caught their mistake in time to save the patient’s life. We have other cases where the patients were not so lucky.”

Dr. Jim Billman from the urgent care clinic Rebecca first visited said he had no idea that the provision of an interpreter was required: “If we are breaking the law, I am sure the owner would like to know about it.” Interestingly, the nurse at the front desk explained she knew it was required. The owner was unavailable for comment.

Dr. Thomas Hunt from Providence Hospital describes Rebecca’s care at the clinic as “significantly substandard.” He comments that the diagnosis was flat “wrong.”

These are not isolated incidents. Rhoda Essary and Karen Ferguson have an unsettling number of stories similar to Rebecca’s—refugees that experienced a misdiagnosis or unacceptable care because of miscommunication. They have a list of 20 different “problem” providers, including small clinics and wealthy private practices. There are dentists, ophthalmologists, urologists, internists, surgeons and others.

This list gives an impression of malfeasance. However, meeting with the doctors themselves gives an entirely different impression.

Dr. William Bergeron, for example, is one of these “problem providers.” He specializes in oral and maxillofacial (jaws and face) care at Oral Surgery Associates of Alaska on the border of Fairview and South Addition. He is, in fact, the only oral surgeon in Anchorage that accepts Medicaid patients. He does not have to; he does it because, without him, there would be no one else.

“Refugees are great. Very pleasant and very appreciative,” maintains Dr. Bergeron. The problem is, of course, funding. “The fees for interpreters are expensive and you don’t even know what you get.” Dr. Bergeron agrees that interpreters increase the quality of care. He just doesn’t know how to make it work in his business.

Medicaid in Alaska reimburses physicians for medical services but not for interpreters. It’s simple. An interpreter can cost between $40 to $120 per hour. If you are being paid $150 for a visit, it doesn’t make sense to pay $100 for an interpreter.

Curiously, the Anchorage Neighborhood Health Center in Fairview provides interpreters for any and every client who needs it. According to Joan Fisher, its director, they accommodate “over 21 different languages.” How? It turns out that with the special designation as a Federally Qualified Health Center (FQHC), Fisher can bill the federal government for interpretation services. It’s no secret formula. Find the money and find interpreters. Alaska physicians are not malicious; they’re practical.

Thus one encounters the common “friends and family” solution—the free solution—a pernicious panacea, where the responsibility for finding an interpreter is passed on to the patient, who is recommended to enlist the help of a multilingual friend or family member. Of the nine providers interviewed for this article, eight said that they depend on friends and family for their patients with limited English.

Think about this: If you are a mother, and you have a son who is moderately bilingual, would you want him to interpret for you at your next appointment at the OB/GYN? If you are a father, and you have a daughter who is bilingual, would you want your daughter to interpret at your next prostate exam? Would you want your friend or family member to be the first to know that you have cancer?

In the Americans with Disabilities Act (ADA), the Department of Justice writes, “It is inappropriate to ask family members or other companions to interpret for a person who is deaf or hard of hearing. Family members may be unable to interpret accurately in the emotional situation that often exists in a medical emergency.” Are the Sudanese refugee and the deaf individual different in this respect?

If something goes wrong and the physician used a family member deemed inappropriate (such as a minor) as an interpreter, the provider is liable. The Health Law Program studied a cohort of malpractice cases and found that nearly three percent of all cases arose from such problems, costing doctors millions. There are other opportunity costs also. Dr. Bergeron admits, “Not having an interpreter costs me time in trying to properly explain procedures.”

Doreena Wong from the Health Law Program comments that “larger providers save money with interpreters.” For this reason, hospitals generally have systematic methods for interpretation needs. The problem is with small to medium private practices.

“The solution is simple,” says Barbara Richards, the regional director of the U.S. Department of Health & Human Services. If Alaska requests it, the federal government will provide the majority of the funding necessary to reimburse Alaska physicians for interpreters. Thirteen states have already implemented similar programs, including Washington, Hawaii, Iowa, Idaho, Kansas, Maine and Utah.

Would he offer interpretation service to his patients if he was reimbursed for it? Dr. Bergeron replies without hesitation, “I certainly would.” All of the 20 “problem” doctors interviewed for this article agreed that if they were reimbursed they would at least try out the interpretation service.

According to Karen Ferguson at RAIS, there are about 1,000 Southern Sudanese refugees, between 5,000 and 6,000 Hmong refugees, about 100-plus Somali refugees, maybe 50 Iraqi refugees, 100 Bhutanese refugees and about 500 former Soviet Union refugees. There are also various asylees from Gambia and South America, entrants from Cuba and refugees from African countries such as Togo and Congo.

Anchorage is home to an increasingly diverse population. Over 94 languages are spoken in the Anchorage School District. The demand for interpreters is significant, but still manageable. If Washington and Hawaii can do it, so can Alaska.

Dr. Thomas Hunt from Providence Hospital points out the common sense behind the law: “It is a basic diagnostic tool.” Would you deny refugees the access to X-rays? Being able to communicate with your physician to explain what is wrong is fundamental, a basic tool of physicians.

Communication is the difference between a physician and a veterinarian.

Rebecca lived through the encounter with the heart tumor but the pain never went away. Five months later she was diagnosed with ovarian cancer. In her second surgery the physicians removed her ovaries and danced to western music to assuage her confusion.

Ever since that first episode she has been attending English class three times a week and church twice weekly. She can understand basic greetings; she can even fill out government forms when needed. Her progress is impressive but limited. The pain has still not gone away, but you wouldn’t know from her honest smile and the way in which she describes her experience in the United States.

She says, “I am alive, so thank God. I thank God for coming to the United States. I love my new home.” The pain does not deter her from Bible study, nor does it prevent her from taking care of her children.

Like many refugees, she demonstrates all of the best qualities of Alaskans. She is a survivalist, fiercely independent, honest, hard working and hospitable. She survived the Sudanese bush. She has raised a beautiful family by herself, and still makes time for schooling and church. When you enter Rebecca’s home, she immediately places a cold Pepsi on a cork coaster in front of your seat.

The process to solve situations like Rebecca’s is easy. Either the Alaska Legislature or the state director of Health & Human Services would need to recommend that interpretation services be included in the state Medicaid budget. Because law requires it, the federal government would immediately approve the expense. The state would cover a minority of the cost. Doctors would then be able to bill for interpreters.

Doctors want access to interpreters. Refugees need it. The law requires it. All the state needs to do is suggest it. In one of the most culturally diverse states in the nation, it only makes sense.