Lost in Translation: Health care Challenges in Immigrant Communities

This series on healthcare inequities highlights the impact of language barriers on immigrant communities.

About 25 years ago, Hongkham Souvannarath, a Laotian refugee and mother of seven, was jailed by the Fresno County Health Department for refusing to take her tuberculosis (TB) medication. TB is a highly contagious disease that can pose a significant risk to public health. But Souvannarath didn’t understand she could be infectious because no one had explained that to her in Lao, her mother tongue, and she didn’t understand English.

Today, her case has become a well-known legal case study and cautionary tale for the human cost and health risks posed by a lack of language access in healthcare. The problems she experienced continue to stand in the way of quality care for many immigrants today.

At every stage of her ordeal, interpretation into her language could have prevented a harrowing ordeal for Souvannarath and limited health risks for those around her.

A case study in inadequate care and language barriers

Souvannarath stopped taking the TB medication she was prescribed because the side effects made her feel dizzy. She didn’t understand that she had been diagnosed with a particular type of TB that is resistant to most drugs, meaning exposure could result in serious illness and death.

Souvannarath was served with a Fresno County notice to have a chest examination to determine if she was contagious. Again, the document was written in English, so she didn’t go to the health appointment.

The next day, Souvannarath was taken at gunpoint from her home to the county jail and strip-searched, according to the LA Times. While in custody, Souvannarath told a Hmong officer, who understood some Lao, that she "felt so sick she could die.” He misinterpreted her comment, and she was put on suicide watch inside a room with no water, heat, light, bed or toilet.

For 10 months, Souvannarath remained in jail, initially in solidarity confinement and later with the general population, according to court records. Whenever she was taken outside for clinical appointments, she was handcuffed and shackled at the waist. In the hospital, she was chained to a bed. She was separated from her children, with visits from behind a glass security barrier. Throughout this time Souvannarath couldn’t communicate her needs with jail staff. Only one guard occasionally provided interpretation services.

The Fresno County Health Department didn’t provide any reason for her detention. Souvannarath never had a court hearing, never saw a lawyer and no charges were filed. It turns out that Souvannarath was also misdiagnosed with the multidrug resistant strain of TB. 

She filed a civil rights lawsuit and as part of the Souvannarath v. Hadden, et al. settlement, she returned to jail. The facility was locked down while Souvannarath and a procession of monks performed a cultural ceremony inside so that her soul could be returned to her.

More than 26 million people in the U.S., including almost three million in California have limited English proficiency, meaning they find it challenging to speak, read, write, or understand the language. Language barriers can have serious healthcare implications for these residents, including inaccurate diagnoses, medication errors and poor health outcomes. A recent survey by KFF, a nonprofit focused on health policy research, found that people who didn’t speak English fluently reported more difficulty to make medical appointments, follow doctor’s instructions and take medication, compared to people who were fluent in English.

Federal law requires that people who don’t speak English fluently have "meaningful access” to programs or services supported by the government. These policies are part of the Civil Rights Act of 1964. In 2000, President Bill Clinton issued an Executive Order stating that people who don’t speak English fluently must have access to interpreters or written documents in their primary language, so they can use government services. This means virtually all hospitals, doctor’s offices, nursing homes, state Medicaid agencies, managed care organizations and home health organizations are required to comply with language access policies, if they receive federal funding.

Federal government guidance states that when the patient makes a request, healthcare providers must make sure they provide interpreters at no cost to the patient. The interpreter may include a staff member, contractors, telephone, and volunteers as long as they are competent.

But the way the language policies are enforced in healthcare settings is still inconsistent and inadequate.

Challenges For Child Interpreters

The Hmong migration to the U.S. began at the end of the Vietnam era. As they settled in America, including in Fresno and Sacramento in California, Hmong refugees who didn’t speak English often used their children to interpret for them during medical appointments.

Dr. Marie Thao-Ceballos began interpreting for her diabetic grandmother back in 1989 when she was just seven years old. Her nine-year-old sister said she was too squeamish at the sight of blood to interpret.

"Both my parents worked," Dr. Thao-Ceballos said.

She remembers listening to what the home health nurse said to her in English and trying to explain it to her grandmother in Hmong. She used hand gestures or pointed to parts of the body. Sometimes she simplified the English language as best she could. For example, she explained diabetes to her grandmother as "ntshav qab zib” in Hmong, meaning "sugar in your blood” or "sweet blood.”

Image

Thao-Ceballos' grandmother dressed in traditional Hmong clothing

Photo courtesy of Marie Thao-Ceballos

Experiencing these health inequities firsthand inspired Thao-Ceballos to enter the medical field and earn her Doctorate as a Family Nurse Practitioner. She now treats patients who speak limited English on a weekly basis, about a quarter of whom are Hmong.

"Until I was a nursing student, I don’t believe I truly understood the depth and importance of interpreters for those with language barriers," she said.

She says even as a health professional, trying to interpret between languages and cultures can be challenging.

"It’s difficult with medical terminology as the Hmong dialect doesn’t have words or names for certain organs," she explained.

Hmong is also largely an oral language, and the written script is fairly recent, so older generations aren’t always literate in it. There are also differences between the two Hmong dialects which can hinder translation and cause confusion.

Thao-Ceballos’ experiences underscore the complexities of navigating healthcare when there is a language barrier. But she says the extra effort is worth it because when patients can understand their medical conditions in their own language, it allows them to "fully engage, make primary decisions regarding their care and participate in their health management.”

Using children to interpret was often the only option for many Hmong families but these experiences could be challenging. Susan Maylee Her was in the first grade when she began interpreting for her mother in the early 1990s. She knew basic words such as ‘fever’ and ‘headache’ in English but not others.

She remembers being scared when a doctor asked whether her mother wanted to take medication in a pill or liquid form. "As a six-year-old I didn’t know the difference between solid and liquid," Her said. "It was horrifying."

When she started out interpreting just for her parents, by the age of 12, she was helping out several family members and friends. And not just for doctor’s visits. Her helped interpret while they bought insurance, at gas stations, even at banks. "It was everything and anything,” she said.

As a teenager, there were situations that she found embarrassing. Her remembers having to interpret personal questions for her aunt during OB/GYN visits. "I would have to take a breath before asking," Her said.

Her is now the Executive Director of Uplift the Human Spirit, a non-profit that provides services for the Hmong community, including health support for the elderly. Her career path was shaped by those difficult experiences helping the older generation.

Language barriers lead to negative healthcare outcomes

Studies show that language or communication barriers between patients and healthcare providers can negatively impact medical services. People who are not fluent in English often struggle to access services and receive care that is of lower quality. The quality of interpretation also matters a lot.

Chong Cha, a Hmong refugee from Laos used to grow fruits and vegetables with his wife in their small neighborhood garden. When a Hmong community worker noticed overgrown weeds, he went to check on Cha at home. It turned out that a few weeks earlier, Cha had gone to a hospital in Fresno, for a gangrene infection caused by diabetes. Cha didn’t speak much English, so the hospital found an interpreter who told him that the doctor would "cleanse" the wound. But when Cha woke up from surgery, he discovered one of his legs had been amputated below the knee. Cha had not consented to the procedure.

He sued the Fresno hospital and surgeon for violating his civil rights. In the 2002 case, Cha vs. Community Medical Center, et al., the defendants said that they obtained consent through an interpreter. But witnesses supported Cha’s testimony, that the Hmong "interpreter" the hospital used was a janitor who didn’t speak much English herself. The case was settled for an undisclosed amount.

A recent California Health Interview Survey (CHIS) found that 29% of people who didn’t speak English fluently said they used a family member or friend to interpret at doctor’s visits and 23% were not aware of their right to an interpreter. Many healthcare professionals also are unaware of the law. 

Dr. Larry Wolff, a cardiologist, practiced in the Sacramento area for many years and treated Hmong patients over the course of his career. The Hmong community in Sacramento is 28,000 and make up almost 2% of the population.

"The Hmong patients I saw were invariably accompanied by a family member, often a child, who acted as an interpreter," Dr. Wolff told the Hmong Daily News. "The patients tended to be very reticent to speak with me.”

Dr. Wolff was always concerned about the language barrier because he felt patients were not as engaged in their own care as fluent English speakers. "I was unsure if the nuances of the patient’s disease and care were fully comprehended by either the patient or their family member," he said.
 

In Part 2 of our series, we will look at the significant challenges with implementation and education of the law for health care providers and patients.