The lack of Asian language services offered in the American healthcare system has forced younger family members to shoulder the burden of navigating an often labyrinthine system. CreativeCommons

Kow Lee sounded frantic over the phone as the 88-year-old pleaded with his daughter Lily Ling to visit him in the hospital.

Lee, who immigrated from Hong Kong in the 1960s, could not get answers to his questions. He was hungry but the doctors wouldn’t give him food. He had an IV attached to his arm, but he didn’t understand why. Pandemic measures restricted hospital visits, and Lily comforted her father as best she could over the phone.

“This is how I felt: frustrated and helpless and scared,” Ling said. “Because I could feel for my dad.”

The American healthcare system rarely offers services in Asian languages, forcing younger family members to shoulder the burden of navigating an often labyrinthine system that leaves many Asian American seniors behind. Pandemic restrictions on hospital visits forced many elders to seek care at hospitals without their families to translate.

“We were forced to make these decisions without seeing my father or having his consent,” Ling said. “And my dad doesn’t even understand what’s going on, and everything was thrown on me.”

Confused and stressed, he lashed out at his daughter, the only person he could communicate with.

Nearly one-third of U.S. hospitals do not provide interpreters to patients who speak limited English, according to a 2016 study. And interpreters rarely specialize in Asian languages.
These linguistic deficiencies force Asian American families, especially younger members, to become primary caregivers and translators.

In a 2020 Asian American Voters survey, 70% of Asian Americans said they either sometimes, somewhat often or very often worried about having to take care of an aging family member. Indian Americans, at 76%, reported even higher levels of concern

For some South Asian Americans, providing care for elders is both a labor of love and a heavy responsibility.

“Some see a certain expectation or cultural burden, but for some, they kind of grew up in that culture, and that becomes a part of their practice and their responsibility and knowledge that ‘this is what I need to do when I grow up,’” said Shobhana Verma, executive director of the South Asian American Policy and Research Institute in Chicago.

Lily Ling's father Kow Lee. Courtesy of Lily Ling.

Karen Cheng and her family at a birthday party in 2002. Courtesy of Cheng.

Lost in Translation

Karen Cheng, a 21-year-old from Indiana, has been translating for her grandparents at hospitals for more than half of her life. At nine years old, she accompanied her grandfather, Ren Ti Zheng, to the hospital for stomach surgery.

No one at the hospital could communicate with her grandfather, so on follow-up appointments, Cheng had to step up. Sometimes she had to rely on Google Translate.

“That’s always tricky,” she said. “Health jargon is hard to understand in your first language so trying to translate this all to another language is complicated.”

Asian American seniors in areas without large Asian American populations have to contend with even more language isolation. Hospitals staff few doctors that look like Cheng and offer far less translation capacity.

“I always felt like we always had to translate for ourselves and we couldn’t rely on any other outside support besides our own family members to help with understanding the medical system,” Cheng said.

The Affordable Care Act, a federal program that offers health insurance for people without job-based coverage, requires hospitals to train staff on providing interpreters and to notify patients of available translation services. But in practice, patients don’t always get the interpretation they need.
Because translation requirements under the ACA have changed under different presidential administrations, there’s debate over their effectiveness, said Oliver Kim, a policy expert at the Bipartisan Policy Center.

There’s a shortage of certified medical interpreters, said Natalya Mytareva, executive director of the Certification Commission for Healthcare Interpreters, which certifies medical interpreters. And Asian language interpreters are especially rare. About 3,300 out of the 5,000 certified interpreters speak Spanish, and just 193 interpreters speak Mandarin, the second most common language. Asian American elders tend to depend on their family members or helpful bystanders to translate, Mytareva said. But medical care, especially for seniors, requires language expertise. Mistranslations can be deadly.

Chart: Xinyan Fu | Source: Certification Commission for Healthcare Interpreters

“People were in traumatic situations of life and death. And then they realize that the doctor cannot even talk to the patients,” she added.

Thao Tham, 81, usually asks his children to interpret. But he hates to bother them, and he knows they have busy jobs.

Instead of asking his kids or waiting hours for a medical interpreter at his Orange County hospital, Tham goes without medical care.

“The last time I went to see an English-speaking doctor was more than three years ago, due to my hearing loss,” Tham said
Tham is losing his hearing, and it got worse during the pandemic. But he had trouble getting an appointment with a hearing specialist. Three years passed before he got a hearing test and a more powerful hearing aid.

Although some healthcare providers provide bilingual materials, the translation can be inaccurate. Some providers told Voices they just rely on Google translate to offer materials in another language.

For Miyoung Kim, an advocate working at Womankind, a center for Asian women based in New York, even fluent speakers struggle with medical vocabulary.

“I barely can understand what they say,” said Kim, a native Korean speaker. “I’d rather read it in English because that makes better sense.”

A complex system

The American insurance system often confuses recent immigrants in a new environment, Oliver Kim said. Seniors, especially, often don’t understand that they must present an insurance card to access benefits.

South Asian Americans have some of the lowest rates of Medicare and Medicaid enrollment out of all AAPI groups, according to AAPI Data. New immigrants prove residency for five years before they can access publicly-funded health insurance like Medicare and Medicaid.

For Asian American seniors who fall through the cracks, nonprofit organizations like the Hamdard Health Alliance in Chicago offer tailored medical and mental health care, case management and health education for residents throughout the city.

When HHA, which serves many South Asians, first helped 68-year-old Sabihe Anwar apply for health coverage in Illinois, she was denied. To this day, she still doesn’t know why. Unable to get the insurance that would cover her husband’s heart condition, Anwar returned to her home country of Pakistan to get the care they needed.

When they returned to the U.S. in October, HHA again helped the family navigate finding insurance. This time, they succeeded. With insurance, Anwar said she feels much more confident she can get the care she needs in the United States. This year she and her husband went to an eye specialist for diabetes for the first time.

Anwar’s son also provides support for her, she said, such as paying for her apartment. But she knows he can’t keep that up. “My son also has his family,” she said. “He’s a married man, he has a job no doubt, but he would not be able to take on my medical expenses.”

Meeting the need

Some hospitals cultivate networks of Asian language translators to help rectify the lack of Asian American representation in the medical field. A 2018 study by the Association of Medical Colleges found that 17.1% of all active physicians identified as Asian, while 52.6% identified as white, according to the Association of American Medical Colleges—though there was no breakdown by ethnicity.

To meet this need, the Chinese Health Initiative at El Camino Hospital in Santa Clara County has created a network of over 100 Chinese-speaking physicians over the past 11 years. The vast majority of the CHI’s participants speak Mandarin, but a fifth of them also speak Cantonese.

It’s important for seniors to discuss their problems with their doctor, and that takes language, said Jean Yu, manager of the initiative. “Seniors will come to us and say, ‘Oh, I want to find a doctor to talk about my heart problem,’” Yu said. “[But] they don’t even know that that’s called cardiology.”

But until the healthcare system starts offering care in Asian languages, Asian American families bear the burden.

Ling now makes most of her father’s healthcare decisions as he recovers from COVID-19. It’s an uncomfortable dynamic for her father, a strong-willed energetic man who used to take walks every day in Chinatown and serve as an officer for a Chinese community organization.

Despite the turmoil her family experienced, she’s grateful that he does accept her help, albeit reluctantly.

“With all these traumas and things going on, it just made me understand that I should never take things for granted,” Ling said. “Even when he gets unreasonable, I’m going, well, at least he’s alive. He’s alive.”

Shaanth Kodialam is an intern at the Orange County Register for the local beat. They are a rising sophomore at UCLA where they edit features and student life at the Daily Bruin.

Phyllis Cha is a Pulliam fellow at IndyStar covering public safety. Her interests are in labor reporting, coverage of homelessness and enterprise reporting.

Alexis Waiss is a junior at Arizona State University’s Walter Cronkite School of Journalism where she works as a senior reporter at her university’s student-run newspaper, The State Press. 

Long Nguyen is working on his master’s degree in journalism at Georgetown University. He previously worked as a feature writer in Vietnam, where he wrote about social injustice and issues amid rapid economic development and climate change.

Xinyan Fu is a social media fellow at Fortune. She recently graduated from Emerson College. Having interned at Sampan Magazine and DigBoston, she is currently working as the managing editor for JIEMEN, a Mandarin publication focused on feminism issues.

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