Written by Sabrina Qiao
Reviewed for Medical Accuracy by Jake Prigoff
One morning, in April of 2016, my father woke up early for a cardiology appointment. That afternoon, I got a call. The doctor’s voice carried a mixture of surprise and doubt as we spoke. “Your parents didn’t tell you?” he asked. “I sent your father to the ER.”
By the time the doctor called, my father was probably already in the CT scanner, staring up at the donut-shaped opening and listening to the mechanical whir of the device. But my father didn’t fully comprehend what was happening yet. “There were a lot of medical terms,” he later explained, “that I didn’t know.” I pieced the story together through his scans, squinting at words such as: pulmonary emboli, thoracic aortic dissection, dependent atelectasis, poring through search engines, through medical journals, so I could devise a way to translate these terms into Mandarin.
As the daughter of Chinese immigrants, I’ve done this often: it’s called language brokering. I’ve been an interpreter, a translator, a mediator. When the doctors admitted my father to the ICU, I wondered not only if he was in pain, but also if he had the language to convey that pain. Did he understand what the doctors were asking?
I researched his case, but concrete filled my lungs every time I did a new Google search. At one point, I sat my father down with a diagram and tried to explain the dissection. I traced my finger along the candy cane shape of the aorta, but I kept thinking about how high the mortality rate was, approaching one in every four patients at three years. Salt crawled up my throat, the thick outlines of the blood vessel blurring, until finally I pushed the paper away and said, “It doesn’t matter. You’re better now.”
Three months later, my father’s follow-up CT scans showed a solid right renal mass representing renal cell carcinoma until proven otherwise. My parents didn’t think much of it. They were glad that the pulmonary emboli had dissolved. They weren’t sure what a carcinoma was, but “we didn’t want to worry you,” my mother later said. “If there was a problem, we figured the doctor would call.”
It pains me that my parents could sense my fear towards translating, my reluctance over the emotional burden of it. I became a writer to tell the stories my parents struggled to tell, and still, I often lack the words for them.
As the daughter and only child of an immigrant patient, I walk the tightrope of two identities, caregiver and translator. I’ve been language brokering since I was a kid. It’s a commonality that unites many children of immigrant families. Earlier this year, 10-year-old Maggie Carrillo Vázquez moved radio listeners when she dialed into KQED to ask a medical question on behalf of her parents. The audience listened to her code-switching, the pauses in between her answers as she worked rapidly to translate her mother’s Spanish into English. Later, KQED invited listeners to submit their own stories of language brokering, and the thread filled with anecdotes: appealing to landlords, poring through government forms, translating at the doctor’s office.
Children often step into the role of translator not because interpreter services don’t exist, but because these services aren’t as common as expected. A 2016 Health Affairs study found that nearly one in three hospitals in the United States lack the language accessibility options required under federal law. Even in hospitals that support these resources, the standards may be subpar and the availability constrained. Soma Roy, 35, remembers getting the call an hour after her mother was admitted to the ER. It was the beginning of the pandemic, when family members were barred from accompanying patients inside the hospital, but the doctor asked her to return. Her mother was apparently “not cooperating” during the physical exam. In reality, the physician had been speaking English, which Roy’s mother had trouble understanding.
At intake, Roy had warned the clinicians there would be a communication barrier: Her mother is a Bengali immigrant with limited English fluency, and her brain tumors had further deteriorated her language comprehension. The intake clinicians had assured Roy an interpreter would be called. However, for the duration of her mother’s hospital stay, Roy and her family became the de-facto translators. At one point, a neurosurgery resident came to perform a cognitive exam. He held up a penny and asked Roy’s mother what it was. Roy translated the question, repeating it a different way when her mother didn’t hear it at first. “Don’t tell her the answer,” the resident sniped, and Roy thought why would I try to help my mother cheat on a cognitive exam? You asked me to translate but suddenly understand Bengali?
“Little things” like that happened, but the bigger consequences were more distressing: What would her mother miss if Roy wasn’t present? After her mother’s neurosurgery, she had physical therapy sessions where an interpreter listened through the phone. Sometimes Roy and her family would also attend these sessions. “Your mother acts differently when you guys are around,” the therapist complained, but it was a concern of communication, not attitude. The translator spoke too fast and in a formalBengali that Roy’s mother couldn’t grasp. Roy stepped in and modified the translations into something more manageable.
One of the most deleterious consequences of language barriers is this erasure of information and what becomes—often unintentionally—“lost in translation.” For Eduardo Gutierrez, 23, these gaps in knowledge happened innocuously, through small decisions that had potentially larger impacts. This was especially true in regards to healthcare information. Gutierrez started translating for his parents when he was only 4 years old, after the family immigrated from Lima, Peru. Throughout his childhood, he remembers instances of reading over a document and tripping over a few words. Sometimes, he’d tell his mom, Don’t worry, there’s nothing significant here—but perhaps there had been. Other times, he made phone calls to customer service lines for clarification, but the representative would pause and ask to speak to a guardian or parent. “In those cases, my parents would just say ‘Oh my gosh, don’t call them. They’re going to do this whole ordeal,” Gutierrez says. “And maybe we skipped out on some healthcare notice when we shouldn’t have.”
When he was older, Gutierrez realized his parents’ reactions to such calls were also a reflection of their vulnerability. “I could tell my parents didn’t like the fact that they couldn’t advocate or communicate for themselves,” he says. “I’m sure my mom saying, ‘Oh that’s too much of a hassle’ probably could have also been ‘hey I’m a bit embarrassed that my child has to explain things for me.’”
Feelings of embarrassment, shame, and helplessness contribute to how language barriers result in unequal access to healthcare, and these emotional dynamics also affect how information is relayed through third parties, what meanings may become sanitized or muted due to discomfort from either the speaker or translator. “There are things that kids are embarrassed about,” Gutierrez says. “Things that parents are embarrassed about. Whatever immigrant kids are reporting, I feel like they’re not reporting everything.” The emotional burden of translating is especially fraught in a healthcare setting, but it bleeds out into other areas as well: mortgage payments, financial statements, utility bills. “You start seeing into your parents' lives,” Gutierrez says. “I felt like I was carrying the world on top of me all throughout middle and high school.”
An inversion of expectations develops when a child has to become an interpreter, an advocate, and a caregiver for a parent. Language brokering in adolescents has been linked to increased levels of anxiety, depression, and certain risk-taking behaviors. I was 19 when my father was diagnosed with renal cell carcinoma, in addition to his other cardiovascular issues. I did my research, impersonated him through emails to doctors, and tried to keep my voice even as I discussed treatment options with his urologist. I used to hyperventilate after his appointments, sitting in the shower and struggling to breathe through the umbra of water pelting me. When I think of that year, I think of fluorescent lighting, the scent of antiseptic, and the way my father’s spine curved like a question mark on the exam room table. He’d be nodding along as his urologist spoke, but I’d wonder Is he listening? How much does he understand?
There was a deeper nuance to be found in my father’s perceptions of his medical care. Addressing language barriers within healthcare also necessitates a confrontation with cultural competency. “When we talk about cultural awareness,” Irebid Gilbert, 28, says, “we're talking about different values, different norms, different beliefs and that all plays a role on how to treat a patient.” Gilbert co-founded Herencia Indígena to provide clinical translation and advocacy services for Mixteco speakers in the Central Coast area. Her organization also trains providers in cultural sensitivity, which includes recognizing and addressing the commonalities of the indingeous community, such as a distrust of healthcare providers and preference for natural remedies over pharmacologics.
An analogous divide exists in Chinese culture, which features a dichotomy between eastern and western medicine, between a more holistic versus a more allopathic focus. Attitudes towards healthcare providers are impacted by the strong emphasis placed on self-reliance and avoiding shame in Chinese culture, which may create an atmosphere of suspicion that impedes open and honest conversations between patient and physicians. Compared to other immigrant groups, Asian have a particularly low rate of health and social service use. On WeChat, the messaging application popular among East Asian users, fraudulent health claims proliferate. In Mandarin, there’s an aphorism that roughly translates to: “In every medication, 30% of it is poison.”
When my father’s cancer went into remission, he wanted to pare down the medications he took. Certain cancers cause a higher incidence of blood clots, but after my father’s tumor was excised, he decided he no longer needed his anticoagulants. “The body knows how to heal itself,” he said. “I don’t want to introduce all these chemicals into mine.” One afternoon, I stood in the kitchen, his tiny, pink pills in one hand, a mug of coffee in the other. I could really do this I thought. He would never know. But then I saw the expiration date stamped on the bottle and thought, shit. A few months later, he clotted again, a series of emboli in his lungs, a large thrombus in his calf. “I know what’s best for my body,” he kept saying, until he landed in the hospital again.
When Tiffany Ran, 35, became her father’s caregiver, she noticed he held a similar attitude towards his health. Her father was a Taiwanese immigrant and had Parkinson’s, severe scoliosis, and—she suspects—dementia and unaddressed mental health issues. Over a period of 10 years, Ran’s father deteriorated physically and cognitively, prone to volatile outbursts but resistant to help. “He was a typical Asian dad,” she says. “He never wanted to disclose what was wrong with him or what he struggled with.” At appointments, doctors spoke to her instead, asking probing questions to which she didn’t know the answer. In return, she tried to prompt her father: Why don’t you tell the doctor about why you don’t want to take this medication? But she had to be cautious. He had a way of shutting down when confronted with information he didn’t want to hear, a “stone face,” as she called it: frozen mouth, furrowed brows, displaced eye contact. “Once that face [comes] up,” she says, “I know there’s no way of getting through to him.”
When considering cultural complexities, confronting language barriers extends beyond lexical frameworks and must address the intricacies of rhetoric. There’s a gradation of urgency within language; it is one thing to Google the vocabulary for take your pills, but it is another to develop a cogent argument that will reshape a deeply held cultural belief. When interacting with her father, Ran was used to hopscotching between English and Chinese, but her Mandarin fluency was only conversational, and her father’s English comprehension had deteriorated. She learned to “oversimplify” decisions for him or to make them without consulting him at all. Children of immigrant patients often exist in this liminal space between providing care and trying to become a parent. “You have one relationship with somebody your whole life,” Ran says, “and then you become the mother to your father, and it changes the relationship completely. I felt like I had to say goodbye to my father twice,” but each time, she lacked the emotional lexicon in Mandarin to convey what he was doing to her.
Two years before his passing, Ran had a cataclysmic fight with her father, a fight from which she doesn’t think they ever recovered. It occurred on a hectic day filled with appointments: the doctors, the lab, and then the attorney’s office. She and her father were to establish his will and living trust, a decision he specifically suggested himself, but there was a setback at the hospital, and her father “threw a public fit” and demanded to be taken home. They were in the middle of a medical plaza, surrounded by a sea of benches, the hallways lined with different doctors’ offices. She could feel people’s eyes on them as her father jammed his hands on the brakes of his wheelchair and hurled incriminations at her. He wore his “stone face.” He accused her of forcing him to see an estate lawyer, of scheming for his money even though she was his only child.
“That was it for me,” she says. Standing there, trying to reason with her father, she felt humiliated, degraded. “There were a lot of moments over the years, but when this happened, I thought, ‘What am I doing this all for?’” She left and took an hour long drive around the parking lot, waiting to cool down. When she returned, she coaxed him into the car. At home, she wrote him a letter, struggling to articulate eight years worth of pent up emotions: I don’t know how much of this is you or your disease...but you dropped the ball. You failed yourself and you failed me. You could have been healthier, you could have been better, but you didn’t want to do the work. You have to trust me.You have no reason not to trust me.
She asked her mother, who lived in Taiwan, to translate the message. Her mother ended up sanitizing many lines, taking out some of the finality, reducing the anger. The letter she eventually folded up—its font large and easily legible, its pages wrapped around a roll of cash she had withdrawn from the bank that morning; her father liked to keep money on hand—was different than the one she intended to write. She placed it on his bedside table, but “I don’t know how he felt or thought about it,” she says. “My father never acknowledged that he read it.”