Non-English- Speaking Patients With Cancer Face Big Barriers to Care in the U.S., But Help Is Available

During his cancer journey, Lin Qiao felt “very, very safe” thanks to one particular member of his care team: his daughter, Sabrina.

In the spring of 2016, Lin was hospitalized for an aortic dissection while Sabrina was a freshman at the University of Pennsylvania.

A follow-up CT scan that August revealed a mass on his kidney. He received a diagnosis of renal cell carcinoma and he underwent a partial nephrectomy the following June.

Lin, a Chinese immigrant living in Pennsylvania, was one of the approximately 145,000 people with limited English proficiency (LEP) who receive a cancer diagnosis in the United States each year, according to a study published in JAMA Network Open. Sabrina, who was 19 at the time of her father’s cancer diagnosis, served as the interpreter between him and his care team.

Speaking with CURE via email, Lin says Sabrina’s involvement in his experience with cancer was important.

“My daughter’s knowledge and help about medicine made my experience easier and made me feel that I was in better hands,” he said.

Sabrina, who was familiar with the medical system as she had dealt with autoimmune disease in high school and had routinely translated documents for her parents, says she slipped into the role of her father’s medical interpreter easily.

“After my father got sick, and it was a terrible, very traumatic thing for our family, this was just such a natural kind of overflow into how we would go about doing things,” she says.

'No One's Doing a Patient a Favor'

English-speaking and non-English- speaking patients reported having experienced similar barriers to care — including long times to schedule care appointments, confusion over whom to contact for after-hours medical issues and difficulty accessing specialists because of costs — in a study of colorectal cancer survivors published by BMC Primary Care.

But that same study found that non-English-speaking participants described additional difficulties, including uncertainty about treatment as well as knowing where and when to seek follow-up care, perceived discrimination and reluctance to impose on interpreters’ time.

Patients with limited English proficiency, according to a study published in the Clinical Journal of Oncology Nursing, experience delayed cancer diagnoses and often receive inadequate treatment, have limited understanding of the medical system and are not relayed information in their language about their cancer and treatment.

“From the moment a patient is interacting with the check-in staff, the nurse or physician to the calls they receive for appointments and scheduled procedures, having somebody not understand the language adequately can be a big barrier. The problem also falls with the health care system if they don’t have staff that can communicate with the patient properly,” says Dr. Cesar Rodriguez Valdes, associate professor of medicine at the Icahn School of Medicine at Mount Sinai and in 2022 the inaugural recipient of CURE’s Multiple Myeloma Health Equity Hero award.

That language barrier, he explains, extends beyond the patient’s direct interactions with their provider.

“We need to keep in mind that language can also be a barrier for making appointments, (speaking to) answering services, (coordination of ) ancillary care, and financial, social worker and other departments within the health care system that should be equipped to have either somebody fluent in that language or a translating service that can help assist,” he says.

Federal law, however, is on patients’ side.

“What is important is that patients understand their rights regarding medical interpreters. No one’s doing a patient a favor by bringing an interpreter into the room; that provider or medical system is not able to provide a reimbursable service without providing clear communication via interpreter services for LEP individuals,” says Dr. Estelamari Rodriguez, associate director of community outreach-thoracic oncology at the University of Miami Sylvester Comprehensive Cancer Center and 2022 recipient of CURE’s Lung Cancer Heroes® award.

Title VI of the Civil Rights Act of 1964, as the Clinical Journal of Oncology Nursing study explained, mandates that interpretation services be provided to patients with limited English proficiency and that health care providers receiving federal funding provide equal care access for those patients.

The United States Department of Health and Human Services’ National Culturally and Linguistically Appropriate Services Standards mandate that health care organizations offer language assistance at no cost to patients, while the Affordable Care Act recommends linguistically appropriate patient education documents and signage and offers funding for hospitals to provide qualified interpreters, according to the study.

“I would hope patients will have someone in their family who will demand interpreter services when needed,” Rodriguez says. “Because you might see the clinic struggling to set it up, but that’s a systems problem if the hospital is not set up to provide free-of-charge medical interpreters or have the technology to provide it by phone or computer. They have to fix that — and you have to call them on it.”

Additionally, there are patient advocacy organizations such as Global Resource for Advancing Cancer Education, which provides informational videos in English, Spanish and Mandarin, as well as Latinas Contra Cancer, which offers Spanish-language services such as support groups and patient naviga- tion. Various translation services are accessible online and there is multilingual information on the websites of the National Cancer Institute, the Centers for Disease Control and Prevention and the American Cancer Society.

“There are resources with translators online, (such as) using videoconferences that you can do (in) real time and they will translate for you,” Rodriguez Valdes says. “There are also translators by phone that are located in either other
parts of the country or other parts of the world that can translate real time. And then there’s a lot of new apps and gadgets that can help you translate on the spot, whether it be text, or give you words in a different language. These are great resources, and that’s really helped facilitate the care to patients who do not speak English – but they still have their limitations.”

Factors such as interruptions due to interpretation or differences in dialect can affect the information exchanged between patient and provider, he says.

Enlisting the Help of Family Members?

Lin, now 65, said he believes his daughter’s role in his cancer journey brought them closer together.

“I never doubted that my daughter translated the wrong thing,” he says.

He can’t recall any frustrations caused by relying on his daughter for medical interpretation and says he would tell other patients with cancer that children who can do so “are the best bet in terms of translating.”

The doctors CURE spoke to, however, say that enlisting family members to serve as medical interpreters is generally not providers’ preferred route, for multiple reasons. Certified interpreters are also required in certain settings, limiting some people, including family members or friends, from performing those duties.

“At the at the end of the day, it comes down to patients feeling empowered to demand that a translator is in the room,” Rodriguez says. “Patients can choose to bring a family member in the room to help with translation but that can be problematic in some cases. When we are discussing sensitive issues like prognosis, sexual history, end-of-life care, patients may not be comfortable with the family members in the room. “So we don’t really rely on family members to be medical interpreters. It’s not the right thing to do.”

Relying on family members for interpretation during a cancer journey also takes its toll on the loved one doing the interpreting, as Sabrina, now a Manhattan-based writer, can attest.

“It was extremely emotionally taxing in terms of just the fear and the general worry,” she says.

“I really structured my entire days around my father,” Sabrina explains, “not necessarily just the running to appointments in between classes ... but just the mental toll it would take, to be in class and know that OK, well, he has a scan next week or he has a scan tomorrow and then what do we need to prepare? Am I going to be prepared to interpret these findings afterward and am I going to be able to relay the information to him?

“Because at a certain point also I remember having a conversation with my mom where she was like, ‘I know that you are scared. But every time he sees you worried, it worries him.’ And (I was) trying to regulate that as well, which I could under- stand but it was also extremely difficult for me not to worry.”

'I Just Wanted to Live'

Zulma Zoraida Limas Rodriguez speaks only a little English. But when she received a diagnosis of breast cancer in 2014, she didn’t care that she had to speak to her care team through a Spanish-to- English interpreter.

“I just wanted treatment,” Rodriguez tells CURE through an interpreter. “I really didn’t care whether the translators heard personal things because, of course, it’s a very personal thing. I just wanted to live so I didn’t care about what I had to do.”

Rodriguez, who lives in Wisconsin, underwent surgery to have both breasts removed, followed by chemotherapy in 2015, as a patient of UW Carbone Cancer Center.

Now 51, she has a family history of cancer.

“I am afraid, and there are times when I am overcome with fear because my mother died of cancer and my father has cancer. He is beyond recovery,” she says. “And every time I see a person who is ill with cancer, I am afraid. But I do try to be positive and to help other people.”

She is now offering fellow patients the sort of help — and companion- ship — she wishes she’d had when beginning her cancer journey nearly a decade ago. She now volunteers with the UW Health Breast Center Patient Survivor Advocates program.

“I did have a problem in that I didn’t know any other patients who were going through this,” she says. “I didn’t know what was going to happen in terms of the chemotherapy. And so now I volunteer to help women with cancer talk about the experience and I’m very happy to be able to help them.”

Vital support, it turns out, can come from connections between patients, especially if they have common bonds.

“Sometimes, by going to support group meetings, (patients) may be able to meet a friend that you know is bilingual, and may help them also navigate the process,” says Dr. Cecil Benitez, who works in the radiation oncology department of UCLA Health.

“But I always think it’s a good idea to — just because you don’t know the language, it doesn’t mean you can’t speak up for yourself — find someone who will listen and ask for those resources,” Benitez says.

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