Even in a place as diverse as New York City, Mandarin and Spanish-speaking patients with limited English proficiency (LEP) are much less likely than English speakers to get connected to care for three of the top cancers that affect their communities, according to a new study. This is true as early as their first call to make an appointment with an oncologist after getting diagnosed. And it happens in New York’s most linguistically diverse boroughs — Queens, the Bronx, and Brooklyn — at similar rates to states and counties with medium or low numbers of LEP residents.
The 101 on this “secret shopper” study of limited-English speakers
The study, published in the September 2023 issue of the Journal of the National Comprehensive Cancer Network, looked at what happened when simulated patient callers called the general information telephone line of 144 hospitals between November 2021 and June 2022. The hospitals chosen were located in the three most diverse counties in 12 demographically diverse states. (New York was one of them.)
It’s an “elegant” study, a “really interesting way to capture what happens to patients,” according to Dr. Lisa Diamond, an associate attending physician at Memorial Sloan Kettering Cancer Center and researcher at the Immigrant Health and Cancer Disparities Service in New York City, who was not involved in the study.
In this so-called “secret shopper” study conducted by researchers at the University of Michigan, trained investigators were assigned to the roles of English-speaking, Spanish-speaking, and Mandarin-speaking patient callers who needed care for colon, lung, or thyroid cancer.
Why these types of cancer?
Colon and lung cancer are two of the three most common causes of cancer deaths for Hispanic and Asian patients. Thyroid cancer is the second most common cancer among Hispanic and Asian women in the United States.
Of the 1,296 calls, nearly all the English-speaking callers (93.5%) were offered next steps to access cancer care, such as the telephone number for a presumed clinic or being transferred to a department presumed to offer the requested care. But only about a third of the Spanish-speaking callers (37.7%) had the same experience, and even fewer for Mandarin-speaking callers (27.5%).
“I knew it wasn’t going to be a 100% success rate,” Dr. Debbie W. Chen, the lead author of the study, told Epicenter-NYC, citing how common it is for people who call a hospital information line to get hung up on or disconnected at some point. “But that wide of a range, how different those numbers were, was shocking.”
The vast majority of the simulated Spanish — or Mandarin — speaking patient callers experienced a myriad of barriers to access next steps in cancer care. They were told “no,” hung up on, accidentally disconnected or put on hold for more than a half hour. Or their call ended because the automated message required input but didn’t give instructions in their language. Or they had problems at the level of interpreter services.
For cancer care in particular, if you can’t get access to the doctor you need to see, “that has implications for patients’ outcomes, how well they do, other things down the line that are much more important than just getting a number,” Chen said. If patients with cancer can’t access information on where to receive the appropriate cancer care, it also makes her wonder what other critical information they aren’t able to access in our healthcare system.
While the study didn’t specifically look at these other situations, the lack of access at this early stage in cancer care due to language barriers raises concerns about other social determinants of health.
For instance, how can patients who don’t receive even this simple information then think about logistical hurdles, like arranging for chemotherapy? Taking time off work, paying for out-of-pocket expenses, and affording child care for multiple doctor visits and treatments are just a few of these additional barriers.
LEP patients, who are more likely to be people of color, already tend to experience other obstacles to health care access at disproportionate rates. These include gaps in health insurance coverage due to language barriers and racial and ethnic disparities in everything from economic and food insecurity to receiving appropriate medical treatment.
“The Farewell” factor among limited-English speakers
There’s yet another hidden barrier to cancer care access: the tendency for certain communities, including Mandarin- and Spanish-speaking ones, to withhold health information to protect their family when dealing with severe diseases.
Diamond has experienced this cultural quirk with patients at Memorial Sloan Kettering. She likens it to the premise of the 2019 film “The Farewell,” which is based on a true story. It’s about a family that goes to great lengths to hide from the matriarch the fact that she has stage 4 lung cancer and has been given three months to live.
In the film, the protagonist’s mother tells her, “Chinese people have a saying — when people get cancer, they die. It’s not the cancer that kills them. It’s the fear.”
Diamond recalled a tricky situation with a Spanish-speaking woman who had a recurrence of cancer and the patient’s daughter. (Some details were changed to protect the patient’s privacy.)
“You can’t tell her she has cancer,” the daughter told a perplexed Diamond when her mother came in for radiation. “Yes, she knows she had cancer before. But if she knew it was back, she would be devastated and she would just give up.”
When Diamond asked whether the mother knew why she was receiving radiation, the daughter replied, “Well, she knows that there’s a mass. Just don’t say it’s cancer.”
Diamond didn’t object. She understood the daughter’s reasoning and grasped the family dynamics at play. It didn’t matter much, from Diamond’s standpoint, whether she was calling it “cancer” or “a mass” or “a tumor.”
Then one morning, when the daughter wasn’t around, her mother grabbed the doctor’s arm.
“I know I have cancer,” she told Diamond. “But if my daughter knew that I knew, we would both cry. So I’m pretending that I don’t know, and I know she’s trying to protect me.”
Diamond and the woman began to laugh.
“I know this is crazy, but it’s all coming from a place of love,” she told her doctor. Diamond agreed it was wacky. But she also saw its sweetness, and beauty in the bizarreness, she told Epicenter.
The University of Michigan researchers proposed several ways to address the problems Mandarin- and Spanish-speaking callers encountered in their study. In their paper, they suggest a few tech-based fixes: default auto-messages on hospital general information telephone lines should connect callers to a live person instead of disconnecting when a caller doesn’t enter input. Hospitals that care for a large LEP patient population should also include instructions over the phone in languages other than English.
Their study findings also suggest that hospital general information personnel shouldn’t hang up on callers before learning the reason for the call. When the call involves the aid of a language interpreter, especially when through an external agency, the personnel should remain on the three-way call.
At the same time, leaving access to adequate interpretation up to just hospital staff — who may unintentionally contribute to the problem if the technology doesn’t support language access — is a mistake, Diamond told Epicenter. Lots of NYC hospitals have the necessary tech; it’s just a matter of folding them into the workflow, she explained. At Memorial Sloan, for instance, all staff have an app installed to connect to medical interpretation services.
However hospitals or health systems do it, Diamond said, they need to invest in “more language services, more access, making things easier for people when they’re sick and vulnerable and coming to you for help.”
This is part of a series of articles exploring health inequities in New York that is funded by a grant from the Commonwealth Fund.