A midnight phone call
In the middle of the night, the daughter of an Alzheimer’s patient jumped into her car and drove to her mother’s nursing home after receiving a call saying that her mother was very agitated and ‘no one could calm her down.’ Disorientation about time and place is a recognized symptom of advanced Alzheimer’s. Still, it took some sleuthing for the daughter to trace and eventually identify the cause of her mother’s deepening confusion.
Dr. Mushira Khan, a gerontologist at the Mather Institute in Evanston, IL, had interviewed the family for a study on care and support exchanges in immigrant South Asian families. The family are practicing Muslims, she said. The daughter realized her mother became anxious after a dog wandered into her room – the nursing facility had introduced companion pets for residents.
In the Muslim faith, the presence of an animal taints a praying space. Her Urdu-speaking mother wanted the impure area cleaned but could not express that need to the staff. “Her fragmented memory remembered parts of her religious practice,” explained Dr. Khan, but her inability to communicate her request in English added stress to an already fraught situation. Once the room was cleaned, the mother calmed down.
This combination of linguistic barriers, cognitive impairment, and cultural differences demonstrates how limited English-speaking patients can experience more adverse events in their healthcare journey.
“It goes beyond just basic language or linguistic proficiency,” added Dr. Khan. “The long-term facility wouldn’t have realized its implications. How would they have known?”
Health illiteracy
Dr. Khan studies issues of access that create barriers to healthy aging among South Asians. She explained that negative health outcomes result not only from a lack of proficiency in the English language but also from the atypical ways different cultures use and understand language.
In South Asian culture, for example, it’s common to say, ‘Oh, I’m just feeling so depressed’ to explain feeling unwell rather than to mean that one is experiencing actual symptoms of depression. An English-speaking elder who participated in the study told Dr. Khan that he alarmed their doctor by saying his wife (who spoke no English) ‘was feeling a little depressed.’ The provider, says Dr. Khan, grew concerned about ‘connotations of elder abuse.’
“There wasn’t this cultural understanding,” she added. The granddaughter who accompanied her grandparents to the appointment to serve as interpreter said it took her “like ten minutes to convince the provider that her grandfather didn’t mean it in the way that you think.” She had to advocate for her grandmother who could not advocate for herself.
The granddaughter said of the exhausting encounter, “Just trying to convince everybody that ‘No, it’s not what you’re thinking,’ involved so much emotional labor.”
The lack of vocabulary to describe a medical condition can exacerbate miscommunication said Dr. Khan. In her study, for example, she discovered there is no direct equivalent for the word dementia in many South Asian languages. Instead, the casual, almost derogatory reference to memory loss is the term ‘losing their mind’. “That doesn’t convey an understanding of the medical condition,” said Dr. Khan.
Some participants revealed a lack of awareness about what constitutes a normal part of aging and what might potentially be Alzheimer’s disease or other related dementia, said Dr. Khan. In that case, language becomes a barrier to grasping the implications of a diagnosis. “When there is no direct translation into a South Asian language – there is no health literacy,” she added.
Cultural considerations
Even when a patient speaks English, as they age, factors like hearing loss can impact their understanding of a medical situation.
Accents began to confound her 89-year-old mother as she experienced hearing loss says Dr. Rakhshan Chida, a New York-based Infectious Disease specialist. Her mother, originally from Pakistan, spoke English. But as she developed hearing issues, she found it easier to communicate in her native Urdu. As they age immigrant elders tend to “hear their own language better than a foreign one,” added Dr. Chida.
Her mother’s hearing loss, coupled with the macular degeneration that impaired her eyesight, made her uncomfortable going to doctor appointments by herself. One time, a physician got irritated when her mother did not respond properly to his questions, said Dr. Chida. Sometimes older people nod when they cannot hear clearly, rather than ask a medical provider to repeat themselves. “So from then on, I went to all her visits with her to explain things.”
Language barriers make interactions more susceptible to error when accents get in the way.
In Costa Mesa, CA, 82-year-old Jaswant Gulliya, who immigrated to the U.S. in 2017, has trouble deciphering accents. His daughter Rashmi Goel, a pharmaceutical executive, always accompanies her father to his doctor’s visits. “I usually go along to make sure Dad doesn’t forget to ask his doctor the questions he’s concerned about.” Her father speaks English with an Indian accent she says. His doctor who is an immigrant from Vietnam also has an accent. Goel steps in as an interpreter because both patient and provider have difficulty understanding each other’s accents.
Impact on providers and patients
“Language barriers occur when healthcare providers and patients do not share a native language,” reports the NIH study. When physicians have difficulty understanding patients who do not speak their language, it leads to poorer health outcomes, reduces patient and provider satisfaction, and challenges patient safety.
It’s a dilemma that Infectious Disease Specialist and Medical Director Dr. Rakhshan Chida grapples with at her New York-based OTP (opioid treatment program). The clinic provides addiction services to a very vulnerable population of about 650 patients who get methadone and suboxone to treat their opioid addiction. The team tries to coordinate care with different services. “For example, we try to work with Medicaid to provide transport services to their appointments,” says Dr. Chida.
At the clinic, she treats a 65-year-old patient from an Indian background who only knows a few words of English. He cannot read. “He actually is illiterate.” says Dr. Chida. His severe opioid addiction is compounded by multiple medical comorbidities – diabetes, and ulcers on his legs that require wound care. However because he lives close by, he is not eligible for transport services, even though he has issues with ambulation. So, he uses a walker to get to the clinic.
This patient always seeks her out says Dr. Chida, because she speaks Urdu and can understand some of the Punjabi language he uses to communicate. His family abandoned him and he lacks a support system for his care.
Adverse health outcomes
“It’s a big problem,” says Dr. Chida. “First of all, there’s the stigma of addiction. Because of the language barrier, no one really understands what he’s trying to say, and he has a lot of questions. Sometimes he takes his meds, and sometimes he doesn’t.”
“It can be dangerous for him. Not being able to communicate his needs or follow the treatment, you know, he could have negative outcomes.”
Dr. Chida has tried to answer his questions, find him a healthcare counselor, organize a home health aide, and seek follow-up medical appointments. She is apprehensive.
“He’s not following through with the treatment plan. Being a diabetic, and having open ulcers, he can go into sepsis. He’s had multiple admissions to the hospital. When he comes out of the hospital, the discharge papers, recommend follow-ups or physiotherapy,” she says. “But he just doesn’t understand what he’s supposed to do.”
The patient himself feels frustrated with the healthcare system. He complains that doctors are in a rush because of the 15-minute slot allotted to each patient. He told Dr. Chida, “Nobody listens to me.”
She worries that her patient is doing very poorly right now. “He just goes to the ER whenever he feels ill. It’s a very sad state of affairs. In the long run, his health is just deteriorating. He may end up losing his life because he’s a diabetic, he has all of these portals of entry for infection. He can develop sepsis and that’s what our fear is.”
Disadvantages for limited-English speakers
The NIH study reported that language barriers disadvantage limited English speakers in several ways. Failure in communication with medical providers could lead to wrong diagnoses. Unequal treatment associated with unequal access to healthcare could result from patients missing medical appointments or having difficulty arranging appointments. They may have trouble understanding the label on medication or get confused over how to use medication. Sometimes patients simply do not seek healthcare services for fear of not understanding their healthcare provider. Several studies have shown that patients who face language barriers have poorer health outcomes.
Healthcare providers are required to deliver high-quality healthcare to ensure equity to all their patients. However, physicians say the additional burden of a language barrier in a 15-minute time slot makes it even more challenging to address a patient’s understanding of a medical issue or give them instructions.
At her primary care office at a cardiology practice with Columbia Doctors in New York, Dr. Renu Lalwani, an Indian-origin physician often treats older patients from the South Asian community for common conditions like cardiac issues, hypertension, diabetes, and obesity. She says their common cultural background allows her to provide effective care, as she understands cultural factors that can impact health outcomes.
Patient X
During Ramadan, a patient who was underweight and fasting came in complaining of back pain. “I was worried about her weight loss,” says Dr. Lalwani. “Something else was going on. Eventually, I figured out that her pain was stress related.” The woman was working long hours as a housekeeper to send money back home to her husband in Bangladesh.
It helped that Dr. Lalwani spoke Hindi and understood Bengali. Her patient spoke in such heavily accented English that “no one could figure out what she was saying. I actually understand Bengali, so she talked to me in Bengali. But eventually, I had to have her family come in to help,”
“There’s stuff that you will never get to know about their stress or anxiety,” said Dr. Lalwani. “You have to spend time with them or talk to their family members to get to the bottom of the issue. You can’t do that in 15 minutes.”
Interpreter intervention
Doctors need to take the time to understand the root causes of a patient’s issues, added Dr. Lalwani, or else it leads to inadequate treatment and potential long-term health consequences. She discovered her patient was going to different doctors with her complaint and getting assorted prescriptions for pain medication. “The medication list kept growing” making the patient increasingly unhappy that none of her doctors had resolved her problem.
Getting patients to understand their treatment plan is a challenge says Dr. Lalwani. When patients don’t speak English, she encourages them to bring in family members who do, or use the practice’s interpreter service. Sometimes her Pakistani patients who only speak Urdu will bring grandchildren to serve as interpreters. But even with the interpreter’s intervention, Dr. Lalwani says, “There’s no way for me to know what’s being said. I have no idea if what I’m trying to tell the patient is conveyed or what the patient is trying to tell me is accurate.”
One patient in his late 70s came in for a GI issue and refused the interpreter service claiming he could understand his diagnosis, medications, and treatment instructions. After his lab results came back with abnormal findings, Dr. Lalwani referred him to a nephrologist and a urologist for further investigation. At his next visit, she discovered he had not made the appointments assuming that she would make them for him. “He came into the clinic in so much pain,” said Dr. Lalwani, but it turned out he did not understand what an X-ray or a CAT scan was for, where to go, what a kidney stone was, and what he needed to do about it. “He didn’t even understand what a nephrologist or urologist did.”
Realizing she needed more than 15 minutes with this patient, Dr. Lalwani asked her staff to block a 60-minute slot. “I basically told my staff I have to help him. But I can’t do that in 15 minutes.” She needed the hour to get an interpreter on the phone, review his history, and medication list, order tests, and then explain what was happening. “That whole process needed an hour.”
Safety measures
Years of dealing with limited English speakers have taught Dr. Lalwani to take more time and extra precautions with her patients. She writes down clear instructions especially if they are hard of hearing. “I see cardiology patients who double their blood pressure medication, for example, or patients who take two types of diabetic medication even if we’ve only switched from one med to another. They don’t understand and they’ve taken both of them. They’ll say yes to me, even if they don’t understand.”
She reviews medications and dosages and asks patients to repeat what they’ve understood. “The harm comes from over-medication or wrong instructions or not following instructions,” she adds.
If patients need simple exercises for their back, legs, or shoulders, “I’ll show them. I actually make them do it right here.”
Interpreter services
Hospitals, clinics, researchers, and healthcare providers seek multiple ways to overcome language barriers and address the disparities that limited English speakers encounter in their pursuit of equitable healthcare.
Dr. Mushira Khan suggests distributing in-language infographics and one-page leaflets on health issues in cultural centers, temples, and mosques where South Asian elders tend to congregate. “We don’t see the uptake of material in provider’s offices, but in community-based settings, they can share, discuss amongst themselves, and actually try to make sense of what’s going on.”
An NIH study reported that interpreter services can increase patient satisfaction, access, and communication in healthcare, even though these services increase the cost and duration of treatment. It’s estimated that interpreter services for Medicaid recipients run about $4.7 million annually.
Over 70% of limited English proficiency patients (LEPPs) reported limited availability of interpreter services. Most people prefer using local or neighborhood clinics though larger hospitals offer more comprehensive services, said Dr. Chida. She explained that small healthcare settings like her OTP clinic can only provide limited interpreter services.
The study also suggests implementing free and easy-to-access online translation tools such as Google Translate and MediBabble which can address the challenges of language barriers and improve healthcare delivery, patient safety, as well as patient and provider satisfaction.
What’s a Mediterranean diet?
While translation and interpreter services could help dismantle language barriers, the lack of culturally congruent materials may remain a stumbling block.
For example, Dr. Lalwani shared her clinic’s instructions for a Heart-Healthy Diet translated into Bengali which refers to eliminating cheese, hot dogs, and sausages, that are not part of a South Asian diet.
Translating healthy eating guides into multiple languages is a great first step, says Dr. Khan, for South Asian elders countering cardiac issues, hypertension, and diabetes. “But the recipes are really not culturally congruent. If a physician recommends the Mediterranean diet, to someone eating dhal, which is packed with protein, every day, it’s not going to resonate.”
“When we talk of language, it’s not just about translating material but also, what alternatives can we provide in a culturally appropriate way.”
This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations, and The John A. Hartford Foundation.
References
Khan, M.M, & Shah, S. (2023). “We are all spiritual beings on a human journey”: gerotranscendence and generativity in the stories of South Asian American older adults. Journal of Religion, Spirituality & Aging, 1-16.
Implications of Language Barriers for Healthcare
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7201401/
Of duty and diaspora:(Re) negotiating the intergenerational contract in South Asian Muslim families
MM Khan – Journal of Aging Studies, 2023