A few years after Alejandra Borunda, 31, a resident of Phoenix, was diagnosed with young-onset Parkinson's disease, she began experiencing depression. On her neurologist's recommendation, she made an appointment with a therapist, who asked her some unsettling questions. After telling him she was from the city's West Side, which has a sizeable Hispanic population, he asked if her home had ever been shot at and expressed surprise that she had graduated from her high school.
He also assumed that members of her family didn't know much about Parkinson's disease. "It was weird," Borunda recalls. "It's not horrible to grow up on the West Side, my high school has a high graduation rate, and eight members of my family have Parkinson's, so we were familiar with the disease. Every assumption he made was based on my ethnicity and was incorrect."
Seth M. Keller, MD, a neurologist in private practice in New Jersey, wishes a consultation with a Middle Eastern patient with migraine had gone differently. The patient's husband joined her for the consultation and did much of the talking while she sat quietly—a situation that was normal for them, but unusual for Dr. Keller. "I know that in some cultures, a woman won't come in by herself to visit a male physician, but I was used to talking directly to patients," says Dr. Keller.
The fact that the woman was not on medication for her headaches, even after seeing a primary care physician, suggested to Dr. Keller that she and her husband were not comfortable with her taking medications—or perhaps with dealing with Western medicine in general. Dr. Keller says he felt torn between acting on his own instincts as a physician and recommending medication and holding back out of concern for the patient and her husband's reluctance and respect for their culture. He broached the subject but found himself trying to convince the husband, rather than the patient, of the value of medication. "They never came back to see me," Dr. Keller says.
The Culture Filter
Cultural differences, perceptions, and assumptions like the ones Borunda and Dr. Keller and his patient experienced can complicate diagnoses and treatment. It can also put a patient's expectations and goals at odds with a doctor's.
"The way people understand what is happening to them may not align with the way the medical system or providers are thinking about what's happening," says Leo Morales, MD, PhD, MPH, professor of medicine and chief diversity officer at the University of Washington School of Medicine in Seattle. "That can lead to behavior that is inconsistent with what the doctor thinks should occur. People may discontinue medicine or not take it, or be mistrustful of the doctor's recommendations based on biases or history, as well as cultural beliefs about illness."
In Dr. Keller's case, a difference in understanding the value of medication resulted in a lost opportunity for care. Similar problems can arise with conditions such as developmental disability, which may be viewed through a specific cultural lens, says Dr. Keller, who is past president of the American Academy of Developmental Medicine and Dentistry. For example, people from parts of the world with traditional beliefs, such as China, may regard developmental disabilities as punishment for ancestral or parental wrongdoing and therefore as a private matter or even a source of shame, which can prevent families from seeking help. (Dr. Keller notes that openness, social advocacy, and human rights activism have helped shift these beliefs.)
These differences are becoming increasingly prevalent as the nation becomes more ethnically diverse. The number of people in the United States who speak a language other than English at home grew by 158 percent between 1980 and 2010, according to the United States Census Bureau. "In addition, the percentage of people who identify themselves as having more than one race is expected to double over the next few decades," says Nicte I. Mejia, MD, MPH, assistant professor of neurology at Harvard Medical School and Massachusetts General Hospital. Resulting gaps in understanding can easily go unrecognized or be overlooked.
"Somehow we need to build cultural bridges," Dr. Morales says. "When we don't, bad things can happen."
Through a Different Lens
Culture's influence on patients begins with their symptoms. "People construct syndromes according to the way they're taught to notice things," says Jonathan Carey Jackson, MD, MPH, medical director of the International Medicine Clinic at Harborview Medical Center in Seattle and co-founder of EthnoMed, a website that provides medical and cultural information about immigrant and refugee groups. "That's especially important in neurology, which often involves symptoms that lack objective measures, such as dizziness and pain."
Some people from Cambodia and nearby regions, for example, have a disease concept known as khyol, or "wind," that has no direct equivalent in Western medicine. Dizziness is among a spectrum of khyol symptoms that also includes fever. "The understanding is that you have a state of imbalance, which may be due to causes such as overwork, lack of food or sleep, or lack of equilibrium in the basic elements of wind, water, air, and fire," says Christine Wilson Owens, program supervisor for EthnoMed and a public information specialist in the interpreter services department at Harborview Medical Center. Depending on its severity, khyol could, to a Western mind, be associated with conditions ranging from the common cold to depression.
Numerous examples of culturally rooted interpretations of neurologic conditions have been documented. A short film called "The Curse," which won the grand prize at the American Academy of Neurology's 2015 Neuro Film Festival, describes how people in Bhutan often understand epilepsy to be a supernatural curse rather than a medical condition.
People with the disease often turn to shamans and faith healers; treatment for one patient in the film consists of eating letters from a holy text.
A British study published in BMC Palliative Care in 2015 found that people in Britain from the black Caribbean community were more likely than white British people to view multiple sclerosis as divine punishment or a test of faith. Chinese people often experience depression as boredom or as forms of physical discomfort such as inner pressure, fatigue, and pain rather than sadness.
"Pain is an especially tough issue," Dr. Morales says. While pain thresholds are often roughly consistent from one person to the next, people from traditionally stoic societies, such as many Asian cultures, may have higher pain tolerance—measured in studies by how long people endure increasingly uncomfortable stimuli—or mask pain by not reacting, while people from more expressive societies may consider moaning and crying appropriate.
Humility Over Competence
Experts are quick to warn, however, that making generalizations about what particular groups believe or how they behave risks stereotyping, which can deepen biases and lead to further misunderstanding. "The problem is not seeing our own cultural biases," says Dr. Jackson.
When awareness of cultural misunderstandings in medicine first gained currency, experts tended to speak of "cultural competence." Efforts were often aimed at providing "do's and don'ts" for dealing with, say, "the Hispanic patient." But this concept of competence could lead to generalizations that may not be true of a given individual. "In recent years, people have been using the term 'cultural humility,' which I like better," Dr. Mejia says. "Humility says, 'I'm thinking about culture in the shoes of the other person while acknowledging my own potential biases.'"
Listen Carefully
Being curious about people and seeing each patient as an individual can produce more insight than assuming you understand him just because he belongs to a specific group. "There's no way any of us can be an expert on cultural, racial, or religious differences," says Alyx B. Porter, MD, a neurologist who directs a cultural humility course at the Mayo Clinic School of Medicine in Phoenix. "It's better to create a space in which we're always learning from one another."
Listening also involves paying attention to what is not said, says Joseph I. Sirven, MD, FAAN, professor and chair of neurology at Mayo Clinic in Phoenix. For example, people from non-English-speaking cultures, such as many Hispanic traditions, including Dr. Sirven's Cuban culture, often think differently about asking for help in hospitals. "The assumption for many Americans is that if there's a problem or they don't feel right, they'll press the call button," Dr. Sirven says. "But a lot of people from other cultures won't dare press the button. I'll ask why, and they'll say, 'I didn't want to disturb anyone.' So a person needing an extra level of attention could be right under your nose, and you don't see it."
Ask Questions
Asking the right questions is also important, says Dr. Sirven. "I find it can help simply to ask what scares or concerns patients."
Not gazing at a computer while conversing with a patient can also be helpful, says Charlene Hafer-Macko, MD, associate professor of neurology at the University of Maryland and board member of the Myasthenia Gravis Foundation of America. "Looking patients in the eyes helps them feel like you're understanding them," she says. "It also helps you see when they don't understand what you're saying—their eyes may glaze over or they may look puzzled—so you need to try again."
Use Translators
A big step forward in bridging cultural divides is incorporating professional medical interpreters into the clinical evaluation. In fact, offering professional interpreters is now required for providers receiving federal funding for Medicaid and Medicare services and is written into the Affordable Care Act as well as many state laws. These professionals are trained to understand clinical terminology, to avoid adding or filtering information, and to not share personally sensitive details. All of these can be pitfalls when patients with no or limited English proficiency use multilingual family members, especially children, or friends or other relatives as translators, says Dr. Morales.
"When patients who speak another language have a translator, they light up," Dr. Hafer-Macko says. "You can see they're on the same page with you."
It also can result in better care, says Dr. Mejia. In a 2017 study published in the Journal of the American Heart Association, she and colleagues found that providing interpretation services improved the chances that ischemic stroke patients with limited English proficiency received stroke education and rehabilitation.
Researcher Arthur Kleinman, MD, a pioneer in the field, developed a series of questions that ask patients to share their own views of what caused a given problem and why, how severe it is, what impact it has, and what might happen next. If patients' views differ from doctors', physicians often apply a mnemonic known as LEARN: Listen, Explain, Acknowledge, Recommend, and Negotiate. The process begins with understanding where patients are coming from, explores differing viewpoints openly, and strives to find solutions that patients will find acceptable. "There's a degree of humility in not just saying, 'This is what we're doing,'" Dr. Mejia says.
"Through curiosity, we can bring people who seem miles apart closer to understanding," Dr. Porter says. "Our hope is to work with patients and make recommendations together and have everyone abide by them. Ultimately, if we don't bridge the chasms, we'll be unsuccessful."
8 Tips for Families
Communication is a two-way street—which means patients and families can work to bridge cultural gaps as well. These steps can help.
- BRING A SUPPORT PERSON. Having a family member, friend, or caregiver along for a doctor's visit may give your neurologist a better grasp of your situation, help you think of and answer questions or clarify misunderstandings, and boost your recall of what was said, says Nicte I. Mejia, MD, MPH, assistant professor of neurology at Massachusetts General Hospital in Boston.
- IDENTIFY PRIORITIES. Help your doctor figure out what's important to you by thinking about it ahead of time. Consider what you think is wrong and how you would explain it, and bring a short list of no more than three matters you want to discuss, ranked in order of importance. "Start with the stuff that's most important, and return to it if the doctor sidesteps it," says Jonathan Carey Jackson, MD, MPH, medical director of the International Medicine Clinic at Harborview Medical Center in Seattle and co-founder of EthnoMed, a website that provides medical and cultural information about immigrant and refugee groups.
- ASK FOR AN INTERPRETER. If you or someone you advocate for isn't comfortable or adept with English, request a professional medical interpreter. Don't rely on family or friends to translate for a doctor who wants to hear every word. "I've been in situations where there's a long conversation [between family members], and I get a two-word interpretation," says Leo Morales, MD, PhD, MPH, professor of medicine and chief diversity officer at the University of Washington School of Medicine in Seattle.
- BRING YOUR PRESCRIPTION DRUGS. "It's hard to pronounce drug names correctly. Without having your medication in front of us, we're all fumbling around trying to figure out what we're talking about," Dr. Jackson says. And if you're using any form of alternative or traditional medicine, tell your doctor, regardless of whether you think he or she will approve.
- ASK ABOUT SIDE EFFECTS. Talk to your doctor about all possible side effects of the medications being prescribed. Educating yourself about your medication before you start a regimen can help ensure you don't stop taking it when expected side effects become noticeable or when you start feeling better.
- KNOW WHAT TO EXPECT. Be sure you know what a drug will cost, or any other information that might discourage you from taking the medication as directed. Also ask how you should prepare for any procedures ordered, why tests are being performed, and what out-of-pocket costs you will incur. Also ask about alternatives for a course of action about which you are concerned.
- HAVE SOMEONE ADVOCATE FOR YOU. If you're reluctant to seek medical attention because of worries about sharing information, have someone you trust call the provider. That person can ask questions about what happens to your records or if anyone else, including law enforcement, could have access to them. "You should feel safe in the health care arena," says Dr. Morales.
- CHECK YOUR OWN BIASES. "As a black woman, I've been told I don't look like a neurologist," says Alyx B. Porter, MD, a neurologist who directs a cultural humility course at the Mayo Clinic School of Medicine in Phoenix. "My hope is that as more women and underrepresented minorities go into neurology, old stereotypes will fall by the wayside and more people on both sides will have a feeling that they belong and can contribute."