A female patient from Somalia who does not speak much English hesitates to explain symptoms of her suspected rheumatologic disease.
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Explore This IssueJanuary 2010
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A Spanish-speaking patient with fibromyalgia brings along her young son to help translate.
A hospital translator stumbles to explain the intricacies of lupus to a patient.
These are just some of the common scenarios that rheumatologists encounter when treating patients who are limited English proficient (LEP). As challenging as these situations may be, the quest for solutions to better reach these patients is key, because 37 million Americans are foreign born, according to the Joint Commission. Additionally, 54 million speak a language other than English at home; slightly less than half of this population is considered LEP.
Federal law requires hospitals to provide reasonable language access services for patients who are LEP or who are deaf or hard of hearing. In some states, interpreters and specific language resources must be available at hospitals for LEP patients.
English-language barriers can make an already time-strapped medical staff struggle a little more. “Whenever there’s an intermediary [like a translator], it takes more time,” says rheumatologist Eric S. Schned, MD, a rheumatologist at Park Nicollet Clinic in Minneapolis.
On the other end, the patients, often already nervous about their medical symptoms, may feel limited by their loss for words in English. “When you speak, you feel vulnerable,” says Maria Conceicao, a Spanish and Portuguese interpreter based in the Washington, D.C., area.
The specialty of rheumatology is hit particularly hard when language barriers arise. “A lot of the concepts are complicated,” says Karen Onel, MD, director of the rheumatology training program at the University of Chicago/La Rabida Children’s Hospital. Also, rheumatology doesn’t always have the “fame” of other health conditions. “A lot of people have heard about heart attacks. Not as many people have heard of osteoarthritis,” Dr. Onel adds.
“Think of how complicated it is to explain an autoimmune disease to a patient. Now translate it into a different language. Unless you are a native speaker and understand the culture the patient comes from, you will have a difficult time explaining the disorders and potential treatment options,” says Alfonso E. Bello, MD, clinical associate professor of medicine at the University of Illinois College of Medicine at Chicago, Illinois Bone and Joint Institute, LLC.
The Pros and Cons of Translation
The natural solution when working with LEP patients in rheumatology or any medical specialty is to obtain help from translators or a translation service. This option has both advantages and disadvantages, many say.
For example, in private practice and when dealing with less common languages, a phone service that translates information for patients may be the first available choice. “Some find the phone system comforting. I find it difficult,” says Ellen M. Ginzler, MD, MPH, chief of rheumatology at State University of New York (SUNY)-Downstate Medical Center in Brooklyn, N.Y. She says that while phone-based translations can be helpful for obtaining a patient history, she never feels quite comfortable that the phone-based translation accurately conveys what the patient needs to know.
“The jury is still out on phone banks,” says Laura Robbins, DSW, associate scientist and vice president of education and academic affairs at the Hospital for Special Surgery in New York. “It’s better than nothing, but translation is not just about language. It’s also about nuances.”
The next common solution is translation with the help of a family member, another option that many say is an all-too-easy solution. Although having a family member translate is better than no interpretation at all, it can put relatives in touchy situations.
“It raises ethical issues,” says Dharma E. Cortés, Ph.D., clinical instructor in sociology at the Cambridge Health Alliance, Harvard Medical School, and senior research associate at the Mauricio Gastón Institute of the University of Massachusetts-Boston. “First, you have someone who is not trained in interpretation managing the flow between the doctor and the patient. Second, you have the issue of multiple roles.” For example, family members may not know how much or how little to interpret; underage children who are interpreting for their parents are placed in the unfair position of decoding medical information and taking on a parental role, Dr. Cortés adds. The role of the child as the translator happens all too often in pediatric rheumatology, Dr. Onel says.
There may also be situations where a family member intentionally does not translate what the physician has said because of cultural mores or for fear of the patient’s reaction, Dr. Onel says.
Hospitals in diverse areas are more accustomed to the use of onsite translators. For example, at hospitals like SUNY-Downstate, Creole, Spanish, Chinese, Russian, and Eastern European languages are just some of the languages for which the hospital often obtains translation help, Dr. Ginzler says. At places like Parc Nicollet, translators must help immigrants and refugees who come from various parts of the world, including a variety of African, Latin American, and Asian countries, Dr. Schned says. In fact, at his organization, interpreters are required to be present even if a family member who can interpret is already there, he says.
One important point to consider is that a trained interpreter is present to merely interpret what is being said, maintaining the register used by the medical staff, Dr. Cortés says. That said, sometimes interpreters are the physicians’ lifeline in terms of understanding what a patient is saying—or not revealing, Dr. Schned says. “I’ll often talk to the interpreters privately. They can tell me what they sensed from the patient,” he says.
However, solid training as both an interpreter and in medical terminology is crucial. Sometimes, interpreters who have not had proper training will even make mistakes, Dr. Cortés says. For example, they may feel uncertain about asking the physician to stop talking so they can provide an accurate translation. Other times, they may misinterpret information. “A nurse was commenting on a patient’s blurry vision and said it could be part of uncontrolled diabetes. The community health worker [incorrectly] told the patient that she may have diabetes in the eye. However, that’s what that person thought the nurse actually said,” Dr. Cortés says.
Other times, translators are flummoxed by medical words that are nearly impossible to translate.
Even though the time crunch added with a translator in the exam room may present a scheduling squeeze, it’s important for physicians and other medical workers to respect that additional time, says Conceicao. She has seen patients overwhelmed by caring for their health problems or those of their children, and they additionally feel scared because they may not have health insurance or may be in the country illegally. The language issue is just one more stressor.
“Besides not speaking English, these patients are already overwhelmed,” she says. “Doctors should speak slowly for the translator’s accuracy.”
Culture and Literacy Also Play a Role
Culture and literacy are also sometimes intertwined with language barriers. Culture affects patients’ ability to understand what their rheumatologists are telling them. “Culture may be more important than language,” says Dr. Onel.
For example, says Dr. Robbins, a patient with a swollen joint that’s hot may believe the joint needs something cold, like a cold compress, because this would be the typical treatment in their culture. They may have trouble understanding the idea of using a heating pad. Other cultures may be hesitant to discuss certain symptoms because of a stigma that surrounds them—but not discussing those symptoms impedes their possible treatment. Sometimes, patients may not even be aware of how their culture is affecting their perception of their care, Dr. Ginzler says.
“It’s tricky to know if responses are filtered through cultural issues,” Dr. Schned says.
However, culture may not be as strong a factor in the translation issue as many think, counters Dr. Cortés. “I think culture is overrated. A lot of people are quite familiar with the culture of medicine and the healthcare system. It comes down to clear communication.”
Literacy is another concern at times. A patient may not speak English well and may not be able to read or write well in his or her native language. For instance, Dr. Onel gives the example of a mother who was given information in Spanish on her child’s juvenile dermatomyositis. However, the mother could not read.
Sometimes literacy is the problem, and other times the problem is specifically health literacy. A National Assessment of Adult Literacy study from 2003 found that 36% of American adults, or 78 million people, had only basic or below-basic health literacy skills.1 The elderly, people with limited education, ethnic minorities, and LEPs were identified as high-risk population groups that often scored at basic or below-basic levels on the assessment, according to the American Medical Association’s “Health literacy and patient safety: Help patients understand.”2
Despite language barriers, there are some strategies that hospitals and private practices can use to better reach LEP patients.
One effective method is reaching out to peer leaders, Dr. Robbins says. The Hospital of Special Surgery has phone lines for lupus patients in English, Spanish, and certain Asian languages. When a patient calls the phone number, he or she speaks to another person who has lupus, who speaks the native language, and who has been trained to speak about the disease. Tapping into the help from peer leaders also is useful for clinical trials, she adds (see “Involving LEPs in Clinical Trials,” above left).
“It would behoove the average rheumatologist in an office to think about these kinds of resources and refer patients to places that can help,” she says.
Self-help groups for patients who speak certain languages could also be helpful, Dr. Ginzler says. This may relieve the burden of patient education, which is often hard to complete during examinations.
For written patient education, the ACR has more than a dozen information sheets in Spanish about various rheumatologic diseases. Organizations such as the Arthritis Foundation and the Lupus Foundation and the National Institute for Arthritis, Musculoskeletal and Skin Diseases also have a wealth of material in Spanish. And Dr. Onel likes the idea of making more patient education visual, which is something she has observed for kidney-transplant patient education.
Although it may be difficult to fit in patient education during initial consults and follow-ups, physicians should not make the mistake of assuming patients understand something just because they say they do, Dr. Cortés says. Aim for clear communication in nontechnical words, and ask patients to teach back to you what they have learned, she recommends. Asking patients how they think they got the disease they have can reveal cultural perceptions and help physicians address any misconceptions, Dr. Robbins says.
Finally, hiring physicians or other staff persons who speak the native language and are familiar with the culture (or cultures) in your patient mix can help. Dr. Ginzler speaks highly of a study coordinator at her hospital who speaks Mandarin Chinese and has a medical background, for instance. Dr. Bello, who is a first-generation son of Colombian-born parents, learned from his physician uncles how to better communicate with his Hispanic patients. “I still use colloquial words and phrases to better communicate,” he says.
Vanessa Caceres is a medical writer and editor in Florida.
- Kutner M, Greenberg E, Jin Y, Paulsen C. The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy. US Department of Education. National Center for Education Statistics (NCES) Publication No. 2006-483; September 2006.
- Weiss, BD. Health literacy and patient safety: Help patients understand. 2nd ed. American Medical Association Foundation; 2007. Available at www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf. Accessed December 3, 2009.
Involving LEPs in Clinical Trials
Recruiting LEPs into clinical trials can be difficult, say a number of rheumatologists. First, there’s the trust factor of getting patients to agree to participate. Some minority groups may be very wary about what kind of treatment they will receive and how the results will be used, Dr. Robbins says. Others who are in the United States illegally may worry about revealing personal data in a clinical trial.
Community leaders can help with recruitment and educating LEP patients about clinical trials. At the same time, the organization sponsoring the clinical trial and the hospitals involved should show how the trial will benefit the community, Dr. Robbins adds.
At some hospitals, it is not common to have LEP patients participate in clinical trials. “We have 300 patients in clinical trials, and 290 of them speak English,” says Daniel J. Wallace MD, clinical professor of medicine at Cedars-Sinai/David Geffen School of Medicine at the University of California Los Angeles. “These situations arise when a patient is ill and requires a treatment and is not a citizen and has no insurance.”
Paperwork involved in clinical trials, such as consent forms, should be translated into other languages. Organizations that sponsor clinical trials usually pay the costs for this translation and to have those translations approved by the Institutional Review Board (IRB), to ensure that the translation is accurate. These forms as well as other documents in healthcare often undergo a sophisticated process called back translation, which gets to the root of the questions being asked instead of a word-for-word translation, Dr. Robbins says.
Sometimes translations are done by outside organizations, while other times they are done by the hospital. For example, at SUNY-Downstate, the study coordinator can translate consent forms into Mandarin Chinese, Dr. Ginzler says. Translations often have to take into account different variations of the same language that occur among speakers from different countries. “Our IRB has a translation service (as do the sponsors on occasion), and in nearly all cases, we are dealing with Spanish,” Dr. Wallace says.
However, in some situations, even with translations, the forms can still be difficult to read. “The forms read as horribly as they read in English,” says Dr. Onel, thinking about the high-level language often used in consent forms.