Winter 2013

East Meets West

Two distinct cultures, one at Tufts Medical Center and the other in Chinatown, are connecting in new and promising ways

By Bruce Morgan

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Laurel Leslie and Carolyn Leung Rubin, members of Project ADAPT, share a laugh at a recent meeting. Photo: Yoon S. Byun

If the early 20th-century painter Edward Hopper could transport his easel to Boston in 2013, he would feel right at home amid the worn brick buildings of Chinatown. The neighborhood is small and densely settled by Chinese immigrants who tend to be poorer and older than residents in other parts of the city, according to U.S. Census data analyzed by the Boston Redevelopment Authority in 2003. Chinatown also happens to surround Tufts Medical Center and the medical school.

These two very different worlds are now coming together. “This is our community. If we’re not addressing health issues here, something’s lacking,” says Laurel Leslie, who oversees the Tufts Clinical and Translational Science Institute’s current efforts to build bridges between Tufts and its Asian-American neighbors. (CTSI aims to improve public health by facilitating collaborations between biomedical researchers and the outside world.) Susan Parsons, associate director for community involvement and population science at the Tufts Cancer Center, couldn’t agree more with Leslie’s perspective. As she remembers, “a number of us here thought, How can we do better with community involvement?” The answer has taken, and is continuing to take, many forms.

Our story about how a medical enterprise is taking steps to improve the health of an entire community consists of two parts. In the first, we learn about a rare form of cancer linked to southeastern China that occurs at startling rates among residents of Boston’s Chinatown, and see how this need is being addressed. In the second, we explore a few of the challenges posed by two cultures living side by side. The process of gaining mutual understanding occurs gradually, one smile or sympathetic conversation at a time.

 

Photo: Yoon S. Byun

Photo: Yoon S. Byun

One-Two Punch

A rare cancer found at alarmingly high rates in Chinatown is being treated on two fronts: screenings in the clinic and the search for a cure in the lab

When the current chief of the Division of Head and Neck Surgery at Tufts Medical Center arrived at his job seven years ago, he had a big surprise waiting for him in the form of a cancer so rare that it occurs in about one in 100,000 people worldwide. Suddenly Richard Wein,’97, an associate professor at Tufts Medical School, was encountering nasopharyngeal carcinoma, or NPC, at levels he had never seen—as high as 15 percent of all cancers screenings picked up in his clinic patients.

“I got here and said, ‘Wow,’ ” notes Wein, who had come across just one case in five years during his residency at the University of Rochester. Why the elevated levels in Wein’s clinic? The apparent reason had to do with the hospital’s location, in the heart of Chinatown, a densely packed Boston neighborhood with a large immigrant population. More than half of Chinatown’s 6,000 residents have moved here from Southeast Asia, and southeastern China in particular, where NPC rates are among the highest in the world. Although the exact cause for the correlation is unknown, researchers suspect that the region’s prevalent diet of highly salted fish, in combination with exposure to the Epstein-Barr virus, may account for the spike.

NPC occurs in a golf ball-sized region at the center of the head, where the throat and nasal passages join. The symptoms, which are subtle, include ear pain, nasal secretions and, in some cases, a mass inside the neck. The cancer most commonly occurs in middle-aged men, but it can also affect women. With early detection and treatment with radiation and chemotherapy, the five-year survival rate for NPC can be as high as 85 percent. If caught late, survival rates dip below 50 percent.

Given that they see nasopharyngeal cancer patients at three times the national average, Wein and his clinical team harbor ambitions to make Tufts Medical Center a national center of excellence for the disease. However, witnessing elevated NPC levels among a population that lives literally across the street has raised some obvious questions. How can Tufts doctors respond to this public health need most effectively? And how should the cultural gap between Western medicine and the Asian population most apt to be stricken with the disease be addressed? Wein and his colleagues in otolaryngology have responded by expanding their services and doubling down on their outreach to the Chinese-American community.

As a first step, Wein sets aside one clinic morning a week primarily for his Asian patients. This involves arranging for two hospital interpreters to be there, and allowing time for the three-way exchanges that such patient interactions require. (A 2003 analysis of the 2000 U.S. Census data done by the city of Boston found that nearly two-thirds of Chinatown residents speak little or no English.) “When it takes extra time, you just have to make room for it,” Wein says. At a pace of 10 to 15 patients per week, the clinic sees as many as 750 Chinese Americans over the course of a year.

Seeing a patient in the clinic often means seeing an entire family. Because English proficiency is relatively uncommon in the Chinatown community, especially among older Chinese-American patients, a clinic visit may entail aunts, uncles, children and grandchildren arriving en masse. A younger member of the family with greater fluency in English may be able to counsel his or her elder relative and reassure the person about what is going on.

Family ties are the bedrock of Chinatown. Karen Freund is a professor of medicine and a nationally recognized expert in treating patients from different cultures who sees patients through her primary-care practice—and one of just 20 American Cancer Society clinical professors in the United States. She recalls getting a weekend call from a Chinese-American man who was concerned about his grandmother’s health. Although the young man didn’t live in Chinatown, he visited his grandmother every day to check on her, and stayed alert to even small changes in her condition. “I was struck by how close that relationship was,” says Freund, who relied on the grandson’s acumen to develop a treatment plan for the grandmother.

Elie Rebeiz, chair of the Department of Otolaryngology, and interpreter  Karina Chen screen patient Ly Toan.

Elie Rebeiz, chair of the Department of Otolaryngology, and interpreter Karina Chen screen patient Ly Toan. Photo: Yoon S. Byun

The Screening Process

Specialized clinics are one way of reaching out. Another way is through the free NPC screenings that Tufts Medical Center offers three times a year. These are promoted by means of blast emails to hundreds of Chinatown residents; informational pamphlets (printed in Chinese on one side, English on the other, with anatomical diagrams) distributed around the hospital; and display ads in Sampan, the main Chinese-language newspaper in Chinatown.

At the most recent NPC screening, held at Tufts Medical Center’s otolaryngology department in mid-November, every effort was made to dampen anxiety for the Asian-American visitors. For many, this would be their first visit to the big hospital they had walked past many times. Yoshie Ng and Joshua Ngo, interpreters who work for the medical center—and speak seven Asian languages, including four Chinese dialects, between them—sat with patients individually as soon as they came through the door to gather medical histories.

Thirteen people were scheduled for examinations. If the past were any guide, most people would be coming a short distance of a block or two for the screening; a few might travel from as far away as Quincy, Mass., or Providence, R.I., areas that are home to significant Asian-American communities. The exam takes 15 to 20 minutes from start to finish. Since the NPC screening effort began five years ago, approximately 200 people have been screened, with about 10 percent of them warranting further diagnostic evaluation.

The screening procedure, while pain-free, is about as mysterious as it could be for someone new to the experience. First, a white-coated medical person using a hand-held device that resembles a pistol releases a blast of air into the patient’s nostril, making an abrupt sound like the air hose used to fill tires at a gas station. The blast delivers an anesthetic mist. (“It’s bitter tasting, but you can swallow it,” one patient was told.) Then a long, snaking tube, called a nasal endoscope, is inserted into the patient’s nostril and edged to the back of the nasal passage, where it enables the doctor or nurse to look around for signs of nasopharyngeal cancer.

In the Laboratory

Pamela Smith, M.D./Ph.D., assistant professor of medicine, has a split personality when it comes to NPC. For the past five years, she has divided her time between treating patients who have the disease and conducting laboratory research into precisely how the cancer migrates along a cellular pathway from the nose and throat to other parts of the body. She is equally passionate either way.

“The problem with the disease is location,” she begins. “It’s located high up and in the back of the throat. And then the symptoms are not that obvious. They might include something like an ear infection—well, this is not something a typical man is apt to seek attention for. Even a doctor who’s not used to seeing NPC might examine the patient and not see it. The patient can look fairly normal. It’s only later, when the patient gets bad headaches, or suffers visual defects like double vision, that the disease becomes more obvious, and at that point, the cure rate may only be 50 or 60 percent.”

Smith is trained as an immunologist. Her research, which she describes as “mid-stream,” focuses on a particular cellular pathway that stimulates cancer cells to grow and helps expand their reach to other sites within the body. Smith has found a drug that “interferes” with the function of the pathway. This is good news, but an incomplete victory, in her view. The mechanism for the spread of NPC has been hindered. “This has had an effect on those outlying sites, but not at the point of the cancer’s origin,” Smith points out. “Wouldn’t it be nice if we could find the trigger that causes the cancer to grow and hit that?” Her goal in the lab is to get closer to the “source point” for the disease.

That’s down the road. Meanwhile, Chinese-American patients keep showing up in her office exam rooms, often in great distress. Her typical patient, Smith suggests, has been hit hard by NPC. “Imagine that you’re a middle-aged man with kids, working at a low-paying job in Chinatown, as many of my patients are, and you get this disease. It’s devastating,” she says. “The cancer tends to be advanced, and it’s extremely difficult to treat. A number of my patients have told me that they work in a restaurant and have been fired once they start to lose hair or otherwise look sick from their cancer treatment.”

Smith is emphatic about the importance of Tufts Medical Center’s rising to meet the challenge of a disease that’s at once rare, acute and near at hand. “We can offer easy access to good screening for NPC as a starter,” she asserts. “Then we need to offer our patients the highest quality treatment and be available to treat them further if their cancer comes back. I hope we’re offering them a place where they can rely on us to find and treat their disease as well as anywhere.”

 

Tufts Medical Center interpreter Yoshie Ng gathers medical history from a patient.

Tufts Medical Center interpreter Yoshie Ng gathers medical history from a patient. Photo: Yoon S. Byun

Being Attuned

Tufts Medical Center works hard to learn from its Asian-American neighbors and deliver the care they need

Hospitals are tough places to get around in for everyone. Generally large, multiwinged structures with few clear directions for a new patient, they can be like crossword puzzles that are nearly impossible to solve. Warm welcomes are rare. Does anyone greet you at the hospital entrance? Are the signs coherent in their meaning?

Getting people through the door is the easy part, says Susan Koch-Weser, an assistant professor at the medical school whose specialty is the expansive field of what is known as “patient navigation.” Once patients are inside the hospital, she asks, “Can you care for them in a timely fashion in whatever system of care is appropriate?” In part, says Koch-Weser, the answer involves being sensitive to each patient’s native culture. “It’s something that we’re missing in modern medicine—that’s falling through the cracks,” she claims.

Chinese-American patients pose a special challenge. Susan Parsons, a professor of medicine who oversees much of the outreach that’s occurred between Tufts Medical Center and Chinatown, its host community, in recent years, cites America’s “war on cancer” as an example of the typically aggressive approach of Western medicine. Eastern therapies, in contrast, stress a balance of elements where the goal is harmony, she notes. Koch-Weser agrees on the cultural chasm, saying, “For our Chinese-American patients, it’s a big step for them to say they’re going to do this Western thing.”

Perhaps surprisingly, the mesh of the two cultures has not been studied much. A recent search of the medical literature found just 12 studies examining patient navigation among Asian immigrants, says Parsons, and none of the funded federal grants in this general area has targeted Asian immigrants within their scope. “We’re doing some of the first studies that will look at this,” confirms Karen Freund, a professor who’s nationally known in the area of medical and cultural dynamics.

Tufts has therefore embarked on a new frontier, driven by two critical realizations: Connecting with Chinatown is the right thing to do, and now is the time to do it.

Associate Professor Laurel Leslie, who heads up the community engagement effort for the Tufts Clinical and Translational Science Institute (CTSI), the organization charged with making laboratory work pay dividends in the wider world, sees all the moves occurring between Tufts and the Asian-American community as the start of a beautiful friendship. “We’re trying to build [that relationship] from the grassroots up,” she says.

Project ADAPT (Addressing Disparities in Asian Populations through Translational Research), a new program under the direction of Carolyn Lueng Rubin within CTSI that includes researchers, administrators, medical providers and community partners, is key to the effort. The Tufts participants at the monthly meetings of Project ADAPT are there largely to listen. Rather than have a medical investigator presume what the needs of a neighborhood might be and proceed from there—enacting what Leslie calls “the helicopter approach” to research—residents of Chinatown speak for themselves and say, “This is an issue in our community.”

Photo: Yoon S. Byun

Photo: Yoon S. Byun

A spirit of collaboration animates the ADAPT model, Leslie explains, “because, in the end, what good is research unless it’s going back into the community, into the streets and having an impact on people’s lives?” Casting the net wide extends the logic. Accordingly, ADAPT has offered a program called Building Your Capacity (BYC) that’s aimed at drawing more community-based organizations into the conversation. A recent BYC workshop held in Chinatown drew 18 participants representing 10 community agencies.

Much of the work to be done is reparative, Tufts people admit, coming as it does after times when the two communities were not always in step. When residents were surveyed at ADAPT’s formation about their prior involvement with Tufts research, many said they had found it to be a waste of time, says Sujata Ghosh, an ADAPT community partner who works on domestic violence programs in Chinatown. “They didn’t see anything coming back,” she reports.

Language barriers remain. There is no single Chinese language, of course, but multiple regional dialects instead. Cantonese (linked to southern China) predominates as the main language of Chinatown, with Mandarin (common in more northern regions of China) on the rise.

Interpreters at Tufts Medical Center stay busy facilitating community/hospital interactions at every turn. Of 15 interpreters on staff, six speak Chinese. “We are jack-of-all-trades,” says Yoshie Ng, an interpreter who was born in Taiwan and has worked at Tufts for more than a dozen years. “We help with scheduling appointments; we call patients with reminders of their appointments; we relay messages to them from the doctors and nurses, and we follow up on care.”

Ng’s involvement reaches beyond the routine demands of her job. She has volunteered to interpret for a weekly hourlong session every Friday (run by Marybeth Singer, a clinical instructor in anesthesiology) for Chinese-American patients undergoing chemotherapy, during which she fields any questions they may have. Ng also manages to teach a class in basic Chinese for first- and second-year Tufts medical students eager to connect better with the Chinese-speaking patients who may await them in their practices.

Knowledge of the other brings a closeness that builds on itself, preparing the ground for better days to come. Recently a Chinese-American man and his wife, newly arrived in this country, were out walking in Boston when the wife fell and broke her hip at a downtown subway station. When the couple was brought to the emergency room at Tufts Medical Center, staff and interpreters quickly gathered around the two to ask if there was anything they needed.

Soon after this traumatic incident, the husband was diagnosed with cancer and scheduled for treatment at Tufts. At that point he wrote a heartfelt letter to Eric Beyer, CEO of Tufts Medical Center, relating the couple’s positive earlier experience and concluding simply, “I have confidence in this hospital because I know they will take care of me.” One more connection had been made.

 

Tufts Medical Center (in blue) is surrounded by Chinatown. Source: U.S. Census 2000, Boston Redevelopment Authority Report, 2003

Tufts Medical Center (in blue) is surrounded by Chinatown. Source: U.S. Census 2000, Boston Redevelopment Authority Report, 2003

Chinatown At A Glance

 

137

acres of land area

Population: 6,015

 

Population density:

44 people/acre (vs. 20 people/acre Boston)

Age 65+: 21%

(vs. 10% Boston)

Language proficiency:

81% of residents ages 5 to 17 speak Asian language plus English well or very well; 11% of residents age 65+ speak Asian language plus English well or very well.

 

Bruce Morgan, the editor of this magazine, can be reached at bruce.morgan@tufts.edu.

 

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