Signs of the Times: Medical Students Learn to Serve the Deaf

From: UC San Diego (press release), CA - Dec 20, 2004

By Paul Mueller I December 20, 2004

Communication between patients and doctors is often hit-or-miss. Patients can be nervous, or intimidated, or inarticulate about their symptoms, and doctors can be hurried or insensitive – and that's when both speak the same language.

Now think of a patient-doctor interaction where neither understands the other, and you'll appreciate the importance of a ground-breaking training program at Moores UCSD Cancer Center – the American Sign Language (ASL), Deaf Culture and Cancer Control program. The two-year-old program trains medical students in both sign language and the culture of the deaf community, for the benefit of both patients and doctors. The training is done using content plus ASL vocabulary enrichment that will allow the students to become cancer-control experts for both deaf and hearing patients. Sommer Kaskowitz spells her name to introduce herself.

First-year medical student Lisa Arzamendi explains it this way: "Being deaf is not just about speaking another language, much less some surrogate English. In signing, there is a richness behind every movement, underlying every action and interaction, that is so telling of the cultural experience and unity of people within the deaf community." Just as the deaf may not understand health-care providers, she says, those providers don't understand the culture and experiences of the deaf and hard-of-hearing.

Imagine, she says, "learning to read without ever hearing the syllables, without being able to – literally – sound out a word. Learning to speak intelligibly and lip-read 100 percent is an unreasonable, if not formidable, task to ask of deaf people. Therefore, it becomes our responsibility as health-care providers to learn ASL and other visual modes of communication."

Those profound cultural differences, says Laurel Fox, a second-year medical student in the program, can lead to health problems in the deaf and hard-of-hearing community. "They are at risk for having cancers diagnosed in much later stages than the hearing community," she says, "which we think is related to communication barriers. You and I listen to the radio, hear the news – much of our information about health is hearing-based, and the deaf community doesn't have access to resources we take for granted."

The program also addresses other vexing issues for the deaf and hard-of-hearing: a distrust of doctors, based on bad experiences with uninformed doctors, and an unwillingness to use interpreters when discussing private health matters.

In addition, only 30 percent of English vocabulary can be lip-read, and note-writing between patient and doctor is less than optimal. For people whose primary language is ASL, English is a secondary language, and vocabulary is often limited to very basic concepts. Note-writing is time-consuming, too, and hence often abbreviated or abandoned before the full dialogue has been accomplished.

So the 20 million Americans who are either deaf or hard-of-hearing experience limited access to health care and cancer information, says Georgia Robins Sadler, a leader of the innovative ASL program. Laurel Fox describes an object to Gallaudet student Shanna Fox (no relation).

Sadler, a clinical professor of surgery and associate director for community outreach at the Cancer Center, says, "We work very closely with the leadership of our community partner, Deaf Community Services (DCS) of San Diego Inc." Leslie Elion, president of the DCS board of directors, has collaborated with her since the project's inception, Sadler says. "She and her colleagues have told the UCSD team that many patients are uncomfortable discussing personal health issues with an interpreter present. On the other hand, without an interpreter it's difficult for deaf people to understand health professionals who lack even the most rudimentary ASL skills."

Boosted by a five-year, $1.6 million grant from the National Cancer Institute, the ASL program is now in its second year, training a minimum of five students per year. Each student learns ASL during two years of electives, takes a fourth-year elective at a site with deaf patients, and has an independent study project that examines some aspect of health care for the deaf and hard-of-hearing community.

Student also spend a summer at the ASL and Deaf Culture immersion program at Gallaudet University, the nation's leading university for the deaf community and UCSD's academic partner for this project. Jacqueline Farber tapes a conversation for her finl exam with a classmate and her professor at the camera.

According to Associate Professor Linda Lytle, who coordinates the training of UCSD medical students while they attend Gallaudet, "This program has the potential for enormous impact on the health care of deaf individuals. Patient-physician communication, access to health-care information, and feeling accepted and understood by physicians are all problematic for the deaf community. It's truly exciting to know that UCSD medical students will be going out to various locations in the country and spreading ripples of change everywhere."

"We're also trying to change the nation's medical schools, to get them to look differently at sign language and the deaf community," says Sadler. "I think it's doable. We just need to help medical schools' admission committees understand that recruiting applicants who are proficient in ASL is just as important as recruiting students who are proficient in the languages of other minority communities. In fact, ASL is the third most commonly shared language in the U.S."

Melanie Nakaji, who coordinates the program with Sadler and teaches the medical students ASL and serves as a cultural trainer, adds her own insights as a deaf person to the medical students' education. "Melanie is a fabulous teacher," says Fox, one of her students. "Her experiences as a deaf woman really allow us to understand the everyday struggles and triumphs of the community. She seems to have boundless energy, and she keeps us motivated."

Arzamendi agrees. "Melanie and the many members of the deaf community who come forward to help us are teaching us so much," she says, "not just about themselves, but about ourselves as well. They're giving our futures as physicians a whole added dimension. Being deaf is so much more than being unable to hear, it's being able to identify and belong to a linguistic minority culture – we all understand this now."

Thanks to Sadler – "an amazing researcher" – says Fox, the message and success of the Cancer Center's ASL program will spread. "We're the first in the country," she says. "Perhaps other schools will establish similar programs. What a difference it will make!"

© 2004 UC San Diego