Deborah Gilboa had an unconventional path not only to becoming a family practice physician but also to becoming one of the few doctors in the nation who is fluent in American Sign Language.
After completing a bachelor's degree in theater at Carnegie Mellon University in 1992, the Chicago native took a job as stage manager with Deaf West Theater in Los Angeles. It was a transformational experience. Immersed in deaf culture, she was surprised at how frequently her colleagues spoke about their difficulties communicating with doctors. As someone considering medicine as a career, she paid close attention.
Upon returning to Pittsburgh to complete prerequisites for admission to medical school, Dr. Gilboa became a certified ASL interpreter. Throughout medical school at the University of Pittsburgh, she gained valuable experience by interpreting in emergency rooms and other health care settings. When she finished her degree, she joined the staff of the Squirrel Hill Health Center, a federally funded agency whose mission is to remove barriers to high quality health care, including communication barriers. Patients who use the center, including many immigrants and refugees, speak numerous languages, all of which are accommodated by bilingual staff or interpreters.
"Deborah's ability in ASL made her attractive to us," said Susan Friedberg Kalson, CEO of the center. "She has such empathy for people who have overcome barriers to get health care."
People who are deaf or hard-of-hearing are said to be one of most underserved disability populations in terms of health care. Lack of sign language interpretation is the most frequent subject of Department of Justice cases regarding compliance with the Americans with Disabilities Act in health care settings, according to the website ada.gov.
The ADA requires medical facilities to provide "appropriate auxiliary aids and services when necessary to ensure effective communication." Besides lawsuits, the negative consequences of forgoing such accommodations can range from minor misunderstandings to life-threatening situations.
Amid the call for greater compliance with the law, awareness seems to be growing in the health care world. Interviews with representatives of UPMC's Disabilities Resource Center and two hospitals in the Allegheny Health Network (Allegheny General and Jefferson Regional) revealed commitment to providing accommodations for inpatients and outpatients through a combination of live interpreters, video remote interpreting, assistive listening devices and ongoing staff training. An addition to UPMC facilities is video relay phone service for inpatient use.
People who are deaf or hard of hearing are estimated to be about 10 percent of the population, said Amy Hart, CEO of the Center for Hearing and Deaf Services, the largest regional provider of interpreters and related services. Of that 10 percent, about 6 percent are "culturally deaf," meaning they use sign language as their first language.
Over the past year, the center has fulfilled 6,000 requests for interpreters in health care settings in 22 counties. Two-thirds of the requests came from hospitals; one-third from private practices. According to Ms. Hart, the main barriers that keep health care providers from using ASL interpreters seem to be not understanding the obligation to do so under the law and resistance to the cost of interpreters, which typically range from $40 to $60 per hour.
The center receives calls weekly from patients who complain about difficulty in obtaining ASL interpretation in health care. Some report that they are asked to bring their own interpreters, use family or friends as interpreters, or choose other facilities that provide ASL. In many cases, the patient acquiesces in order to maintain the relationship with the doctor. But sign language interpretation is "not just a convenience," said Ms. Hart. "It's a critical part of health care."
Dr. Gilboa sees more than 100 patients who are deaf and speaks nationally to physicians about understanding this population. She says that using handwritten notes is not sufficient. "We need to communicate in a way that is best for the patient, not for us."
At the same time, she says, hiring sign language interpreters can be "a huge burden" on physicians. "Many have to pay out of pocket. Insurance doesn't help at all. There's a huge disincentive. It's not as simple as saying 'those poor people and those mean doctors.' There's a real tension."
But the real bottom line is that effective care is not possible without adequate communication, she says. "When I see a new patient who is deaf, often the patient will express health problems to me that they have never expressed before because of the difficulty of communicating with doctors in the past. For example, they might not know the results of tests."
Chris Noschese, a patient of Dr. Gilboa and a leader in the deaf community, said that before choosing Dr. Gilboa as his physician a few years ago, he frequently wrote notes back and forth with his doctor during appointments. "It took so much time, and doctors are short on time. With someone who knows ASL, I can express myself freely. I can ask a question. We can really communicate."
Michelle Ruotolo, 33, of Penn Hills, who delivered her first child a year ago at Magee-Womens Hospital of UPMC, said it was an outstanding experience because she was provided with a sign language interpreter at every prenatal visit and during the delivery. "When you're giving birth, nurses and other people are coming and going all the time. How would I know what was going on without an interpreter?"
The use of video remote interpreting, which involves video conferencing with a sign language interpreter during a medical visit, is growing rapidly. "It's immediately available and for quick procedures, like blood draws, it can be cheaper than an interpreter," said Ms. Hart. "It can also work well as a bridge to a live interpreter."
She noted, however, that many in the deaf community oppose its use in medical settings. "It doesn't give nearly the information that a live interpreter can."
Dr. Gilboa continues to advocate for optimal communication between doctors and deaf patients. "The deaf community puts up with uncertainty about their health care that leaves them poorer for it, and I don't mean financially," she said. "As doctors, we want to know what's really going on. The deaf community's expectations of doctors is very low. We need to raise those expectations."
Health care resources for people who are deaf and hard of hearing:
■ Pennsylvania Office for Deaf and Hard of Hearing (www.dli.state.pa.us/odhh) provides information and advocates for accessibility.
■ HealthBridges (http://healthbridges.info) provides resources for people who are deaf or hard of hearing and helps health care providers understand accommodations and disability rights.
■ The City of Pittsburgh/Allegheny County Task Force on Disabilities has a publication on hospital compliance guidelines for people who are deaf, deaf-blind or hard of hearing: www.pittsburghpa.gov/dcp/files/ada/11_ADA_Hospital_Compliance_Guidelines.pdf