When you’re hospitalized or in pain, understanding a doctor’s diagnosis or a nurse’s instructions is hard enough. But when you’re deaf, it can feel like being shut out.
Ellen Thielman, a retired computer programmer, found that out twice this year. Deaf since infancy, the Sacramento resident has navigated the hearing world for years – graduating from college, raising two children and working more than 20 years for several California state government departments.
But when Thielman, 67, landed in the emergency room last January with what she thought might be symptoms of a stroke, she was frustrated by the lack of adequate sign-language interpreters and her inability to effectively talk with medical staff.
“I was furious, upset and a bit traumatized. I felt really alone,” said Thielman, who lives independently but needs a service dog to hear even her own doorbell.
Thielman wasn’t misdiagnosed, mistreated or given improper medications. Still, in two emergency room visits and subsequent hospital stays this year at Mercy General Hospital in Sacramento, she said she frequently felt isolated and unsure why she was getting certain injections or exactly what her medical status was. Both times, she said, it took three to four hours for a trained interpreter to arrive in the emergency room. Later, in the hospital, she was unable to schedule an interpreter to meet with her doctors.
During her multi-night hospital stays, her primary means of conversation was to scribble back-and-forth notes with her nurses and doctors.
The struggle to communicate with medical providers is a common complaint among the deaf and hard of hearing and has resulted in dozens of legal settlements nationwide in recent years. Since 2012, when the federal Department of Justice launched its Barrier-Free Health Care Initiative, it has concluded investigations in about 36 cases – including several in California – involving lack of interpreter services.
An estimated 37 million U.S. adults have hearing trouble, ranging from partial loss to complete deafness, according to a 2006 study by the Centers for Disease Control and Prevention. That’s up from 31.5 million in 2000.
“We get complaints weekly, if not daily,” said Sheri A. Farinha, CEO of NorCal Services for Deaf & Hard of Hearing in North Highlands, a nonprofit that represents individuals in 24 California counties.
Hospitals, medical centers and doctors’ offices top the list of U.S. entities deemed the “worst in failing to provide effective communications to deaf and hard of hearing individuals,” Howard Rosenblum, CEO of the National Association of the Deaf, said in an email.
The nonprofit, based in Silver Spring, Md., fields about 30 health care-related complaints a month from deaf and hard-of-hearing individuals, Rosenblum said.
Hospitals and other medical providers “have no idea how frustrating and dehumanizing it is for deaf and hard-of-hearing patients when they are forced to, for example, write back and forth about their stroke symptoms, lip-read the doctor who is about to perform surgery on them, or be told by their family member (and not the doctor) that they had a heart attack and will be undergoing a cardiac catheterization and possible stent placement,” Rosenblum said.
The complaints come more than 25 years after enactment of the federal Americans with Disabilities Act, or ADA, requiring public and commercial entities – including doctor’s offices and hospitals – to provide equal access and “effective communication” to those who have vision, speech or hearing impairment.
Aside from sign-language interpreters for the deaf, assistance can include “auxiliary aids and services” such as closed-caption devices, text telephones and video-conferencing tools that link up with off-site interpreters, according to a 2010 update by the U.S. Department of Justice. There is no cost to the patient but providing such help should not place an “undue” financial burden on businesses or public agencies, the ADA notes.
Although the complaints and settlements aren’t numerous, they attest to the difficulties deaf patients can face in medical settings. Patients who read lips can be stymied when doctors or medical personnel wear surgical masks, have obscuring facial hair or speak with foreign accents that make it difficult to distinguish English words. In some cases, doctors may be untrained in how to communicate with hard-of-hearing patients, unsure of what the law requires or unaware of the extent of a patient’s hearing loss.
In July 2014, Dr. Peter Chang-Sing, a Sutter Health cardiologist in Santa Rosa, was ordered to pay $4,000 to a deaf patient who alleged that the doctor’s office declined to provide him with interpreter services. As part of the settlement, Chang-Sing, who denied wrongdoing, was required to provide annual training for employees and log all interpreter requests by deaf and hard-of-hearing patients.
Last year in San Bernardino County, Arrowhead Regional Medical Center, a surgical hospital in Colton, agreed to pay $100,000 to settle claims by two deaf patients who said they were denied adequate sign language interpreters. In the August settlement, Arrowhead agreed to set up video communication services with an off-site interpreter within 20 minutes after a patient’s request, or provide an in-person interpreter within two hours of an emergency, if possible.
Written notes or asking family members to interpret are considered the least effective ways to communicate with doctors, according to federal guidelines. The Department of Justice, for instance, said family members may lack a medical vocabulary or don’t want to deliver a doctor’s bad news.
The use of medical interpreters varies by hospital. Some, like the UC Davis Medical Center in Sacramento, have a sign language interpreter on staff. Others, such as Mercy General, contract with outside agencies, whose interpreters are on call and travel to the hospital as needed. In addition, some use video remote interpreting, where a patient is linked to an off-site interpreter via a laptop or tablet screen.
Tina Contreras, whose parents are deaf, said she tries to accompany her 58-year-old mother on doctors’ and hospital visits, but with a full-time job and two kids, it’s not always feasible. As a freelance interpreter for deaf individuals, Contreras finds it dismaying that hospitals haven’t kept up with technology.
Her mother, who has kidney disease and heart issues, was recently hospitalized at Mercy San Juan Medical Center, where Contreras said there was no interpreter readily available. Instead, staffers brought her mother a TDD phone, essentially a phone with a keyboard where messages can be typed, that isn’t widely used anymore.
“It’s like bringing in a rotary phone for a hearing person,” she said. “They’re using 20-year-old technology.”
Without an interpreter, Contreras said her mother often tries to follow instructions or confers by written notes with medical providers, but frequently she doesn’t understand what’s being said. “It’s mentally draining,” she said. “You have to fight so hard and bark so loud to get interpreters.”
Clear communication in health care settings is critical to avoid “misdiagnosis and improper or delayed medical treatment,” according to the ADA. The issue affects not only those who were born deaf, but also older Americans dealing with age-related hearing loss.
Compared with all U.S. adults, those who are deaf or have significant hearing loss are nearly three times as likely to be in fair or poor health, according to a 2006 study by the CDC. They also have higher rates of smoking, diabetes, high blood pressure, excessive alcohol use, physical inactivity and obesity.
Frustrated by her inability to communicate with her doctors in January, Thielman wrote a complaint letter to Mercy.
In a written response, Laura Finn, Mercy General’s program manager for customer service and patient safety, said the hospital interviewed staffers who provided Thielman’s care and reviewed her medical record.
Although the interpreter’s arrival time “fell short of your expectations,” Finn noted, an emergency room nurse proficient in sign language was available to help until the interpreter arrived. (Thielman, however, contends the nurse was “not fluent” in sign language, once mistakenly translating that Ellen had fallen when she indicated feeling dizzy enough to pass out.)
“You can be assured that this issue has been taken seriously,” said Finn, who apologized for Thielman’s unsatisfactory experience in January.
In an email to The Bee, spokeswoman Melissa Jue of Dignity Health, the parent company of Mercy General, said, “We take patient concerns and feedback seriously and will use this as an opportunity to continue to improve on the high-quality care we provide.”
Part of the problem is a lack of training for physicians in how to accommodate deaf individuals, according to Mary Sackett, a medical malpractice defense attorney in Tiburon. Sackett, who represented Chang-Sing and has counseled about 10 other Northern California doctors on deaf-related issues in recent years, said physicians often aren’t aware of the ADA’s requirements, the types of hearing assistance available or even the full extent of a patient’s hearing loss.
“It’s a huge missing piece. If physicians are going to be held accountable for providing interpreting services, there needs to be training,” either in medical school or afterward, Sackett said.
Doctors also are expected to pay out of pocket, anywhere from $95 to $230 an hour, for interpreter services, which usually aren’t reimbursable by insurance, she noted.
Some hospitals are devising their own accommodations, including for hard-of-hearing physicians.
In 2011, the UC Davis School of Medicine in Sacramento put together a tech-assisted solution for a hearing-impaired medical student, Amanda Mooneyham, during her eight-week surgical rotation. Although she wore two hearing aids and could read lips, Mooneyham feared being unable to follow instructions and comments in surgery settings where everyone is masked and often mumbling.
At her suggestion, a microphone was clipped to the surgeon’s scrubs, linking the operating room to an off-site medical transcriber. The transcriber typed up the conversational exchanges – in real time – and they appeared on a surgery room iPad so Mooneyham could “hear” every word from the lead surgeon.
Mooneyham also improvised a homemade surgical mask with a transparent window over the mouth, making it easier to read the lips of interpreters.
Now a family practice doctor at Shasta Community Health Center in Redding, Mooneyham said she can empathize with hard-of-hearing patients. “One of the biggest struggles patients have is not having an interpreter at their bedside. It’s not feasible to have someone there 24/7, so (patients) don’t always understand what medications or fluids they’re getting or why the nurse is coming in to check their vitals.”
Effective communication in health care settings is essential for both patients and medical providers, say advocates.
“When you’re at the store or a lawyer’s office or a play, you have the choice to walk away if you can’t hear,” said NorCal’s Farinha, who is deaf. “But when you’re sick or hurt ... it becomes a matter of life or death.”