The chest pain was bad enough. Then John Paul Jebian asked staff at Baptist Hospital of Miami for an American Sign Language interpreter. They instead brought a video screen with an internet link to a remote interpreter to help him understand what the doctors and nurses were saying.
Jebian, who is deaf, said a nurse struggled to set up the equipment as he anxiously wondered whether he was suffering a heart attack.
“I was panicked,” said Jebian, 46, recalling that July 2012 day. “I didn’t know if I had to have surgery. Everything was going past me. I didn’t know what was happening, when it was happening.”
With the minutes ticking by and staff still unable to operate the video interpreting service, the hospital turned to another option. For the next six hours or so, while undergoing tests and hooked up to IVs in both arms, Jebian said he wrote notes back and forth to doctors with his limited English — he communicates primarily through ASL. He was lying down on a hospital bed with his arms out, so he couldn’t see what he was scribbling.
“I wished I had four arms at the time,” he said. “They were saying, ‘Oh, I’m sorry, I can’t find your vein,’ while I’m trying to write them notes, trying to guide them.”
A STAT review of hospital inspection reports and court records found dozens of instances around the country when deaf patients said they were not provided adequate interpreter services.
It’s challenging for hospitals to provide interpreters to the myriad patients and family members who speak different languages, from Spanish to sign language. On-site interpreters can be costly and hard to arrange, so hospitals have sought out alternatives, including video conferencing with remote interpreters, who can be helping a patient in Ohio one minute and in Oregon the next.
Many deaf patients have taken to social media to complain about the use of video interpreting services in emergency rooms. Numerous patients tell stories about a blurry video feed and describe having to set up the video interpreting service themselves when nurses don’t know how to operate the equipment, or being unable to focus on a small screen in a crowded room.
“I’m terrified to go to the hospital in these situations,” Jebian said, referring to other visits where he had similar experiences.
The chest pain episode five years ago turned out not to be a heart attack, and Jebian suffered no lasting harm. But earlier this month, Jebian, the founder of Waving Hands, a nonprofit that serves the deaf community in Miami, and another plaintiff won the right to sue the Miami hospital for discrimination.
The US Court of Appeals for the 11th Circuit ruled there was enough evidence to determine whether the patients were denied effective communication on multiple occasions when video interpreters didn’t work and handwritten notes weren’t effective, reversing a lower court decision throwing out their 2014 lawsuit.
The decision clarified the standard for effective communication, stating that it doesn’t matter whether the patient experienced a medically adverse outcome as a result.
“It doesn’t really matter if the treatment came out OK,” said Andrew Rozynski, co-director of the Eisenberg & Baum Law Center for Deaf and Hard of Hearing in New York. “What these cases assert is that they didn’t have an equal opportunity to participate in their health care.”
Baptist Health South Florida, the Miami hospital’s parent organization, defended its policies in a written statement. “We meet or exceed all requirements in terms of providing accommodations to patients with special needs, including those who are deaf or hard of hearing, and we continuously work with patients and families to make improvements,” it said.
“I’m terrified to go to the hospital in these situations.”
John Paul Jebian
Nearly 4 percent of the US population identifies as either deaf or having serious difficulty hearing, according to the US Census. The Americans with Disabilities Act mandates that hospitals receiving federal funding provide deaf patients with help to ensure effective communication. Permissible options include on-site and remote interpreting, handwritten notes, and captioned telephones. While a hospital may decide what type of aid to give a patient, the Affordable Care Act requires that hospitals give “primary consideration” to a patient’s choice.
Since 2011, the Department of Justice’s Barrier-Free Health Care Initiative has settled 16 cases involving interpreting services for deaf hospital patients, with some settlements reaching $70,000.
Inspection reports examined by STAT included the case of a mentally disabled, autistic, and deaf patient, who in March 2015 was brought to the Emergency Care Center at Sharon Regional Health System in Pennsylvania for a psychiatric evaluation. The patient signed a consent form for treatment without having been offered an effective means of communication.
“The patient is nonverbal, so I am unable to assess suicidal or homicidal ideation,” wrote a physician in a note, according to an inspection report. The hospital said it could not comment.
In some cases, deaf patients try to let their hospital know ahead of time that they prefer an on-site interpreter. Shannon Wheeler, 43, who has thyroid disease, did this when she began experiencing heart palpitations at her home in Towanda, Pa., last May.
However, she said that Guthrie Robert Packer Hospital in Sayre, Pa., told her that she could only request an interpreter once she was there. When Wheeler arrived, she was told that the hospital was still searching for an available interpreter, and she was offered video interpreting instead. Her nurse didn’t know how to set it up, so Wheeler had to do it herself, she said.
“Of course, the VRI froze,” she said, referring to the equipment. “And it froze again, and then it froze again.”
Wheeler can read lips but said that in that situation, “my mind was not in any condition to focus on lip reading.”
In a written statement, the hospital said that the emergency department staff receives training on how to operate the video interpreting service and that there can be a delay getting in-person interpreters because the hospital is in a rural area.
Deaf relatives of hospital patients can also struggle with video equipment. One morning in September 2013, Richard Quintal fell off a ladder while trimming a friend’s tree. He was rushed with a collapsed lung and broken ribs to the emergency room at Lowell General Hospital in Massachusetts.
Quintal can hear; his wife cannot. As his health care proxy — the person designated to make medical decisions if he becomes incapacitated — she needed to understand what was going on. But for the next couple hours, the video feed she was provided was so choppy that she couldn’t make out the off-site interpreter’s hands.
A doctor tried to describe her husband’s condition to her, but Cheryl Quintal understood very little. Eventually, the doctor wrote a note saying that her husband would have to be transferred to a Boston hospital.
“I was totally pissed and very confused … wondering if he will make it,” wrote Quintal in a Facebook message, adding that at one point, she wasn’t sure if he was still alive.
A few months later, she filed a complaint with the Office for Civil Rights at the US Department of Health and Human Services. The agency contacted her 14 months later, saying that it would offer advice to the hospital but would not conduct an investigation. Lowell General did not comment despite repeated phone calls and emails.
Some deaf patients become so frustrated that they give up on the video technology.
“I won’t waste my time with it,” said Rusty Thompson, 61, who goes to the emergency room at Sentara CarePlex Hospital in Hampton, Va., several times a year for treatment of vertigo. While he’s sometimes provided with an on-site interpreter for appointments made in advance, that’s not the case for emergencies.
“The room is spinning,” he said. “Having to focus on a VRI screen, on a little person right there, doesn’t help me at all.”
He said he now communicates through handwritten notes. The hospital, which would not comment on Thompson’s situation, said that its policy is to provide an on-site interpreter within two hours upon a patient’s request.
Stratus Video, a company that provides video interpreting for over 1,500 hospitals, trains hospital staff on how to use the equipment. But Kathryn Jackson, the vice president of language operations, said that hospitals choose whether to follow the company’s recommendations for when to use the service.
“It’s up to the hospitals to decide what’s the best and most effective option to effectively communicate with the individual patient,” she said. “It’s really up to the hospitals to make sure that all of their equipment is on and plugged in and working, but we’re there to assist them.”
Deaf health care advocates say that misconceptions about deafness also create communication barriers in hospitals. Kyle DeCarlo, a deaf graduate student at John Hopkins Bloomberg School of Public Health, cofounded the Deaf Health Initiative, an organization that works to make hospitals more accommodating to deaf patients.
In 2012, as a consultant at Harvard Medical School’s Office for Diversity Inclusion and Community Partnership, DeCarlo said he visited four Harvard-affiliated hospitals to try to navigate them as a deaf patient. At one hospital, when he approached the receptionist and signed that he needed an interpreter, the woman spoke back to him. When he didn’t respond verbally, he said he could tell from her expression that she had raised her voice.
“That petty issue that happens as soon as you enter a hospital, that impacts your hospital experience — that’s why deaf patients don’t go to seek medical care,” said DeCarlo in a FaceTime interview, during which he relied on lip reading. “They don’t want to experience marginalization or be stigmatized.”