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.”

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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.”

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  • I applaud Leila Miller for writing this article and for John Paul Jebian sharing his frustrations. With one out of every seven Americans having hearing loss to the extent that communication is impacted, Jebian is not alone. Reading through these comments, I see people who are in healthcare see communication issues making their jobs harder to dispense high quality and accurate medical care as well as deaf and hard of hearing people frustrated with not being able to communicate effectively. We all do get panicked; I can relate first-hand. NEW since this article was published is FDA approval of the world’s first surgical face mask with a clear window which helps with reading facial expressions and lipreading. Please advocate for yourself (and others with hearing loss) to have effective communication with your medical and dental providers. Ask for interpreter, if you need one; ask for The Communicator mask; ask for written instructions. Your healthcare and well-being is at stake.

    • Just because it’s “never been more efficient” doesn’t mean it’s the perfect system without loads of room for improvement. Having a choppy connection and a fuzzy screen makes it difficult for the patient to understand everything that is being signed. Although most hospitals rely on it instead of finding better options, like actual interpreters, because “time is saved, money is saved.” Sometimes the extra time and money mean a world of difference. It’s called effort, not settling for inadequacy.

  • I can commiserate with a patient in distress and more so during unexpected instrumentation failure to comply, due to unexpected or weather conditions.

    Technology has been ready to deal with translation and off hands vocal commands for a good decade almost. Hospital workflows are so huge and complex, it has to account for so much and unexpected.
    The deft and blind conditions adds to the level of complexity even if Braille, Remote Video assistance implemented during a moment of distress, might not be welcomed.
    Who would like to be subjected to added experimentation un-qualified solutions. There is a need for specific, assigned qualified and validated hospital to individually patient owned and connectivity trained solutions.

  • Hospitals also do not seem to be aware of hearing problems in their aged patients. My 95 year old mother was an example of this. She was hospitalized after a fall, but was held in the ER for 16 hours due to a bed shortage. She has no hearing in one ear and poor hearing even with a hearing aid in the other. After preparing her for an eventual move to another hospital, I left for my home nearer to that hospital. At midnight I received a call saying they had found her a bed in their hospital. When I arrived at 8am, she was sure that she had been kidnapped(because she had not been moved in an ambulance) and was not cooperating with nursing staff. Her hearing aid was not in her ear. As soon as I put it in and explained that they had found her a bed, she relaxed and said, “I guess I should cooperate now?” She was cooperative and following directions as long as I was in the room to direct staff to speak slowly into her good ear. Despite a sign on the wall, staff repeatedly came in the room and started speaking, ignoring the fact that her good ear did not face the door. On her second night she complained of pain in her broken wrist and was so oversedated that she didn’t fully wake up until 3 pm the next day. Sedation is a good way to deal with a patient if you don’t want to spend the extra time making sure they understand what is going on. As our population ages, hospitals are going to have to find ways to deal with aging patients that can’t hear well but also do not use technologies that could help.

  • This article brought back memories for me from my time as an ER nurse and a triage nurse in the ER. It is so hard to find someone with those skills when there is a need. We never denied anyone an translator, but it sometimes took them a very long time to arrive. Rather than wait, we would use a pen and paper, and write things down There has to be a better way, particularly with all of the technology available now. I can’t imagine that ER staff is still struggling with this when we have Skype, Facetime, etc all available and a list of signers to help with this communication.

    • I understand that many Deaf individuals prefer a face-to-face interpreter but many times, especially in rural areas, it is often impossible to locate someone who is certified and qualified. In that case, remote is really the only option, especially if the Deaf patient is strong in ASL and not English. Notes don’t help if one cannot fully understand them.

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