Coronavirus pandemic highlights challenges facing deaf and hard of hearing patients in health care system
Nearly half of all Americans say they have delayed receiving medical care since the coronavirus pandemic began, according to a recent survey from the Kaiser Family Foundation. But for the 48 million Americans with hearing loss, the pandemic has its own set of challenges.
As a deaf man who has worn cochlear implants for most of his adult life, Shane Delaney typically goes to his audiologist twice a year. He had just gotten a new processor, and was still in the process of programming his hearing.
“They only had it on some of the basic settings, so I could readjust to hearing again,” he told CBS News in a Zoom interview. Then the virus hit and he lost his job working at a cafe near Sarasota, Florida.
He wasn’t hearing as well as he was used to. Once masks became the norm, he felt even more lost.
“Even if I have a piece of paper and a pen, to ask where something is in the grocery aisle, it’s five minutes — compared to the two seconds for a hearing person,” he said. “For the average person that has difficulty hearing, it’s a minefield trying to get out there and do what they need to do every day.”
That minefield also includes automated phone calls and telehealth appointments that are not easy to navigate with a partially-programmed processor.
“I already hear electronically, so having that broken down into a second layer of digital sound, it comes out very robotic,” he explains. “I almost can’t distinguish certain words at all.”
A cochlear implant is different from a hearing aid. Rather than amplifying sounds, electrodes are used to directly stimulate the auditory nerves. A sound processor that fits behind the ear sends signals to a receiver implanted under the skin behind the ear.
Delaney says he has rescheduled multiple follow-up appointments — only to have them canceled amid each new wave of coronavirus. By November, Delaney still hadn’t seen his audiologist.
“It requires [meeting] in-person, being hooked up to machines,” he said. “And that’s not something I’m able to do right now.”
Dr. Sean McMenomey of NYU Langone tells CBS News that regular programming — or “mapping” — is required as the program and patients’ needs can change with time. Immediately after the implant is placed, there are four or five visits in the first few months.
“Mapping [implants] has changed somewhat here at NYU in that we do now offer remote programming for those that need it,” he explained in an email.
A patient-centered approach?
Getting medical care in the middle of a global pandemic would be stressful for anyone, but for Shane Delaney, it highlights what he says is a common problem for the deaf and hard of hearing: communication.
Delaney isn’t alone. The need for a patient-centered approach to health care existed long before the pandemic, notes Corey Axelrod, the founder and CEO of 2axend, a consulting and training firm. He and his wife both identify as Deaf.
“I have some residual hearing,” Axelrod told CBS News through an interpreter on Zoom, adding that he can still speak. “I prefer ASL [American Sign Language] as my mode of language. It’s my first language, my preferred language.”
To request an interpreter at a doctor’s appointment, he would need to call the office. Typically, he says, the person who answers the phone will not know who to contact. Sometimes he will follow up via email.
“I have a phone. I can make an appointment through my app or a specific app,” he notes. “Why can’t I request an interpreter at the same time? And why can’t that request get routed to the right person?”
What about reading lips? About 40% of the sounds in the English language can be seen on the lips of a speaker — in good conditions, according to the CDC. That doesn’t include lagging video feeds and blurry screens.
Once you add masks, that 40% threshold is virtually eliminated. Thirty-seven states require people to wear masks while in public, according to the AARP — and President Biden has signed executive orders requiring masks on federal property, airplanes and public transportation. Though cloth, surgical and N95 masks are important to help control the virus, they add another impediment to communications for those with hearing loss.
Video remote interpretation is an option, but as Axelrod points out, that isn’t for every situation or everyone. Other accommodations exist, such as speech-to-text technology or real-time captioning.
“What it boils down to is the health care providers make assumptions about what our wants and needs are without even asking my wife and I,” he said. “I’ve seen it happen numerous times.”
Although the recent push to telehealth seems “great in concept,” Axelrod says there are limits.
“Many platforms do not have third-party participants,” he says. “For example, we cannot have an interpreter provided through telehealth, cannot have captioning that’s provided.”
Some platforms, such as Zoom, allow for third-party captioning, but developers do not instinctively think about deaf and hard of hearing experience when creating these apps, Axelrod says.
“And that is what I often ask is, What’s the entire experience of deaf and hard of hearing individuals?” Axelrod said. “How are we integrated into that telehealth platform? Why aren’t those sorts of considerations thought of?”
“Health care today is focusing on relationships,” he adds. “Effective communication is an incredible aspect for building relationships, and building loyalty. And if we don’t have that, we miss it completely.”
The push for better communication
All of these issues aren’t new, says Axelrod. Caring for his father, Rick, who was profoundly Deaf, cemented that understanding — and that ultimately pushed him to found 2axend.
Watching his father’s five-year journey battling multiple myeloma, or bone marrow cancer, was a difficult one. Through stem cell treatments, multiple rounds of chemotherapy, and blood transfusions, Axelrod had to act as an advocate for his father, making sure his words — and intent — were being interpreted correctly.
“He used American Sign Language — that was his primary mode of communication. That was his language. He had great literacy skills [and] could read and write,” he said. “But in health care settings, you want to make sure communication is as efficient and effective as possible.”
Following repeated denials of requests for in-person interpreters, Rick Axelrod filed a lawsuit against one of the largest medical providers in the Chicago area, resulting in a settlement after he passed away.
“This was a long, arduous process,” Corey Axelrod told CBS News. “But my father persisted with the lawsuit because he wanted to see systemic change take place.”
For Axelrod and his wife, though their own experiences are different from his father’s, it still isn’t ideal.
One recent experience came to mind. When his wife had a procedure a few years ago, it required her to be put under light sedation. Weeks before the procedure, Axelrod says she had called the clinic to request an in-person interpreter. Then, the day before the procedure, the clinic reached out to ask if she wanted an in-person interpreter or a video remote interpreter.
“This was the day before. My wife was upset,” he said. “And we didn’t want, [for] lack of a better term … a less qualified interpreter based on availability. This was a significant surgery and procedure.”
Although the clinic was ultimately able to provide an interpreter, he says the team didn’t know how to work with his wife as a patient and how to work with an interpreter. He and his wife wanted the interpreter to be present when she woke up. The clinic apparently wanted the interpreter there once she was awake and stable.
“And we responded and said, ‘The minute that my wife wakes up, we need an interpreter there for immediate access,'” Axelrod recalls. “They were a little bit flummoxed as to how to provide an interpreter or how to work with a Deaf or hard of hearing patient.”
Shane Delaney points to a similar experience, communicating with doctors after a recent procedure on a mild sedative — likening it to trying to have a conversation with someone in another language, understanding only a few words in that language. For Delaney, that language was spoken English.
“You grab bits and pieces of it, but the whole message is a bit lost,” he told CBS News. “You’re also exhausted. It’s also overwhelming. At that point, you just want to get on. And to try and have them repeat it just makes it more confusing.”
Unclear communication not only hurts the patients, but the doctors as well, if they do not have all the information from the patients.
“Are they making a well-informed decision? Probably not,” Axelrod notes. “If the deaf patient is not getting the full information in regards to their treatment plan or their medications, maybe we’ll see an increased risk of readmission.”
That’s why an open conversation is needed between health care providers and the patients within the deaf and hard of hearing community, says Axelrod. As a member of the newly-founded Northwest Community Hospital, Patient and Family Advisory Council, he hopes to provide that.
“What I think is so important is each hospital and health care system incorporates the plethora of perspectives of marginalized communities,” he said. “I see through a different lens as a Deaf individual.”
For health care providers thinking about 2021 and beyond, the lessons learned from this pandemic could be an opportunity to make sure that the deaf and hard of hearing are engaged. And it all starts with communication.
ASL interpreter: Brice Christianson
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