Nearly half of Americans say they are behind receiving medical attention since the coronavirus pandemic began, according to a recent Kaiser Family Foundation survey. But for the 48 million Americans with hearing lossthe pandemic has its own set of challenges.
As a deaf man who has worn cochlear implants for most of his adult life, Shane Delaney usually goes to his audiologist twice a year. He had just gotten a new processor and was still in the process of scheduling his audition.
“They only had it in some of the basic settings, so I was able to readjust to listening again,” he told CBS News in a Zoom interview. The virus then struck and he lost his job working in a coffee shop near Sarasota, Florida.
It didn’t feel as good as it 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 there is something in the aisle of the supermarket is five minutes, compared to the two seconds of a hearing person,” he said. “For the average person who has difficulty hearing, it’s a minefield that tries to get out and do what it has to do every day.”
This minefield also includes automated phone calls and telehealth appointments that are not easy to navigate with a partially scheduled processor.
“I already hear it electronically, so after I’ve broken it down into a second layer of digital sound, it comes out very robotic,” he explains. “I can hardly distinguish certain words at all.”
A cochlear implant is different from a hearing aid. Instead of 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 several follow-up appointments, only to cancel them in the middle of each new wave of coronavirus. By November, Delaney had not yet seen his audiologist.
“Requires [meeting] in person, being connected to machines, “he said.” And that’s not something he’s able to do right now. “
Dr. Sean McMenomey of NYU Langone tells CBS News that regular scheduling, or “mapping,” is required, as the schedule and needs of patients may change over time. Immediately after the implant is placed, there are four or five visits in the first few months.
“Cartography [implants] it’s changed a bit here at NYU, as we now offer remote programming for those who need it, ”he explained in an email.
A patient-centered approach?
Getting medical attention in the midst of a global pandemic would be stressful for anyone, but for Shane Delaney, he highlights what he says is a common problem for the deaf and hard of hearing: communication.
Delaney is not alone. The need for a patient-centered approach to healthcare existed long before the pandemic, says Corey Axelrod, founder and CEO of 2axend, a consulting and training firm. He and his wife identify themselves as deaf.
“I have a bit of a residual audience,” Axelrod told CBS News through an interpreter on Zoom, adding that he can still speak. “I prefer ASL [American Sign Language] as my way of speaking. It’s my first language, my favorite language. “
To request an interpreter for an appointment with your doctor, you should call the office. Usually, he says, the person answering the phone will not know who to contact. Sometimes it will track by email.
“I have a phone. I can make an appointment using my app or a specific app,” he says. “Why can’t I request an interpreter at the same time? And why can’t this request be sent to the right person?”
What about lip reading? About 40% of sounds in English can be seen on the lips of a speaker, in good condition, according to the CDC. This does not include delayed video channels and blurred screens.
Once you add masks, this 40% threshold is virtually removed. 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. Although fabric masks, surgical and N95 are important to help control the virusthey add another impediment to communications for those with hearing loss.
Remote video playback is an option, but as Axelrod points out, this is not for everyone or everyone. There are other adaptations, such as text-to-speech technology or real-time subtitles.
“The downside is that health care providers make assumptions about what our wants and needs are without even asking my wife and I,” she said. “I’ve seen it happen many times.”
While the recent push for telehealth seems like a “big concept,” Axelrod says there are limits.
“Many platforms don’t have third-party participants,” he says. “For example, we can’t have an interpreter through telehealth, we can’t have subtitles that are provided.”
Some platforms, such as Zoom, allow third-party subtitles, but developers don’t instinctively think of the deaf and hard of hearing experience when creating these apps, says Axelrod.
“And that’s what I often ask is, what is the whole experience of deaf and hard of hearing people?” said Axelrod. “How are we integrated into this telehealth platform? Why don’t they think about such considerations?”
“Health care today is about relationships,” he said. “Effective communication is an amazing way to build relationships and build loyalty. And if we don’t have it, we miss it completely.”
The drive for better communication
All of these issues are not new, says Axelrod. The care of his father, Rick, who was profoundly deaf, consolidated this understanding, and this led him to found 2axend.
Corey Axelrod
Seeing her father’s five-year journey to fight multiple myeloma or bone marrow cancer was difficult. Through stem cell treatments, multiple rounds of chemotherapy, and blood transfusions, Axelrod had to act as his father’s advocate, making sure his words and intent were interpreted correctly.
“He used American Sign Language, that was his main mode of communication. That was his language. He had great literacy skills. [and] He knew how to read and write, “he said.” But in healthcare, you want to make sure communication is as efficient and effective as possible. ”
After repeated denials of in-person interpreter requests, Rick Axelrod filed a lawsuit against one of the largest medical providers in the Chicago area, which resulted in a settlement after his death.
“It was a long and arduous process,” Corey Axelrod told CBS News. “But my father persisted in the lawsuit because he wanted systemic change.”
For Axelrod and his wife, although their own experiences are different from those of their father, it is still not ideal.
A recent experience came to mind. When his wife underwent a procedure a few years ago, he required light sedation. Weeks before the procedure, Axelrod says he had called the clinic to ask for an interpreter in person. Then, the day before the procedure, the clinic contacted him to ask if he wanted a face-to-face interpreter or a remote video interpreter.
“That was the day before. My wife was upset,” he said. “And we didn’t want to, [for] lacks a better term … a less qualified interpreter depending on availability. This was a significant surgery and procedure. ”
Although the clinic was finally able to offer an interpreter, he says the team did not know how to work with his wife as a patient and how to work with an interpreter. He and his wife wanted the performer to be present when he woke up. Apparently, the clinic wanted the interpreter there once she was awake and stable.
“And we responded and said, ‘When my wife wakes up, we need an interpreter to get in right away,'” Axelrod recalls. with hearing problems “.
Shane Delaney notes a similar experience, communicating with doctors after a recent procedure with a mild sedative, comparing 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 in English.
“You get the hang of it, but the whole message is a little lost,” he told CBS News. “You’re exhausted, too. It’s overwhelming, too. Right now, you just want to keep going. And trying to get them to repeat it just makes it more confusing.”
Poor communication not only hurts patients, but also doctors, if they do not have all the information of patients.
“Are they making an informed decision? Probably not,” Axelrod said. “If the deaf patient does not receive complete information about their treatment plan or medication, we may see an increased risk of readmission.”
That’s why an open conversation is needed between health care providers and patients in the deaf and hard of hearing community, Axelrod says. As a member of the newly founded Northwest Community Hospital, the Patient and Family Advisory Council hopes to offer it.
“What I think is so important is that every hospital and health care system incorporates the sheer number of prospects from marginalized communities,” he said. “I see with 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 compromised. And it all starts with communication.
ASL Interpreter: Brice Christianson
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