Do you dread going to the doctor? Do you worry that the office won’t be able to accommodate your communication needs, that staff may be impatient, that you may get sub-standard service, or that you may leave with no idea what was said and what you’re supposed to do next?
It turns out you may have good reason to be worried. A study published in October in the journal Health Affairs, based on interviews with doctors from a variety of medical situations (primary care doctors, specialists, doctors from cities and from rural areas) found some pretty shocking attitudes about patients with disabilities. As an article in The New York Times reported, sometimes they really wish you weren’t there.
People with mobility issues faced the biggest obstacles. Sometimes their motorized wheelchairs wouldn’t fit in the office; examining tables were too high for them to get up on. People who were obese provoked the harshest comments, with doctors saying their office scales couldn’t accommodate them. Some doctors said they’d suggested that patients go “to a supermarket, a grain elevator, a cattle processing plant or a zoo to be weighed.” These patients do pose a challenge if a medical office and staff have not been trained – and equipped – to deal with them. They also pose even more of a problem in a medical system set up to get a patient in and out in 15 minutes. But the need for accommodations is a fact of life. More than 61 million Americans had a disability as of 2016, according to the Health Affairs article.
Hearing loss can also be a challenge for the medical staff, and it’s good to remember that it is invisible. Nowhere is it more important to speak up for yourself.
HLAA’s Communication Access in Health Care program (CAHC) works with patients, providers, researchers, and policymakers to ensure that patients can communicate effectively in medical encounters. The program’s webpages include a comprehensive Guide for Effective Communication in Health Care with information for both patients and providers. The Guide includes a Communication Access Plan, a form patients can fill out in advance of an appointment with a new practitioner spelling out what devices you use and what accommodations you need. It’s clear and simple and should be sent in advance of the first appointment. It should then be entered into your electronic health record.
There’s a lot of information on the HLAA site, so if you don’t have time to delve in there, here are some simple measures you can take to help yourself.
In the reception area. Make sure the staff knows you will not hear when they call your name. Point to where you will be sitting. Remind them again after 20 minutes or so that someone needs to come right up to you and say they are ready for you. It would be great if more doctors’ offices had the kind of devices used in big restaurants, which light up when your order is ready. A very simple and inexpensive fix to an everyday problem. It would also be great if medical reception areas had hearing loops, but most don’t.
Clear masks. Most medical facilities will not have these. If you feel it’s essential that you read lips, bring along some FDA-approved clear medical masks. Remember that masks can’t be shared, and that they are expensive. This is probably not your best bet. Once you know the office staff, you can ask if the medical person in the room with you might take off their mask while you keep your own on. This is not something to count on, especially in areas where flu or Covid are rampant.
Captions. Bring your own. I have an iPhone and I use the Otter app. This takes some preparation in advance, as Otter works best using WIFi. You’ll need the name of the hospital’s patient WiFi and the password, which is usually posted. If you’re not familiar with Otter, practice before you try it at the doctor’s office. Here’s a link to some useful instructions. Don’t forget that you’ll need to allow microphone access. For those with Android phones, Google Live Transcribe provides the same service, with the same limitations (for best simultaneous transcription you need WiFi). Both apps provide a transcript that you can download later, which is helpful if you’re not sure you got all the information during the visit. There are other captioning apps, but these are two of the most popular.
Telehealth. Obviously there are times when a physical exam is essential, but for follow-up visits telehealth is increasingly an option. You and the doctor or other medical professional communicate by a secure service that ensures that HIPAA regulations for patient privacy are observed. A larger screen is good because you will want to get captions if they are offered. My small iPhone is not big enough but a tablet or computer would be. If the system doesn’t provide captions, and if the ability to read lips on the screen isn’t completely helpful, you can set up your phone next to your computer or tablet and follow along with Otter or Live Transcribe. Again, this has the added advantage of providing a transcript. The organizer of a Zoom meeting can activate Otter captions.
Never underestimate the usefulness of old-fashioned pad and paper. It is also helpful to write out your questions in advance.
At times in the past when my hearing was really bad, my ENT would type his questions to me on his laptop and then show them to me. This was a godsend. Luckily I’m not often in such a desperate hearing situation.
Bring a partner to the appointment. But make sure the doctor is talking to you, not your companion. This may take some nudging and reminding.
Finally, after you get home, figure out how to use the Patient Portal. This is a fairly new element in health care and I find it invaluable. The doctor posts notes taken during the appointment, as well as more formal observations later on. All test results are posted on the Patient Portal. (Be aware that you may see the test results before the doctor has had a chance to talk to you about them, and if they include bad news, this can be upsetting.) You can also make appointments on the portal, email your doctors with questions about simple things like prescription refills and more complicated things like requests for interpretation of test results. Your other doctors in the same health system may also be able to see the information, which can help with diagnosis and treatment of conditions that may be related. It also helps prevent prescription overlaps or dangerous combinations of prescription and non prescription drugs.
Let’s hope that HLAA’s guide will become standard reading for medical professionals, and that medical offices will institute some much needed accessible features for those who are deaf and hard of hearing (as well as for those with other disabilities). But in the meantime, there is probably no place where good communication is more important, so be prepared to provide your own accommodations.
For more about living with hearing loss, read my books: “Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss.” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook or paperback, on Amazon.com.