Going to the doctor can be stressful under any circumstances, but add a hearing loss to the mix, and it can be downright scary. Doctors are notorious for their poor handwriting, but their oral communication skills can sometimes leave something to be desired as well. This may not be entirely fair, as doctors face increasing pressure to see more patients and perform more procedures each day simply to make ends meet.
Whatever the reason, many do not take the time needed to speak clearly and face the patient when providing important medical information or treatment instructions. Given these challenges, people with hearing loss must actively self-advocate in all health care situations.
I recently attended an informative session at the Hearing Loss Association of America (HLAA) 2017 Convention that discussed this very topic. Led by Toni Iacolucci (a hearing loss advocate and HLAA board member) and Jody Prysock (a certified sign language interpreter and patient advocate), the session provided useful tips for creating safer and more effective interactions with your doctors, in a variety of medical settings.
Sometimes making the doctor appointment itself is half the battle. Fast talking receptionists who answer the phone at doctor’s offices are often difficult to understand. Be sure to ask whoever answers to speak slowly and clearly if you have trouble hearing on the phone. Repeat all important information to make sure you got it right. If possible, ask for an email confirmation of your appointment time and what you need to bring with you.
Once you arrive, it is important to make the appointment as productive as possible. Toni and Jody suggested using a Communication Action Plan or CAP.
What is A Communication Action Plan (CAP)?
A CAP contains important information for your doctors and their staff telling them how to best communicate with you. It details the types of devices you use to hear and what services you need from them for better communication. It describes how you would like to be called in a waiting room (we all know how easy it is to miss your name being called) and how to best schedule appointments (call/email/etc).
One item I would like to see added to it is instructions to speak clearly and always face the patient when talking to him or her. Perhaps that could be added in the notes area.
For additional information see Guide For Effective Communication in Healthcare, a detailed manual that includes instructions for using the CAP. It also includes tips for better communication in a variety of medical settings for both patients and providers.
Thank you to Toni Iacolucci, Jody Prysock and (HLAA) for compiling this terrific guide for people with hearing loss.
Readers, how do you self-advocate in a medical setting?
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Love this form. I am going to fill this out and make copies to take to my doctor’s. I usually inform the intake desk/receptionist of my heating loss and ask them to inform the staff when announcing my name. Many tines there isn’t anything on the form or even if there is, it is not read. I try to position myself in a seat that faces where the nurse or medical assistant will announce your name. I do not know of many doctors that use text or other technology to let you know you are next to be seen. I also make this person repeat my FULL name. Once at the dentist office they announced “Susan “ but there was another Susan there as well and it wasn’t me. It was only for a cleaning but it could have been a bigger issue.
Glad you like it! I hope it works well for you. Thanks for sharing your thoughts.
What a great document! I’m an outspoken advocate for myself (as well as others), but others are not so forward and this will be a valuable document. It’s especially true these days when a doctor types into his/her computer while talking to you – a real no-no. My doctors all give me a print out of instructions following the visit, often three or four pages of my records, reason for my visit, and details I need to remember. These days, it’s a double whammy because, not only do I have a hearing loss, but I’m getting older! Having everything in writing is so helpful. Kudos to the folks who prepared the CAP form above, and to HLAA for passing it on.
Thanks for sharing your thoughts!
I just do not go to doctors
2 issues going on and I am sick and tired of the diffuculities I have in commutation
My dentist lets me commuciacate by text- no one else does
Please try this. Maybe it will help. It can be dangerous to avoid doctors if you are not feeling well. All best to you.
A link for the cap form?
http://www.hearingloss.org/sites/default/files/docs/CAP_form.pdf
I find it amazing that the ENT doctors that I visit don’t have looped offices. I’ve got to assume that a large portion of their clients have issues with hearing. If anyone should be sensitive to the issues we have communicating, they should.
I agree. Hopefully they will be more attuned to this over time. Thanks for sharing your thoughts.
The CAP form is a great invention . I’m curious to know who will fit the bill for CART or interpreting services because I know most doctors don’t even offer it as these services are very expensive and mostly just large hospitals will provide it. I find most doctors are accommodating to a point when you tell them you are hearing impaired. But they still don’t fully get it and tend to speak into their laptops and tablets . A few times ,when setting up appt with new doctor , they tell me they don’t accommodate deaf patients! Nice, you just lost a new patient, doctor ! I’m sure they could care less since as they are booked up solid due to doctor shortages in this country . While foreign doctors are very professional and extremely knowledgeable, they usually speak with a very heavy accent which is nearly impossible to lip read and then they get very frustrated with you when you can’t hear them . Makes for a horrible appointment! Another very annoying problem when you’re hearing impaired is when you ask them to send you either email or text appointment reminders and they tell you , sorry, we only use phone calls! But the portal services they mostly all have are great , so you can go online and get your test results without having to call to request them by mail or speak to your doctor. But pretty much going to the doctors is a very stressful event when you are hearing impaired!
It certainly can be frustrating. All we can do is keep advocating for ourselves, which it sounds like you are doing. Thanks for sharing your perspective.
Love the form. And the article. Good work! Thanks.
Thanks for the comment.
You’ve posted a very cool, brilliant & informative article, which I enjoyed reading. thanks for sharing keep updating.
I am glad you find it helpful. Thanks for reading.
Thank you, Shari, for starting the conversation on this important topic!
It is indeed frustrating to try and get accommodations in medical settings. We all have our own comfort level in advocating for what we need, however, by simply presenting our CAP at a doctor’s office or hospital, we are alerting staff to the fact that they have a patient who is hard of hearing or deaf. Creating awareness about the numbers of patients who have hearing loss or are deaf and their communication needs is a critical first step. If you can follow through to receive the aids and services you need, even better. There are instructions in the Guide.
Another suggestion, as Shari pointed out the importance of communication strategies, is to print “Communicating with Hard-of-Hearing and Deaf Patients” from the Provider section of the Guide to share with your doctors during appointments.
Most of all, be willing to work with and educate your healthcare providers. The more you can work together as a team, the better chance you’ll have to get what you need to communicate effectively.
Thank you for your work on these important tools!
I work at a hospital and we have to provide interpreters but do you know where CART would fall under that? For example my husband is extremely hard of hearing but we don’t know ASL and if I can’t go to his appointments with him and he’s having a bad ear day and his hearing aids just aren’t helping because of the tinnitus then CART would help A LOT! Especially when they wear a mask! How do we find out what the protocol is on that in California?
This is a great question. I checked in with Toni & Jody and they said if CART is the only aid/service that will enable someone to communicate effectively, then they are entitled to it under the ADA. Chances are that the doctor/hospital might not know what CART is so you will have to explain. You may want to contact your local HLAA chapter who may have more local information and suggestions for people who can provide CART locally. Here is a link to ADA rules if you are interested in reading the details. I hope this is helpful. https://www.ada.gov/effective-comm.htm
CART is a wonderful service , however it needs to be prearranged far enough in advance , if you can even find someone who does it and to be honest, it’s a very inconvenient service mainly because it’s very very expensive as the CART operators can easily make up to $75 an hour plus travel expenses. My employer hired a CART reporter for me for a work seminar for @ 6 hours and it ran over a $1000! I’m mean who alone can afford that for a doctor or hospital visit and not too many doctors even want to foot the bill for that. It also involves setting up with a court reporting type machine and a laptop or large screen , along with plugs and adapters. Hospitals will definitely provide interpreters , but what good is that if you don’t know sign language . This is an area that definitely needs improvement, finding affordable CART operators that are readily available and improving technology so that’s its easier to use.
Thank you for providing this perspective. Some apps do a moderate job at providing a cart like service. One example is I-Hear. It’s not perfect but better than nothing in a pinch.
This is an excellent article which I hope gets wide attention. Thank you for posting it.
Feel free to share the link with your local chapter. Thanks for reading.
I avoid the GPs who find it almost impossible to look prise their eyes from the computer screen and address me during a consultation even after I have asked them to do so and explained why!
I have expressed my dismay at the reception in the hope it will filter back …..
So important to repeat what the receptionist has said to you when making an appointment by ‘phone BUT be sure they know the reason or they may not listen attentively.
Stay well!
Thanks for sharing your thoughts. Might be time for a different doctor…
My new issue is that the nurse practitioner wants to call and discuss recent tests. It is difficult enough in the office. She is very diligent about following up after tests. I have an appointment tomorrow because she kept calling and I will not discuss medical issues on the phone with my limited hearing. This doctor’s office doesn’t have fax or texts or email so the phone or a visit is my only option. She will be more aware tomorrow of my issues. It often comes down to a quick smile when you tell someone you can’t hear – they don’t really get what that means in terms of their communications with me. Even medical professionals don’t always get it.
Good luck with your appointment. Have you considered a captioned phone? That might help with phone calls.
I do have a captioned phone. But I got a CI last year and that works with my iphone to stream the call directly into the CI. It’s much better than a captioned phone right now. My next step is to get a HA in the other ear that works with the CI to give stereo sound on the phone and streaming TV – I just haven’t gotten to that next step yet.
Sounds like a good plan. Thanks!
Good luck with your appointment. Have you considered a captioned phone? That might help for important phone calls. Thanks for your comment.