“My son is not reacting well to the pain medication. What are some other options?” I asked the pain team doctors on their daily visit to my son’s hospital room during his recent stay.
“Mumble, mumble, switch to mumble mumble.”
“Can you please speak louder and slower? Remember, it is hard for me to hear you.” I had mentioned my hearing loss the prior day as well.
“It’s the masks.”
“Yes, but it’s also because I am a little bit deaf.” That is the phrasing I use when I really want to get someone’s attention about my hearing loss.
“But my throat is sore,” the doctor complained. And then, “I will try.” Seriously?
With no help in sight, I whipped out my phone and turned on Otter, the speech-to-text app I use in these types of situations. It was a huge help, but still missed some of the jargon and drug names. Thank goodness my husband was there with his set of typical hearing ears to fill in the blanks. But the situation highlights how challenging it can be for people with hearing loss to communicate effectively in a hospital setting.
Communication Access in Hospitals is Lacking
In We Hear You, our award-winning documentary about the hearing loss experience, we address this issue head-on. In the captioned clip from the film below, Toni Iacolucci shares the heart wrenching experiences she faced when helping to coordinate her brother’s cancer treatment many years ago. Without appropriate communication access, she struggled to understand the doctor’s updates and suggestions.
Better communication access for people with hearing loss in a hospital setting would have eased the journey for both of them. So why isn’t it readily available, even today?
To watch the full documentary, visit Vimeo On Demand. Ten percent of proceeds will be donated to hearing loss charities.
Preparing for a Hospital Stay When You Have Hearing Loss
In my post How to Create a Hearing Loss Hospital Kit, I share the outstanding hospital kit created by the Canadian Hard of Hearing Association (CHHA)’s Edmonton Branch. It is a great model for creating your own. The kit was constructed for when a person with hearing loss is the patient, but many of the tips and suggestions also apply when you are a caregiver.
Key elements include:
- Hearing loss identification cards, stickers & buttons: These will make it easier for doctors and other medical professionals to remain aware of your hearing loss. Visual reminders help keep communication lines open and effective.
- Communication tip sheets: While we might expect medical personnel to be trained in communicating with people with hearing loss, it isn’t always the case. Written best practice communication tips will help them understand how to make communication easier.
- Tech tools of various types: My speech-to-text-app was a life saver. Bring your apps and the other hearing assistive technologies that work for you. Since most require battery power to operate, pack extra batteries, plugs, and a long extension cord since power outlets may be few and far between.
Self-Advocacy Skills Are Key to Hospital Success
Hospital stays are stressful, involving numerous doctors with a variety of specialities and a confusing array of jargon and terminology. Decisions may need to be made rapidly, with doctors in and out of your room only at scheduled times. We must be prepared with our questions and speak up when we don’t understand, especially as a caregiver. Not only are we advocating for our communication needs, but for the proper and compassionate care for the people we love.
I am happy to report my son is home and recovering well. A big thank you to his medical team and to my hearing loss friends who have trained me well to advocate for my communication needs in every setting.
Readers, how do you manage your hearing loss in a hospital setting?
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Anytime I have had a hospital stay it has been clearly noted on the wall, door, etc, Hard of Hearing.When my mother was in the hospital recently I made it clear that I was HOH and the masks made it difficult for me to hear and understand. Most were very accommodating to my needs.
That is wonderful! Thank you for sharing your experiences.
I had a doctor when I asked him to repeat some stuff ,because I missed it. He told me I needed new hearing aids.. The sad thing was they were only three months old. It was the last time I saw him.
That sounds awful. It is disappointing how little the medical profession seems to know about hearing loss. Thank you for your comment.
could you post more about the Otter app?
Thank you
Otter is an app for your smartphone that turns the spoken word into text. It was originally created for business meetings, but it works well for any conversation. Last time I checked, you could get 600 minutes of transcription free each month. Thanks for your question. You can also learn more at http://www.Otter.ai.
I can relate to the stress of hearing loss in a medical setting. Most health care providers dont understand our needs…..they think pulling away mask from face , but not pulling it down, or speaking louder, is what we need. All wrong! I leave these medical conferences not knowing half of what was said, and mentally drained . My husband is there to help me. I actually worry what would happen if my husband wasnt there, putting more stress on me. When I leave a medical setting, I end up crying because of this unnecessary stress. I do have the captioning app, but I still miss a lot. Thank you for everything you do!
It is stressful! And unnecessarily so. More advocacy is needed. Thank you for sharing your experiences.
I find medical situations in general–not just hospitals–are the most frustrating places for me. (I’m deaf with bilateral cochlear implants, but my hearing is failing again, yes, even with the CIs.) I had one doctor ask me to remove my bluetooth devices because he thought I was rude for wearing them at the appointment. They were my CIs. I’ve had several refuse to take off their masks, and provide no other forms of accommodation so I can access their words. I requested an interpreter and was denied because I could “kind of hear” and I obviously spoke well enough to communicate. It is ALWAYS baffling to me that doctors’ offices are often the least accessible places.
It is baffling! Thank you for sharing your experiences. More advocacy is clearly needed!
Shari, you and I need to meet or have a Zoom meeting. There are more things you need to know. I have had a lifetime of experiences in different hospitals in different states. The differences of accommodations has been enormous during hospital stays. There have been good experiences and bad experiences, but advocating is greatly needed. People with disabilities going to the hospital is sometimes like a war zone and going through medical issues on top of access to accommodations is a nightmare. I have learned so many positive ways to be productive.
Excellent! Toni Iacolucci and others are also creating a best practice guide along with HLAA National. I am eager to learn more and can share further updates on the blog. Thank you for your comment.
Health care providers are required under Title III of the Americans with Disabilities Act to provide effective communication to and from their patients (and they should do this anyway). We are thus entitled to ask them to make modifications or to provide auxiliary aids or services to help us understand them better, but we will usually need to ask them to do this in advance since it will take time for them to arrange what we need.
I’ve asked multiple health care providers to obtain masks with plastic “windows” in them so that I can lipread them, and it was very helpful when people still spoke clearly and without hurry. There’s at least one that is FDA-approved but make sure that’s what you get (the company provides others that are not). I’ve also been able to obtain realtime captioning for certain situations like a hospital setting or complex consultations. I’ve also been able to use InnoCaption with Zoom video calls where it wasn’t necessary for me to be there in person.
I also use Live Transcribe on my Android phone.
It is true that we are entitled, but unfortunately it doesn’t always work that way. Still, we must continue to advocate for change. Thank you for sharing what works for you.
I’m so sorry you had to go through this. I was recently at the hospital with my 95-year-old mother who is very hard of hearing. My hearing is bad but better than hers. After she was admitted, the ER nurse let the nurse on her floor know that my mother was hard of hearing. Both nurses spoke loud and clear. I made sure to thank them for that. Their thoughtfulness and respect for their patient made a stressful situation considerably more manageable.
That is terrific. Behavior varies widely from person to person. I am glad your experience was good. Thank you for sharing your thoughts.
Our HLAA Indianapolis chapter assembles hospital kits, distributes small quantities and they may also be ordered from our website https://www.hlaa-indianapolis.org/resources/hospital-kits. Free downloads for many of the items are also on that website. We are finding ways to improve the kit contents all the time. Thank you for your article bringing this helpful hospital prepardness tool to light..
Indianapolis HLAA chapter
Thank you for sharing this resource.
It’s important to know that in the USA, we are *legally* entitled to request that a health care provider provide effective communication to us. While the provider may not be aware of their responsibilities under the ADA, we still need to be able to understand what they are saying and we owe it to ourselves (and perhaps others we are assisting) to try to do what we can to obtain effective communication from the provider. This may involve informing them in advance that we will need arrangements to be made for effective communication (which might mean using a Communicator mask or realtime captioning), and that we’re asking them to do this in part because it is the right of patients with hearing loss to receive effective communication under the ADA.
I do know that many health care providers and their assistants can be unaware about their legal obligation to address disability-related access needs, but we still need to advocate for our needs anyway. Part of that can involved explaining to them that they are covered by Title III of the Americans with Disabilities Act, and they they’re required to provide effective communication to and from patients with disabilities. That can occur through the provision of the auxiliary aid or service, or a modification of policy, that would work to provide effective communication for the specific individual.
The standard for effective communication is higher than the requirement to provide a reasonable accommodation to people with disabilities. It’s not “a quick and easy” accommodation. The defense for a business against providing the requested assistance to receive effective communication is if it’s an undue hardship or burden for the business to provide, and the entire financial budget is supposed to be considered. It’s a very serious obligation, and of course, that’s especially necessary for a patient or assistant to receive from a health care provider. So it’s important to know and to convey that we *are* legally entitled to request what we need, whether or not some providers don’t respond well.
Absolutely. Thanks for sharing this information.
Not only is communicating with the medical staff an issue but getting the medical staff to call me in the waiting room. I tell the receptionist at check-in that I am hearing-impaired. Then the nurse comes out and whispers my name when I am sitting 40 feet away (usually the close-in sets are already taken). As a result, I usually need to add 30 minutes to an hour to my appointment time. My hospital uses Epic (as do most hospitals in the area) which apparently has no provision to add this information along with the request to not be given ototoxic drugs unless my condition is life threatening.
It is very frustrating. Advocacy is needed. Thank you for sharing your thoughts.
I am looking for a resource for having a Hospital Stay Kit. Also I’d like to rejoin the HLLA magazine. Please advize
Here is a post (https://livingwithhearingloss.com/2020/08/18/how-to-create-a-hearing-loss-hospital-kit/) that talks more about the hospital kit and how to reach out CHHA’s Edmonton branch. You can find the HLAA magazine issues here: https://www.hearingloss.org/news-media/hearing-life/issues/
Thank you for your questions.
I’m a medical mystery so I’m in hospitals often. Unfortunately I am mute and physically handicapped, so everyone just assumes I am mentally disabled and talks to my mother as if I am not there, and she often ignores my attempts to ask for clarification. Being able to hear better would make things suck less, but *shrug*
also Otter is a miracle. We also sometimes use MyEar when it is just my mother speaking. It definitely has its drawbacks, Otter is much better, but sometimes we have to switch between the two.
Thank you for sharing what works for you.
Our HLAA Indianapolis chapter provides kits and also much useful downloadable material from our webpage https://www.hlaa-indianapolis.org/resources/hospital-kits
Ella Hurrell Secretary HLAA Indianapolis
Thank you for sharing this information.