I recently spoke at Beyond Hearing Aids, a symposium sponsored by HLAA-NYC, the NYC Walk4Hearing, and NYU/Wagner. In the audience were audiologist and speech language pathologist students from several local universities. It was a wonderful session full of informative talks on OTC devices, hearing loops, cochlear implants and advocacy. I was pleased to share the patient’s perspective.
I share an excerpt of my remarks below.
Thank you for inviting me to talk to you from the patient’s perspective. I want to tell you a little bit about my hearing loss journey, some of my experiences with audiologists over the years, and then I will share my audiologist visit wish list – a list of ten things that patients want from their audiologists. I hope that it will help inform the decisions you make as you develop your own practice over time.
My Hearing Loss Story
My hearing loss story began in my mid-20s when I was a graduate student. Fairly quickly into the first semester, I began to miss things in class — a comment that was made under one’s breath or as an aside. Sometimes the class would erupt in laughter and I would be left looking around the room trying to figure out what had been said. My seatmate was growing weary of my repeated, “What did she say?”
I knew what the problem was. I was losing my hearing. My father developed hearing loss as a young adult, as did his mother. I was hoping it would skip my generation, but no such luck. I was entering a path from which there is no escape — and one that had destroyed my father’s happiness. I was scared.
I went to get my hearing tested. I don’t remember much about that first audiology appointment, other than the result — mild hearing loss. I was told it was too slight of a loss to do anything about, but that I should monitor it. I was relieved, and because it wasn’t too bad, I ignored it, preferring denial to action.
But as the years passed, I noticed that I was having trouble hearing in meetings and that there were certain clients at work and friends socially that I was starting to avoid — the ones I couldn’t hear well. It was time for another hearing test.
As I suspected, things had gotten worse and this time it was recommended that I try hearing aids. I was devastated. The stigma surrounding hearing loss had been very strong in my home growing up, such that my father eventually became isolated and withdrawn as he tried to hide it from everyone. This experience was impacting how I felt about getting hearing aids. I knew that I needed them, but wanted them to be as small as possible so that nobody would know.
I purchased hearing aids, but I hated them and avoided using them as much as possible. At work, I would sneak them in before an important meeting and rip them out as soon as possible thereafter. I always hoped the telltale squeal would not give me away. I was following in my father’s footsteps of shame and isolation.
But then I had children of my own and everything changed. Since my hearing loss is genetic I worried that I might have passed it onto them. I didn’t want them to see me hiding my hearing loss and being embarrassed by it. I needed to teach them how to survive and thrive with a hearing loss, in case one or both of them developed the condition. I had to accept my hearing loss. So I did.
I started wearing my hearing aids all the time and working to educate my family and friends about how they could help me hear them better. I began to request quieter tables at restaurants and to use captioning devices at the movies. I refuse to let my hearing loss isolate me. It is hard work, but it is worth it.
Recently, I have turned to advocacy serving on the board of Hearing Loss Association of America and writing a blog called LivingWithHearingLoss.com. I hope that by sharing my story, I can help others to live more comfortably with their own hearing issues.
My Audiologist Visit Wish List
What is it that hearing loss patients want from their audiologists? Each person may have a slightly different list, but here is mine. I hope you will consider incorporating these suggestions into your patient care routines as you develop your own practice.
1. Acknowledge the patient’s hearing loss story. Some stories are traumatic—others less so—but every patient has one. Ask us why we are there and listen to the answer. Your attitude and response has a big impact on the likelihood we’ll continue treatment.
2. Provide hearing accommodations at your office. Remember your patients are there because they are having trouble hearing! Your receptionist should be welcoming and easy to understand, even over the phone. Speaking clearly and while facing the patient is critical. Consider investing in a hearing loop system, a simple pock talker-like device or other assistive listening technologies for your office.
3. Focus on hearing solutions specific to the patient. Be sure to ask about your patient’s priorities for hearing better. Do they work and need a captioned phone? Do they have trouble hearing in meetings or one on one at home? Attend the theater often? Dine out frequently? The more you know, the more appropriate solutions you can offer. Most often the best solution will be a combination of hearing aids and other things.
4. Incorporate hearing assistive technology or HAT. New devices are constantly being introduced to help people with hearing loss watch TV, enjoy dining out or attend a lecture or live performance. Stay current on innovations to better integrate these items into your patient’s hearing loss tool kit. HAT can be confusing. Train your receptionist and others in your office on how to work these devices so they can help train your patients. Pre-printed sheets for common devices with images and step-by-step instructions would be very helpful for your patients.
5. Supply a written summary. Your patient may be missing important details about her care but is embarrassed to ask you to repeat them. Include test results, what they mean, and a list of recommended action items for care. A simple checklist format will save time and reduce patient follow-up calls for clarification.
6. Set realistic expectations. Everyone wants hearing aids to work like glasses – you put them on and suddenly your hearing is back to normal. But we all know it doesn’t work that way. Be sure to explain to your patients that it will take persistence and patience to fine-tune the settings and to retrain the brain to hear in this new way. Set realistic expectations and explain the work and time that will be required by both the audiologist and by the hearing aid wearer to get things working smoothly.
7. Share tips and tricks of the trade. Those new to hearing loss may not understand how to ask others to help them hear better. While tips like getting the attention of the person first, and keeping the mouth visible are obvious to you, they may not be to someone new to hearing loss or to his family and friends. You could print your favorite tips on the back of the written appointment summary.
8. Include the family. This is probably most important at the first appointment. I remember bringing my then boyfriend (now husband) to my first appointment. It helped me feel like he was in the battle with me and helped him to understand what we would both be dealing with. Hearing loss impacts the entire family so be sure to include them in the solutions. Everyone will need to make adjustments. Involving the family in care brings a higher likelihood of compliance and success
9. Embrace the hearing loss community. Unless you have hearing loss, it is really hard to understand what it is like. Suggest the patient meet other people with hearing loss through a local HLAA chapter or similar group. It made a huge difference for me. There was now a group where I could commiserate about my frustrations and learn useful tips to help me hear my best. And make friends. A strong community for your patient supports better hearing and increases the likelihood they continue with their treatment.
10. Be a hearing health ambassador. Not only are you budding audiologists, but you are also ambassadors for hearing health more generally. Counsel your patients to protect the hearing they still have. Be an ambassador for hearing health wherever you go – loud restaurants, concerts, etc. You can make a huge difference for others who may not know to protect themselves.
Readers, what would you add to this list?