What Does a Person with Hearing Loss Know About Hearing Loss?

Recently I was sent an email from an audiologist (really nice recent grad) asking how to help a patient with hearing loss hear better in the noisy workplace.

When the issue of using an FM system came up, apparently the person with hearing loss stated “No, that would not work in my situation because it is too noisy”.  So I was asked to come up with some other suggestions.

Ummm, ok,  I have a whole bunch of problems with this.

First, I think we need to clarify when we need to listen to our patients and follow the patients lead.  At other times we, as audiologists, SLP’s, hearing instrument practitioners or hearing resource teachers need to provide leadership and guidance to our clients with hearing loss. As an Audiologist with hearing loss, I have walked in both sets of shoes, so I would like to offer some suggestions.

First, here is a list of things where the person with hearing loss knows best:

  1. Ask and find our all the different situations in which the person with hearing loss is having difficulty.  List them all and seriously look at how we are going to help overcome those challenges.
  2. The patient knows and can tell you how it feels to be in a given situation.  Don’t be afraid to ask about this.  When a patient says ‘I could not hear at my daughter’s wedding” find out how they felt about that.  It is good to just let the patient explore their feelings and frustrations.
  3. Discuss past experiences both good and bad to see what you are up against.  For example, find out if the client ever tried an FM system or ever used directional microphones in the past.  Likely if something was a failure in the past, find out how much coaching the patient had in how to use the equipment.

In short the patient knows, better than you the clinician, the situations they are having the most difficulty in, and what it feels like to have a hearing loss.  But here is what the patient does not necessarily know and where the expertise of the professional is required.

List of Things a Patient with Hearing Loss Does NOT Know;

  1. Whether or not a hearing aid is even needed.
  2. What electroacoustic characteristics are needed in the hearing instrument
  3. What style of hearing instrument is most appropriate.  A patient can wish all they want for a tiny hearing aid, but if the loss is too severe, it can’t be done.  Period.  Yes, many patients have lots of choices of the form factor, but some do not.  We need to lead here, not follow.
  4. What technology for managing noise is needed?  For example, if a client has a moderate severe loss and a speech in noise test such as the LiSN-S PGA indicates that an FM system is needed, the hearing health professional NEEDS to communicate this to the client.  The client does not know what technology is required.  They just know the situations they find challenging.
  5. How to effectively use the equipment.  You cannot simply toss the equipment at the client and hope they figure out how to use it in the difficult listening situations that were identified.  Patients need our counseling and coaching here.

Now back to the patient who can’t hear at work.  The specific situations at work need to be fully explored.  Ideally, you can do this formally with the COSI.  Again, the patient understands this so much better and he needs to tell us as much as he can about his challenges if we are going to have any chance of finding solutions.  Next we need to explore why he feels that an FM system would not work.  He likely does not know how the technology works or how to use it effectively.  There are excellent FM counseling tools available for this purpose.

But we have to stop letting patients dictate the wrong things.  I have seen in my 20+ years of professional experience numerous patients who are wearing “dirty little secret” tiny aids and are not getting the correct amplification.  We need to provide leadership here and work the client towards more appropriate amplification.

Similarly, we must always consider not just the amplification needs but also the hearing in noise needs as they relate to the client’s own personal situation.  Will the client need directional microphone technology?  Should it be fixed or adaptive directional microphones? Will directional microphone technology be enough or will FM technology be needed?  Most patients with moderate severe loss and greater will likely find themselves in situations in which a hearing aid or cochlear implant is not enough.

I agree that we cannot force anyone to take our professional advice.  But patients do have a right to make an informed decision.  In my opinion, we are obligated as Hearing Health Care Professionals to give the patient all the facts.  Too often, when I give talks about directional microphones, FM systems, and other assistive devices,  a patient will ask me “How come this is the first time I am hearing about this stuff?”


8 thoughts on “What Does a Person with Hearing Loss Know About Hearing Loss?

  1. Peter! I couldn’t agree more with your every word. Sometimes, it’s very difficult to lead the way when informing your client/patient of the facts in terms of what is needed, not needed. Of course it may be your opinion, but it is based in scientific evidence and expertise. I would also comment that this is the hardest part of my job. Well done.

  2. I love my hearing aid tech, but he is not God. The equipment is what it is. My new phonak is the best aid I have ever had.

    That being said, I can’t hear worth shit in most courtrooms. Bottom line – I need CART or a terp. CART is better as I’m only middling on signing skills. In a noisy situation I am functionally Deaf. I do my best to arrange my environment, but if I can’t hear, I withdraw. Why bother? I don’t do parties – things like a shoulder microphone or a mic held in the hand don’t work for me if the level of noise is so loud that I am functionally Deaf.

    I can’t find my Phonak FM system (panicking and hoping I have not lost it) but it has been of limited use to me. In a court I can’t give a mic to the judge, the opposing counsel and all other persons. In administrative hearings I tend to cope okay. In loud environments like restaurants I take out the aid, put it in a container and do lip reading – at least I don’t get a sound headache. Or, if someone there signs, I sign. Thank God for American Sign Language

    And, ultimately, I opt out of no-win situations. I just don’t go to loud parties. I stopped going to Bar meetings where the environment was horrid and I couldn’t hear anything. I probably need to go talk with them about it, but it is a small, local Bar and can’t afford to hire a terp for me at $45 an hour.

    I think that analysis of what is needed is great. The more in depth the better. Joel (my tech) is also a degreed electrical engineer and the man is whiz-bang at finding new things. He can still only do so much.

    • Love these comments. In fact, you may have inspired my next blog posting on “What do you do when you’ve lost most of your hearing”. Its a little bit funny (or perhaps sad) but many hearing health care professionals are a little lost on what to do when someone has little hearing to work with. Some decide to introduce FM technology at this point, but in fact it should have been introduced back when the hearing levels were at the moderate-severe levels, not profound. Lets chat more next week…I want to do a whole blog posting on this, not just a comment.

      • Well, when I totally lost my left ear I was 18 months old and there was nothing in 1950. My hearing loss has been gradual in my right ear – slowly dying nerve (very slowly, thankfully), the impact of Meniere’s over the years – burned out now (whew!) and the gradual progression of age. I’ve lost teakettles and bullfrogs. I’ve got some, but not all of the human speech range. I was missing some of the fricatives until this new aid changed the tonal range for me – although the two voices I used to be able to recognize over the phone are now lost to me – but I’m going to almost all text and email now.

        In fact, I’ve decided to get on the waiting list for a hearing ear dog. I’ve recently lost a few things (very expensive things) plus a set of keys that apparently dropped out of a pocket and had I a dog to hear things fall I’d not have lost my FM system and my remote control for my new hearing aid (buckets of tears).

        Some of us just could not get what we needed early on. It did not exist then. And now it is too late in many regards. I have no concept of how hearing people manage all that sound. I still get sound headaches. I have no idea what a variety of noises are – only that they exist. And they are annoying in the extreme. My daughter’s refrigerator makes a high pitched gurgling noise that drives me wild – it sounds like water going down a drain or something – I’m not sure.

        In time I think I’m going to look more at things one would find in a “deaf house.”

      • I hope you get the hearing ear dog soon. They are great, not only for helping with sounds, but also for the incredible companionship. You know, based on my blog, how much I love Amie. And before her, was another wonderful Sheltie named Radar. He was my first hearing ear dog and was every bit as wonderful as Amie, but in completely different ways.

  3. Great post, Peter. I totally agree that we, as audiologists, need to listen, but also make our opinions heard to our clients. If we didn’t do the latter, we wouldn’t be doing our jobs. What would be people paying for, if not our expertise?

  4. I agree, I think that being able to make informed decisions is very important, and being referred to a CI clinic at the correct time is also very important.
    I have progressive (well not any more, it can’t get ANY worse) sensorineural hearing loss, and when I was growing up, it was a fairly stable moderate loss, now I have no response across the board. Even when my hearing loss was in the severe to profound range and my speech discrimination scores were under 40%, I wasn’t referred to a CI clinic, I was told just get an FM system, wear your hearing aids more, lets get new earmolds… even though I knew none of this would work… the audi knew best right? WRONG.
    I was finally referred when my hearing in my right ear was non existant, and in my left it was barely testable. My hearing has dropped dramatically in the last 3 years, and no one has been able to tell me why other than, oh you have a progressive loss. I had reservations about getting a CI, and had told myself for quite a while it was something I would never do, I am very happy with my ASL and my visual language, my culture, but after meeting with my clinic yesterday, and having my evaluation, being considered a candidate, I am going for it.
    We may not know what type of aids are best for us, we may not know what type of mold, or what type of system is needed to help us hear better… but what we will know is what works best for us. I am a proud Deaf adult… but I am also going to be a CI recipient… but one thing I must say for my audi… If he would have referred me to a CI clinic in July… I doubt I would have gone… so maybe… just maybe… my audi did know best.

    • We need to listen to each other. We both have responsibilities. People with hearing loss must communicate to the audiologist our situations we have difficulty. And be willing to try devices, and strategies which will help. The audiologist must listen closely to understand the needs of people with hearing loss and must be able to offer more than just slapping on a hearing aid. That includes CI’s, sign language, FM systems etc.

      Thanks for sharing you experiences!

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