Having escaped from the waiting room zoo, I am sitting in an examining room waiting to see my new ENT specialist. And hallelujah, it’s a real room, with a door. My previous ENT believed in the open office concept, a nightmare for patients with hearing loss.
Suddenly, the doctor strides into the room, white coat and a medical intern flapping behind him. Doc plops onto the stool in front of me and looks me in the eye.
(Good communication skills, hooray! But he’s an ear, nose and throat specialist; he should know how to talk with his hard of hearing patients. On the other hand, I’ve been giving my family doctor some basic patient communication training, which she has now, after eight years, almost completed. She’s proud of the fact that she no longer talks to my feet or other body parts during a check-up.)
“So, what can I do for you today, uh, (looking at my papers), Mrs. Hannan?”
“Well, I haven’t seen a specialist in a million years, and my audiologist thought maybe it was time I should. A lot of my friends have acoustic neuromas or other interesting stuff, and when I was a child a doctor did radiation on my ear, but I’ve never had an MRI, and I’m thinking maybe I should?” (My babbling trails off.)
“Mumble, mumble,” he says into my chart.
Doc doesn’t respond to my little attention-getting wave, so I lean sideways, downwards and forward to make eye contact. “Sorry, doctor, I’m hard of hearing, could you face me please?”
He gives me a blank look, then a little laugh-snort, “Yes you are, aren’t you? Sorry about that.” (We all laugh a bit, but I’m not sure if he’s sorry for my hearing loss or because he didn’t face me.)
“Ok, fine, an MRI it is. I’m-sure-there’s-nothing-wrong-you’re coping-well-so-come-and-see-me-afterwards-probably-in-a-few-months”. Doc stands, nods and sweeps out of the office, the intern catching his wake. 45 minutes of waiting, 2 ½ minutes of consultation. I’m not complaining; I know there’s a shortage of doctors, with hundreds and thousands of people who need help. I’m lucky to have access to good medical care. It’s just that during this short meeting, I had to spend more energy on my communication challenges than on discussing my medical issues.
Two months later, I’m at the hospital for my MRI. After I change into one of those attractive hospital gowns, the technician hands me earplugs to wear during the noisy procedure.
“I’m hard of hearing,” I tell her. “Are there any instructions I need to know before this starts?”
“We’ll tell you what to do during the test; you’ll hear my voice telling you when to breathe in, hold, and let it out.”
“No I won’t. My hearing aids will be out, and I will be functionally deaf.”
A blank look. “I’ll speak loudly, you’ll hear me.”
“No. I. Won’t. What do you do for other people who can’t hear?” I ask.
A blanker look.
“Hmmm, well, we’ll do our best, I’m sure it will be fine.”
“Hmmm, well, unless you have a little captioned TV screen in there, I will not understand what you are saying.”
She frowns, but asks me to put my things away and have a seat.
Grumpy, I put my hearing aids and other valuables into a locker and sit down in a tiny ante-room. I feel vulnerable, deaf and half-naked. The technician seats two other patients, whom she has clearly told that I don’t hear, because they both smile at me, nodding, as if I were one step up from the village idiot. They talk about me ….poor thing, my aunt is the same way….and I don’t bother to tell them I can read every word their lips make.
The technician reappears with a huge length of clear tubing coiled around her arm, and motions to me. I think, not on your life, woman! I’m here for an MRI, not an enema!
My face must show my shock, because she cracks a smile. She mouths, no it’s ok, please come with me.
In the large MRI room, she says, “None of us have ever done an MRI on a deaf person. I’m embarrassed that we didn’t have something in place. But let’s try this. We’ll tie the tubing around your wrist; when we yank it, you breathe in and hold it until the next yank, when you let it out.”
“What if you forget to yank the second time?” Her smile explodes into a laugh.
They slide me in, feet first, and throughout the procedure I can feel the MRI’s loudness. I dutifully respond to the jerking of my wrist and thankfully, the tubing doesn’t break. That was my second worst fear, just after having the power go out while I’m entombed in MRI hell.
The happy ending? Nothing showed up on the MRI. But while I am pleased at the technician’s practical solution, I’m surprised at the lack of MRI protocol for patients with hearing loss – has no other hard of hearing or deaf person ever had an MRI in this major city hospital? Who would bluff through an MRI or other important medical procedures?
I can relate to the effort it takes just to get into a doctor’s office. Many years ago, I literally waited for *hours* to be seen at a noisy Student Health Center at UCLA. I asked the front desk at least once whether I had been overlooked and was told not to worry. Finally, everyone in the waiting room was told the office was shutting down for the day. Despite all my hypervigilant efforts, somehow I had missed my name being called. I was so upset that I started hyperventilating, which I wasn’t able to will myself to stop doing. (I’d never hyperventilated in a situation like that before.) I think it took my body about twenty minutes to calm down. I had been in a state of hypervigilance for hours to no avail. I don’t remember the staff showing any empathy or remorse about what had happened.
A couple of years ago, despite telling the front desk of a busy lab of my hearing loss, I didn’t know my name was being called until a stranger sitting next to me alerted me. The waiting area was so full and the TV was so loud that I wasn’t able to hear the woman who had been calling my name, who looked absolutely enraged at me. The person at the front desk apparently hadn’t relayed what I had said to her.
I think there needs to be more use of numbering systems and visual methods, as well as more training on being sensitive to people with communication disabilities.
Well said, Dana. A numbering system would work if there is a LED display showing which number is being called.
Sensitivity training needs to be built into staff training, and not depend on outsiders doing the training. With so much staff turnover, new hires need to understand from the get-go, that people with hearing loss need visual alerting.
I like your terminology “functionally deaf” without my hearing aids. So many hearing people think if I just talk louder you will hear me. This does not work when hearing aids are not in my ears. You said so many hearing people think once we admit we do not hear well we also lost our mind. I plan to share your article.
In my experience, ENTs are among the worst. Mine had me take my HAs out so he could examin my ears, and then spoke to me from behind my head!
This story reminds me of when I took my children to pediatric appts. I was wearing a body worn hearing aid, nestled in my bra. Needless to say that in addition to all the clatter in a waiting room, I also heard my baby’s every squirm in my arms as I tried to keep a watchful eye on my busy 5 yr old. I always ended up in a sweat before we even got in the exam room!!! I insisted that they have HARD OF HEARING MOM on the chart, but it still was a problem because the ever changing staff did not know who I was !!! Now that I have bilateral CI’s I hear my name called….too late to help with my kids but I remain ever thankful for the 15 yrs of bionic hearing! I did mourn the years lost hearing my kids as they grew up, but now there grandchildren that I am hearing! This is an amazing world full of sound!!! Gael, thanks for your candid and funny stories!
I am going to share this with everyone on my contact list. Perhaps one of them will share it with a nurse or doctor and the word will get out that people with hearing loss need accomodation and speaking loudly is not considered accomodation. I had surgery and after complaining about them taking my cochlear processor because of the fear that accompanies not being able to hear anything, they taped it to my head, put a cap on me and let me wear it. What a blessing that was. I was able to hear the Dr. when he came to me after surgery to tell me that I did not have cancer. Love the nurse that made that possible.
As always Gael, you paint a clear picture of the situation in a humorous way but also highlight the continued challenges we face with the medical profession. I have similar stories, including some in surgery where they end up having to pull their masks down to tell me what’s going on before they put me under. So much for sanitation? I will share this article too with my med professionals; the more this gets out there, the better. Can you put this article into a medical journal?? or something to get the point across.
Speaking of staff training, UBC is having some medical trainees meeting with people in the community with chronic illness for training on doctor/patient interaction. I have put my name in as a volunteers so this is the one thing I will emphasize.
To the point, as usual Gael. I plan on sharing this with the Accessibility Committee at our hospital and with the Patient Advocate in the hospital where I had my hip replacement.
Gael, just to let you know that I have sent this article to everyone on my list asking them to send it to their list and especially medical professionals. Thanks for reminding us that there can be humor found even in the worse situations.
Jess
Hi Gael:
I am sending this to every ENT I know. I will also point it out when I give my lecture to the U of T medical students.
jo
I work at a hospital, this should be in the waiting room of any health office of what you suggested, a LED number display. I hated it when I had to take my daughter or myself to the ER and not being able to hear our name being called out for our turn. I depend on lip reading and I tell them every time I go please come to me when our name is being called but they don’t……
Wow great story for everyone in the medical community! As you know I worked in MRI for 15 years and I have to say my staff didn’t come across very many functionally deaf patients. Some patients were hard of hearing and we gave them all the instructions before hand or had a friend stand in the room and touch their leg when they needed to hold their breath or breath. Your experience is a great example of how we all need to take our time and understand the patients needs and accommodate accordingly. I will pass this story along to the MRI community and I’m sure they will come up several great solutions to pass along. 🙂
I know a person who has had many MRI’s over the past three years as a functionally deaf person also – and – in her hospital – there is a light that goes on and off for the “hold breath” instruction. It’s a light of a smiley face. Only – hear this — it is not working half the time, or, one cannot see it for an MRI of the entire body.
Considering how many people have routine MRI’s these days, e.g. for cancer experiences, it’s hard to believe that hospitals don’t know more about this, though we believe they don’t of course. Also “telling” (pun intended 🙂 is the technician who says they have only “hard of hearing” – (for another discussion). The problem is all over the place as we all know, all medical centers need awareness training, more of it, frequently. Thanks Gael.
ls/ccacaptioning.or
You make a very important point. It sends me right back to my day to day work as an audiologist. I serve people with diverse needs, some with perfect hearing, some with minor hearing loss, kids with speech issues, and naturally patients that need hearing aids (or they have one and they need some adjustments).
I’m required to do this mental switch in my head between the different patients and I must admit that on some occasions, only after he/she says “come again” I fine tune my communication to fit the person’s need (Speak loud and clear, facing him etc). Naturally, I’m always glad on cases where I make the adjustments beforehand…