Not Much of a Joiner?

NYnewyorkcitychapter

“I’ve never been much of a joiner.”

I was encouraging an acquaintance with hearing loss to come to one of our HLAA Chapter meetings. I told her about our informative programs and guest speakers. I also said the meetings were a chance to meet other people with hearing loss.

She agreed to give it a try, meanwhile explaining that she wasn’t much of a joiner and not to expect to see her often.

That’s what I always used to say too. “Thanks, but I’m not much of a joiner.”

Here are some groups I never joined: the PTA, a church, the co-op board, the block association, political action groups, yoga classes, meditation groups, group therapy, French classes, Al-anon, dog training.

I always thought I just wasn’t much of a joiner. But suddenly (how could I not have seen this before?) I realized that it had everything to do with my hearing. It’s not that I don’t like people. Or committees. Or volunteer work. Or meditation. Or a well-trained dog. I just can’t hear.

It took me a while to join HLAA. I first went to one of the annual conventions in the course of reporting for my first book. The research seminar that year was on advances in finding a cure for hearing loss, primarily through gene therapy and stem cell therapy. It was fascinating but, more important, I could “hear” it. I could hear it by virtue of the live captioning and the hearing loop that had been installed for the event.

Someone I met there invited me to come to a chapter meeting back in New York. I’m not really a joiner, I said, but come September I did show up at a chapter meeting. Captions! A hearing loop! A really interesting program, with a panel of audiologists talking about hearing strategies.

What I could not do then and still cannot do is join in the socializing before and after the formal program. Luckily we have name tags so I know who I’m talking to, which is a tremendous help. But a substantive conversation is out of the question. Just as I always did before I told people I had hearing loss, in the old days of denial, I nod and smile and ask encouraging questions. But if you’re reading this, and you’ve tried talking to me at a meeting, it’s possible I haven’t heard a word. Follow up with an email!

I’m open about my hearing loss. In fact, I joke that hearing loss has become my profession. But there are certain circumstances that just don’t work for me. One is social time at our chapter meetings. Another is exercise class, which I will write about in my next post.IMG_3613

The photo at left was taken at last year’s New York Walk4Hearing, an annual event that will be held this year on September 23. If you’re not sure you want to try a chapter meeting, come to the Walk. No need to register. Details on our website. 

For Better Care for Older Adults, Think Hearing Loss.

Two scholarly papers published this month discussed the impact of hearing loss on patient communication in older adults. Both found that unrecognized hearing loss may have a serious negative impact on health care in the elderly.

In the first, published in the British Medical Journal (BMJ) on January 18, researchers Jan Blustein, a professor of health policy and medicine at NYU, Barbara E. Weinstein professor of audiology at the CUNY Graduate Center, and Joshua Chodosh, a geriatrician at NYU, found that the rate of hearing loss is underestimated in medical settings, and analyzed the effect of undetected hearing loss on doctor-patient communication.

pexels-photo-272864

In the second, published in the Journal of the American Medical Directors Association (JAMDA)  on January 30, the same authors as well as Ellen M. McCreedy, at the Center for Gerontology and Health at Brown University, discussed why hearing loss may be especially disabling in nursing home settings, and provided an estimate of the prevalence of hearing loss in those settings.

Hearing loss in older adults is measured in various ways. One is a catchall number that includes everyone over a certain age:  two-thirds of those over 70 have hearing loss, four-fifths of those over 80 have hearing loss. Sometimes it’s measured by decades: half of those 70-79 have hearing loss; 80 percent of those over 80 do. These figures include everything from mild to profound loss.

Whatever way you count it, however, the elderly experience hearing loss in large numbers. So when the researchers found that federal data indicated that 68 percent of long-term nursing home residents over the age of 70 had “adequate” hearing, it seemed worth investigating.  Was hearing loss just not being recognized in nursing homes? And if so, was it affecting care?

The Federal Data was compiled from the Minimum Data Set (MDS) that all nursing homes are required to report to the federal government. In 2016, nursing homes reported that 68 percent of their residents had “no difficulty in normal conversation, social interaction, or listening to TV.”

That number seemed “implausibly low” to Dr. Blustein and her colleagues. The National Health and Nutrition Survey (NHANES), which is the authoritative source about the rate of hearing loss among adults who live outside of institutional settings, found that only 44% of those 80 and older said that they had “excellent or good” hearing. As the JAMDA paper notes, these two figures are at “striking odds” with each other.

It stands to reason that the rate of hearing loss in nursing home residents should be about the same as that of adults living outside of institutional settings, which would mean that many people in nursing homes and other health care settings are having trouble hearing. They may not be having trouble hearing all the time, but crucial hearing situations are often the noisiest.

Many of those who say they hear adequately probably have mild to moderate age-related hearing loss. Their speech comprehension may be fine in quiet conversation. But nursing homes are far from quiet – studies show that social settings are often very noisy, with televisions blaring, dishes clattering in cafeterias, and residents crying out. Moreover, “high stakes” medical-care situations – emergency rooms, intensive care units, ambulances — tend to be the noisiest. These are also stressful situations, and stress also impacts comprehension.

Hearing aids are one solution, but hearing aid use remains low even in this population. Even if they do have hearing aids, people may leave them at home or in a safe place, to prevent loss or damage.

In both articles, the authors propose easy low-tech solutions for making sure hearing loss doesn’t get in the way of good patient care.

The first is for clinicians to be aware that their elderly patients may have hearing loss, even if they don’t know it. They should also check for impacted cerumen, or ear wax, which can affect hearing.

Every facility should have on hand personal amplifiers that can be shared with patients. The PocketTalker is perhaps the best known. The researchers also mention the Mino and the Sonido Listener. These devices cost about $150.

Health care workers also need to be mindful of communication strategies: they should make sure they have the listener’s attention, face the listener, speak clearly but not too slowly, rephrase rather than repeat words the listener has not understood.

Dr. Blustein (who has hearing loss herself and who serves on the Board of Trustees of the Hearing Loss Association of America, as do I) believes that hearing loss profoundly affects communication with patients. “Those of us with hearing loss often smile and nod so that the world thinks that we understand. It’s much more convenient. It’s easier. A patient may nod and smile, but not really understand what she is being told,” she said in an interview with the BMJ. Busy clinicians, too, may just want to move on, get their work done. So both the patient and the clinician may be contributing to the detriment of good patient care.

Unrecognized hearing loss can also sometimes be misdiagnosed as a cognitive impairment. “I think… my intuition… is that this is one of the great issues,” Dr. Blustein told the BMJ. “It’s sort of low-hanging fruit in clinical medicine, the assumption that someone has cognitive impairment when they don’t respond appropriately.”

Asked why the effect of hearing loss on good communication has remained unrecognized by many doctors, Dr. Blustein replied: “I think disability, generally, is not something that medicine is attracted to. We tend to be attracted to really dramatic, acute illness. Disability is complicated, it takes time.” And, she added, it occurs primarily in older people. “This is dismissed as ‘normal aging’. It’s ageism.”

People with hearing loss share some of the responsibility. Both patients and providers will benefit from the Guide for Effective Communication in Health Care, created by Jody Prysock and Toni Iacolucci. It includes information specifically for patients and their families (including a form that can be filled out in advance of medical interactions and should be entered into patient charts) and for providers. It can be found on the New York City Chapter’s website under Resources, with a link to the national website.

For people with hearing loss, it’s important to be honest, to disclose our disability. For providers, it’s important to recognize that hearing loss may be a factor. It’s a two-way street.

 

For more information about living with hearing loss, read my book “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.