Here now, but heard nothing

Author(s): Amber Kimball Hsu, PhD, RN

It was a busy day on the cardiac unit where I had one of my first patients as a new nurse. I’ll call him Mr. Smith. Mr. Smith was about 80 years old, as sharp as a tack, as kind as Mother Theresa, and as comical as Adam Sandler in his earlier years. This was interesting to me because Mr. Smith could hardly see or hear anyone, except for his brother, and hearing loss is strongly associated with cognitive decline. I introduced myself as his nurse.

Mr. Smith rarely understood me and would often resort to enlisting his brother for help, if he was available. Female voices tend to be more challenging for patients with hearing loss to understand due to higher frequency loss, and, unfortunately, Mr. Smith’s entire nursing staff was female. I watched as nursing assistants checked his vital signs, commenting occasionally, knowing that Mr. Smith couldn’t hear them. I watched other health professionals speak with Mr. Smith’s brother about his diagnosis and treatment plans as Mr. Smith peered on with a gigantic smile, slipping in a funny comment or two about the hospital food or how all the doctors looked like they should still be in high school. I watched Mr. Smith’s various hospital interactions throughout the few days I cared for him. I noticed how he was often left out of conversations pertaining to his healthcare, but still was poked and prodded and expected to comply as if he understood what was happening. Which he always did, with a smile.

A familiar experience

Mr. Smith’s unintentional exclusion from conversations regarding his plan of care became a regular occurrence, and often is for patients with hearing loss. Healthcare providers frequently resort to a paternalistic approach towards patients with hearing loss by speaking with their family instead of the competent patient. Mr. Smith’s experience felt eerily similar to my experiences as a young girl. I was born with hearing loss and diagnosed profoundly deaf by the age of 3. My world became silent and was often quite lonely, that is, until I was introduced to accommodations like cued speech and the cochlear implant.

Although these accommodations helped, they weren’t perfect. I often continued to experience challenges due to many factors. I had very little control over various background noises and classmates or parents’ knowledge or desire to ensure my communication needs were optimized. I constantly strained to hear fellow classmates and friends, which often resulted in me asking for repetition—a request usually swiftly followed by “Never mind.” This resulted in me feeling depressed, downtrodden and disengaged.

I could see my experience reflected in what was happening to Mr. Smith, as he disengaged during interactions. I certainly understood. Listening is hard work, especially if your ears aren’t operating correctly. Hearing loss is associated with fatigue, short-term memory loss and lower patient activation. As a young girl, to counter disengagement, the one place I felt I had some control was during the Independent Education Plan (IEP) meetings. My mother, teachers, and transliterators ensured I was involved in making pivotal decisions in my educational plan. The dialogues among my mother, IEP professionals and me were invaluable as they helped create a feasible and sustainable education plan—one that I would be more likely to follow because I helped tailor the plan to fit my needs.

Dangers of hearing loss

Patients with hearing loss are more likely to be readmitted to the hospital within 30 days and have higher odds of mortality compared to their hearing peers; they are also more likely to experience medication non-adherence. These facts, coupled with hearing loss’s association with cognitive impairment, lower patient activation, and higher risk for paternalistic communication, suggest that those with hearing loss need nurses to take action.

“Do you wear hearing aids?” I asked Mr. Smith. He grinned and shook his head no, adding, “but I probably oughta.” I wasn’t surprised. Approximately 70% to 80% of older adults who would benefit from hearing aids don’t use them. Factors contributing to non-use include the fact that age-related hearing loss usually isn’t recognized for 10-15 years due to the slow and simultaneous progression that typically occurs bilaterally. In addition, hearing loss is under-diagnosed or not prioritized due to more pressing health concerns, lack of knowledge of the implications of untreated hearing loss, or the intrinsic belief that it is just a natural part of aging. Hearing aids are also usually not covered by insurance, which makes them cost prohibitive for older adults on fixed incomes and often results in them forgoing hearing aids all together. Hearing aids can improve communications, quality of life, and even reduce inappropriate healthcare utilization. Despite research indicating that implementing hearing aids is a quality improvement intervention, even if patients own hearing aids, they not bring them to the hospital for fear of them getting lost, stolen or broken. So, for patients like Mr. Smith who do not have hearing aids, or patients who don’t bring them, how are their communication needs optimized during their healthcare visits, including hospitalizations?

Although the United States recently celebrated the 30th anniversary of the American Disabilities Act, hospitalized older adult patients with hearing loss still face significant barriers. Unfortunately, the likelihood of patients like Mr. Smith being screened for hearing loss or using an assistive listening device during their healthcare visits is low. The likelihood of healthcare professionals utilizing Food and Drug Administration registered clear masks such as Safe’N’Clear to assist with lip reading is also low. This is partly because patients visit physicians and pharmacists for more pressing health conditions, and hearing loss becomes overshadowed. Another reason is that hearing healthcare research and resources have focused largely on the pediatric population, often ignoring patients like Mr. Smith, who sustain hearing loss later in life.

Initiatives to help

There are system-wide hearing healthcare efforts led by various organizations, including University of Pittsburgh, Hearing Loss Association of America (HLAA), and Johns Hopkins University. These organizations are prioritizing identifying and improving communication and healthcare access for older adult patients with hearing loss within hospital settings. Some of what these programs include are implementing training sessions for healthcare personnel, incorporating identifying questions in the initial health assessment, placing posters above the patient’s bed and providing assistive listening devices. There are also valuable organizations and resources available at state and national levels for older adults, such as the aforementioned HLAA, and the Department of Health and Human Services (DHHS). The HLAA and DHHS provide ample information regarding implications of untreated hearing loss, insurance coverage, hearing accommodations, provisions of the American Disabilities Act, local meetings and much more. The information and services are widely available to anyone who ventures online to seek it; however, older adults with hearing loss, or the healthcare professionals who care for them, may not readily know about them.

Beginnings in North Carolina is a great example of a non-profit organization that proactively helps parents of children diagnosed with hearing loss. According to their website, Beginnings assists parents with understanding test results, communication strategies, options for hearing accommodations, and the American Disabilities Act. Beginnings not only provides important information and ample resources online, but also emotional support and advocacy for these families. When a child screens positive for hearing loss on the newborn hearing screen in North Carolina, Beginnings sends a representative to answer questions and provide parents with comprehensive information regarding hearing loss. As successful as Beginnings has been with families of children with hearing loss, one has to wonder if this intervention would also work for older adults diagnosed with hearing loss. Would providing a folder of comprehensive information during hospitalizations, primary care visits, or pharmacy visits assist with getting older adults with hearing loss into hearing healthcare appointments sooner rather than later?

Making do…

During Mr. Smith’s hospital stay, Beginnings for the elderly was not available, nor were readily accessible accommodations like assistive listening devices, or even a folder of information about his hearing loss. What we did have, however, was a yellow disposable stethoscope that doubled as a somewhat effective hearing device for Mr. Smith. The disposable stethoscope wasn’t perfect as he often still required repetition, but it made engaging in conversations for Mr. Smith more feasible, and subsequently, he seemed happier.

I sometimes wonder how different it would have been if I could have provided an over-the-counter assistive listening device or given Mr. Smith a folder filled with comprehensive information on his hearing loss. I wonder if it would have improved the quality and quantity of information he ultimately retained and was discharged home with regarding his diagnoses, medication regimens, and his hearing loss. But instead, I sent Mr. Smith home with his standard discharge papers, the yellow disposable stethoscope, and a note pad paper scribbled with information about various accommodations and resources, and a note that he should see his primary care provider to obtain an audiology referral, in hopes that he would comply. I have a feeling he did, with a smile.

Amber Kimball Hsu is Disability Policy Postdoctoral Research Fellow at Northwestern University in Chicago and a 2020 – 2021 Health and Aging Policy Fellow. She would like to acknowledge her mentors, Megan McHugh, PhD; Allen W. Heinemann, PhD; and Sumitrajit Dhar, PhD, for their helpful review of this piece.

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