The Story behind the Hearing-Loss Guide
John M. Burkey—
Good patient care requires careful listening. Sometimes this listening is not so difficult, however, as knowing what to do about what is heard. This story began several years ago when I was confronted by a patient with a complaint that at first did not appear to be related to her care. Her pretense was to talk about a book I had written concerning hearing loss. She said she had read it, found it interesting, and admitted having discovered some information that was useful to her. Nevertheless, she didn’t like it and very much wanted to tell me why. She felt that the only people who could truly understand and honestly talk about hearing loss were others with hearing loss. Years of training and many more years as a practicing audiologist didn’t count. In her eyes I wasn’t qualified to tell the whole story. Implied but not explicitly said was that this shortcoming also applied to clinical practice—not just mine—but to all professionals who might offer advice about a condition they themselves do not have. Her true concern wasn’t about writing. It wasn’t about professional education or training. It was about perspective.
I didn’t have a good answer for this patient—at least not one that she would have found acceptable. My initial reaction was to want to view her criticism as unfair and dismiss it. Yet her perspective wasn’t so easy to dismiss. I began to recognize shades of this first-hand preference in other patients. They wanted not only professional advice, but also advice from others who had been in their shoes.
Unfortunately this first-hand advice was in short supply. The perceived stigma of hearing loss made many who needed advice hesitant to ask. It also made those who could offer good advice reluctant to volunteer. Without this first-hand information, inaction was a common result.
The obvious solution was to have patients talk with others in their situation. This was easier said, however, than done. Privacy laws prevented just throwing patients together. Even when made possible by consent, some might doubt the objectivity of the information offered by individuals who were hand-picked by a professional. Support groups were another option but not everyone feels comfortable discussing personal or health matters with a room full of strangers. Another problem is that the people who cope best with their hearing loss and could offer a helpful perspective may be the least likely to hang out in a support group.
Ultimately I decided to survey patients and their spouses and ask them to provide thoughts and advice about hearing loss that could be shared with others. I hoped for candid insights that others could use. I feared receiving pages of drivel. My fear disappeared as I found the completed surveys to be full of interesting observations and sage advice. Patients and spouses described the impact of hearing loss on their own lives. They made plain the importance of getting tested, protecting oneself from loud noise, making use of medical solutions—and in cases where medical solutions were not possible—the value of hearing aids. The overall number of responses made it easy to recognize trends and to place outlying comments (whether overly positive or negative) in context. Even after twenty-five years as an audiologist, I still found some of their remarks not only fascinating but deeply moving.
These patients and spouses offered information, perspective, and motivation that could help not just my own patients but the majority of people with hearing loss. Spouses, family members, and others who spend time with the hearing impaired also stood to benefit because some of the advice was specifically meant for them. The survey responses addressed a real need and deserved widespread attention. Incorporating them into a consumer health book seemed the best option for sharing the results. After discussion with the medical editor at Yale University Press, I decided on a book with two parts. The first part would be fairly traditional and offer basic information on hearing, hearing loss, hearing aids, assistive devices, and treatment options. It would provide the foundation for the candid remarks offered by patients and spouses in part two. This combination of objective information and first-hand advice would not only educate readers but provide the perspective and encouragement needed to make the most of their options.
Listening to one patient’s complaint and considering all that it implied ultimately resulted in a down-to-earth guide that can help many. On a more personal level, I now have something to offer patients who also demand a first-hand perspective about hearing loss or hearing aids.
John M. Burkey is the director of audiology at the Lippy Group for ENT in Warren, Ohio.