Dr. Ross on Hearing Loss
Aural Rehabilitation: Some Personal Reflections
by Mark Ross, Ph.D.
When Geoff Plant asked me to give this keynote presentation, he said to be sure that I included some of my personal experiences as a hard of hearing person. Actually, I wasn't sure if I could or should do this, since I don't feel all that comfortable talking about myself. On reflection, however, it really may be a good way to introduce a conference on Aural Rehabilitation (AR), since I do believe that there are lessons we can draw for the present day from my personal experiences a half-century ago.
My hearing loss was detected in 1951 while I was in the Air Force, although I think its onset occurred during an earlier period of military service. Of course, like just about anybody else with a hearing loss, I knew I had some hearing difficulties and, like many other people in the same predicament, I simply tried to ignore its presence, getting along as best I could. At the time, the only help I would have considered would have been medical or surgical, that is some way to "cure" or "fix" my hearing loss. Fortunately for me, I was not given a choice.
After I was given an audiometric test, which clearly revealed the presence of a hearing loss, the next thing I knew I was transferred to Walter Reed Hospital, as an involuntary participant in their AR program. But not before the examining otolaryngologist told me that I had a "progressive hearing loss" and that I would soon be going "deaf!" It was only many years later that I realized that the doctor's definition of "deaf" and mine were quite different. Without hearing aids, I would indeed be "deaf", but certainly not with them. From my perspective, the only definition of "deaf" that counted was my ability to use audition as my primary communication mode. The fact that I can still do this, even with a bilateral 90 dB hearing loss, tells me that I am not functionally "deaf". This doctor did me, and I'm sure many other patients, a disservice when he employed a term in one way that most people would understand differently. Simply said, his comment scared the hell out of me, and this fear stayed with me for years until I learned better.
In any event, the Air Force gave me no opportunity to object to the transfer, or to engage in the usual and agonizing self-defeating exercise of denial. Ironically, it now appears that one of the merits of this entire process may have been the fact that I did not have a choice: being in the military, I was simply ordered to go and I did. In my case, there was not the usual seven-year delay between the symptoms of a hearing loss becoming apparent and the acquisition of hearing aids. Clearly, this is not a model that we can follow in civilian life, however we might sometimes wish it.
The Walter Reed AR program lasted for two months, during which time the participants were all boarded together in a separate physical facility. Each day and all day we went to various kinds of classes, ranging from general information about hearing loss to speechreading and auditory training. At the beginning of the program we were issued hearing aids that were selected for us by the traditional Carhart procedure. This entailed being tested with about four to six aids, trying to determine which one was "best" for us. The measures included unaided and aided speech discrimination tests in quiet and in noise, comfort and uncomfortable determinations, and both use and full gain aided speech reception threshold (SRT) tests. "Best" was defined in terms of higher speech discrimination scores, wider dynamic range, lower aided SRT's, and subjective preferences. Cosmetic preferences, as can be imagined, never came up.
This test battery would take almost a complete morning or afternoon. Even so, this was not the end of the process. About once a week, I returned for follow-up testing and such "fine-tuning" as could be done in those days. Complaints and problems with the hearing aids and earmolds could be handled almost immediately. However, it is important to note that unlike today, where the provision of hearing aids is often considered the end point of our efforts, in this program the hearing aid was just one component of a comprehensive AR program.
The formal program was supplemented by many "bull-sessions" and informal exchanges between the patients that took place during, in-between, and after classes. Although we did not use the term "coping and communication strategies", this was in essence what was going on. We shared our hearing experiences, some of our feelings (being "macho" young men we didn't delve too deeply into ourselves), and examples of what kind of communication tactics worked and did not work. Actually, in retrospect, these experiences were probably the most valuable aspect of the program. The group interactions provided the kind of emotional support impossible to replicate in individual counseling sessions. This is definitely a lesson that we can take to heart even now.
Although we thought we were learning how to lip-read and how to make better use of our residual hearing, and some of us undoubtedly were, what was also happening was that we were learning how to accept the hearing loss and accept ourselves. We would joke with one another about "being on the air" when we put our hearing aids on and, by example, encourage those who were reluctant to wear them. Unlike the pressures that new hearing aid users now often feel that can lead to them to discard their hearing aids feeling "different", stigmatized and a bit ashamed - the social climate in the AR program was exactly the opposite. It was expected that everybody would "conform" to the accepted practice by regularly wearing his hearing aids. The fact that the program lasted for two months made it easier to continue our good hearing aid habits after we left.
The hearing aids we were issued were monopack vacuum tube hearing aids, requiring an "A" battery that had to be changed every two or three days and a "B" battery that would last a week or two. We felt very lucky to be the recipients of these "small" convenient instruments, particularly since we were told that the groups who preceded us were issued duo-pack hearing aids; these required a battery pack physically separate from microphone and amplifier. Besides, being in the service, we could hardly insist on receiving more "cosmetically acceptable" devices. First, because this kind of demand was simply unheard of in those days, and second, cosmetic concerns, even if we could conceive of how far down the ear canal it has taken us nowadays, was simply not an issue. We wore what we were ordered to wear, on the professional judgment on what was considered "best" for us. Nowadays, unfortunately, professional judgment regarding performance often takes a distant back seat to a patient's expressed cosmetic concerns.
After the AR program, I spend three more years in the Air Force, spending much of that time in North Africa where, I believe, I may have been the only person wearing hearing aids, if not in the entire continent, at least in the immediate region. There's another, very important lesson, here for the present day: Because I accepted the fact that I had to wear hearing aids, and accepted myself on this basis, I truly believe that its presence was completely irrelevant as far as my work and social activities were concerned. I didn't make a big deal about the fact that I wore a hearing aid and, consequently, neither did anyone else. If somebody asked about it, I simply said it was a device that helped me hear like eyeglasses would help someone see. I can't think of a time when this explanation did not suffice. I've never really accepted the notion that the wearing of a visible hearing aid is associated with a negative personal appraisal, some kind of social stigma invoked by society on hearing aid users, or what has been termed the "hearing aid effect". Of course, I do know that some people in our society may initially judge hearing aid users as less competent and less desirable, etc. But, I'm convinced that, given self-acceptance, their attitudes will soon either be irrelevant or changed. Instead of confronting this presumed "stigma", however, we pander to it by focusing on cosmetics rather than performance and need.
I should point out, however, that even with the exemplary program I received that I must have still felt a great deal of uncertainty about how the hearing loss was going to affect my life. Given the initial diagnosis of "progressive hearing loss", I was understandably insecure about the future. So when I returned to the U.S. from North Africa, I asked to be transferred to Walter Reed hospital so that I could take the AR program once again. To its credit and to my benefit, the Air Force agreed to my request. In a sense, what I was asking for was an AR "booster" shot. Even more than my first experience, I believe it was at this time that I truly came to terms with the fact that I had a permanent hearing loss. It was at this time that I accepted the notion that while its presence was clearly going to produce some difficulties in my life, that the fact that I was hearing-impaired need not restrict the course of my life in any fundamental way.
There are lessons we can draw from this for the present day. Just because we have, or think we have, provided what we believe to be an appropriate AR program to our patients, that does not mean that they will thereafter be "cured" and never need darken our doors again. As we well know, it doesn't work that way. We know that people's hearing losses and their communication needs change over time. We know that much of what we covered and what we thought we had resolved initially may have been forgotten. And we know that new devices and techniques are constantly being introduced, which may offer benefits previously unavailable. Our clients often need a "booster" shot from us, a provision that should necessitate a routine follow-up program.
The "Stigma" of Wearing Hearing Aids
Majoring in "Speech and Hearing" when I left the service brought about a whole new set of lessons that have still stayed with me. Actually, the primary reason I started college was to try to learn enough about audition and hearing aids to be a knowledgeable hearing aid salesman. So for the first year I was at college I sold hearing aids part time. In all that time, I sold just one aid and that only because one of my brothers arranged the sale! I worked by knocking on the doors of people who had made some sort of inquiry in the past. Their responses really exposed me to some of the attitudes about hearing loss that pervaded our society then and, to a large extent, still does now. People I saw would deny that they had a hearing loss, this while I had to shout at them to be heard! Or they would be very upset that I somehow knew about this terrible secret of theirs. After all, they were promised when they responded to an advertisement that they would be sent material in a plain brown envelope, so nobody would know that they inquired, and that no salesman would come knocking at their door. And here I was exposing their shame and stigma for all the world to see!
Salesmen were advised to stress how small and invisible the hearing aids were. These, we should note, were body aids. All kinds of tricks were played to minimize visibility, from transparent tubing that ran from the earmold to the receiver pinned under the collar, to beret style aids that were placed in the hair. Fifty years later, we're still doing the same thing. It doesn't seem to matter how technically advanced hearing aids have become, or how tiny these really sophisticated devices are; they're still not sufficiently invisible for many people. And for this population, they never will be small enough. It's clear that the problem is not the visibility of the hearing aids, but rather the acceptance of the hearing loss. In the fifty years that I've been involved with this field, we are still communicating mixed messages. On the one hand, we justifiably stress the technical advances incorporated in modern hearing aids. At the same time, however, we also emphasize how tiny they are, how they can fit all the way down in the ear canal and that nobody "need know they're wearing hearing aids."
What is happening is that we are reinforcing the very denial attitudes we are trying to overcome. By stressing invisibility, we convey the message that there is something shameful about having a hearing loss, that it is a stigmatizing condition that people must disguise as well as they can. I'm convinced that more potential hearing aid candidates are discouraged from trying needed amplification by this type of appeal than are motivated to try them by the cosmetic arguments. People don't "hear" the cosmetic appeal as loudly as they do the underlying shame and stigma message. If we can't get people to acknowledge the fact that they have a hearing loss, there is nothing we can do to help them. Clearly, they are not ready to help themselves. One measure of our success in this endeavor would be the percentage of people who can potentially benefit from amplification who actually wear hearing aids. In this country, that figure is usually considered to be about twenty percent - not a very impressive record.
Taking the Hearing Loss Seriously
In order for this percentage to increase, there has to be more awareness in our societies regarding the potential consequences of a hearing loss, that it can, and often does, impact on every aspect of a person's life. However, instead of some measure of empathy, what we often get are insensitive comments like "she can hear if she only pays attention". If a society underestimates, mocks or trivializes the total impact of a hearing loss then it is unlikely that any type of AR program will be supported or encouraged. The condition would not be considered a severe enough public health problem to warrant public resources allocated to its remediation. At a time of limited resources and rising expectations, such an understanding is crucial if AR is to receive its justified portion of the health-care pie.
If we only had to convince the general public and policy makers regarding the potential implications of a hearing loss, and the need for AR services for most people with hearing loss, then our challenge would be straightforward, if not exactly easy. Unfortunately, it seems to me that before we educate others, we need to start by educating ourselves.
This can be seen in the hearing aid selection and dispensing model most often employed by hearing aid dispensers. The focus is on the instrument, on the hearing aid itself, and not on the person with a hearing loss. In the ordinary sequence, a client first receives an audiological evaluation, then the hearing aid is selected and several follow-up appointments are scheduled. The average total time devoted to all of the activities associated with the hearing aid selection, from the initial testing and personal interview to the actual fitting to follow-up and counseling is little more than two hours (Stika and Ross, 2001). Less than an hour is spent on the counseling component (Kochkin, l999)
In this period of time the dispenser has to deal with the electroacoustic challenge presented the patient. The aids have to be selected and programmed, the person has to be instructed how to care for them, and time has to be spent dealing with the invariable adjustments and reprogramming. Perhaps the current model provides sufficient time for these activities. But there certainly will not be time to deal with the other personal and social issues arising from the hearing loss. What we are implying is that all that hearing-impaired people need to correct their hearing related problems is an auditory prosthesis, that we have met our professional responsibilities once the hearing aid is selected and properly fit.
The fact that people want and need more information can be seen in the marketing survey prepared for the AAA (Audiology Today, l998). Almost half the hearing-impaired people responding to the survey reported that they would have liked more information on how to select, wear, and care for hearing aids. About forty percent of them wanted to learn more about the causes and treatment options of hearing impairments. Even this relatively high number probably underestimates the number of people who could use and benefit from such information.
It is not as if there is any real dispute among professional audiologists regarding the consequences of a hearing loss. Indeed, not only is that the theme of a number of papers that will be delivered at this conference, but there is also an enormous body of literature on this topic, much too much to review in any detail here. For example, we'll be hearing later from Carren Stika about the results of the many focus groups she conducted with hard of hearing people and their significant others (Stika, 1997a; l997b). The fact that a hearing loss can have a pervasive and profound effect upon the affected person and his/her family was clearly demonstrated in this project.
Implicit in (both) the current hearing aid dispensing models is the assumption that the provision of hearing aids are both a necessary and sufficient response to the hearing loss condition. This model implies that they can functionally "cure" the hearing loss and that further services are either unnecessary or not cost effective. We would all agree that hearing aids are an absolutely necessary measure to take in most instances of hearing loss, however, I would hold that for most people, a hearing aid by itself is insufficient. Of course hearing aids help, and of course most people, comparing their ability to function without and with hearing aids, do better with them than without them (Kochkin & Rogin, 2000). No doubt, also, many such people would believe, at least initially, that their hearing problems have been "solved" or at least rendered functionally irrelevant by the hearing aids. Not knowing any better, they either accept less than is possible, and simply live with the resulting limitations and problems while enjoying the benefits. This is not good enough. We can do better.
For example, about 16% of people eventually stop wearing their hearing aids, and a similar number rate their hearing usage as unsatisfactory (Kochkin, 2000). Satisfaction percentages seem to hover somewhere between 60 and 70 percent. We also know that with additional counseling and follow-up programs we can reduce the number of returns and increase benefits, use, and satisfaction rates (Reviewed in Ross, 1999; Kochkin, 1999). Indeed, a number of the papers given at this conference explicitly address the organization, advantages, and cost effectiveness of AR procedures that go beyond the simple provision of a hearing aid or cochlear implant.
Services and Information Needed by Hearing Aid Wearers
Let's consider now the services that hearing-impaired people require when they finally arrive at a hearing center. It is important to keep in mind that we would not be seeing these people if their hearing problems had not, somehow, become personally intolerable or if they had not finally succumbed to repeated nagging from some significant other. What, then, are our professional obligations to them? The ostensible reason they come to us is for professional advice regarding hearing aids. And, of course, the proper selection and instruction in the use of hearing aids still has to be a paramount consideration. The implicit reason they see us, however, is not for hearing aids per se, but because they want help in minimizing the hearing-related problems they are experiencing. Well-selected hearing aids are just one tool, albeit the major one, that addresses this issue. There are other services and information we can provide that will help people reduce the total impact of the hearing loss on their lives. They may not be aware of these other services, but shouldn't it be one of our professional responsibilities to make these known to them? What this implies is a focus, not on a product, but on the rehabilitative process. It is when patients show up at our door asking for help with hearing aids that we have the best opportunity to address the totality of their hearing-related problems. So what services are we talking about?
All prospective hearing aid users require is a comprehensive audiological evaluation. This may sound self-evident, but what with hearing aids being sold through mail order and the internet, it cannot be considered a given. A component of this evaluation should be devoted to an extensive personal interview.
Either preceding or immediately following the personal interview and audiological evaluation, the client should have an opportunity to complete some type of standardized self-assessment scale. The same scale should be administered after the person has worn the hearing aid for some time. In a recent chapter, Abrams and Hnath-Chisolm (2000) provide a comprehensive discussion of outcome measures, with examples of the different types that can be used for different purposes. Their rationale extends beyond providing data regarding therapeutic effectiveness and institutional accountability. Responses to these self-assessment scales can also help guide the nature of the therapeutic process.
Many, perhaps most, people with a hearing loss can benefit from a group hearing aid follow-up program, but to supplement and not supplant individual counseling. This gives them an opportunity to review and share their listening experiences with other people with hearing loss. The mutual support that such people can give each other transcends by far that which professionals can provide. Some topics, such as the advantages of binaural hearing aids, can be covered more convincingly when someone else in the group relates personal experiences rather than when the recommendation appears to be tied to a dispenser's self interest. Reluctant hearing aid users, or those who feel that "it is just too much" trouble can be encouraged to continue the effort, that the end result will be worth it.
People need general information about the causes of hearing loss and their treatment options. People can deal with a problem more effectively when they have a greater understanding of its nature. Many people come to clinics wanting and expecting to be "fixed" medically or surgically. They have to understand why some types of hearing loss are not amenable to such treatment and that the best single "treatment" is often a well-functioning hearing aid.
People need information about the listening implications of their own audiometric results (for example, why so many people seem to be "mumbling", and why they can often "hear" but not "understand"). This is the kind of topic that dispensers tend to gloss over after the 1000th time it was presented to clients. It is difficult, but necessary to provide such information each time as if it were the first time.
The significant others in person's life should understand the communication implications of their loved one's hearing loss. By listening to others make complaints similar to their loved ones, they can more fully appreciate the problems caused by a hearing loss. One useful technique is to play a tape of filtered speech to the normally hearing significant others.
People need information about how to care for their hearing aids and earmolds. They need to know why one type of hearing aid was selected rather than another. This leads to a discussion of the particular features of their own hearing aids, what they do, and why they were included (e.g. directional microphones, T-coils, presence or absence of volume controls, personal FM capability, direct audio input, multi-bands, multi-memories and so on). This kind of information takes time to convey and group presentations can supplement individual instruction.
A group setting also lends itself to help people develop realistic expectations of what hearing aids can and can't do. Some people's expectations may be unrealistically high, while others set their standards too low. This discussion leads naturally to the topic of other types of hearing assistive devices.
The evaluation of and dispensing of other types of hearing assistive technologies is, in my estimation, one of the biggest weaknesses in present hearing aid dispensing practices. For some people, specific devices can significantly improve their quality of life as well as directly impact upon job performance. Everybody in our society is required to use a telephone and, one way or another, telephone communication can be improved for every person with a hearing loss. Everybody listens to the TV, goes to the movies, lectures, concerts, houses of worship, in all of which it is possible to improve listening comprehension with a an assistive listening device. Some people will function better on the job if they can use a personal FM, a conference microphone, an amplified telephone, or a vibrating pager. The need for such devices may not be immediately apparent; it requires an explicit evaluation to make this determination.
People with hearing loss can benefit from information about various kinds of communication and repair strategies that can be used to enhance interpersonal communication. This would include a presentation and discussion of the basic principles of speech reading. With a little practice and focus on the lips, hearing-impaired people can improve their comprehension of the spoken word. They should know about the concept of assertiveness, when and where it would be appropriate, and encouraged (via "homework") to practice it in their everyday lives.
Finally, even after receiving the kinds of services specified above, many people with hearing loss still need the continuing support of other people who are in similar circumstances. The astute audiologist will keep an open channel to a local chapter of Self Help for Hard of Hearing People, Inc. (SHHH) and make his/her clients aware of the potential contribution of this consumer support group.
Does everybody with a hearing loss require all of the above? Probably not. But we should begin with the clinical assumption that anybody who needs a hearing aid to improve communication functioning can benefit from most of them. The record in this regard is mixed; hearing aid dispensers have an uneven record in this regard (Stika and Ross, 2001). The key limitation is time - and how to find it. It takes time to listen to our clients and to deal with the communicative, as well as the psychosocial implications of a hearing loss. It takes time to conduct a group hearing aid orientation program. It takes time to evaluate the need for and to provide other types of hearing assistive technology. And it takes time, particularly for older people, to work through the fitting procedures until they reach the point that they are receiving the full benefits of hearing aid amplification. As we keep hearing over and over again, Time is Money: where do we do find the money to pay for the time?
Redefining the Hearing Aid Selection Procedure
The first thing we have to do, I believe, is change the way we think about the hearing aid dispensing process. We can't rediscover Camelot, the AR program that I experienced fifty years ago. Like the original Camelot, it has faded in the mists of time; an idealistic dream of perfection that we know can never be recalled. Still, as much as I personally enjoyed and benefited from the program, I do think much of it was overkill. When all this began during WW II, there must have been a great deal of insecurity about what newly deafened servicemen needed. The decision must have been to give them everything, growing out of a concern that otherwise some vital element would be omitted. We can't do "everything" nowadays; choices do have to be made. I do believe, however, that we can do a creditable job within the present system if we incorporate some of the lessons that the past can teach us.
The most important of these lessons is that we must conceptualize the selection and dispensing of hearing aids within a larger framework. While it may sound like a cliché, we do have to keep in mind that we are not working with a pair of ears but with the person to whom the ears are attached. We should view the hearing aid fitting as an opportunity to explore a number of hearing-related issues and to help the hearing-impaired person deal with them. We must, in brief, redefine the hearing aid selection process in a way that it routinely incorporates a multi-session group hearing aid orientation, or short-term AR, program (Ross, 1999). I hasten to point out that this is not an original concept by me; it has been recommended, written about, and practiced by many of our colleagues, many of whom are now attending this conference.
I do believe that such a program should not be optional, but simply be included as a routine component of the hearing aid dispensing process. For the same reason we would not think of fitting someone with a hearing aid unless a prior audiological evaluation was conducted, we should not fit hearing aids without an organized follow-up program. This is based on my assumption that the overwhelming majority of people acquiring hearing aids for the first time need the kind of services and information outlined above. By separating these services from the hearing aid itself, by referring only some of our hearing aid clients to an organized follow-up program, we send a message that only exceptional hearing aid users require and can benefit from such a program. On the contrary, I believe that we should send the opposite message, that a hearing aid, while certainly the centerpiece in the aural remediation effort, is only one of the tools that can be used to reduce the communicative and handicap impact of a hearing loss. What this implies is that the expenses of the short-term AR program be included in the cost of the hearing aids (Ross and Beck, 2001).
In summary, we tend to minimize the total impact of a hearing loss with our current management model. Most people can use and benefit from the additional services a short-term AR program can provide. Such a program can be most efficiently and conveniently included in association with the acquisition of hearing aids. In this respect, the lessons from the past are very clear. If we but "listen" to them.
Abrams, H. B. & Hnath-Chisolm, R. (2000). Outcome measures: The audiologic difference, in Audiology: Practice Management, Hosford-Dunn, Roseser & Valente (Eds.) 69-94, Thieme Medical Publishers Inc.: New York.
Abrahamson, J. (l997). Patient education and peer interaction to facilitate hearing aid adjustment. Hearing Review Supplement, 19-22.
American Academy of Audiology, '97 AAA Marketing Study, Audiology Today, 10(1), 10-14.
Kochkin, S. (1999). Paper delivered at the World of Hearing Conference, May 29, Brussels, Belgium.
Kochkin, S. (2000). MarkeTrak V: "Why my hearing aids are in the drawer": The consumer perspective. The Hearing Journal, 53(2) 34-42.
Kochkin, S. & Rogin, C. (2000). Quantifying the obvious: The impact of hearing instruments on quality of life. The Hearing Review, 7(1), 6-35.
Ross, M. (1999). Redefining the hearing aid selection process. Aural Rehabilitation and its instrumentation, Special Interest Division #7, American Speech-Language Hearing Association, 7(1), 3-7.
Ross, M. & Beck, D. (2001). Expensive Hearing Aids: Investing in technology and the audiologist's time, article in Audiology online, April 26.
Stika, C. (l997a). Living with hearing loss--Focus group results: Part I: Family relationships and social interaction. Hearing Loss, 18(5) 22-28.
Stika, C. (l997b). Living with hearing loss -- Focus group results: Part II: Career developments and work experiences. Hearing Loss, 18(6), 29-32.
Stika, C. (2001). Results of a hearing aid services and satisfaction questionnaire, First International Aural Rehabilitation Conference, Portland, Maine.
Strom, K. E. (2001). An Industry in transformation: Technology & consolidation lead the field into a new millennium. The Hearing Review, 8(3), 28-44, 87.