The “Real” Tinnitus Story: Lessons Learned About True Patient-Centered Care

IMG_3261Peter Hutchison, Class of 2016 

University of South Florida

When I hear the word tinnitus, my eyes widen and endorphins race to my brain. Ringing in the ears—one of the most common issues associated with any type of hearing loss— is the topic of research for my doctoral project. When I hear the words ringing, buzzing, whooshing, or pulsing my hyper focus kicks in and I say to myself, “This is my thing!” I have read article after article discussing statistics about who tinnitus affects, what might be the cause of this debilitating ringing, how it is measured in humans and animals, and the general lack of understanding in this subject.

And yet …  when I found myself face to face with a patient who was so deeply disturbed by her tinnitus that she was willing to request a nerve section, I realized that I did not know that much at all. What I realized I lacked was personal connection, empathy, and the counseling ability that I knew was going to be crucial to this case. Additionally, I realized how much I did not know regarding tinnitus and management in a clinical population. I learned two important lessons with this patient, the first being serving the patient and not just the condition. The second lesson was that sometimes there are things that are simply out of my control and my scope of knowledge.

Lesson #1

Providing patient-centered care is something that sounds appealing and makes sense, but often I find difficult to practice. When I see a moderate, sloping, high frequency hearing loss, I think about the hearing aid I will recommend at the end of the appointment. When a patient complains of dizziness upon getting out of bed, I consider BPPV. These initial thoughts are natural, and there is nothing wrong to start thinking about the issue at hand and the recommendation that I will make. The problem is that I often find myself stopping there. I forget to consider the needs and desires of that particular patient. I forget to consider the patient’s activity limitations, participation restrictions, and perceived or experienced stigma. I forget to consider the emotional journey that the patient has been on for much longer than the last 30 minutes that they have been in my sound booth.

tinnitus

I realized that I needed to practice better patient-centered care the day I first met the patient with the debilitating tinnitus. Tears poured from her eyes the entire appointment. I tried to offer knowledge, suggestions, and recommendations, but the tears would not stop. Upon reflecting on this appointment, I realized that I tried to provide informational counseling, when what she needed was emotional support (Ekberg et al, 2014). I tried to suggest technology and rehabilitation programs without developing a common ground with the patient.

At the end of the day, patients are autonomous beings, and they decide whether to follow our recommendations. Those decisions depend heavily on the partnerships we develop via counseling. And this approach is an evidence-based practice. Finding common ground has been shown to be a key to a successful clinical outcome. (Clark & English, 2014, p. 8)

It did not matter what I suggested at the moment. At the moment, my patient wanted support counseling. She wanted to know that we haven’t reached the end of the road. She wanted to know that the people she was looking to for help understood what she was going through, and that we weren’t going to just give up. She wanted to start a relationship of complete care and trust, instead of a regimen.

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“All I Did Was Listen”

Kris English, Ph.D.Kris English, PhD

The University of Akron

Matt White is an audiologist in the UK National Health Service, and works in Doncaster in South Yorkshire, England. He recently participated in a counseling course at the Ear Foundation in Nottingham, wherein he described the following patient encounter:

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Matt White, BSc(Hons) Aud

My patient was a man in his late 70’s who has had a rubbish time over recent years. Multiple organs are in failure, one kidney has also been removed for cancer treatment and he’s had other cancer issues too as well as issues like pancreatitis. His mobility is greatly compromised and he carries a “do not resuscitate” order with him as his physicians have told him that the efforts required to resuscitate him are likely to kill him, but in a much more horrible way than just going. He told me that his family is already grieving him in advance and he just can’t wait to be with his wife again, who passed away a few years ago.

I wasn’t sure at first what type of person he was going to be, some elderly people that I see in this condition have given up and just want to die. Others, like this gent are very positive and just want to get what they can out of the time they have left. This chap, for example, was off to get his cataracts done under local anaesthetic so he can see better. He talked about seeing the faces of his great-grandchildren more clearly. He talked about all this while explaining that he just wanted to hear as well as he could, which I was able to improve for him in the appt. Explaining all the non-hearing related parts of his life this seemed to help him.

All I did was listen.

 

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“All I Did” … But It’s Actually a Lot!

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Counsel Thyself– “Did I Really Say That?”

Jane FLJane Seaton

Seaton Consultants, Athens GA

A few years into my career as an educational audiologist, I was shocked to hear a mother whose child I had seen at 10 months of age tell a parent group how devastated she was to hear the audiologist say that her daughter would never talk. Assuming (incorrectly as it turned out) I was that audiologist, I was appalled to think I would have said anything that could possibly be interpreted this way. Reflecting back on my reaction then, I now realize how often our comments can be taken out of context or misinterpreted in stressful situations such as when parents first learn of their child’s hearing loss.

What Was Said / What Was Heard

Margolis (2004) reported approximately half of new information is forgotten immediately, and half of unfamiliar information is remembered incorrectly. Add in the increasing cultural diversity and non-native English speakers being seeing in all audiologic practice settings, and we have the perfect recipe for mis-communication.

It has been well documented that most children with congenital hearing loss are born to parents with typical hearing, and the vast majority of these parents have little or no prior exposure to or experience with deafness. To say that identification of hearing loss through the universal newborn hearing screening process is often unexpected, shocking and stressful for new parents is a huge understatement. In our eagerness to help families access state-of-the-art technology and services as quickly as possible, we may unintentionally compound parent confusion and stress by providing lots of new information in a short period of time at the end of a diagnostic appointment. Too frequently little time is left for questions or feedback concerning what parents have heard from the audiologist.

Reducing Misunderstandings

Parents report they need for us to take time to listen to them and encourage them to ask questions (Luterman and Kurtzer-White, 1999). However, when the diagnosis of hearing loss is unexpected, some parents may not feel emotionally ready or knowledgeable enough to ask questions until they’ve had time to process what has been heard. It can be helpful to encourage parents and caregivers to let you know how they are feeling prior to, during and after their initial diagnostic appointment. Asking a parent what they will tell a spouse or other family member about our results and recommendations is a strategy that can help us know what has been heard and what information needs repeating or re-explaining in nontechnical terms. Use of an interpreter for non-native English speakers can be helpful, but this also adds another link in the communication process where misunderstandings can occur (Alberg, 2003).

Helping parents clarify their “next step” (e.g., scheduling another appointment, talking with pediatrician, contacting their early intervention service coordinator) facilitates parent empowerment and should be automatic each time a family is seen. Providing names, job descriptions and reasons why other professionals in the EHDI and/or education systems may be contacting parents can lessen some of the confusion felt by families when starting their journey with hearing loss. I’ve often found that parents appreciate a brief phone call 2-3 days after we’ve met to find out how they’re doing and answer any questions, even when we have a follow-up appointment scheduled later.

Audiologists as Reflective Practitioners
reflection

I admit I was relieved to find out that I wasn’t the audiologist being referred to in the situation described above, but I often wonder how many times misunderstandings have occurred without my realizing it. Donald Schöen described the need for reflective practice more than 30 years ago, and it is probably more valuable than ever today (Scaife, 2010). Now that a wealth of information is available instantly from a variety of sources, the value of taking time to listen to ourselves as well as our clients and their caregivers is immeasurable.

References

Alberg, J. (2003). BEGINNINGS serves families with diverse needs. Volta Voices, 11, 15-17.

Luterman, D. & Kurtzer-White, E. (1999). Identifying hearing loss: Parents’ needs. American Journal of Audiology, 8, 13-18.

Margolis, R. (2004). Audiology information counseling: What do patients remember? Audiology Today, 16, 14-15.

Scaife, J. (2010). Supervising the reflective practitioner: An essential guide to theory and practice. London: Routledge.

When 1 on 1 just isn’t enough …

photoChelsea Twyman, Class of 2016

Kent State University / NOAC

When audiologists and patients discuss amplification, the topic of realistic expectations must be carefully discussed. This discussion lets the patient know that adjusting to amplification will take time, patience and effort, and that struggles might occur along the way.  Some patients have minor challenges that we can readily solve with programming adjustments.  Most patients can also acquire new communication and coping strategies, especially if we remember to provide that support.  However, how can we help patients who still struggle with the following challenges after their month-long hearing aid trial?

  • Not advancing to appropriate amplification target/not obtaining enough benefit;
  • Not tolerating high frequency input/not improving speech clarity;
  • Daily HA maintenance and/or using hearing assistive technology (HAT);
  • Psychosocial distress (perceived HA benefit but burdened by cosmetics, stigma, etc.);
  • The hard work of adjustment outweighing perceived benefit.

Patients struggling with these challenges could benefit from group support, defined by Katz and Bender (1976) as “voluntary small group structures for mutual aid in the accomplishment of a specific purpose…usually formed by peers who have come together for mutual assistance in satisfying a common need, overcoming a common handicap or life disrupting problem, and bringing about desired social and/or personal change” (cited by Solomon, 2004, p. 393).

Support groups can help not only patients but also their communication partners, since they too are directly affected:

Brooks et al (2001) described frequent misunderstandings and resulting frustrations in couples in whom one member had a hearing loss. Piercy and Piercy (2002) reported that limited communication can negatively affect a couple’s intimate relationship. Most recently, Scarinci et al (2008) noted a broad range of effects that hearing loss had on the SPs [spouses] in their everyday lives. They noted difficulties in carrying out normal conversations, effects on the SPs’ emotions such as frustration or embarrassment, limitations in their social lives, and increased tensions in their marital relationships. (Preminger & Meeks, 2010, p. 316)

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Trust, Catharsis, Change

PicsArt_1397486111881Chanel Rogers, Class of 2017

Kent State University / NOAC

This past February I had the opportunity to be involved in a hearing screening at a senior health center. I never imagined a hearing screening would provide me with as great of a life lesson as it did. I had the pleasure of meeting and screening a woman (“Ms. B”) who was around 65 years old. She reported interest in our screening program because she had been experiencing difficulties in many areas of life that require hearing, such as not following what was being said in one-on-one conversations, contributing to conversations in a group setting, and understanding song lyrics while attending church.

With all of the many listening challenges that Ms. B had described, I expected her results from the hearing screen to show that she had at least a moderate hearing loss, but that was not the case. The results that I collected showed a mild hearing loss with no frequency tested being greater than 35 dB, but it affected her greatly on an everyday basis.

Earning Trust

My preceptor and I summarized our brief test, relating the results to the troubles that she had mentioned.  She seemed to feel safe with us, because she then began to recount not just other hearing problems and her family’s frustrations, but other health and safety concerns and their impact on the quality of her life.  The more she shared (“This is the first time I’ve said this out loud”), the more she seemed to understand her resistance to help (“As they say, denial is not just a river in Egypt”). I believe Ms. B started to trust us (English & Kasewurm, 2012) and her trust showed through the emotions that she shared.

Ms. B began to cry and as more information came out, a revelation occurred to her. We silently marveled as Ms. B moved herself out of the state of denial, into acceptance. By the end of the screening, she was ready to make an appointment to discuss the options available to her for amplification and other assistive technologies.

Catharsis and Change

When she felt ready to leave, Ms. B put on her coat and while tying her belt, she said with some surprise and relief, “I feel better!”  Later, we reflected on that comment, indicative of catharsis.  When given the opportunity (i.e., given time, respect, compassion), patients may feel ready to unburden themselves of worries and fears. Once these are shared with a receptive listener, the speaker does not feel alone and defensive, but instead feels understood and supported (Stone et al., 2010).  The subsequent emotional relief changes how we view change: perceived barriers are no longer insurmountable, and options can be considered.

In this experience, I learned a very important lesson that I will carry with me throughout all of my future years of practice. That lesson is that, no matter what the hearing loss looks like on paper, it can affect each individual differently. Before this day, I did not think a mild hearing loss would have such a great impact on someone’s everyday life as it did with Ms. B. She helped me see firsthand that being in the healthcare field requires us to be compassionate and empathetic to the issues that the patient faces and also that just because the patients are in to see for a particular reason, there may be something deep down that has been suppressed that may come to light with their time with us.

This day made me realize that it is true that we must treat the whole patient and not just the hearing loss, which is an essential mental note I will carry with me forever.

References

English, K., & Kasewurm, G. (2012). Audiology and patient trust. Audiology Today, 24(2), 33-38.

Stone, D., Patton, B., & Heen, S. (2010). Difficult conversations: How to discuss what matters most. NY: Viking.

 

Supporting the Unsteady: Counselling in Vestibular Rehabilitation

Thumbnail picSimon Howe, BSc(Hons) MSc

Manchester Royal Infirmary and Manchester Balance Clinic

Rehabilitate (v):  To restore to good health or useful life

 As an Audiologist working for the National Health Service in the UK, it is my job to rehabilitate both patients with hearing loss and those with vestibular deficits. Whilst full recovery from vestibular deficits is likely, up to 2/3rds can become chronic, disabling conditions (Yardley & Luxon, 1994). As General Practitioners (GPs) tend only to refer those cases of dizziness persisting for months for a specialist opinion, the majority of patients seen in our Vestibular Rehabilitation Clinic at the Manchester Royal Infirmary have developed chronic dizziness; present for many months or years.

Many patients experiencing an acquired loss of vestibular function will recover fully without the need for any therapeutic intervention. So what causes some patients’ vestibular deficit to become a chronic balance problem? Firstly, the long-term prescription of vestibular sedatives by GPs is commonplace, and inhibits the natural process of recovery, and secondly, the natural behaviour for motion-provoked or situation-specific dizziness is to avoid the movements or environments which elicit the symptoms, again hampering recovery. Often these avoidance strategies can result in almost phobic thoughts related to these triggers of the dizziness.

Exercise-based vestibular rehabilitation is the primary therapeutic approach for such patients, focusing on promoting central compensation for the acquired vestibular deficit. The application and benefits of vestibular rehabilitation are well documented (Hillier & McDonnell, 2011). However, the more I work with patients with chronic balance problems, the more I find myself increasingly perplexed by their unpredictable prognosis. Three things strike me as unexplained:

  1. Some patients struggle to make any meaningful progress with vestibular rehabilitation, despite apparently adhering to their exercise programme.
  2. The time taken for patients to recover seems to be completely independent of the degree of vestibular deficit.
  3. Attendance at rehabilitation appointments and adherence to exercise programmes is inconsistent, even if the patient’s difficulties would appear to act as sufficient motivation.

Reassuringly, it appears I am not alone in seeing this variability (Herdman et al, 2012), therefore there are clearly other factors at play which are influencing recovery. But there is a piece missing from the puzzle; something still unaccounted for in all the research thus far.

The Missing Piece10184297_s

Chronic balance disorders can be functionally limiting conditions because of our reliance on balance to fulfil the most basic of personal, household, and occupational responsibilities. Difficulties in performing these tasks can increase dependence on family and friends, and can place strain on relationships. Where such a support network is not readily available, the resulting social isolation can have profound emotional effects. Reduced activity levels can also lead to an increased incidence of co-morbid conditions which can in turn exacerbate the psychological impact. Some chronic balance disorders can also be unpredictable in the frequency and severity of their presentation and this can further increase emotional stress.

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Mistakes I’ve Made: Assumptions

eileen-rallEileen Rall, AuD

The Children’s Hospital of Philadelphia

So why am I sharing with you some of the mistakes I’ve made along the way? Usually when I am sharing “life lessons” with my daughters or my students, I am trying to give them the opportunity to learn from my stumbles so they don’t have to experience them on their own. One of the most important skills we can have as professionals (and as human beings) is the ability to recognize when we can do something better or even more importantly, when we do something wrong. Maya Angelou’s quote, “When you know better, you do better” is something I try to live by every day.  This philosophy is one of the reasons why I love where I work. At CHOP, we are constantly re-evaluating our clinical practice to identify areas where we can be better – what a humbling and yet exciting place to be. To do that well, you have to practice reflectively (Schön, 1983; Thompson, 2008) and be ready to say that the things we do every day can be better.

One of the areas that I feel I have grown the most in is my avoidance of making assumptions. When you first start out in this field, you are (as I was) unconsciously incompetent – you don’t know what you don’t know. I remember trying to soothe a parent’s anxiety when scheduling her child’s surgical procedure by telling her, “Don’t worry, it is a really simple procedure, they’ve done it thousands of times.”  I assumed that if she understood the routine nature of the surgery, her anxiety would vanish.  It did not; instead, she very sternly said to me “Don’t ever tell a parent that their child’s surgery is simple and ‘nothing to worry about.’ You clearly don’t know what it is like to be a parent.”  She was right, I didn’t know. I assumed that I could put myself in her place and comfort her; instead, I ended up offending her. Flash forward 8 years to me anxiously sitting outside the OR when my youngest was having this same “simple” procedure – it was the longest 14 minutes of my life and I would have bitten off anyone’s head who dared to tell how I should feel.

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Assumption: All Swans are White

Sometimes we assume we know how someone will feel about information they receive. I was leading a lab in amplification.  We brought in a friend of mine who had clearly been suffering with hearing loss for a few years.  She was even evaluated by an audiologist the year before and hearing aids were recommended but not fit.  The students were responsible for doing a complete evaluation and then develop a treatment plan that would include amplification.  She did indeed have a hearing loss so the students launched into what hearing aid that they were going to get her instead of reviewing her test results. They assumed that, because she reported that she had been previously diagnosed with hearing loss and hearing aids were recommended, she understood her diagnosis. She did not. I watched her eyes glaze over as the students enthusiastically described the advanced-feature hearing aid they were going to order.

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Counseling and Health Literacy

Kris English, Ph.D. Kris English, PhD

The University of Akron/NOAC

Audiologic counseling has many facets, including patient education (Clark & English, 2014). Patient education is not inherently easy: every audiologist has had those moments when we realize our patient doesn’t understand us.  Sometimes the patient is emotionally distraught and cannot concentrate, and sometimes we unintentionally provide more information than the patient-as-learner can process.

Another variable to consider is the patient’s health literacy. In addition to reading abilities, health literacy as measured by the National Assessment of Adult Literacy (NAAL)(2006) includes the ability to interpret graphs, do basic calculations (numeracy skills), and use a computer.  We cannot take any patient’s health literacy for granted; in fact, the NAAL reports that more than 1/3 of adults in the United States (77 million) have limited (basic and below basic) health literacy skills (see figure below).  Persons at basic/below basic literacy levels are not able to read or fully understand a newspaper article, fill out forms for Social Security, Medicaid or Medicare, or follow a bus schedule or calendar (Weiss, 2007).  Relatedly, low health literacy is linked to more mistakes in medication usage, more emergency room visits and hospitalizations, and a higher risk of death. Relevant to audiology, it could mean misunderstanding instructions for hearing aid use, misinterpreting Internet sites about cochlear implant candidacy or auditory processing problems, or an inability to complete scales/questionnaires or provide a medical history.

Source: National Assessment of Adult Literacy

 HL_OverallHealth literacy skills are affected by age, education, income, health insurance status, and first language acquisition.  But as Weiss (2007) warns us, “You can’t tell by looking” (p. 16).

Health literacy is a topic of high interest these days because health-related information continues to grow in complexity. This article has two parts: defining health literacy, and suggestions for audiologists on how to address health literacy concerns in their patient care.

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When Hearing Aids Are Not the Answer

 Yopa - pictureNicolle Yopa, Class of 2015

 Kent State University/ NOAC

Last year I was presented with an unexpected counseling challenge. My patient was a high functioning 21-year-old male with Down Syndrome (“John”), who had a bilateral mild-to-moderate mixed hearing loss. John was enrolled in college classes, and was being evaluated because his hearing impairment was affecting his ability to follow along in large lecture halls. He was also about to move to campus and live independently, so it was more important than ever that his hearing impairment be treated.

John received much support and encouragement from his father to proceed with amplification. The father attended every appointment with John, including the hearing aid evaluation.  We recommended RITE hearing aids with custom molds, as John would likely have difficulty inserting a dome in his ears due to dexterity issues. The father agreed and chose to proceed with the fitting. The next day, however, the father called the clinic; when he discussed our recommendations with his wife, she requested we change the custom molds to an open dome for cosmetic reasons. My supervisor explained that we could fulfill that request, but that John would have to display successful insertion of the hearing aids before we could let him leave with them. Privately, my supervisor worried that fitting John with domes would set him up for failure.

Worries Confirmed

Both John’s mother and father accompanied him at the hearing aid fitting. This is when we learned that the family was not in complete agreement with our recommended plan of treatment. Unlike the previous appointment, John now wanted nothing to do with the hearing aids and even cried after experiencing difficulty with inserting the dome tips. Despite his difficulties, his mother opposed switching to custom molds. Her main concern was that the hearing aids could be seen from behind. This concern in turn became John’s main concern and he showed much discomfort in wearing them. His mother stood her ground when we wanted John to keep practicing. She told us that they were “educated people who could help John at home.”  For reasons unknown, family and audiologists were not sharing the same goal: to confirm John could manage this task on his own.

The appointment was scheduled for one hour, but the mother cut us off at 30 minutes because John had class. We told her that we planned on wallclock1an hour because many important things needed to be discussed; regardless, they opted to cut the appointment short so that John could make the last 20 minutes of class. My supervisor reluctantly agreed to let John leave with the hearing aids and have his parents practice with him at home.

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Sudden Patient-Audiologist Terminations and the Effect on the Patient

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Alison Marinelli, Class of 2018 (AuD/PhD)

The University of Connecticut

Ideally, patients form bonds with their audiologists because of the unique role in caring for them and their devices. Repeated positive interactions allow for greater relationships to develop. As a patient, I’ve had the pleasure of working with several talented audiologists over the years and have had a variety of experiences. Now that I’m in graduate school for audiology, I can’t help but use the academic material that I’m learning to take an analytical eye to my own audiologic experiences and evaluate them more thoroughly. A particular experience that was critical to my young life was the tragic death of my beloved audiologist, Dr. Toni Maxon.

Bonding ….

Toni was one of the first audiologists that my parents consulted after my diagnosis of hearing loss at nine months. My parents were seeking all possible avenues to treat my hearing loss, and were exploring the auditory verbal path when they visited her at the University of Connecticut Speech Language and Clinic. I don’t remember these early days, but it was always obvious to me that Toni’s empathetic counseling assisted my parents with the coping process associated with the diagnosis.

My father affectionately recalls the time when my parents were discussing amplification options and I was eating crackers, babbling to my parents about the toys I was playing with nearby. Toni gently pointed out to my parents how desperately I was attempting to communicate, and that the limited language I was producing was due to the limited inputs I was receiving. The kind manner with which she delivered the information touched my parents and started a very close working relationship that carried on throughout all future Toni Maxon (2)treatment. When Toni left the UCONN clinic to start the New England Center for Hearing (NECHEAR) with Dr. Diane Brackett, I continued services with her there. My parents and I looked forward to appointments and we continued our sessions with respect for her knowledge and appreciation of her superior services. As she had the ability to impart life experience, give advice, inquire and be truly interested in our family as time marched on, we valued her more and more.

                              Dr. Antonia Maxon

 

….And Then Loss

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