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Special Theme: Medical Education in the Ambulatory Setting: ARTICLES

Communication with Deaf and Hard‐of‐hearing People: A Guide for Medical Education

Barnett, Steven MD

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Author Information

Dr. Barnett is assistant professor, Department of Family Medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York.

Correspondence and requests for reprints should be addressed to Dr. Barnett, Family Medicine Center, 885 South Avenue, Rochester, NY 14620; e-mail: 〈Steven_Barnett@URMC.Rochester.edu〉.

The author thanks the members of the writing seminar at the University of Rochester Family Medicine Center for their encouragement and feedback on early versions of the manuscript.

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Abstract

Some physicians may be insufficiently prepared to work with the many patients who have hearing loss. People with hearing loss constitute approximately 9% of the U.S. population, and the prevalence is increasing. Patients with hearing loss and their physicians report communication difficulties; physicians also report feeling less comfortable with these patients. Although communication with patients plays a major role in determining diagnoses and management, little attention is given to teaching medical students and residents the skills necessary to facilitate communication when hearing loss is involved. The need for these skills will increase with the expected rise in the number of such patients. The author presents the rationale for including information about hearing loss in curricula on patient—doctor communication, and suggests curricular content, including background regarding hearing loss and techniques that can enhance the physician's ability to listen to (that is, “hear”) and learn about the stories of these patients.

Although medical education should prepare physicians for the common issues they will face in practice, medical school and residency curricula do not adequately teach the communication skills necessary to work with the many people (patients or their caregivers) with hearing loss. Hearing loss is the sixth most common chronic condition in the United States1 and affects a large and growing segment of the population (9% of the general population2; 24% of elderly residents of longterm care facilities3). People with hearing loss report worse health status than the general population.4,5 Research suggests that some people with hearing loss see doctors more frequently than do people with normal hearing,4–8 but deaf people who use sign language see doctors less often.5 In terms of health knowledge9,10 and mammography,5 the health needs of people with hearing loss are underserved. Because of limited access to health information, people with hearing loss are often unable to make truly informed health care decisions for themselves and their families.11 Since the passage of the Americans with Disabilities Act of 1990 (ADA), physicians may have more contact with people with hearing loss, who now have better access to the health care system as patients, as well as better access to careers in the health professions.

The prevalence of hearing loss is greater than that of heart disease, asthma, or diabetes,1 diseases that are well covered in our medical curricula. Just as diabetes is an impairment that affects glucose metabolism, hearing loss is an impairment that affects communication. Communication is an important tool for physicians in diagnosing a patient's illness12 and developing the patient—physician relationship.13 Physicians report discomfort when working with patients with hearing loss,14 and this may reflect the lack of education in how to adjust communication skills when working with such patients. Patients with hearing loss7,10,15–18 and physicians14,19 report difficulties with health care communication. “Effective communication” in hospitals and physicians' offices is mandated by the ADA,20 and the number of ADA-related lawsuits brought against physicians and hospitals involving communication issues seems to be increasing.21 As teachers we are obligated to give our students the tools they will need as practicing physicians; included with those tools should be the knowledge and skill to effectively communicate with people with hearing loss.

Little has been written about teaching medical students and residents how to communicate with people with hearing loss.13,22–24 Scant literature also exists on teaching about the psychosocial aspects of hearing loss.22–27 It is important that medical students and residents be taught to recognize different communication preferences associated with hearing loss, and to appreciate the psychosocial experiences of people who are deaf or hard of hearing. This will help patients to tell their stories, which in turn may improve the quality of their health care, decrease the mutual frustration in these encounters, and reduce the discomfort physicians feel when working with these patients. This article outlines many pertinent communication and sociocultural issues to address when teaching medical students and residents about the patient—doctor factors that come into play when interviewing people who are deaf or hard of hearing.

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PEOPLE WITH HEARING LOSS

Successful communication strategies in a patient encounter depend on characteristics of the individuals involved and the environment in which the communication occurs. Knowledge of some general guidelines helps optimize communication. In terms of communication needs, people with hearing loss can be divided into three categories: (1) hard-of-hearing people, (2) deaf people who communicate orally, and (3) deaf people who communicate primarily using sign language. Lists 1, 2, and 3 present guidelines for learners when interviewing each type of patient.

List 1
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List 2
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List 3
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Hard-of-hearing people can be defined as those with hearing loss who can still derive some linguistically useful information from speech. In contrast, deaf people receive no useful linguistic information from sound. The communication strategies that will work with a deaf patient depend on that patient's education, background, and primary language.

For many deaf people, particularly those who were deafened before age 3 (prelingually), sign language is their primary means of communication. Some deaf people communicate orally, using visual information, including lip movements, to help them understand what is being said. Although speech reading is mostly guesswork, some people are very skilled. Deaf people who communicate orally usually fit into one of two categories: late-deafened adults and orally educated deaf people.

Late-deafened adults often have had the opportunity to adjust their communication strategies slowly to their progressive hearing losses. Having heard and spoken a language in the past makes communication in that language easier than it is for people deafened earlier in life. Orally educated deaf people have usually been deafened in childhood and may have attended schools that emphasized speech reading and speaking skills.

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PHYSICIANS' COMMUNICATION SKILLS

The key to successful communication with people with hearing loss is the ability to adapt to the needs of the situation. People with hearing loss often have good suggestions on how to best communicate with them, and it is important to enlist their help. The background and suggestions that follow may help students and physicians work more effectively with people with hearing loss.

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Setting the Stage for the Interview

The usual courtesies involved in setting the stage for the interview13,28 may need to be adjusted for the patient's hearing loss. When entering a room, remember that the patient may not have heard the knock at the door; consider leaving the door open while the patient with hearing loss waits for the physician, or opening the door slowly and making eye contact before entering. These steps may help ensure the patient's readiness, sense of privacy, and comfort, as well as enhance his or her feeling welcome. Also realize that deaf patients cannot “hear” you if they cannot see you or the interpreter; awareness of this fact can limit the impact of communication barriers. During the physical examination, establish eye contact before touching the deaf patient to help ensure the patient's readiness.

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Spoken Communication

When speaking, the communication challenge is for the interviewer to be understood by the deaf or hard-of-hearing patient. Some information regarding hearing loss can be helpful in developing strategies to improve communication. Hearing loss is not simply a lowering of sound volume across all sound-wave frequencies. The volume needed to hear a certain sound, called a “threshold,” will vary with each sound-wave frequency, or pitch, because each different pitch may have a different threshold. Hearing loss in old age typically affects higher pitch sounds first; using a deeper voice when interviewing a hard-of-hearing older patient is sometimes helpful. Increasing voice volume is often less useful and may distort sound. Simple amplification devices, such as microphones and stethoscopes, will increase sound volume for every sound pitch. This can be helpful for those sounds that are difficult to hear, but can cause discomfort for a hard-of-hearing person when the sound being amplified has a pitch that is easier for that person to hear (i.e., has a lower threshold).

The amount of information a hard-of-hearing person derives from speech depends on the severity of his or her hearing loss and the sound frequencies involved. For each person, certain word sounds (phonemes) are easier to understand, and others are ambiguous or absent. Background noise should be kept to a minimum, since it can interfere with the ability to understand speech. Because of the limited information received auditorially, there is an increased reliance on visual information, including lip movements and non-verbal cues. Special attention to these visual needs can enhance communication with hard-of-hearing and deaf people. The interviewer's face should be well lit; a light source behind the interviewer will hinder communication by putting the interviewer's face in shadows and causing the patient's pupils to constrict. The interviewer should look directly at the patient when speaking, and be sure the patient is ready to watch and listen by making eye contact before speaking. No need exists to exaggerate words—this often makes speech reading more difficult. The interviewer should avoid obscuring his or her face and lips with hands, facial hair, and objects, such as pens, medical charts, and surgical masks.

Speech reading is a difficult skill to develop and is even more challenging for someone who has never heard spoken language. With English, many sounds are formed behind the lips, in the throat and mouth, making them indistinguishable on the lips. Without sound, at best only 30% of English is readable on the lips19,29; the rest is guesswork. Whatever sounds are heard can help with the guesswork. Knowing the topic may make the guessing easier, so the interviewer should explicitly state the topic first. Repeating phrases using different words is sometimes helpful. Having the patient periodically summarize what the interviewer has said may help ensure good communication.

With hard-of-hearing people, it is sometimes helpful to augment sound using assistive listening devices. If a patient uses hearing aids and they are available, their use should be encouraged. An inexpensive device found in some hospitals and doctors' offices is a one-to-one communicator. With this device, the interviewer speaks into a microphone connected to an amplifier that has attached earphones to be worn by the patient. Allowing patients to adjust the sound volume themselves can minimize amplification discomfort.

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Listening

Another potential communication challenge for the interviewer is to understand the speech of a person who was deafened early in life. Speaking a language, like speech reading, is more difficult for someone who has never heard that language spoken.

For hearing people to speak words that others will understand, they unknowingly listen to their own voices and continually correct pronunciation, pitch, volume, and modulation. Deaf people are unable to do that for themselves. The interviewer's ability to understand the deaf patient's speech may depend on many factors, for example, whether the patient ever had hearing, for how long, and how long ago. Other factors include the interviewer's experience working with and listening to deaf people as well as his or her experience with the particular deaf person being interviewed. A common misconception is that people who can speak well can also hear well.

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Written Communication

It may be necessary to use written English to communicate with some patients with hearing loss. For hard-of-hearing people, and for deaf people who communicate orally, English is often their primary language. Written English can be useful during the medical interview for communicating with these patients. However, it is important to remember that, for complex reasons, the average reading level of the deaf population is lower than that of the general population.30 In addition, older adults often have varying degrees of visual impairments and arthritis, which may affect the ability to read and write. Writing in large print with a felt-tip marker may help minimize the inconvenience and maximize the clarity of communication through writing.

The use of note writing, although sometimes appealing during frustrating encounters, may not be helpful with all deaf patients. For deaf people who communicate using a sign language, English may not be their primary language. American Sign Language (ASL) has a different grammar and vocabulary than English; thus a deaf person born in the United States may be fluent in ASL and not English. Writing notes in English to communicate with someone whose principal language is ASL has been compared to writing notes in English to non—English-speaking immigrants.10

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Signed Communication and Working with Interpreters

Although ASL is the language of a large minority, its use has not been counted by the U.S. Census Bureau. American Sign Language may be the third most commonly used language in the United States, after English and Spanish.29 In general, guidelines for cross-cultural medical encounters will be helpful in the medical interview with a deaf person who communicates primarily in ASL. One such guideline is to avoid having family members work as interpreters,31,32 because information obtained through them is necessarily biased. Working with certified sign language interpreters is more useful when eliciting the patient's story. However, sometimes having an additional person in the room acting as an interpreter feels awkward for the interviewer. The interpreter and the patient can best determine the arrangement of people for the interview. Usually the interpreter sits to the side and slightly behind the interviewer, so the patient can watch the interviewer and the interpreter simultaneously. For family meetings or other larger groups, it is best to leave the seating arrangement up to the deaf people and the interpreters. To understand the interviewer, the deaf person will need to look at the interpreter, but the interviewer should maintain eye contact with the deaf patient and not the interpreter.

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Cross-cultural and Nonverbal Communication

Deaf people who use ASL comprise a cultural minority group in the United States.23 A deaf patient and his or her hearing physician may have different values and these differences, if unrecognized, may lead to misunderstandings or conflict.23,33 Different interpretations of nonverbal gestures, such as body posture, facial expression, and touch, can also lead to misunderstandings.23,34,35 Even differing expectations about normal conversation structure may be a source of confusion.34,35

Being aware that cultural differences exist is the first step in avoiding misunderstandings.

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HEARING LOSS IN CONTEXT

To better understand the patient's story, the physician should be aware of aspects of the patient's life experience. Several important contextual issues are described below.

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Denial and Frustration

A common challenge for physicians when communicating with late-deafened adults is the patient's denial of the severity of the hearing loss. Communication without assistive devices, or when assistive devices are not useful, is often frustrating for everyone involved. Explicitly naming the frustration may help the interviewer connect with the patient, as well as facilitate the patient's talking about frustration in other relationships. For the person with severe hearing loss, frustrating communication is often the norm.

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Family Issues

Frustrating communication in the doctor's office often mirrors communication elsewhere in patients' lives, including the home. For families with members who have recent-onset or progressive hearing loss, changing established family communication patterns can be stressful, resulting in more frequent visits to the doctor. Late-deafened adults may feel isolated and depressed, being left out of family conversations at home and less able to communicate with family members through the telephone. Their families, too, may mourn the loss of easy communication. Families with both deaf and hearing children may struggle to find optimal family communication that will include all family members. Deaf parents who communicate in ASL may be angered by some people's expectations that their hearing ASL-fluent children act as interpreters. Learning the family context can help the physician gain a better understanding of the patient's story.

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Attitudes and Communication

People with hearing loss sometimes feel “blamed” for what some perceive as the additional effort for good communication. It is important to try to help patients not feel this way with their physicians. Physicians routinely adjust their interview styles to better elicit patients' stories, and through these adaptations help themselves and their patients by facilitating communication. Similarly, communication with people who are deaf or hard of hearing requires that physicians adjust their interview styles. These adaptations are made for better communication, and not for the person with hearing loss. When describing these adaptations, the physician should be sensitive to how word choice may perpetuate attitudes and beliefs that accommodations are being made for the person with hearing loss.

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Sociocultural Experience

For deaf people who communicate primarily in a sign language, socializing with others who sign can limit the amount of frustration in communication. Just as people fluent primarily in English often socialize with other English users, people fluent primarily in ASL often socialize and partner with other ASL users. As members of a linguistic minority group, deaf people who use ASL often have different sociocultural norms and beliefs when compared with people from mainstream American culture. Deaf people who consider themselves part of “Deaf culture” do not consider themselves defective or impaired. Most do not want to become hearing,36,37 a fact that often surprises hearing people. Working with members of the local Deaf community is one way for medical students and residents to learn about culturally sensitive and competent health care.23,27

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Prior Medical Experiences

Many deaf people report negative experiences with the health care system. Some of the stories involve childhood experiences of misdiagnosis related to hearing loss, such as developmental delay or attention deficit disorder. Some stories involve the common medical belief that deafness should be “fixed.” Others report experiences of fear related to poor or absent communication with medical providers, particularly during hospitalizations and medical procedures. Some deaf people feel that health care workers are afraid of and uncomfortable working with them, and they worry that they are offered substandard health care choices because of their deafness.18 Knowledge of and sensitivity to these past experiences can help when forming a relationship and eliciting the patient's story.

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Health Knowledge

Health-related knowledge is often limited in prelingually deafened adults. Information considered basic health knowledge in the general population may be lacking in some deaf adults. Overheard conversations or radio or television announcements are not available for them. If English is their second language, written information may also be of limited benefit. As children, conversations between their parents and their physicians were not overheard. As a result, they may not know answers to questions related to family medical history, or even that this particular information is important to the physician. Many hearing parents of deaf children do not learn sign language. Because of limited intra-family communication, a deaf adult may not know anything about a parent's health. From the perspective of information gathering and patients' education, awareness of this potential health-related knowledge deficit is helpful when working with deaf patients. When the deaf patient is a child, the physician should make sure that communication between physician and parents is accessible to the child.

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RECOMMENDATIONS

People with hearing loss, like all patients, have interesting stories to tell. By listening to these stories, physicians will be able to improve the health and health care of patients with hearing loss. As the prevalence of hearing loss increases, medical educators have the challenge to ensure that physicians are adequately prepared to work in their future practices. With the appropriate skills, our students may be able to avoid the frustration and discomfort reported by patients with hearing loss and their physicians.

To be sure that graduates have the necessary skills to communicate with people who are deaf or hard of hearing, we should first assess our curricula to ensure that these skills are explicitly taught. If deficiencies are identified, the planning of curricular additions should include input from faculty, patients, and students with hearing loss. Information about working with people with hearing loss should be included in courses that teach doctor—patient communication skills, and simulated patient encounters should include scenarios that have patients and family members who are deaf or hard of hearing. Addressing hearing loss and communication issues during all clinical rotations can help stimulate learners to think about hearing loss beyond otolaryngology: How does a psychiatrist not fluent in ASL assess disordered language in a deaf patient who uses ASL? How can mask-wearing obstetricians, anesthesiologists, and other operating room personnel communicate during a cesarean delivery with a woman with hearing loss who speech reads? How might a deaf woman's anxiety or blood pressure be affected by her waiting room experience if she must simultaneously watch her children and the office staff so that she can see when her name is called?

To help gauge the effectiveness of our teaching, outcomes should be measured, including patients' and physicians' satisfaction. Research on health services use by people with hearing loss can also help us measure our impact; researchers will need to collect data about ASL use and severity of hearing loss. Medical school, residency, and continuing medical education curricula should be adjusted based on these research findings.

Patients are not alone in experiencing hearing loss. Physicians experience it as well, and this can interfere with patient—doctor communication. Physicians who have lost their hearing before medical training have already developed communication skills that take into account their levels of hearing,38 but those who begin to experience it during their professional careers will need to develop new strategies for interviewing patients and other professional skills. For them, amplified or visual stethoscopes and vibrating pagers can help with some aspects of the job; however, strategies for patient—doctor communication may be more challenging to develop.

A support group of peers facing similar issues can be an important component of healthy development of new job skills for the physician with hearing loss. In addition to developing new skills, physicians may struggle with what to tell their patients about their hearing. The decisions of physicians with hearing loss regarding self-disclosure to patients are similar to those of physicians with other medical or personal changes in their lives. Self-disclosure is an individual decision; consultation and support from colleagues and family may help. One way to professionally support physicians with hearing loss is to ensure that continuing medical education curricula are accessible.

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REFERENCES

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