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She Won't Look at Me
- Michael Lotke, MD
- From the Robert Wood Johnson Clinical Scholar Program, Stanford University, Stanford, California. Requests for Reprints: Michael Lotke, MD, Mount Sinai Hospital Medical Center, Department of Pediatrics, OS451, California Avenue at 15th Street, Chicago, IL 60608-1797.
Abstract
Early-onset hearing impairment is a common disability in the United States. Persons with hearing loss, whether they use American Sign Language or lip-read, must look at those with whom they are speaking. Lip reading is not a reliable method of communication for most deaf persons. Reading and writing also limit the amount of communication between health care providers and deaf patients. The best way to communicate with most deaf persons is through a qualified American Sign Language interpreter. This paper discusses communication with deaf persons and ways in which health care providers and hospitals can improve their interactions with deaf patients.
As a resident, I was asked to “consult” on a case involving a 7-year-old boy. He was previously healthy until he began to experience progressive neurologic decline. Childhood-onset adrenal leukodystrophy was eventually diagnosed. Of great concern was that his deaf mother seemed negligent in complying with medical care for him. I was consulted because I am fluent in American Sign Language (ASL) and because many of the staff knew of my interest in working with deaf persons.
Social Services was mobilized for child protection, and a social worker assigned to the case. A meeting was arranged that included representatives from the social work, pediatrics, neurology, and metabolism departments and members of the family. The meeting was led by the supervisor of the child's social worker. This supervisor oversees many cases involving deaf persons, but she does not know ASL. I attended this meeting strictly as an ASL interpreter. All participants were seated in a large circle. The social work supervisor, the deaf mother, and I formed a triangle from our positions within the group, an arrangement optimal for interpreting in this setting. After 20 minutes of discussion, the supervisor interrupted the conference and said, “We can't go any further. She (the mother) won't look at me.” In my role as interpreter, it was appropriate to interject only briefly, “She needs to look at me in order to understand you.”
The social work supervisor had not realized that the deaf person must watch the interpreter at almost all times to best understand the content of the meeting. Unfortunately, this story is not unique.
Deafness
Definition
The categories “deaf” and “hearing-impaired” are not discrete divisions. They represent a continuum of inability to hear, analogous to visual impairment. With some loss of visual acuity, a person “just needs glasses”; those needing a stronger prescription might be labeled “visually impaired.” As vision deteriorates, some are categorized as “legally blind” (those using very thick glasses but no cane or other assist devices). The last term, “blind,” includes some persons with light perception and others who live in complete darkness. Similarly, some deaf persons hear many sounds; others live in complete silence. Both the frequency and level of hearing loss affect a deaf person's perception of sound. This is similar to someone with red-green color blindness and a loss of visual acuity. Most conversational speech occurs between 30 and 50 dB and between 250 and 2500 Hz. A telephone rings at about 80 to 90 dB and at 2000 to 4000 Hz. More important than the hearing loss described by an audiogram is a person's ability to comprehend speech. Two persons with identical audiograms may understand speech differently depending on each one's ability to piece together the perceived sounds into words with meaning. Finally, the level at which a person identifies his or her disability is as important as the medical description of the loss itself (for example, 20/200 for vision or a 60-dB BEA [Better Ear Average] loss of more than 1000 Hz for hearing). Some persons are almost incapacitated by a certain visual or hearing loss, whereas others with the same loss remain functional.
Epidemiology
Deafness has been reported to be a “low-prevalence disability with about 200 cases per 100 000 persons in the general American population” [1]. This may be the reason that some physicians seem not to understand deafness much better than the general public. But this “low prevalence” should be compared with that of other medical conditions. In 1991, the prevalence of lung cancer was approximately 65 per 100 000 persons; for all cancers combined, the prevalence was 448 per 100 000 persons. Among children, the prevalence of a seizure disorder is 500 per 100 000 persons; spina bifida occurs in 100 per 100 000 persons. Because these diseases are part of most physicians' fund of knowledge, deafness should be too. (The prevalence of hearing loss in the elderly is more than 400 per 100 000 persons older than age 75 years.)
Every year, 1 in 1000 children is born with severe to profound hearing loss, and 4 to 5 children per 1000 have a hearing impairment significant enough to affect language acquisition. Of those with congenital or prevocational deafness, a few will learn to communicate verbally with appropriate hearing aids and training. Most will use ASL as the primary form of communication. The best way to communicate successfully with these persons is using ASL through a trained sign language interpreter.
Communication
American Sign Language
American Sign Language is the third most used language in the United States after English and Spanish. Although the next largest immigrant group consists of persons of Asian or Pacific Island descent, these persons may speak one of more than a dozen languages; no single Asian language is used as much as ASL.
American Sign Language has a vocabulary and grammar of its own just as Spanish, German, or Japanese does. It is not spoken English encoded for visual perception, nor is it simply words spelled with the fingers (Figure 1). Therefore, like any other person using a second language, deaf persons are prone to making errors in spelling and grammar when writing in English. This may lead to misunderstandings. A study comparing immigrants using English as a second language and deaf persons found that these groups had a “similar inability to understand common medical words” [2]. The investigators of this study also noted that “immigrants are not expected to read lips or to read a note written in English, nor is it assumed that they are mentally retarded if incapable of composing grammatically correct written questions in English. Yet these are the expectations and assumptions made by many health care workers regarding deaf patients” [2].
For deaf persons who are comfortable with English grammar, writing is time-consuming and therefore inhibits facile communication.
Lip Reading
Lip reading is a skill that most congenitally deaf persons cannot acquire adequately for communication in most of their daily interactions. In English, many phonemes are produced identically on the lips (f and v, t-d,/k/-/g/, p-b-m, almost 50% of the consonant sounds). A lip reader must also attempt to determine where one word ends and the next begins. This phenomenon is familiar to that occurring with hearing persons learning a foreign language. “They all speak too fast,” is a common lamentation among novices. “They” speak no faster than we speak English, but “they” process the continual string of sounds more quickly than we can. The average profoundly deaf lip reader understands approximately one third of what is said to him or her under optimal conditions. Accents, speech impediments, mustaches, fingers, pencils, dim lighting, bright background light (causing silhouetting), distance, and situations involving more than one or two other persons all further impair lip-reading abilities. More importantly, the ability to lip-read is enhanced by small increments of hearing ability. Persons with less hearing impairment generally have better success at lip reading because parts of sound that are heard can be used to supplement what is visible on the lips. Hearing persons do this whenever they are in a noisy environment. When a flight attendant on an airplane asks what beverage you would like, do not shout but say quietly, “Diet Coke.” You usually will get what you requested because the limited possible responses and the brevity of the response make this possible. Ask for “a martini, dry, with a twist, and a Lowenbrau chaser,” and you may need to speak more loudly. People who lose their hearing over time can better supplement their losses with lip reading because they already know the spoken language, and their lip-reading skills improve gradually as their hearing becomes less reliable.
What To Do
Interpreters
Most physicians would like to communicate well with deaf persons and may realize that pen and paper are not adequate. Yet, even in hospitals, a qualified sign language interpreter is difficult to find. Of six hospitals affiliated with my medical school, only one had a telephone number for professional ASL interpreting services (accessible only during business hours), and much of the hospital staff was unaware of its existence. Although the hospitals did have lists of employees who speak other languages, only two hospitals listed persons familiar with ASL; no hospital assured competency in any language. Most of the persons listed foreign languages are native speakers of the language. However, most of the persons listed for ASL are not members of deaf households; many have not taken more than a semester or two of sign language classes at a local evening school program. Hospitals would not routinely accept that level of language skill for Spanish translators.
The Americans with Disabilities Act requires that a sign language interpreter be provided at medical encounters whenever requested by a deaf patient. The Registry of Interpreters for the Deaf trains its members for both proficiency and ethics. Hospitals and offices could have a list of qualified ASL interpreters or the telephone number of a local organization that can provide interpreter services. This should be arranged before scheduled visits or when the deaf person presents for emergency services if he or she so requests. In emergencies, a person who works at the hospital and knows ASL might help obtain some basic information and provide comfort while waiting for an interpreter. Qualified interpreters provide simultaneous interpretation and interpret everything that is said. They usually stand just behind the hearing person so that the line of sight is between the deaf patient and the hearing physician.
Equipment
Although many hospitals own a telecommunications device for the deaf (called a TTY, for text teletype), it is possible that no one on staff may know how to use it, and a portable TTY may not be available for deaf patients admitted to the hospital. Hearing persons trying to call a deaf patient can use the statewide relay service. This service (a toll-free telephone number) will type into the TTY whatever a person says into the receiver and will read what is typed by the deaf person through the TTY. The Americans with Disabilities Act also requires that equipment such as light warning devices (strobes) for alarms or “doorbells” be provided to deaf inpatients (this equipment is available in inexpensive, briefcase-sized kits). In addition, closed-caption decoders for televisions are inexpensive and may be easily hooked up for patient use. Most of this equipment would probably benefit patients with presbycusis that leaves them with moderately severe hearing loss.
Social Services
Social Services would benefit by employing personnel who have expertise in working with deaf persons or by allowing one of their workers to acquire that experience. Deaf patients may require extra help in obtaining medicines or medical supplies, in understanding their disease and its treatment, and in organizing subsequent appointments and interpreter services. A social worker with such expertise could truly be an advocate for issues about the care of deaf patients.
Conclusion
As physicians, we can do much for deaf persons by being more aware of the problems they face. Physicians should be their deaf patient's advocate in both the office and hospital. When a deaf person makes an appointment, we (or our staff) can take the initiative to ask whether the patient wishes to have an interpreter present (a deaf patient who arrives with a family member or friend to interpret may rather have an interpreter). The patient may have a preferred interpreter or may be able to help locate an interpreter. Physicians should familiarize themselves with the interpreter's role. If the office does not have a TTY, it should have the telephone number of the state's TTY relay service and be familiar with its use. Most importantly, we should understand that lip reading and writing are not always adequate alternatives to communication for deaf patients. However, when no interpreter can be present, we should know how to maximize the communication that occurs through lip reading and writing. In the hospital, we should insist on having an interpreter present if the patient wishes, especially at admission, for consent and for procedures. We should also know ways to make the hospital visit as easy as possible for the deaf patient (Table 1). The organizations listed in the Appendix can provide additional information on interacting with deaf persons.
The best way to know what is best for individual deaf patients is to ask them what they would prefer. Such an inquiry will not show ignorance but rather understanding. By increasing our awareness, we can improve the medical care delivered to the deaf in our communities.
Epilogue
By communicating through an interpreter in her own language, the boy's mother could finally understand the importance of her son's illness and how to comply with physician recommendations. By improving her access to the medical system, it became possible to determine that her daughter was a carrier of adrenal leukodystrophy and that her youngest son also had the disease. Although the first son died several months later, her other son is still being treated. Most importantly, the family remains together.
- Copyright ©2004 by the American College of Physicians
