Patients with disabilities

Terms and definitions

• Prelingual deafness: Deafness occurring before the acquisition of spoken language, either congenital or before the age of 2 or 3 years. More than 90% of deaf children are born to hearing parents.

• Postlingual deafness: Deafness occurring after the acquisition of spoken language.

• Presbycusis: Loss of hearing as part of the aging process. Nearly half of elders over the age of 75 have some degree of hearing loss.

• Deaf Culture or Deaf Community: A culture is defined by a group of people who share similar beliefs, customs, and language. If ASL is a deaf person’s primary language, if he or she attended a school for the deaf, and if he or she seeks opportunities to socialize with other deaf people, then he or she most likely considers himself or herself part of the Deaf Culture. In this section of the text, you will see culturally deaf people referred to as Deaf (capital “D”) and people who have a severe or profound hearing loss but do not affiliate with the Deaf Community as deaf (lowercase “d”). This is important in terms of identifying the most appropriate method of communication and therefore ensuring accessible, quality health care for individual patients with hearing loss.

• American Sign Language (ASL): A visual-gestural language used by the Deaf Community in the United States. ASL is a true language, as different from English as any other language. It has a distinct word order and grammatical structure. It is not a visual representation of English nor is it rudimentary gestures. Signed languages are not universal. As a matter of fact, British Sign Language is practically incomprehensible to Deaf people raised in the United States. There is more similarity between ASL and French Sign Language because the development of ASL was heavily influenced by a Deaf teacher, Laurent Clerc, who came to the United States from France to teach deaf children in the late 1800s.

• Interpreter: Someone who is fluent in two or more languages and renders messages from one spoken or signed language into another spoken or signed language.

It is important to note the use of the term interpret in contrast with the term translate, which means to render a message from one written language to another written language and is often incorrectly used when referring to interpreting. ASL interpreters have received special training. Some may have been raised in a Deaf family where ASL was their first language. They should have national or state certification to ensure competency in the language, knowledge of the interpreting process, and adherence to a professional code of ethics. In some states, sign language interpreting is a licensed profession.

Best practices

Always ask patients what their preferred mode of communication is: lip reading and speaking, writing, or using an interpreter. Do not assume that all patients with hearing loss know sign language or are expert lip readers.

When working with a patient who prefers lip reading, speak in a normal tone of voice. Do not yell, exaggerate your lip movements, or speak excessively slowly. Maintain eye contact when speaking with your patient. Do not turn away or look down when speaking. Make sure the room is well lit and, if at all possible, avoid back lighting, such as standing in front of a bright window. Remember that facial hair may interfere with accurate lip reading. Be aware that a mask will interfere with effective communication if your patient is relying on lip reading.

A 2011 study of individuals with normal hearing revealed that mean-word recognition accuracy scores were barely greater than 10% correct when exposed to a video of a female talker with the sound removed. For individuals relying on lip reading for communication, accuracy is significantly impacted, and much of the information must be gleaned from context and prior experiences. Therefore it is important to have clear transitions from one topic to another. For example, if you are talking with a patient about his or her medication and then switch the topic suddenly to his or her upcoming surgery, most lip readers will have difficulty following the conversation at that point. To ensure accuracy, always check for understanding. If something is not clear after one or two repetitions, try rephrasing the information or presenting it in writing. Do not say “Never mind” or “It’s not important.” This may be perceived as dismissive or condescending by the patient.

When working with a patient who prefers written communication, you will need to allow extra time for the encounter. Your communication with the patient should be written in short, simple phrases, but do not edit or eliminate information you would provide to any other patient. Avoid abbreviations and medical jargon. Do not assume a patient has fluency in written English. For many Deaf people who use ASL, English is their second language. Feel free to use brochures and patient education materials that are preprinted and readily available. Ask the patient to read any printed materials during the visit so that you can assess understanding. For lengthy visits requiring in-depth patient education (e.g., a patient newly diagnosed with diabetes), consider using Computer Assisted Real Time captioning (CART or C-Print). This service provides a transcriptionist who has special training and computer software that allows English text to be projected onto a screen as the speaker talks. Tablets and other handheld devices can also be used to facilitate written communication.

Health care facilities (both public and private) are required to provide a sign language interpreter for Deaf patients who communicate in ASL. Interpreters can be scheduled through local medical centers or deaf service organizations, and some on-call availability is typical in major metropolitan areas. Interpreter requests should be made as soon as the need becomes known because there is a shortage of qualified interpreters in most communities. Video relay services are available at some locations, allowing immediate access to interpreters any time of the day or night. Not all Deaf people are comfortable with the video relay interpreters because trust plays a critical role in potentially sensitive situations.

If you need to communicate with your deaf or hard-of-hearing patient by phone, you first need to assess his or her preferred mode of telecommunication. Many deaf people use text messaging or other computer-based communications such as email. Some rely on a telecommunication device for the deaf (TDD or TTY). Your clinic or hospital should be equipped with a TDD, but if it is not, you can use a telephone relay service similar to the video relay mentioned earlier by dialing 711 in most areas. There is no charge for this service. Some people with hearing loss have phone amplifiers and enough residual hearing to use the telephone directly. Never convey personal medical information through household members who can use the phone unless you have written permission from the patient.

Challenges

Many health care providers do not know how to access the services of an interpreter. Be proactive. Learn the resources in your institution and community so that you are able to locate qualified ASL interpreters. Be sure that the office staff, especially those scheduling appointments or performing patient intake at your institution, are also familiar with these resources.

Patients do not always get sick on our schedule, and they may not be able to tell you their preferred mode of communication; therefore it is critical to have an on-call list of interpreters for urgent or emergent visits. A sign language interpreter should have the skills to identify communication styles and recognize the communication needs of patients who are unable to do so. As always, if patients are able to communicate, ask first about their preferences before relying on a companion, family member, or interpreter to determine the best approach to communication.

Methods to ensure access

If 80% of our diagnoses come from the history, then how important is clear and accurate communication with the patient in our ability to provide appropriate care? Working effectively with interpreters is key to providing good care to patients who do not or cannot use spoken English as a primary means of communication. An interpreter should be someone who has fluency in both languages (the language of the patient and that of the health care worker) and training in the role and ethics of interpreting. Guidance from the Federal Department of Health and Human Services (DHHS) Office of Civil Rights makes it clear that a family member or friend should not be relied on to provide objective interpretation. Moreover, unless you are certain of a staff person’s fluency and skill in functioning in the interpreter role, it is not advisable to use a staff member who happens to “know some signs” or “took some Spanish classes.” Numerous examples (and lawsuits) exist regarding negative health outcomes as a result of using these well-intentioned but unqualified individuals to transmit medical information.

Interpreters have a distinct and limited role in medical settings. The ultimate goal is to facilitate communication, allowing all parties to function as autonomously and independently as anyone else in a similar situation. Interpreters are not advocates. They most likely do not know the medical or social history of the patient, nor would it be appropriate for them to share this information if they did know. Although they may periodically provide clarification, especially around cultural norms (this is called “cultural brokering”), it is not the role of an interpreter to explain things beyond what you have told the patient, check for understanding, or ensure appropriate follow-up. That is your job as the provider. The role of the interpreter is to afford individuals who do not share a common language the ability to effectively communicate with one another.

Working with sign language interpreters differs in some subtle ways from working with a spoken language interpreter. Although spoken language interpreters usually prefer to position themselves so that they can see both you and the patient, sign language interpreters need to be beside and slightly behind the provider so that the patient can see the interpreter and provider at the same time. This positioning, particularly during history taking, enhances rapport and improves the clarity of communication.

Spoken language interpreters need to interpret consecutively (you speak and then pause and allow the interpreter to repeat what you have said in the patient’s language) because they cannot interpret while you are speaking. Sign language interpreting can, for the most part, be done simultaneously. The interpreter will sign as you are speaking, usually a phrase or two behind you. You should address the patient directly. Do not say, “Tell him” or “Ask her.” Expect pauses in the conversation as the interpreter completes a phrase and receives the patient’s response. The patient will respond in his or her native language, and the interpreter will voice the patient’s response in the first person. When you hear the interpreter say, “I have a pain in my side,” he or she is simply repeating what was said or signed by the patient.

Interpreters may need to periodically ask for clarification of terms or concepts. If this is the case, a professional interpreter will make the request by stating, “The interpreter needs clarification.” This allows for distinction in role and clarity for the participants as to who is speaking at any given time.

At times, a hearing sign language interpreter will work in tandem with a Certified Deaf Interpreter (CDI): someone who is Deaf, a native user of ASL, trained as an interpreter, and familiar with many communication modalities used by a wide range of deaf people. Deaf interpreters are typically needed to communicate with patients who do not use standard ASL, such as those from other countries using that country’s sign language, Deaf people who have cognitive or physical barriers to using ASL, and those who rely on idiosyncratic or “home” signs.

Interpreter errors do occur. One study revealed a mean of 31 errors per encounter made by interpreters in medical settings. As you should for any patient with whom you do not share a common language, check with your patient frequently for understanding. As a supplement to your onsite communication through the interpreter or with your lip-reading patients, provide a written copy of critical material (e.g., medication dosage changes or follow-up instructions) whenever possible. Give complete information regarding new or changed medication orders because there will likely be no interpreter available at the pharmacy.