People who are deaf have hearing loss severe enough that communication and learning are primarily by visual methods, and those who are hard of hearing (HOH) have mild-to-profound hearing loss. Whether patients are deaf or HOH, they should receive quality patient-centered care when they seek help from healthcare professionals.1 Clinicians' difficulty with communication, including a lack of knowledge about patients' culture, language, and literacy level, can significantly hinder the level of care received.1,2 New interpreting technology via the Internet (such as real-time video devices) may eventually help facilitate communication for patients who are deaf/HOH, but this technology doesn't currently work well enough to meet patient needs.
This article presents an overview of the laws and rules created to improve access to communication for people who are deaf/HOH. Besides describing various modes used to improve communication, the article provides a deeper understanding of best practices for effective communication with patients who are deaf/HOH.
Scope of the problem
Poor communication between patients who are deaf/HOH and hearing clinicians could lead to misdiagnoses, unnecessary transfers, mistreatment, poor assessments, and inadvertent harm to patients. This lack of communication often starts with a fundamental misunderstanding: that all those who are deaf/HOH have the same or similar types of hearing impairment. In fact, degrees of hearing loss range from slight to mild, moderate, moderately severe, severe, or profound.3,4 Impairments in hearing, which can occur at any time during a person's life, can affect one or both ears.3
The hearing needs of each person who's deaf/HOH are unique. It's crucial for healthcare professionals to assess each person's communication needs to best interact with him or her and to facilitate a higher level of care.
Patients who become deaf/HOH later in life may not know any sign language. Some may use hearing aids or a hearing assistive device. Even if the patient can speak, healthcare professionals can't assume that their communication will be fully understood. (See Tips for communicating with patients who are deaf/HOH.)
In 2010, the estimated number of people in the United States who are deaf/HOH is as high as 36 million, or 16 million more than a decade earlier, because the population of older adults is increasing and, with it, the number of people affected by presbycusis.5,6 Of those who are deaf/HOH, about 500,000 consider themselves to be culturally deaf.7 (See Understanding deafness as a culture.) Those who are culturally deaf don't view themselves as lacking something or as having a disability; rather, their deafness and use of sign language are considered a unique difference that contributes to a sense of shared community. This has been described as "deaf pride."7
Healthcare professionals' knowledge gap
When people who are deaf/HOH seek help from a healthcare professional, specific laws and rules govern facilitation of communication, but they aren't always followed. This is in part because many healthcare professionals, however well-meaning, have insufficient knowledge about the many types of communication among people who are deaf/HOH and make assumptions based on incomplete information.
Writing notes to communicate can be problematic, especially when patients who are deaf/HOH aren't fluent in spoken and written English. And even when patients are fluent in English, written notes can't capture the complex communication that occurs in a spoken exchange.8
A study was conducted in a large teaching hospital where interpreter services are available 24 hours a day and physicians have been educated about the need for such services. Researchers found that physicians often chose not to access these services due to their perception that they can "get by" using either family members or their own signing skills.9 The reasons they gave included not having enough time to wait for the interpreter, despite acknowledging that their patients who are deaf/HOH were likely to get substandard care.9 For example, in important conversations or treatment decisions (for example, discussions about end-of-life care or warfarin use), not having a qualified interpreter could result in a different healthcare outcome for the patient.9 Furthermore, failure to use an interpreter doesn't represent a patient-centered approach.
Laws promoting better communication
Under the Americans with Disabilities Act (ADA), all healthcare providers and facilities are mandated to provide reasonable communication accommodations, including qualified sign language interpreters, when caring for patients who are deaf/HOH.6,7 Family members, friends, or even other employees at the healthcare facility who can sign but have no formal interpreting education aren't qualified to meet this mandate. Hospitals must also provide effective means of communication for family members and visitors who are deaf/HOH in all hospital programs and services, including ED care, outpatient services, educational classes, and cafeteria and gift shops.11
Healthcare facilities and providers receiving federal funding must provide adequate language support to people with limited English proficiency (LEP) under Title VI of the Civil Rights Act of 1964.12,13 People with LEP include those who are deaf/HOH. Refusal, denial, or postponement of this language assistance by a healthcare professional is considered an act of discrimination.12
Attempts to use sign language interpreter services should always be documented in detail in the patient's medical record, including the name of the agency contacted, time of contact, and number of times attempted.7 If interpreter services aren't used or if clinicians must proceed without an interpreter, such as in a life-threatening emergency, the reason should be clearly documented.
To minimize incidences of discrimination, the Civil Rights Act has:
* made it a national priority to focus on any discrimination by those who receive federal funds.
* allowed other federal agencies and departments to generate principles and expectations for acts of discrimination.
* facilitated a process to suppress or hold funds or any other means permitted by law when discrimination occurs.14
In addition to the Civil Rights Act, new Federal legislation specifically covering the deaf/HOH was enacted, and special interest advocacy groups for the deaf/HOH were formed. Various governmental departments have also stepped up to provide services to protect people who are deaf/HOH from acts of discrimination by healthcare providers.7
The U.S. Department of Health and Human Services Office of Minority Health's National Culturally and Linguistically Appropriate Services (CLAS) Standards in Health and Health Care and The Joint Commission have concurrently defined expectations and standards of care that hospitals and healthcare providers must follow to provide successful communication via qualified sign language interpreters and telecommunication devices (for example, telecommunication devices for the deaf [TTY] or real-time video devices).7 (See Choosing the most appropriate method of interpretation.)
Each state determines the education level a qualified sign language interpreter must possess. For example, some states have certification exams to ensure expected sign language interpretation standards are met to protect the consumer-in this case, the person who's deaf/HOH.
According to the Registry of Interpreters for the Deaf, a nationally certified deaf interpreter (CDI) is either deaf or HOH. A CDI may use an assortment of techniques and skills, such as gestures, drawings, mime, and props, to improve communication.14-16 To a person who's hearing, a CDI may look like a "master of charades."
At times, a CDI is called an intermediary or relay interpreter.17 Some state agencies, such as the Massachusetts Commission for the Deaf and Hard of Hearing, assist healthcare professionals in determining if a CDI is needed.
Role of sign language interpreters
Many people who are hearing, including healthcare professionals, believe a common myth: that all people who are deaf read lips accurately. The best lip readers who are deaf/HOH can accurately interpret only about 30% of all spoken sounds in the English language by watching the speaker's lips or tongue.7 A healthcare professional may not be aware that having an accent, or a moustache or beard, can lower the patient's ability to understand even further. The use of a sign language interpreter helps facilitate complex and often subtle communication between people who have a hearing disability and those who can hear.15
The goal of using a sign language interpreter is to shape the communication experience between the healthcare professional and the patient as accurately as possible. Interpreting in sign language involves more than simply replacing a word of spoken English with a signed representation of that English word.18 Rather, it involves the interpretation of perceptions, expressions, intentions, and expectations between the healthcare professional and the patient who's deaf/HOH.19 To help convey these nuances, sign language interpreters use facial expressions, hand shapes, movement, and other subtleties to communicate.6
Sign language interpreters must not only understand what they interpret, they must also be adaptable to meet the many communication barriers and unique needs of each patient who's deaf/HOH and each healthcare professional. Sign language and other interpreters must be qualified, which means they can interpret accurately, competently, and impartially. Interpreters working in hospitals need to be familiar with the vocabulary used and be able to interpret medical terms and concepts.11
Role of CDIs
Some patients who have language or cognitive deficits fill in critical communication gaps with invented concepts to make sense of the world around them.6 A CDI can facilitate communication with patients who have limited language skills or severe language deficits, neurologic and/or cognitive deficits, or a major mental illness. These problems can be due to a genetic, medical, or other cause. Those who are deaf and can't communicate with others, even with sign language, are at risk for language deficits.18,20
A typical assessment using a CDI and sign language interpreter will take much longer because the CDI transforms what the healthcare professional communicates into a basic, simple language. This can require multiple iterations before the patient understands what's being interpreted, if he or she can understand at all. As always, healthcare professionals should communicate in the most simple and concrete manner and minimize the use of idioms.
Interpretation through the Internet
Technological advances continue to provide additional options to help healthcare professionals communicate with deaf/HOH patients. Interpretation services, for example, are now available for almost any language and exactly when healthcare providers need them. Many healthcare professionals can access voice-based interpretation services through a phone service for languages, such as Farsi and Hungarian, that they previously couldn't access with local interpreters.
Similar interpretation services are now available over the Internet through real-time video devices for healthcare professionals working with patients who are deaf/HOH. In theory, this new option is a great addition to the healthcare professional's interpretation tools. In one study of public hospitals, the cost of interpretation services decreased while the number of meetings using interpreters over the Internet increased.10
Although interpretation services via the Internet are convenient and cost less, they also carry significant risks. For example, sign language interpretation via the Internet can be inaccurate because the interpreter is unfamiliar with the patient and his or her signs, doesn't understand the content being discussed, or isn't competent. Sign language interpreters accessed through the Internet may not be certified, licensed, or have any education in medical terminology. Nonlocal interpreters may not be familiar with local signs, especially those for medical terminology, used by the patient who's deaf/HOH. In addition, unclear audio and visual aspects of the online connections may interfere with effective communication.21
The likely next step in bridging the online technological dilemma is to directly connect local interpreters to local patients who are deaf/HOH via the Internet.
Risks of using family and friends
Communication using sign language interpreters and CDIs is vital in providing quality patient-centered healthcare to patients who are deaf/HOH, but many healthcare professionals fail to include professionally trained sign language interpreters.10 A patient's family member, a friend, or even a staff member who can sign is often used as an ad hoc interpreter in clinical assessments and interactions with patients.10
In this situation in which skill levels vary widely, communication could be impeded by the ad hoc interpreter inserting his or her opinion and commentary, which could lead to missing important details needed for an accurate patient assessment and diagnosis.1 Untrained ad hoc interpreters often aren't proficient signers and may lack knowledge of appropriate medical terminology.1 One study of 13 pediatric ad hoc interpreted meetings with healthcare professionals demonstrated almost 400 interpreted errors.12 They may also be unaware of the need for maintaining confidentiality of patient information.
Poor communication between a patient who's deaf/HOH and a healthcare professional can have dangerous clinical consequences.12 For example, a patient who's deaf/HOH could misunderstand dosage instructions and take a dangerously high or insufficiently low medication dose.
The healthcare professional is also put at risk when an unqualified interpreter is used instead of a qualified sign language interpreter. Besides failing to meet the ADA requirement, using an unqualified interpreter may violate privacy provisions in the Health Insurance Portability and Accountability Act of 1996. The responsibility for quality patient care lies with the healthcare professional when communication isn't successfully managed. If a patient who's deaf/HOH becomes ill, injured, or dies as a result of poor communication by the healthcare professional, that professional is at risk for serious legal consequences. The healthcare professional and the patient both benefit from the inclusion of a qualified sign language interpreter in the clinical encounter.
Communicating interpreting requirements
Although healthcare professionals are mandated by law to provide reasonable communication access to patients who are deaf/HOH, many aren't aware that the responsibility lies with them to obtain interpreters and CDIs. Healthcare professionals must be informed about the federal and state mandates about the use of interpreters when providing care for patients who are deaf/HOH.
If an interpretation policy is in place at a healthcare facility, this policy must be clearly and frequently communicated to healthcare professionals. These policies should meet The Joint Commission and CLAS standards and be regularly reviewed for accuracy.14 Healthcare professionals need to know the process for accessing sign language interpretation and CDI services in their facility.
Critical communication
Healthcare professionals must increase their efforts to improve communication with patients who are deaf/HOH to make sure they receive quality patient care.
Tips for communicating with patients who are deaf/HOH25
Follow these best practices for effective communication:
* Begin the conversation by getting the patient's attention. Call the patient by name, tap his or her shoulder, wave your hand, or use other visual signals.
* Ask the patient what you can do to help improve the communication process.
* Maintain eye contact. If you have to turn away from the patient, wait until you reestablish eye contact before continuing your conversation.
* Communicate in a well-lit and quiet environment with few visual and auditory distractions.
* Avoid standing or sitting in front of bright lights or windows.
* Make sure your face and mouth are clearly visible. Don't eat, smoke, chew gum, or in any way cover your mouth.
* Speak clearly at a normal pace, avoiding exaggerated lip movements or shouting.
* Use facial expressions and gestures to help clarify your message. Pointing to where you are on a form or computer screen or to appropriate objects or using visual aids can also be very helpful.
* Introduce one idea or fact at a time.
* Only one person should talk at a time in a group situation.
* Rephrase (don't just repeat) your message if the patient doesn't understand you.
* Don't assume the patient can hear and understand what you're saying just because he or she is wearing a hearing aid. The hearing aid may be worn to help with awareness of environmental sounds such as a fire alarm or a car horn and may not help the patient understand speech.
* Ask the patient what communication tools (such as a whiteboard, computer, or tablet) work best for him or her.
* Consider the patient's hearing loss as you develop the plan for services. You'll have a better understanding of the patient's communication needs from going through the assessment process. Be sure the plan contains the needed communication supports.
* Communicating with patients who are both deaf and blind (deafblind) is more complicated. See this website for more information: http://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&Revisio.
Understanding deafness as a culture22,23
Deafness isn't simply a physiologic condition or disease affecting the ears. Many people who are deaf/HOH consider it a way of life. They're members of a community with a common culture, not unlike Black Americans who are also proud of their heritage.
The feeling of cultural identity is strongest among those who use primarily sign language to communicate. Understanding American Sign Language (ASL) helps one appreciate the culture of the people who use it. Rather than a simple translation of English into a visual form, ASL is a separate language that's recognized by many governmental and educational organizations. Several U.S. universities include it as an option for students with normal hearing to meet their foreign language credit requirement.
People throughout the world who are deaf/HOH have developed unique and distinct forms of sign language, including regional dialects. The World Federation of the Deaf, which is supported by the United Nations and consists of national and state associations of the deaf, has created a universal sign language called Gestuno.
Not only the language but the social norms of deaf culture differ substantially from those of people who can hear. Like many other groups with their own culture and language, people who are deaf/HOH tend to congregate at events so they can communicate in their own language. Many people who are deaf/HOH prefer not to use verbal and written communication when alternatives such as ASL interpreters or video relay services are available. These options let them communicate in their native visual language rather than with English text-based forms of communication.
Choosing the most appropriate method of interpretation2,11,24
Sign language interpreters
Many people who are deaf/HOH use one of several sign languages. These visually interactive languages use a combination of hand motions, body gestures, and facial expressions.
Oral interpreters
Not all people who are deaf/HOH have learned to use sign language. Some know speech reading (lip reading) and can understand spoken words fairly well with assistance from an oral interpreter. Oral interpreters, who have received special education, can articulate speech silently and clearly, sometimes rephrasing words or phrases to give higher visibility on the lips. They also use natural body language and gestures.
Cued speech interpreters
A cued speech interpreter functions much like an oral interpreter except that he or she also uses a hand code, or cue, to represent each speech sound.
Computer Assisted Real-Time Transcription (CART)
Many people who are deaf/HOH don't use sign language or speech reading. With CART, an operator types what's said into a computer that displays the typed words on a screen.
Text Telephone (TTY)
Although it's sometimes called a Telecommunication Device for the Deaf, TTY is the more widely used term. A TTY is a special device that lets people who are deaf/HOH or speech-impaired use the telephone to communicate by typing messages back and forth to one another instead of talking and listening. To communicate, each person needs a TTY. When a hearing person doesn't have a TTY device, many states have relay operators who help by talking to the hearing person and typing to the deaf/HOH person. TTYs are used by many people, not just people who are deaf/HOH. However, use of TTYs has decreased dramatically since newer technologies have become available for deaf/HOH people.
Video Relay Service (VRS)
VRS is a form of telecommunication relay service that uses a TV with a videophone, a mobile wireless device/computer with a web camera, and high-speed Internet. Someone who's deaf/HOH and uses sign language to communicate can use this technology to call a hearing person who uses a standard phone. The caller signs to the interpreter on the screen, who in turn speaks to the hearing person. The interpreter signs back to the caller what the hearing person has said. Communication between the two people is almost simultaneous. This visual form of communication is valued by many people who rely on sign language to communicate. A voice telephone user can also initiate a VRS call by calling a toll-free number or the number of the person who's deaf/HOH.
Video Remote Interpreting (VRI)
VRI is a convenient resource for interpreter services when or where an interpreter isn't available. Video conferencing equipment or a TV with a video phone lets people who are deaf/HOH communicate with hearing people at the same location through an interpreter who isn't physically present. A fee is required for this service.
Videophone
This device with a video camera is capable of bidirectional video and audio transmissions for communication between people in real time. People who are deaf/HOH may call other signers point-to-point or call nonsigners using a VRS.
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