Introduction
Healthcare is routinely inaccessible to deaf[1] people due to communication and linguistic barriers. Individuals whose language is American Sign Language (ASL) or another sign language are often denied access to the health care system because most providers do not provide adequate communication access in ASL or any other sign language, through qualified interpreters. Complicating this further is the fact that individuals who are deaf vary greatly with respect to their hearing levels, communication styles, and languages. As a result, it is often a struggle for deaf individuals to find a health care provider with whom they can effectively communicate.
The health care system has largely failed to both ensure and provide accessible language services and health information for many deaf individuals. The lack of accessible health communication in the health care setting may contribute to poor patient-provider communication. Most medical training programs fail to adequately prepare medical staff to effectively communicate with deaf individuals. Similar to the needs of other linguistic minority populations, deaf individuals whose language is ASL require either a ASL-fluent provider who can communicate directly with the patient or through the services of a qualified sign language interpreter in health care settings. Federal laws require health care providers to ensure that effective communication takes place between the provider and the deaf patient. However, the scarcity of ASL concordant providers, the monetary challenges of budgeting for language and/or communication services, and the relatively poor awareness of the needs of the deaf population all contribute greatly to the health care disparities in this country.
To reduce the health care inequities that deaf individuals face in our current health care environment, the health care system must begin to address these obstacles by educating their health care staff and providers on how to identify at-risk individuals for poor communication and ensure these individuals receive appropriate language assistance and accommodations. In the following sections, we provide a list of potential recommendations that may help remove many of the existing health care access and communication barriers for deaf individuals.
The first step to ensuring better health care access for deaf individuals is the establishment of a strong relationship between the primary care provider and the patient. A strong primary care provider-patient relationship has been demonstrated to be critical to improving chronic disease management while reducing inappropriate and unnecessary health care services. However, due to communication barriers, many individuals who are deaf are unable to establish a strong relationship with their primary care providers. This frequently results in inadequate comprehension of disease management and poor treatment adherence. Anecdotal evidence suggests that because of language and communication barriers, deaf individuals are more likely to over-utilize the emergency room and urgent care services for routine health care matters.
Similarly to what is seen with other linguistic minority populations, effective communication between providers and patients often result in higher rates of preventive screenings, improved satisfaction and quality of health care communication, and possibly lower rates of emergency room use among individuals who are deaf.
Research demonstrates that in hospital settings, effective communication can result in:
• Shorter lengths of stay (LOS)
• Fewer hospital readmissions
• Fewer emergency room visits
• Better treatment adherence
• Better medical follow-up
• Fewer unnecessary diagnostic tests
• Better healthcare outcomes
• Better patient health care satisfaction
To this end, this paper provides guidelines to provide for effective communication to individuals who are deaf and communicate in sign language.
Guidelines for the Health Care Provider
1. Clearly identify at-risk individuals for poor communication
Flag records to recognize those who need language and communication assistance. This can potentially be done through a pop-up window in the patient’s chart in the electronic medical record or by labeling a patient chart with a universally recognized icon to indicate that the patient is deaf.
2. Visual Medical Aids
Where necessary to facilitate patient education and communication use charts, diagrams, models and aids in the office to help explain certain concepts and basic anatomy. In addition, provide a list of online resources to reinforce teaching and understanding.
3. Providers who know basic sign language
a. Be aware of your limits: having basic sign language skills can certainly make a deaf patient more comfortable. However, this does not meet the level of fluency required for effective communication, especially in regards to complex health care discussions. Language fluency often requires years of training, which is true of any language including ASL. Consequently, using basic sign language skills should only be used as a last resort in an emergency situation such as when an interpreter is not readily available and even then should only be used until a professional interpreter arrives. It is important that providers be honest with their assessment of their ASL fluency, in addition to be receptive to any potential patient communication issues.
b. If bilingual staff members are used as interpreters, their sign language fluency should be assessed by a an accredited certifying body, such as the Registry Interpreter for the Deaf (RID) prior to providing services,
4. Establish an effective communication office policy
It is recommended that the frontline staff should ask deaf patients what their communication needs are and document this in the patient’s medical records to facilitate any future requests. Documentation should be clear on how any language or communication needs were addressed with each patient at each visit. This should also include any reason why accommodations were declined by the patient.
To provide qualified interpreting services, it is recommended that medical providers and/or centers build a database of qualified sign language interpreters with expertise in medical settings. This database should be used as a reference for all medical situations that may come up in the future. Medical centers, including health care providers can contact any of the following organizations to learn about potential listings of certified sign language interpreters: the a deaf and hard of hearing state commission, if one exists, the state association of the deaf, the National Association for the Deaf (www.nad.org), as well as local chapters of the Registry of Interpreters for the Deaf (RID) (www.rid.org). The listing of interpreter agencies and certified interpreters should be freely available to any health care staff that is responsible for coordinating language and communication services for deaf patients.
5. Provide qualified sign language interpreters
a. Interpreters should be familiar with medical terminology and medical context in order to effectively interpret in the healthcare setting. While there is no medical certification for sign language interpreters at the present time, medical interpreting requires training and experience that is not routinely integrated into most interpreter training programs. This is usually obtained through continuing educational opportunities and collaborating closely with skilled medical interpreters.
b. Deaf individuals may vary with their preferences for types of sign languages and signing styles. For example, some deaf individuals may prefer an English-based sign language or ASL. Individuals who are deaf-blind or experience low vision (e.g. Usher’s syndrome) may require a tactile sign language or they may need an interpreter to stand at close proximity.
c. Certain individuals may require the addition of a Certified Deaf Interpreter (CDI). A CDI is a certified interpreter who is also deaf or hard of hearing who works in tandem with the sign language interpreter. This type of an interpreter is specially trained to facilitate communication between the medical provider and individuals who are deaf with poor communication skills secondary to language deprivation or use a foreign or home-based sign language unfamiliar to the medical interpreter (refer to www.rid.org).
d. Health providers and staff should understand the patient’s specific language and communication needs. This is best done by finding out directly from the patient as to his or her needs. The patient will have the best ability to assess their needs and what tools are needed to ensure effective communication. Language and communication needs should be determined upon enrollment as a new patient or visit and should be done prior to each appointment or encounter. The individual should be asked about the quality of their health communication and accommodations they receive to ensure that effective communication is being provided.
e. When applicable or requested, certified interpreters familiar with medical interpreting should be provided at all times. If face-to-face interpreters are not available, then video remote interpreting services should be offered. The NAD’s position paper on VRI services.
f. The use of friends and family members, especially children of deaf individuals, as interpreters, should be avoided due to lack of impartiality, unfamiliarity with medical terminology and interpreting strategies, and difficulty in communication during times of highly sensitive medical topics or duress.
g. The use of qualified interpreters leads to fewer clinical errors, higher patient satisfaction, and better clinical outcomes.
h. Health care providers and staff should make every effort to inform and assist interpreters in understanding clinical information that is to be presented. Avoidance of medical jargon or acronyms should be minimized to enhance effective communication.
i. Health care providers and staff should make every effort to look at the patient directly, not the interpreter, to both engage the deaf patient and to improve patient-provider alliance. This also helps establish a therapeutic alliance.
j. Speak in the first person to the deaf patient even if the patient is looking at the interpreter. Do not assume talking loudly will help increase understanding.
6. Ineffective methods of communication
a. Lip/speech reading is frequently ineffective. Many factors reduce lip reading abilities (e.g. lighting, facial hair, foreign or regional accents). Many sounds cannot easily be read on the lips. Additionally, patients who are anxious, scared, fatigued, affected by medication, may all hinder the patient’s ability to effectively lip/speech read. Many deaf people, particularly in medical settings, will feign to understand and nod their heads in agreement. This is usually not an indication that they are understanding but as a result of feeling reticent to inform the health care professional that they are NOT able to understand. Teach-back is extremely important in assessing and ensuring patient’s understanding.
b. Do not assume note writing is an effective communication tool. American Sign Language is not based on written or spoken English. The syntax and grammatical structure are very different from English. English is often a second language for many deaf people just as it is for people coming from other countries. Writing is also labor intensive and for many deaf people as well as health care providers, writing may be found to be cumbersome and inefficient in a medical setting.
7. Effective Communication Approaches: Resources
a. Patient education programs such as AskMe3 . See: www.npsf.org/for-healthcare-professionals/programs/ask-me-3/
b. Teach-Back method to improve communication between patient and health care provider. See: www.nchealthliteracy.org/toolkit/tool5.pdf
c. Joint Commission See:(http://www.jointcommission.org/assets/1/6/ARoadmapforHospitalsfinalversion727.pdf)
d. American Academy of Family Physicians for further information on effective communication with deaf individuals.
8. Relevant laws
Hospital and medical centers should make every effort to educate their medical staff and providers on the provision of appropriate, effective, and quality communication to deaf individuals. They should be familiar with the legal mandates of the following laws that require equal access and communication at all health care settings for deaf individuals:
a. Section 504 of the Rehabilitation Act of 1973: This federal law mandates equal access for all federal health care services and facilities and health care providers who are also recipients of federal financial assistance.
b. Title II of the Americans with Disabilities Act: This federal law mandates equal access on all public (state and local) health care providers.
c. Title III of the Americans with Disabilities Act: This federal law mandates equal access on all private health care providers.
d. Title VI of the Civil Rights Act of 1964: This federal law mandates appropriate language access in the health care setting to individuals who have limited English proficiency.
e. State laws that often mirror the above federal laws and provide separate remedies.
Conclusion
The evidence is compelling that deaf individuals have insufficient access to health care. This results primarily from communication barriers in the health care system. It is time to move beyond the identification of barriers to generating realistic solutions. Access in the form of effective communication must be created and consistently provided to create an optimal health care system. To this end, providers should identify and document the needs of their patients and provide a range of effective communication options to ensure that quality services are delivered. At the very minimum, existing federal laws under Section 504 and the ADA require health care providers to ensure that such effective communication is achieved.
Further information on the legal requirements can be found on the National Association of the Deaf (NAD) website at www.nad.org.
The National Association for the Deaf is also available to provide training to hospitals and medical centers on providing access to deaf individuals. For further information, please contact the NAD at www.nad.org or at 301-587-1788 (voice or videophone).
This position paper was prepared by the Medical Access subcommittee of the NAD Civil Rights subcommittee.
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[1] The term “deaf” is to be interpreted to include individuals who are hard of hearing, late deafened, and deaf-blind.