In the United States, one in four adults report significant disabilities in cognition, hearing, vision, mobility, self-care or independent living, and one in seven say that a communication disability affects their speech, language, voice or hearing. One in twelve children has an intellectual or developmental disability (IDD). Well-documented health and healthcare disparities affect these populations. Disabled people are less likely to receive preventative care and timely diagnoses and chronic conditions are both more prevalent and less well-controlled. Ineffective patient-provider communication and clinician discomfort contribute to these disparities.

Many physicians  express discomfort caring for people with disabilities, with only 41% saying they were confident in their ability to provide them with equal quality care and 57% strongly agreeing that they welcome them into their practices. People with disabilities often tell stories about the assumptions that other people make – that somebody in a wheelchair, for example, must have a cognitive disability, or that they have some needs that must be addressed by the person whom they’re encountering.  When bias, stigma, and assumptions enter clinical encounters, it makes it less likely that a visit will have the intended outcome and that a patient will return.

Our goal in this session is to increase your comfort and confidence in communicating effectively with your patients with disability and identifying barriers that are impacting their health and healthcare.

Three things clinicians should know about disability

Dr. Joel Michael Reynolds, an ethicist and disability scholar, published “Three Things Clinicians Should Know About Disability” in the open-access AMA Journal of Ethics. Please read the complete essay, which is embedded below and available at this link. Dr. Reynolds’ recommendations reflect true patient-centeredness: acknowledge your patients as the experts in their own goals and function, integrate your clinical understanding with their lived experience, and share decision-making.

Eliciting a Functional History

In some clinical situations, you will need to explore a patient’s functional status and how it impacts their health. Function is complicated. If you made a list of everything that you have done today, you’d find that it encompasses many domains of function. You may have rolled over in bed, got up and walked to the bathroom. You got yourself dressed, brushed your teeth, combed your hair – all without thinking about it. For people who have impairments, accomplishing these tasks may not be as straightforward.

Because function is complicated, it’s divided into smaller domains: mobility, activities of daily living (ADLs), cognition, communication, vocation (education or employment) and avocation (fun). In the clinic setting, a questionnaire about function may be completed before the visit.  Two tools that are commonly used to assess the ability to perform ADLs are the the Katz Index of Independence in ADLs and the Lawton iADL Scale.

When eliciting a functional history, you could start with your patient’s goals – what are they hoping to be able to do? With these goals in mind, you can explore the relevant functional domains in more detail.  You can also start by asking open ended questions about a typical day at home and routine activities.

If you identify a gap between current and desired function or a significant limitation in function, you could consult with a physical or occupational therapist.  Physical therapists specialize in ambulation and mobility, including assistive devices and wheelchairs. Occupational therapists can optimize the ability to perform ADLS and participate in employment and hobbies, and speech and language pathologists specialize in communication and cognition.

Patient-centered documentation

Clinicians should also know how to use patient-centered and respectful language. The Center for Disability Rights’ Disability Writing & Journalism Guidelines can help you choose language for your written notes and oral case presentations. Note that the terms “impairment” and “patient” are discouraged for the media, but they are appropriate for medical use – rehabilitation specialists distinguish between the impairment in bodily structure and function and disability.

These guidelines also describe the use person-first versus identity first language. Although we have generally recommended the use of person first language in notes and OCPs, there is an emerging group of disabled people who prefer identity first language, to acknowledge their disability as a core part of their identity. A growing number of Deaf people, for example, prefer identity-first, for example: Deaf person rather than person who is Deaf. If your patient prefers identity first language, you should use identity first language in your documentation and case presentations.

Inclusive and adaptive communication practices

Ineffective communication contributes to the health disparities experienced by people with disabilities. Patient-centered communication improves patient engagement and outcomes by fostering a respectful relationship, exploring their priorities and perspectives, and including them in shared decisions about their health. In surveys, people with disabilities are less likely than those without disabilities to say that clinicians treat them with respect, solicit their perspectives, or provide them with understandable information.

Unfortunately, many practicing physicians have not been well prepared to adapt their communication for those who need it, noting  the greatest communication barriers with people who are Deaf or hard-of-hearing, those who are blind or have low vision, and those with intellectual disability.

Gathering information, sharing information and co-creating a treatment plan can all be more difficult when your patient has a speech, language, cognitive or hearing impairment. Although your goals for the patient encounter should not change, you may need to communicate differently in order to achieved these goals.

Common communication disorders

Language disorders

Aphasia is the most common language disorder in adults, and is usually caused by a stroke or other brain injury. People with aphasia have difficulty encoding their thoughts into words to convey them to other people or decoding what they hear or read to decipher others’ messages.

Aphasia can affect all aspects of language including auditory comprehension, reading comprehension, and verbal and written expression. Modalities may be affected to a different extent, however, and people often have relative strengths and weaknesses. It’s important to remember that aphasia is a disorder of language not a disorder of intellect. The brain damage that caused the aphasia may also cause cognitive difficulties but that is often not the case.

Broca’s aphasia is usually caused by damage to the left frontal cortex.  Speech is characterized by hesitation coming up with words and substituting the wrong word.  Auditory and reading comprehension are relatively spared, and people with Broca’s aphasia are often aware of the problem because they can hear and interpret the words that they are saying.

Wernicke’s aphasia is typically caused by damage to the left temporal cortex, which causes greater impairment in comprehension.  People with Wernicke’s aphasia often have fluent speech, meaning it flows effortlessly and may have relatively good grammar, but the content is often incorrect or the wrong words are used so the overall message may be lost. Because people with Wernicke’s aphasia have comprehension problems, they are less likely to be aware of their difficulty with communication, particularly if it’s severe.

Speech disorders

Speech disorders can be caused by damage to the speech structures such as the tongue or larynx, or damage to the neural control of those structures.  Common speech disorders include:

• stuttering, a fluency disorder
• dysarthria, which is caused by neurological injury
• problems with voice caused by injury or impairment of the larynx

Cognitive communication disorders

Altered brain function in the areas of memory, attention, problem solving or judgment can all affect communication. In some cases, a person may be able to converse fluently and coherently without being able to process or recall anything that was discussed. In other cases, it may be clear that a person is confused as their narrative is not coherent.

People with cognitive communication disorders may be tangential because they have difficulty attending to the topic.  They may not be aware of this. They may also miss social signals in conversations, such as subtle facial expressions or gestures that signal that it is time to allow the other person to speak, or they may say things that are not typically considered socially appropriate.

Hearing disorders

Conductive hearing loss is caused by problems conducting sound through the outer or middle ear. Sensorineural hearing loss is caused by problems transmitting that sound from the inner ear to the brain. Sensorineural hearing loss decreases both sound loudness and sound clarity. Hearing disorders often co-occur with other communication disorders, like aphasia or cognitive-communication disorders, and make it more challenging to appropriately engage a patient.

FRAME conversations to optimize patient participation

Strategies to try with specific communication disorders

Aphasia

People with aphasia have trouble encoding and decoding language so using LESS language can help them to understand. This doesn’t mean oversimplifying your message – just use plain language and as few words as necessary to get it across. Response choice questions may be more effective than open-ended questions.

Although all language modalities may be affected, they are probably not all affected to the same degree.  Offer non-verbal strategies that match areas of strength, like writing for someone with Broca’s aphasia. Your gestures and body language and pictures or key word writing can also help your patient understand your message.

If you are concerned about whether communication is working, you can establish that your patient understands and that you can trust their responses by asking simple yes-no questions that you know the answer to, such as their birth date or the name of their spouse.  Avoid questions such like “do you understand what I’m saying” since that is what you’re trying to assess.

The video below was created by Dr. Michael Burns, a University of Washington Speech and Language Pathology professor who appears with Don, a stroke survivor with aphasia. Notice the variety of different communication modalities used as they discuss Don’s communication in the healthcare setting.

Speech disorders

People with speech disorders may need a little extra time. If they slow down their speech, it is often easier to understand. If you only understand part of what was said, summarize what you understood so they can repeat only what was missed. Don’t pretend that you understood if you did not – it will often be clear that you didn’t and you can quickly lose a patient’s trust.  

If speech isn’t working, consider mixing communication modalities. An alphabet board or pen and paper could be good options for people with speech disorders who have intact language. 

Cognitive communication disorders

People with cognitive communication disorders have difficulty processing or recalling information and may be easily distracted. Before providing important information, capture their attention by saying their name or touching their hand or arm. Important information should also be ‘backed up’ with material they can refer to later. Electronic or printed visit summaries should be written in a clear and straightforward manner. Other written references may be helpful if they’re easily understood. Family members can also be included as a backup system.

In this video clip, Mike, a traumatic brain injury survivor talks about different strategies that help him remember information. You will notice that Mike has difficulty maintaining his focus on the topic and he shares that he has difficulty remembering information that is only presented verbally. Recognizing Mike’s cognitive communication barriers would allow you to use appropriate strategies to adapt.

Hearing Loss

When working with someone with hearing loss, focus on improving the clarity of your speech, by facing the person, making sure you are at eye level, slowing your rate slightly, and/or adding in any non verbal communication modalities that you think might be helpful. Remember that louder is not always better. Sensorineural hearing loss impacts both clarity and loudness of sound and increasing volume can also increase distortion. Loud sounds can also become painful, especially for those who wear hearing aids.  In the hospital, be sure that hearing aids are in place and turned on.

Learning goals and reflection

Before the workshop, please take a few minutes to reflect on what you have read as well as any experiences with disability in the clinical setting. Have you noticed disparities in how people are treated? Have you seen clinicians adapt their communication to be more effective for their patient?

Definitions and frameworks (for review)

The Americans with Disabilities Act (ADA) defines a person with a disability as someone who has a physical or mental impairment that substantially limits one or more life activities. 

An impairment is a difference in function at the cellular, tissue or body level. Low pancreatic beta cell function causing diabetes and rotator cuff injury decreasing shoulder range of motion are impairments.  Those impairments becomes a disability when they interact with the surrounding environment in a way that doesn’t allow an individual to do the thing they want to do.

In the medical model of disability,an individual’s impairment is seen as the ‘problem’. The impairment causes the disability. The medical profession focuses on treating or curing the individual by altering the severity of their impairment. This view focuses on the individual and tries to adapt the disabled person to lead a more ‘normal’ life. In other words, the disabled person needs to adapt to fit into the world as it is.

Contrast this with the social model of disability, which posits that disabilities are due to societal barriers, that people become disabled due to a lack of resources and access. Although they may have functional impairments or limitations, these do not have to lead to disability.  Inaccessible architecture and transportation, discrimination and bias, segregation, lack of useful education and employment opportunities, and poverty all contribute.

The Americans with Disability Act is a civil rights law that prohibits discrimination and provides equal opportunity for persons with disabilities in employment, government services, public accommodations, commercial facilities, and transportation.  Although it relies on the medical model of disability to classify people with impairments as disabled, it also seeks to create a more even playing ground and to address some of the issues highlighted by the social model of disability.