Are We Listening? How Hard Do Our Patients with Sensory Deficit Have to Work to Get the Communication Support They Need?

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One of the most rewarding activities for a language program manager is to support patients with low vison and low hearing so that they can communicate well with their care teams. Every clinic system and hospital serves some Deaf patients, some blind patients, some hard-of-hearing patients, some patients who do not speak, and some patients with multiple communication challenges. These patients may come from English-speaking families or foreign-language-speaking families. Some patients may also have physical disabilities or mental illness which makes access to healthcare services more challenging than usual.

The first step in providing great communication support to these patients is to find out what forms of support they prefer, and why.

Language program managers who have patient care experience plus customer service experience have a head start. It is essential to be familiar with and have access to patients’ electronic medical records, as well as to understand the clinical care processes which take place throughout the organization. It is also critical to orient oneself to the history and culture of communities with sensory deficit in this country and in other countries. Meet with the Deaf and Blind advocacy groups in your state, and subscribe to their free newsletters. Get to know as many of your Deaf and blind patients as possible, to welcome them and to hear what is important to them.

How do we begin to understand the communication support needs of any particular patient? It is very helpful to know the clinical background of the patient, including but not exclusive to his communication needs. If the patient uses ASL, is he deaf or Hard-of-hearing (HOH)? Does he voice for himself? How is his vision? Does he have cerebral palsy, a brain tumor, or any serious physical or mental conditions? Does he have support at home, transportation, communication equipment such as a phone or videophone? Is he signed up with the health portal? Does he no-show for lots of appointments, perhaps indicating he needs reminder calls via VRS? Does he get most of his care through the ER instead of through a clinic? The need for communication support for an individual can increase over time, increase suddenly, manifest only in certain situations such as during an MRI study, appear suddenly due to accident or disease, decrease due to medical interventions, or decrease due to the fact that the patient is no longer making decisions for himself.

Many people in the United States and other countries were born deaf or experienced an illness which damaged their hearing ability before they learned a lot of spoken language. Some of these people were taught sign language by their families or in school. Others had no exposure to formal sign language. They may or may not have developed a repertory of signs or written symbols with which to communicate with their family and community. This is called home sign. A deaf patient will be clear about whether he uses sign language or not. Some people prefer to use writing back and forth with their care team except for complicated discussions, when they prefer sign language.

There are different kinds of formal sign language which are widely used in America.

These have very different structures from each other, just as Russian and Chinese spoken languages are different from each other. It is important to ask which kind of sign language the patient uses: American Sign Language, Signed Exact English (SEE), Pidgin Signed English (PSE), or a formal sign language from a different country, such as French or British Sign Language. American Sign Language is based on visual symbols for ideas and its structure is completely different from the structure of English. To the contrary, Signed Exact English is English, spelled out letter by letter and in the same sentence pattern as English. Pidgin Signed English is a combination of ASL signs for ideas and ASL sentence structure, with a fair amount of spelling of specific words for clarity.

In order to see another person signing, the patient’s vision must be somewhat intact. If a person who relies on sign language experiences vision loss, there are two main ways to continue to use signing for communication: Close Vision ASL, and Tactile ASL. Some ASL interpreters are skilled in Close Vision ASL.

Close Vision ASL

This involves signing quite close to the patient, with recognizable ASL signs, but with the hands kept high against the chest and fairly centered on the torso, so that the patient can see all of the signs in a small space and close up. It is extra important for the interpreter to wear clothing that contrasts with her skin tone so that the signing is visible. Lighting in the environment may need to be adjusted to help the patient see the interpreter. The person who prefers a Close Vision ASL interpreter will sign for himself back to the interpreter, or he may voice directly back to the care team if he has that ability. Some patients with very poor vision prefer to keep making the effort to see a Close Vision ASL interpreter rather than having anyone touch them, as a Tactile interpreter does.

Tactile ASL

Tactile ASL may be requested by patients who cannot see signing done by an interpreter at all. Other patients, who can still see to some small extent, find it exhausting to try to make out signing with their vision, so they request Tactile and can rest their eyes. Tactile ASL involves placing the patient’s hand on the interpreter’s hand, and then making the signs. The patient can feel the signs being made by the interpreter. The patient does not have the benefit of the full range of expression that the interpreter is making, which includes facial expressions and other body language which amplifies the meaning of the hand signs. The patient may use ASL to express himself to the interpreter, or may voice for himself if he has that ability.

Certified Deaf Interpreters + ASL

Some patients are deaf but have never learned ASL. This might happen to a child or to an adult. The person might be from another country or born in America. It can be very frightening for a person to find himself in a health care environment and not know what is happening while at the same time needing care of some kind. Care staff or the patient’s family may request a team of Certified Deaf Interpreter (CDI) plus an ASL interpreter to help communicate with such a patient. The CDI is himself deaf, and has had specialized training to communicate with people who have what is termed “low language skills.” That means that the patient does not use a formal language that other people use. The patient may be highly alert and ready to look for meaning from the CDI, or he may not pay much attention to the CDI at all. The CDI uses intuitive signs to convey as much of the provider’s meaning as possible to the patient. The CDI is alert to expression from the patient. Being deaf himself, the CDI communicates with the care team via the ASL interpreter. The CDI signs ASL to the ASL interpreter, who voices in English to the provider. Some patients who do sign but have little schooling and minimal understanding of medical science find it very reassuring to have both the CDI and the ASL interpreter present during medical encounters.

ProTactile

DeafBlind people have another option for communication which is growing in popularity, called ProTactile. This is a new language based on touch between the people talking with each other. The touch is directed to various parts of the conversation partner’s body, and is not limited to just the hand as with Tactile. More and more ASL interpreters are going to class to learn this new method of communication.

No ASL? No problem.

Now let’s consider the needs of patients who are deaf due to an injury or disease which occurred after they acquired English spoken language. For example, a 50-year-old person has a stroke which obliterates the auditory center. Or a 32-year old person has recurring neurofibromatosis and thus tumors in the brain which cause deafness. Neither of these patients is likely to learn ASL, considering that ASL is a completely new language and that these patients are dealing with major brain conditions.

Deaf

Deaf patients who do not use ASL will indicate their preference for language support. They may prefer different methods of support for different types of encounters. Some patients prefer to have their provider and care team write content down so they can read it. This may be the case even if the patient struggles with reading. He is at least sure of what he can read on the page. Pictures, diagrams, and icons are very helpful to incorporate into the written content or to add as additional materials. Other patients are strong readers and want to get full technical information from the provider. For detailed discussions and care planning the patient may prefer to have a CART specialist present in the room or present remotely over the computer. CART is Communication Access Realtime Translation. The CART specialist is like a court reporter, and types everything that is said by all parties in the room. The patient can see the content of the conversation as it happens, on the computer screen.

Speech Impairment

Patients with speech impairment due to injury, disease, or a tracheostomy may request specific methods of accommodation such as a writing board or access to a computer with a word processor to make themselves understood.

Blind

Blind patients may request assistance with filling out forms, with navigating patient care areas, and with carrying out instructions during care procedures. Blind patients frequently request a sign indicating the fact that they are blind be placed on the door of their inpatient room so that care staff then take the initiative to accommodate them. Patients with low vision have preferences on how they receive written materials. They may request having documents sent to their email account as Word files which their computer can read to them, or they may request Braille format, or they may request large print format.

Speech Impairment

Patients with speech impairment due to injury, disease, or a tracheostomy may request specific methods of accommodation such as a writing board or access to a computer with a word processor to make themselves understood.

Hard-of-Hearing

Patients who are not deaf but who are hard-of-hearing may request accommodation such as an amplifier or writing tools for the provider encounter. They often specify that the care team member should face him and speak clearly. Patients with hearing aids may require accommodation for hearing only when they have a surgical or MRI procedure and do not have their aids in.

Previously Deaf

Patients who used to be deaf but who now have some hearing due to a cochlear implant may request an ASL interpreter when they are in a noisy environment like the ER or physical therapy gym. Some patients with cochlear implants also need ASL interpreter support when their implant is being tuned or when it is not functioning well.

And so on. Patients are very clear about what helps them communicate best in various circumstances. The care team must document the specific accommodation(s) requested by each patient in his or her chart. The patient should never have to repeat his needs once he has outlined them. Because accommodation needs can be quite complex and specific, it is best to use all available variables in the chart to document them. Preferred language should be as exact as allowed by the variable menu: ASL, Close Vision ASL, Tactile, CDI, PSE, SEE. Interpreter Needed should show whether or not an interpreter is needed. Some deaf patients are non-verbal and do not interact with the care team. Or they prefer note-writing, so no interpreter. Use the permanent Comment or FYI or Alert text field that can be seen on the header of the EMR to document details such as: “Patient has cochlear implant, uses ASL interpreter for some appts. Ask patient each appointment.”

Does the family have a communication need?

An additional component in assuring communication support is to take into consideration the patient’s family and support network and what their communication needs are. Here again we will offer some examples based on real people. Many hearing or deaf children have one or two Deaf parents. Some disabled patients who do not interact with their caregivers have Deaf attendants who accompany them to medical visits and make decisions for them. Patients who themselves are hearing may have a Deaf partner who accompanies them to appointments. It is important for the healthcare organization to document these needs in the patient’s EMR, and then it is just as important to check for each appointment to see if a Deaf or HOH person will accompany the patient to the upcoming appointment.

It bears repeating that it is important to document preferences so that the patient does not have to advocate for herself every time she contacts the organization. Every staff person and every provider should be able to see from the electronic chart exactly what kind(s) of communication support the patient prefers.

Mind the Gaps

There are some process gaps that pop up when providing language support for patients with sensory deficit. For example, when a patient makes an appointment directly through the patient portal, without talking to a staff person, staff may be unaware that a Deaf person has made an appointment until the patient shows up for his appointment, and no interpreter will be there waiting. Or the VRI device may already be in use for a different patient. Clinics are advised to do pro-active auditing of their future appointments on a regular basis to see if there are Deaf patients coming in. Clinics should also check the settings for sensory deficit and for language need each time a patient makes an appointment, to make sure that the registration of preferences for the person is complete, just as is done for updating phone number, address, and insurance coverage.

ASL interpreter and VRI deployment within physical space in clinics, inpatient units, and behavioral health units needs careful attention. The patient needs to be able to see the interpreter easily. One patient specifically requests a VRI interpreter for imaging studies performed in dark rooms, such as ultrasounds, because it is easy to see a backlit VRI interpreter and it is difficult to see an onsite interpreter in the darkness.

Add it to the Chart

The patient with sensory deficit is most likely to miss having needed language support when he is referred to a specialist, when he presents at the Emergency Room, when he needs a Day Surgery procedure, or when he is admitted to Inpatient status. These new care teams will have no history with the patient, and will depend on what has been documented in the chart and what the patient can tell them about his needs. Best practice, on top of having all accommodation needs clearly documented on the EMR, is document accommodation needs on every referral sheet, every surgery packet, every pre-registration for Labor and Delivery.

The language program manager may take a critically important role when Deaf or blind patients are admitted or undergo surgery. Care teams are often eager to help but do not know how to accommodate a patient in their environment of care. For inpatient visits, negotiate, discuss details of the clinical picture with the care team. Is the patient coming out of surgery? Having a baby? Will she be on a critical care unit with care throughout 24 hours? Is this an end-of-life admission with a heavily sedated patient? Is just-delivered mom hearing, but dad is Deaf and spends many hours on the neo-natal intensive care unit with his new baby? Discuss patient goals for a good experience with the patient and support network, looking at the various therapeutic aspects of communication for the patient. Often the patient will request certain accommodation without knowing that there is a better way to achieve her goals. For example, a Deaf pregnant woman anticipating her post-partum stay might request having an ASL interpreter sit in the post-partum room all night to let her know if the baby cries while she is sleeping. Instead, you can offer a special alarm designed to wake deaf mothers of babies.

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