Adopting New Voices: Supporting Nonspeaking Patients After Brain Injury

A screech of brakes, a burst of shattering glass, and the double collision of a young woman’s head between steering wheel and headrest. That was all it took to incur a brain injury and rob 20-year-old “Sarah” of her independence. After the accident, Sarah gradually emerged from a coma. She was alert and looked around the room, but could not move her head, limbs, or hands. She could not walk, care for herself, or even feed herself. But the injury had taken away even more than that. It left her unable to speak.

Sarah was trapped in a body she could not control, but she still had emotions and desires. She often became tearful as her basic biological needs went unmet, as she watched hospital staff look across her bed and speak to her family rather than her, and as she listened to her parents decide on her care—without her.

Communication Impairment After Brain Injury

Sarah’s experience is far from unique. An estimated 2.8 million traumatic brain injuries (TBIs) occur annually in the United States, and many result in significant communication impairment across a spectrum that can range from limited speaking to apparent disorders of consciousness such as comas.¹ Research suggests even patients with the most severe disorders of consciousness may have preserved thoughts and feelings. Up to 100,000 patients with brain injuries in the US who appear unresponsive may retain some level of awareness.²

As Sarah regained consciousness, many of her impairments became barriers to communicating. Brain injury can disrupt communication in multiple ways, involving any combination of affected motor speech function, receptive language, expressive language, oculomotor function, respiration, phonation, fine motor skills, gross motor skills, and motor planning. Yet some of these functions are almost always preserved.³ A patient who cannot produce intelligible speech after brain injury may still retain intact abilities that support communication—hence, the preferred precision of the term nonspeaking to describe these patients, rather than the blanket implications of nonverbal.³

Discovering each patient’s intact communication abilities requires collaboration between patient, family, and care team, including the mental health clinician, speech-language pathologist, and occupational therapist. They work together to compile a set of communication tools compatible with that patient’s unique combination of preserved strengths. The team effort creates a personalized communication system that can prove vital to the patient’s emotional well-being.

The Mental Health Toll of Being Unheard

Sarah eventually learned to communicate simple yes or no answers by turning her head, but she had no way to express more complex thoughts and emotions. Others were still interpreting her feelings and making her choices, and Sarah grew increasingly frustrated.

Research suggests that functional communication ability—and language functioning to a lesser degree—predict psychological wellbeing and social health. Retaining cognitive awareness while losing the physical ability to speak can cause immense chronic frustration and psychological stress. Because nonspeaking patients cannot use oral speech to express their inner thoughts, pain, or emotional distress, frustration combines with the effects of neurological damage from brain injury to dramatically elevate psychiatric risks.⁴ The loss of functional communication following brain injury is strongly associated with depression, anxiety, social isolation, and diminished quality of life.^4,5

But in spite of these drastic emotional effects, the inner experiences of nonspeaking patients are frequently underassessed. This may be due in part due to a reliance on verbal self-report in standardized psychiatric instruments. Mental health clinicians may be tempted to reach for the GAD-7 or PHQ-10 rather than a visual choice-based instrument, such as the Visual Analogue Mood Scales (VAMS) or the Dynamic Visual Analogue Mood Scales (D-VAMS). Moreover, picture-based emotional scales like these can be helpful for assessing emotional states, but a visual tool is not a one-and-done solution. It must be paired with specialized skills for communicating with nonspeaking patients.

The Power of Pragmatics

A mental health clinician is expert at observing nuanced behaviors and micro expressions. A nonspeaking patient’s blink, smile, furrowed brow, head turn, or flat stare, or their behavioral signs, such as sighing, wincing, or rubbing their body, can convey strong messages and may be their only method of communication.⁶ It is important to accept any gesture or bid for attention as meaningful. Still, interpreting the patient’s behavior is only half the interaction.

Partners’ social cues become amplified in the context of communication impairment. People with aphasia interpret nonverbal cues from communication partners better than those without language impairment, likely due to enhanced recruitment of underutilized language areas in the brain to sharpen emotional processing.⁷ Given nonspeaking patients’ potential for heightened sensitivity to nonverbal communication, it is important for clinicians to demonstrate respect. A supportive clinician takes the extra step to sit at eye level and make eye contact, assumes a pleasant expression, and uses a normal volume and tone of voice. They also utilize a framework of accommodations shown to benefit patients with communication disorders.

The FRAME program is a tool taught to medical students at the University of Washington.⁸ It helps clinicians communicate effectively with patients with communication disorders, and can be successfully applied with nonspeaking patients. Before seeing the patient, the clinician familiarizes themself with the patient’s existing communication methods, as well as spared abilities that may support communication. On meeting the patient, they reduce their rate of speech to support understanding and allows the patient time to process information and form a response. The clinician assists communication—for example, by confirming correct understanding. FRAME communication advocates using a mix of aids, including gestures, picture boards, writing, or drawing. Engaging the patient is also essential for respecting their autonomy. Guidelines for engagement include speaking directly to the patient before addressing family members in the room, incorporating social banter, providing full patient education, and asking the patient whether guessing feels acceptable or rude.

In addition to these guidelines, questions require special attention when counseling a nonspeaking patient.

Crafting a Question

Questions posed to nonspeaking patients need careful crafting. Most nonspeaking patients benefit from simple questions, asked one at a time, with extra time to process and respond. A clinician also must take any communication tools the patient uses into account in order to form a question they can respond to successfully. If the patient’s tools allow only yes or no responses, the clinician must resort to a closed question rather than an open-ended one. If the patient uses a tool with expanded communication, the clinician should familiarize themself with its customized vocabulary to ask questions the patient can answer with the limited words or phrases available. Still, even with a perfect question, a conversation can derail into confusion.

Fixing a Breakdown

When communication breaks down, a structured approach can help reduce frustration for both partners. With an approach like the PURE method, the speaking communication partner guides joint problem-solving, starting by expressing their positive intent in the interaction.⁹ They then name what is unsuccessful and offers the patient a reasonable alternative for clarifying, such as pointing or using a picture. The speaking partner then leverages success by giving an example of a way the patient could use the alternative in future interactions.

Joint problem-solving does not always work. Like anyone, a nonspeaking patient has expansive and varied wants, needs, and thoughts, and a clinician cannot always deduce them. But the effort to engage in joint problem-solving, paired with validating statements, can become intuitive with practice, and shows a level of regard most patients appreciate.

Augmentative and Alternative Communication

When Sarah transferred to a postacute rehabilitation program, her speech-language pathologist placed a challenge in front of her. It was a speech-generating device.

In the absence of oral speech, many patients come to rely on augmentative and alternative communication (AAC) tools or devices. AAC encompasses all communication methods that supplement or stand in for speech, from low-tech tools like alphabet boards, manual picture communication boards, and yes or no cards to high-tech speech-generating devices like Sarah’s, which convert a text or icon selection into spoken output. The goal is not to replace oral speaking, but to add to communication while speech recovery may be ongoing.

AAC tools are selected based on a patient’s preserved abilities. A patient with some hand function may use a communication book or tablet-based application. A patient with limited limb function but intact eye tracking may benefit from an eye-gaze board or a high-tech device with eye-tracking access. A speech-language pathologist will conduct a formal AAC evaluation to find the best fit, but mental health clinicians will benefit from familiarity with the wide variety of communication options available to nonspeaking patients, in order to use these systems effectively during assessment and intervention.

For Sarah, the challenge in using her speech-generating device reached beyond regaining the motor control to select icons. She wanted to communicate—but not like that.

The Problem of AAC Abandonment

Using AAC tools, including speech-generating devices, significantly improves functional communication, enhances cognitive and language rehabilitation, decreases depressive symptoms, and enhances overall quality of life for patients with acquired or traumatic brain injuries.¹⁰ But, despite these documented benefits, AAC device abandonment is a persistent problem.¹⁰ Patients like Sarah may resist adopting a communication device because of grief over the loss of natural speech, unrealistic expectations for their recovery, or discomfort with being seen using a device they feel stigmatizes them by highlighting their disability.

These patients’ families can inadvertently reinforce their resistance. In many cases, abandoning AAC technology reflects a lack of facilitator support even more than a rejection of the technology itself. Family members may complete sentences for the patient or answer on their behalf, rather than waiting for them to respond using their AAC tools.¹¹ Simple negligence can also have far-reaching effects, as when a family fails to charge electronic AAC devices or bring AAC tools to therapy or community outings. A family may even actively discourage their loved one from ever using AAC tools, believing alternative communication will impede oral speech recovery. Evidence does not support this concern. Rather than reducing patients’ likelihood of regaining speech, using AAC often supports cognitive-linguistic recovery.^10,12

Counseling for AAC Adoption

Mental health clinicians are uniquely positioned to help their nonspeaking patients begin using these alternative forms of communication. Grief and incomplete adjustment to disability are often the primary barriers to AAC adoption. Helping a patient grieve the loss of natural speech, reframe the meaning of a communication device, and build a sense of agency with new forms of communication can meaningfully increase success with AAC.

Spouses and children are often key communication partners for these patients, and must be included in the conversation. It is important for family members to acknowledge and accept the permanent changes resulting from a severe TBI, and to address underlying emotional resistance or denial. They also deserve understanding if they feel overwhelmed by managing new high-tech equipment.¹³ Counseling can help family members adjust to AAC device use by processing their own grief, actively managing relationship shifts, and recognizing how their loved one’s use of AAC can reduce their own stress as care partners.

With training from her speech-language pathologist, emotional support from her mental health clinician, and intensive therapy with her postacute rehabilitation team, Sarah learned to use her speech-generating device effectively. The device became a catalyst allowing her to express preferences, participate in treatment planning, and reconnect with her family. Using AAC reduced her frustration and increased her emotional well-being.

Every nonspeaking brain injury patient deserves the same chance Sarah had. Mental health professionals who look past loss of oral speech and see the communication potential that remains, and who assume competence, collaborate with team members, and develop AAC literacy, can make a decisive difference in nonspeaking TBI patients’ clinical outcomes and quality of life. This is the power of persistently believing in every patient’s potential for meaningful exchange, even without words.

Ms Colombo is a Texas-based speech-language pathologist at Centre for Neuro Skills (neuroskills.com) in the Dallas-Fort Worth area. Ms Abler is a California-based bilingual clinical evaluator and speech-language pathologist with Centre for Neuro Skills. Both are certified brain injury specialists (CBIS). The authors report no conflicts of interest.

References

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