Living with a significant speech impairment means communicating can be frustrating and, oftentimes, cause miscommunication. For this reason, I am selective in what businesses and stores I patronize. However, I do not have that same latitude when it comes to healthcare. I must deal with healthcare professionals as they come, and frankly, many of these professionals appear clueless when interacting with an individual with a speech impairment.
One of many examples is an appointment with a rehabilitation specialist. The doctor told me he would ask me questions, but my husband Darrell (see Figure 1) should respond because “it would be faster.” I was shocked! This was after he spent several minutes chitchatting about what Darrell did for a living—completely unrelated to my appointment.
The specialist expected my husband to speak for me on something as important as my health because he didn’t want to take the time to have Darrell translate what I was saying. He didn’t want to bother attempting to understand my speech pattern either, which is possible with patience applied. Darrell and I proceeded as we typically do: questions were asked, I responded, and Darrell translated where needed. Allowing extra time for effective communication would have been beneficial in this case.
On another occasion, I was at the Emergency Department because of a badly-injured foot. The nurse indicated for Darrell, who also uses a wheelchair, to return to the waiting room because there wasn’t enough space for both power wheelchairs. Hospitals designed with enough space to accommodate people in wheelchairs would absolutely aid in the quality of care received.
Darrell explained that I needed him for communication purposes. But once he relayed how the injury occurred and other necessary medical details, he was again told to leave. The nurse assured him that she would come get him as needed, although none of the other patients’ companions were required to leave.
In that moment I knew my patient rights were being denied. Patients who are deaf wouldn’t (or shouldn’t) be denied access to an interpreter. Non-English speaking patients requiring a translator would also not be denied one.;Yet, I, with a significant speech impairment, was denied my means of communication. Darrell handed me my iPad before leaving, but I wasn’t sure I could coherently type, I was in so much pain.
In this instance, I suffered from only an injured foot. What if it had been serious or even life threatening? Would I have been denied my means of communication?
I am not alone. According to Communication Disabilities Access Canada, “440,000 Canadians have speech and language disabilities that are not caused by hearing loss.” These Canadians might have cerebral palsy, autism, cognitive disability, traumatic brain injury, aphasia after a stroke, dementia, Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease), Parkinson’s Disease, Multiple Sclerosis, or other conditions.
I wish that healthcare professionals would not assume that I am hearing or cognitively impaired simply because they cannot understand my speech. I do hear and understand them even if they don’t understand me. If they are unsure of something, I don’t mind if they ask.
Communication is critical in healthcare. When people are denied the opportunity to communicate in the most effective means possible for them, serious consequences can result. Happily, much can be done to enable patients to communicate as effectively as possible in the moment.
For patients who have existing communication methods in place, use them. This might mean enabling patients to use their own devices, boards, or other communication systems, or ensuring that a communication assistant is present.
For patients who have recently loss their ability to speak, for instance from a stroke or an injury requiring intubation, providing essential healthcare-based picture or alphabet boards, pen and paper, and other communication tools should be standard procedure.
On another trip to the ER, after the triage nurse asked several unrelated questions (including how I grocery shop and shower, even though I presented myself in a fairly well-fed and kept manner), she returned to the registration desk where other nurses had gathered. It was obvious she was gossiping about me; one nurse closed the door when she realized I could hear them. I felt disrespected and violated; humiliated. Why was the same confidentiality not afforded to me as to other patients?
As with any patient, those with speech and language disabilities must be treated with respect and dignity while maintaining confidentiality. If you speak in front of them or anyplace nearby, assume they can hear and understand you because, often, they can.
I implore you to share my experiences with the doctors, nurses, and healthcare professionals you know. Your action in doing so might provide a patient with a way to communicate to indicate pain, eliminate a misdiagnosis, or save a life.
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