Reflections on the aphasia bill of rights.
Liechty, John A.
Garber, Donald W.
|Publication:||Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2011 American Association of Neuroscience Nurses ISSN: 0888-0395|
|Issue:||Date: Feb, 2011 Source Volume: 43 Source Issue: 1|
Specialized nurses have specialized training, but that does not
always translate to increased empathy. Some emotional distance is
necessary, of course, but there needs to be a balance. For people with
aphasia, communication is an ongoing struggle, and connecting with
medical persons can be difficult. I have lived with aphasia for more
than 30 years, and although I can function day to day, there are still
Just last week, for example, at the psychiatric hospital where I work as a housekeeper, a patient left a mess on the floor after popping some popcorn. He had scattered some unpopped kernels. I wanted to say something to him, but I could not find the words.
My hope is that nurses and other medical practitioners will identify with this straggle and show patience when a patient who has aphasia has difficulty with either expressing a word or understanding a concept.
Recently, I ordered a sandwich at a restaurant. I asked for a turkey sandwich with no onions, potato chips, and coffee. When I was served the sandwich, I noticed something was missing. But I could not say the word for what I wanted. I could not say "pickle." I know the word, and I eat pickles. But I just could not say that one word. After a minute, some response in my brain said, "Ah, it's pickles," and then I was able to tell the cook.
One common misunderstanding is the failure to differentiate between the event and the condition. A stroke, for example, is a one-time occurrence, whereas aphasia is an ongoing condition, a condition that is always with us.
I remember one day when a new coworker started talking with me at my workplace. "What do you do?" she asked. "I'm a housekeeper," I said. "I have aphasia." "Oh," she said. "You mean you had a stroke." She did not understand. Yes, I had a brain injury, but my struggle is much more than that. It is the daily reality of isolation, of not having a voice. It is frustration, sometimes despair.
Several years ago, the National Aphasia Association's board of directors passed the "Aphasia Bill of Rights." It describes what people with aphasia deserve.
People with aphasia have the right to
1. Be told, as soon as it is determined, preferably by a qualified speech-language pathologist, both orally and in writing, that they have "aphasia" and given an explanation of the meaning of aphasia.
When I experienced a burst aneurysm in my brain 30 years ago, I knew nothing about aphasia. Is it a perfume? Is it a new car? I could not even say "aphasia." But slowly my speech improved, and I learned about aphasia. I heard about the resources of the National Aphasia Association. I helped to start an aphasia support group. I learned that other persons with aphasia did not know what their condition was called. I learned that they did not know what resources were available for them.
2. Be provided, upon release from the hospital, with written documentation that "aphasia" is part of their diagnosis.
During the weeks and months of therapy after my surgery, I did not recognize my condition. I knew that I had language difficulties, and I was working with a speech therapist to address those as well as an occupational therapist to learn coping skills. But it was not until a chance encounter with a speech pathologist at my place of employment that I began to understand "aphasia." She recommended that I get more help at the Communications Disorder Clinic at University of Michigan.
I could not read, and so a written diagnosis was no help for me. And while my speech pathologist may have mentioned "aphasia" to me, I could not comprehend its meaning. In some cases, interacting with the caregiver or a member of the family will be the best route to convey this information.
3. Be told, both orally and in writing, that there are local resources available to them, including Aphasia Community Groups in their areas, as well as national organizations such as the National Aphasia Association (NAA).
I did not know anything about NAA until 13 years after my brain injury (1991). A local speech pathologist gave me the telephone number for NAA and suggested I get in touch. That was about the time when the vocational rehabilitation group provided me with a computer and voice recognition software. That opened up my world! I became very familiar with the NAA Web site and began answering questions from across the country in the "Pen Pal" section of the Web site.
At the urging of NAA, I was involved in forming a local aphasia support group. I had been part of a stroke support group, but that was an unsatisfying experience. With my condition, I could not follow what the speakers were saying. When the aphasia support group started, we invited speakers in for a while as well but soon decided it was more helpful to use each other as resources--sharing our struggles and triumphs and support for each other.
Some aphasia support groups are sponsored by universities, some by hospitals. Unfortunately, not all the sponsoring agencies have the resources to provide adequate staff for the group.
I would hope that people with aphasia would not have to wait as long as I did and would not have to "do it on their own." 4. Have access to outpatient therapy to the extent deemed appropriate by a qualified speech-language pathologist.
After a stroke or other brain injury that results in aphasia, patients and their families have a lot to learn. Although communication ability may increase over time, aphasia is not a condition that can be "cured." Hospitalization can be a short interim, but aphasia is a lifelong condition. What is needed is for patients (and caregivers) to accept the condition and to learn the coping skills needed to function day by day.
5. Give their informed consent in any research project in which they are participating.
I have not been involved in any research project, but I know from experience that understanding the meaning of legal documents is difficult enough for people with aphasia. People with aphasia need help understanding what they are being asked to do and what any negatives might be. I believe that research is important, but people with aphasia should not be taken advantage of.
6. Demand that accrediting health care agencies and health care facilities establish requirements for and competency in caring for people with aphasia.
I say this over and over again: "People just do not understand aphasia!" With this appalling lack of awareness and understanding in the general population, the need for training almost goes without saying. This applies to frontline caregivers as well as the professionals--from emergency room personnel to admissions desk to outpatient clinics and to all doctors and nurses. And it goes beyond understanding the condition to knowing how to listen and wait and rephrase. Staff need to understand the challenge for persons with aphasia,
7. Have access to information in their most functional language through a qualified professional, or through an interpreter and/or printed material, and access to culturally sensitive services when the person with aphasia speaks a language different from English and/or is from an ethnically/ culturally diverse background.
I have spoken English all my life, so I have less of a problem understanding the dominant language of our culture than someone who learned English as a second language. Again, the communication difficulties that aphasia creates complicate any exchange of ideas, whether within a culture or across cultures.
About 15 years ago, I was part of a cultural exchange in New York City. A group of 60-65 Japanese people with aphasia came for a visit to the United States and wanted to meet with their counterparts in our country. I heard from NAA about the group's invitation to a luncheon, and eight of us from my local aphasia support group (both persons with aphasia and caregivers and a speech pathologist) made the trip, joining with locals from New York. It was exciting to make the connection, although we had even more language barriers to overcome than usual. I did learn that aphasia support groups have a long history in Japan.
Just like the Bill of Rights to the U.S. Constitution, this bill of rights describes things that we too often take for granted. Fortunately, the forebears who formed our nation had the foresight to write down these basic rights. I am glad that the NAA board of directors had the insight to put together the aphasia bill of rights, so that anyone who interacts with people who have aphasia will recognize their needs and feelings and respond appropriately.
As they interact with patients who have aphasia, nurses of many specialties--orthopedic, gerontological, neonatal, and neurological--need to understand the struggle their patients face. People with aphasia need more time to react to questions or statements. It requires patience to allow the patient to form a response. Wait and then respond. Communication will be better for both the patient and the professional.
Questions or comments about this article may be directed to John A. Liechty, MSW, at firstname.lastname@example.org. He is an advisory board member with the National Aphasia Association, New York, NY.
Donald W. Garber, BA, is a freelance writer and editor.
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