|About the presenters: Bob Quesal Ph.D., CCC-SLP, is a professor at Western Illinois University. He was a member of the Steering Committee for ASHA's Special Interest Division 4 (Fluency and Fluency Disorders) from 2001-2004. He is recognized as a Fluency Specialist by the Specialty Board on Fluency Disorders. His research, in collaboration with Dr. Scott Yaruss from the University of Pittsburgh, focuses on assessment multiple outcomes of stuttering treatment, and assessment of stuttering outcomes from the perspective of the speaker.|
(Portions of this essay are based on a panel presentation from the 2003 American Speech-Language-Hearing Association convention entitled "Understanding the speaker's experience of stuttering.")
Most people are probably familiar with Evidence Based Practice (EBP), a topic of considerable discussion and a bit of controversy in recent years in speech-language pathology. EBP is discussed in some detail on the American Speech-Language-Hearing Association (ASHA) website, since it has considerable implications for speech-language pathologists and they way they do their jobs. The ASHA website says the following:
There is an abundance of definitions of evidence-based practice (EBP). Fortunately, most of them say essentially the same thing. The most well known definition is that put forth by David Sackett and colleagues:
"Evidence-based medicine [sic] is the integration of best research evidence with clinical expertise and patient values." (Sackett, D. et al. Evidence-Based Medicine: How to Practice and Teach EBM, 2nd edition. Churchill Livingstone, Edinburgh, 2000, p.1)
In 2004, ASHA's Executive Board convened a coordinating committee on evidence-based practice. This committee, charged with assessing the issue of evidence-based practice relative to planning needs and development opportunities for ASHA, used a variation of this definition:
The goal of EBP is the integration of: (a) clinical expertise, (b) best current evidence, and (c) client values to provide high-quality services reflecting the interests, values, needs, and choices of the individuals we serve. [http://asha.org/members/ebp/]
In stuttering, much of the "discussion" of EBP has tended to focus on the (b) element of ASHA's definition. That is, a number of recent articles about EBP have tended to focus on the available evidence for stuttering treatment and the treatments that have the best "evidence" to support their efficacy. To some extent, what this has led to is a situation in which the proponents of treatments that, ostensibly, have the "best evidence" are ready to conclude that those treatments are the ones that should be used (apparently exclusively).
Perhaps more troublesome is the attitude taken by some authors suggesting that those people who do not have "normal" fluency are either victims of incompetent therapy or incompetent therapists, or are simply too lazy to apply what they have learned in their "evidence-based" treatments.
The statements I make here are based on readings from journals and newsletters, as well as presentations at meetings and conventions. I realize that it is often difficult to understand the scientist from his or her writing or public persona. Scientists have to be (or at least are supposed to be) dispassionate and objective, and therefore some of their humanity may be lost in their scientific writing. As Ziman (1960) points out:
As everyday persons, in college or office, [scientists] are perhaps more realistic, more ready to examine a problem in direct rational terms, than those trained in the literary tradition, but this can sometimes lead them into disastrous insensitivity to the less tangible values of personality and community [emphasis added]. Confusion has arisen because we can never really enter the private mind of the scientist at work, following hunches, turning over and over a few uncertain clues, limited by prejudices and misconceptions, wasting months and years after false scents; we judge him only through the public mask that he puts on to write his papers, when all seems good sense, cold logic and brute facts. An honest admission of chance or intuition as his guide would not help to persuade the world that he had the truth; he must paper it over and bolster it up with impersonal objective rationalizations. The apparent suppression of subjectivity in scientific writing is the bed-side manner of the trained professional; it does not represent a lack of pride, prejudice and passion in the man.
Of course, Ziman is talking about the "scientist" in the sense of what Wendell Johnson called "The Sciences": physics, chemistry, etc. One of the problems we face in our "science" of Communication Disorders is that we are dealing with people, not masses and molecules. I have believed for a long time that people make our science somewhat messy, because they don't behave in the lawful ways that other things do. When I teach Speech Science, for example, I try to get my students to appreciate that because sound behaves in lawful ways, we can predict how it will resonate when we introduce it into a tube. Unfortunately, people don't behave in such lawful ways, and therefore it is often difficult to predict how they will behave, regardless of how much we would like to think that we could.
The point is that as we take our first steps down the road of evidence-based practice in stuttering (and they are first steps, regardless of what some people would like to suggest or believe), what seems to be lacking in the "scientific" discussion is empathy. I believe that as much as evidence-based practice, we need empathy-based practice.
Empathy is defined in a number of ways. A quick Google search turned up this sample of definitions (presented here, roughly, in a less to more colloquial order):
"The action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner" [from Merriam-Webster's Online Dictionary <www.m-w.com>]
"Intellectual and emotional awareness and understanding of another person's thoughts, feelings, and behavior, even those that are distressing and disturbing. Empathy emphasizes understanding, sympathy emphasizes sharing, of another person's feelings and experiences" [from Dorland's Medical Dictionary <www.mercksource.com>]
"The ability to share someone else's feelings or experiences by imagining what it would be like to be in their situation" [from <www.freesearch.co.uk/dictionary>]
"Understanding and entering into another's feelings" [from <www.wordreference.com>]
"Identifying oneself completely with an object or person, sometimes even to the point of responding physically, as when, watching a baseball player swing at a pitch, one feels one's own muscles flex." [from The New Dictionary of Cultural Literacy, Third Edition <http://www.bartleby.com/>]
"Putting yourself in other people's shoes" [from <www.urbandictionary.com>]
At the outset, let me emphasize that most people in the field of communication disorders do have empathy. We can still ask, however, why might it be difficult for some scientists (and clinicians, for that matter) to "put themselves into the shoes" of their clients who stutter. The simplest explanation is that they have chosen to focus on the most easily observable and (relatively) easily measurable aspect of stuttering - surface fluency. To the thinking of some, the primary symptom of stuttering is disfluency, the "patient's" primary complaint is disfluency, all people who stutter want to speak fluently, and therefore therapy should focus on fluency. Logically, outcome measures should also focus on fluency as well. If your treatment leads to "normal" fluency, it is efficacious; if it does not, it isn't. Studies are conducted, treatments lead to "normal" fluency in many of the subjects, and the treatments are deemed "efficacious" and "evidence-based." In some people's minds, once a treatment has earned the "efficacious" designation it achieves a nearly mystical status. If the treatment fails to work, it is either because it was delivered incorrectly ("blame the clinician") or the person to whom the treatment was delivered failed to do it correctly ("blame the client"). In no case can the treatment be blamed for failure - after all, it is "efficacious" and "evidence-based."
What this thinking fails to acknowledge, of course, is that no treatment has been shown to be efficacious for all people who stutter. Even in studies where a high success rate is shown, there are at least some subjects who fail to respond to the treatment. These individuals are typically excluded from the outcome, euphemistically referred to as subjects who "failed to comply" or perhaps "voluntarily withdrew."
Another, perhaps more basic reason for people finding it difficult to empathize may be found in the way everyone learns empathy - from experience. I imagine that nearly everyone, when they were young, imagined how they would respond in a given situation. For example, "If I were pulled over by a cop, I'd..." or, "If my grandmother died, I'd..." and then, based on somewhat limited experience, we try to imagine how we would respond. Then the event actually happens and, more often than not, the way we thought we'd respond is quite different from the way we do respond. That is because the actual situation is so much different from the imagination of the situation - the emotions are more real, the implications are different, the consequences are different. This happens a few times and we realize that it is difficult to accurately predict our behavior in situations that we have not experienced. So we become a bit more cautious when we think we really understand what someone is going through. Over time, we do gain more empathy because we have more experiences on which to draw. At the same time, however, we realize that there are some situations that we may never fully experience. People who lack empathy seem to have missed this life lesson. They feel that they can accurately determine how another should react and feel when faced with something like stuttering. Instead of trying to put themselves in the other person's shoes, they try to put the other person in their shoes. "I can talk fluently and it's not that hard." "I used to stutter and I don't now, so it's easy to stop." "When I am disfluent, I just gather myself and I can become fluent - why can't the stutterer do that?"
Perhaps another explanation is that some people are simply incapable of empathy. One of the symptoms of Narcissistic Personality Disorder is that the person "lacks empathy: is unwilling to recognize or identify with the feelings and needs of others" (<http://behavenet.com/capsules/disorders/narcissisticpd.htm>). I wouldn't want to suggest that scientists are narcissistic, but in some cases it may be a reasonable explanation. Unfortunately, if people are incapable of empathy, that does not bode well for their ability to develop it.
Regardless of why some people may lack empathy, there is a more overarching reason for why it should be part of our studies of treatment outcomes. In "empathy-based" treatment, we would pay more attention to those who do not respond to particular treatments. In fact, the focus would be on determining why certain people do not respond to treatment (even a small percentage) rather than pretending that the treatment works for all. The focus would be on tolerance of a variety of therapies, rather than the promotion of a few. And the focus might be on having more tolerance for imperfect fluency, particularly for those individuals for whom numerous treatments have not been successful.
Do we need evidence to support our treatments? Without question. Do we need to make sure our treatments are efficacious? Without a doubt. Do we need to empathize with those we are trying to help? I sure hope so. Do we have all the information we need to determine which treatments are best for all people who stutter? I don't think we do right now. There is still a lot of work to be done.
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