Dysphagia and Dementia in Long-Term Care

The September VitalStim newsletter has a case study which illustrates some of the prevailing (albeit misguided) practices in dysphagia management. The disturbing part is that the rationale and recommendations are pretty standard. What follows is not really a criticism of VitalStim, but rather a broader critique of how dysphagia is frequently handled in long term care.

Case Study: Patient with Dementia Responds Well to VitalStim® Therapy

Wendy, a 96-year-old woman with dementia, chronic anemia, HTN, and bipolar disorder, was referred for a dysphagia evaluation secondary to consistent coughing at mealtime.

Well, right off the bat, we should think to look at medications. The patient has dementia and bipolar disorder. Both are frequently treated with meds which may cause or exacerbate dysphagia. "Curing" the dysphagia (i.e., getting rid of the symptom) could be as simple as changing a med or decreasing the dosage.

Previously, she tolerated a regular diet with thin liquids without overt signs and symptoms of aspiration.

So what caused the change? Sounds like it was fairly sudden. Right here we need to put on our detective hats and get to the bottom of the dysphagia. Chalking it up to dementia before examining other possibilities should not be acceptable practice.

Wendy presented with significant coughing episodes with all consistencies after the swallow. Her diet was downgraded to puree with honey thick liquids to decrease risk of aspiration, with a request for an immediate MBSS.

Thickening liquids is NOT an evidence-based practice. There is little evidence that it is helpful and lots of evidence that it can be harmful. Are there situations where it can be beneficial? Sure, although they are a lot fewer and farther between than many, if not most, SLP's seem to think. The biggest problem is that thickened liquids are frequently regarded as inherently "safer" (i.e., less likely to be aspirated and cause pneumonia) than thin liquids. There is no evidence to support this view.

[...] The results of the MBSS indicated heavy premature spillage to the valleculae, profoundly heavy pharyngeal pooling, moderately severe decreased laryngeal elevation and epiglottal inversion. Swallow fatigued, became weaker and increasingly delayed as evaluation progressed. Wendy demonstrated gross silent aspiration with thin liquids and purees, and it was determined she was at an extreme risk for aspiration with all consistencies. She was unable to clear the residue despite maximum cues to cough or clear.

Now, remember, she did cough at meals, so presumably her aspiration was not always silent. "Premature spillage to the valleculae" could be due to loss of oral control of the bolus (very common in this population, in my experience). Was that "pharyngeal pooling" before or after the swallow? I'm guessing after, in which case it was most likely due to the decreased hyolaryngeal movement.

Recommendations included: dysphagia therapy, strictly NPO, and referral to MD for alternative means of nutrition.

Now this is the part where I start to see red. Strict NPO and tube feeding? In a 96-year-old? With dementia? So much for quality of life. Treat the dysphagia, certainly (preferably by determining the CAUSE first). Decrease aspiration risk as much as possible, sure. But NPO and TF? No. Tube feeding has its own set of risks which too many SLP's overlook in an overzealous and misguided attempt to eliminate all prandial (during meals) aspiration.

The family wanted to honor Wendy’s wishes and did not want alternative nutrition, but understood the risk of aspiration with continued PO. Her family, along with Wendy’s physician and SLP, decided the best course of action was to continue current diet of puree with honey thick liquids, and attempt VitalStim® Therapy treatment.

Well, this is a BETTER set of recommendations, but still not great. If a patient has "gross aspiration" of both thin and thick consistencies, what is the benefit of thickening liquids? I would rather a patient aspirate thin liquids (as long as they were not very uncomfortable with coughing) and have a better shot at maintaining hydration than aspirate thickener and have increased risk of dehydration.

[...] Although Wendy occasionally missed VitalStim® Therapy sessions for behavioral reasons unrelated to her dysphagia, after just six treatment sessions she was able to swallow trials of nectar-thick liquids via teaspoon presentation without overt signs and symptoms of aspiration (no coughing or throat clearing). After 16 treatments (total) she was sent for another MBSS with noted overall improvement and recommendations for puree with nectar thick liquids.

"Overall improvement"? That's a little vague. Hopefully the report went into more detail. And "without overt signs and symptoms of aspiration"? How reassuring is that really, when she was observed with "gross silent aspiration" during the initial MBS? Ultimately, I do think it's appropriate to monitor her clinically, given that the original referral was due to "consistent coughing at mealtime," so she is unlikely to be a true silent aspirator.

Another 10 treatments were provided with a diet upgrade to mechanical soft with nectar thick liquids. Wendy was discharged to restorative dining with recommendations to provide supervision to decrease rate of intake and cues to alternate liquids with solids. Two months post-treatment, Wendy continues to exhibit no overt signs and symptoms of aspiration with diet of mechanical soft with nectar thick liquids.

At one point, the patient was tolerating a regular diet with thin liquids. Then something changed (time frame unclear), the SLP got involved, and the patient was put on a modified diet. Although that diet was eventually upgraded somewhat, it is not back to her baseline. I would be reluctant to discharge a patient on thickened liquids unless (1) the etiology of the dysphagia is known, and it is either permanent or progressive, and unable to ameliorated by medication or other interventions, (2) the patient is more comfortable on thickened liquids, or expresses a preference to remain on thickened liquids, and (3) nutrition and hydration are being monitored appropriately and the patient is able to meet his/her needs even on the thickened liquids.

Even though Wendy has not been able to return to a regular diet with the liquids, her family is pleased with her current diet and the knowledge that she can now tolerate PO safely.

So why can't she have thin liquids? Because she aspirates? How about at least trying the Frazier Water Protocol or something similar -- allowing, at least, (thin) water between meals as tolerated. There is no mention anywhere that the patient ever had any adverse effects (e.g., pneumonia) from aspirating. Aspiration is not always dangerous. The risk of adverse effects depends on what is being aspirated, the quantity that is aspirated, over how long a period of time, and the condition of the person aspirating -- primarily, their immune status. The (mistaken) notion that all aspiration is created equal and needs to be eliminated no matter what is responsible for a huge number of inappropriate treatment decisions, with potentially devastating effects for patients.

The total length of time for Wendy’s treatment was five months/five times week with a total of 26 treatment sessions. The primary obstacle encountered was her behavior and the inability to provide treatment consistently, five days per week, as compared to an individual without dementia. Also, her progress was slowed by not being able to perform a home exercise program of oral and pharyngeal exercises.

We have no proof that most of those exercises even work, so it's unclear how much she really would have benefited.

Overall, the experience in working with Wendy was indeed a learning one. VitalStim® Therapy is not appropriate for all dementia patients, but should not be excluded just because of the diagnosis of dementia. Careful analysis should be made with the family, physician, SLP and nursing staff working as a team to determine the appropriateness of VitalStim® Therapy treatment.

Well, of COURSE it's not appropriate for all dementia patients, seeing as (1) not all dementia patients have dysphagia, and (2) not all dysphagia in dementia patients is the same. VitalStim is not appropriate for all patients with dysphagia, period, although you wouldn't really know that by listening to the company (oh wait, they do have "contraindications", but that's a topic for a different post!). Teamwork is an excellent practice, although patients would be better served by first using that teamwork to uncover the CAUSE of their dysphagia before jumping right into treatment.

What goes with a lab coat?

This is a really little, very random pet peeve. In the grand scheme of things, it is not important at all. I shouldn’t let it bother me, since it has nothing to do with speech and doesn’t really affect me, but somehow I can’t seem to help it.

What is it? Jeans. More specifically, jeans and lab coats.

You see, I work in a teaching hospital. We have, in addition to residents, student radiology techs, surgical techs, and nurses, among others. This pet peeve is about the student nurses. In their first year of school, they are assigned to do chart reviews. They show up on the nursing units and read patient charts for their assignments. No patient contact, no nursing duties, just reading charts.

During these assignments, the students wear their white lab coats emblazoned with the name of the nursing school (I assume so the patients don’t think that the hospital lets random people off the street read the patient charts). During their practica, the students will wear white scrubs with the nursing school logo, but for the chart readings, they just throw the lab coat on over their street clothes. Which usually involve jeans.

Which brings me to my pet peeve.

Jeans and lab coats look ridiculous together. They just do. The only thing sillier looking is a lab coat and shorts (which I saw for the first time this summer, of course on a student). If you are important enough to be wearing a lab coat, you are important enough to be dressing professionally, which does not include jeans.

Our hospital dress code forbids jeans for employees (I once even got a talking-to for a [calf-length] jean skirt!), but students are apparently exempt from the dress code. Which I understand for their classes, but if they are out of the classroom, in the hospital to complete their assignments (where patients and visitors can see them, and where they are clearly affiliated with the hospital), shouldn’t they be held to a bit of a higher standard?

Truth in Advertising?

Found on a hospital's website advertising their speech therapy services:

"Our speech pathologists are trained in the leading treatments for dysphagia. Deep Pharyngeal Neuromuscular Stimulation (DPNS) and Vitalstim are offered at our facility. Both of these methods have been proven to be highly effective in the treatment of dysphagia." (emphasis mine)

I guess their definition of "proven" must be different than mine.

I can understand saying that VitalStim has been "proven", seeing as the company touts a 98% improvement rate, and claims that "it's the only dysphagia therapy backed by compelling clinical data." The problem with these claims is that the research they are based on -- the initial study by Marcy Freed -- was so flawed as to be virtually useless. Apparently there is other data as well, which was submitted to the FDA when seeking clearance for the VitalStim device, but as far as I know this data has not been published (at least not in a peer-reviewed publication); if it were that impressive, don't you think they would have published it?

But how anyone can claim that DPNS is "proven" is beyond me. There is no peer-reviewed research. (I believe there is a case series report, but nothing that "proves" it works). And it's not like it's a brand-new approach anymore. The originator of the technique supposedly has data, but once again, why hasn't it been published?

The majority of the evidence used to support these two techniques is anecdotal. Which, granted, has its place, but scientifically, anecdotal evidence is not "proof."

If I were a patient, I would want to know if a therapy that I was paying good money (and time) for was based on little more than anecdote. Not to say that I wouldn't continue such a therapy (well... on second thought, for something as aversive as DPNS, maybe I wouldn't!), but I would want to know. As therapists, we have an obligation to our patients to use their time and money well, and to be forthcoming about our limitations. We should also be well versed enough in the research and scientific basis for our practices that we avoid making wrong or misleading statements such as the one above.

If It Quacks Like a Duck, part 2

So why do people continue to use questionable therapy techniques? Well, for one thing, although ASHA officially does not endorse any products or techniques, some may assume that by granting CEU's, ASHA gives its imprimatur to a course (although ASHA specifically states otherwise in a disclaimer printed on all CE information).

But more commonly, Speech-Language Pathologists rationalize their use with an assortment of “reasons” like those below (note: all of these are actual statements by SLPs regarding such controversial techniques as DPNS and VitalStim). My responses follow each item:

• “We don’t have evidence for most of what we do”
  This is true, in that we have no large-scale randomized controlled trials of any therapy approaches, and a limited number even of lesser quality studies. However, this does NOT give us license to st start throwing therapy techniques around willy-nilly. In the absence of proof of efficacy, we must select approaches based on sound theory and on an understanding of the cause(s) of a particular patient’s dysphagia.

• “If it works for some people, then why not?”
  Along the lines of “do what works,” this reason actually has some merit. HOWEVER, you need to know WHO it works for (“people with dysphagia” is an unacceptably broad category), and preferably WHY it works. Just because it works for SOME people does not mean it should be attempted on ALL.

• “It’s something else to have in the ‘bag of tricks’”
  You can always add “stuff” to the bag. But why would you add something that is not truly efficacious? So that when you’re stumped you can fumble around in the “bag of tricks” and have all sorts of things to choose from; never mind whether they are likely to work, just so long as you look like you’re doing something? Something about this statement really bothers me. A lot. I think because it reduces dysphagia management/treatment to a series of “tricks” which are sorted through more or less randomly until you happen to hit on one that seems to work. So much for thinking scientifically.

• “We don’t get good results with traditional therapy”
  So you’ll take anything that comes down the pike instead? This is SO not a good reason. With this rationale, you could justify having the patient sing the ABC’s backwards, or hang upside down, or balance on one foot in the rain three times a day to cure his or her dysphagia -- because, hey, we don‘t get good results with “traditional therapy“, so why not try this? If a therapy technique actually has merit (i.e., good results), then of course you should use it (with the appropriate populations). You wouldn’t need to justify it by pointing to the poorer results of alternative techniques.

• “Personal experiences can frequently tell us more about a technique than any study can.”
  Is personal experience important? Yes. Is it valuable? Yes. Should it supersede the scientific evidence? No. Studies can be flawed. They are not perfect. They do not tell us everything we might want to know. But we should not just discard them in favor of subjective, anecdotal evidence. At least, not if we want to be making some kind of attempt at evidence-based practice.

Things that make you go hmmm…

I recently ran across this Modified Barium Swallow Study (MBSS) posted by, interestingly enough, the patient himself. Without benefit of a complete history and the original video, I will not say much about its interpretation, except that overall it appears fairly unremarkable. The posterior transfer of a small amount of liquid barium after the swallow is not uncommon, especially since it is followed in short order by a second swallow to clear (of course, it is impossible to tell from the video whether it was a spontaneous swallow or cued), and I have never had a patient with complaints that could be traced to this occurrence.

What interested me most were some of the patient’s comments: “I am interested in the dark area around the adams apple (its the half circle below my jaw that moves when I swallow). I was told this is dried up gunk from the pooling/leaking effect going on.…” I certainly hope that this was due to some sort of miscommunication, as the idea of a professional performing MBSS’s who is unable to recognize the HYOID BONE is frightening beyond words.

Aphasia on TV!

I don’t usually watch Grey’s Anatomy, but when I heard a recent episode showed a patient with aphasia, I just had to go searching for the clip. If you didn’t catch it, there’s a link to the file here, from www.greys-media.com.

My first thought after watching it (aside from remembering why I usually dislike doing language evals with family present) was, somebody give the man a cue! Semantic, phonemic, pick a cue, any cue! (Of course, if he were my patient, we’d go through the whole hierarchy. “You drink from it. What do you drink from? You drink from a ___. You drink from a /k/___. You drink from a cup.”)

My next thought was, he’s pretty fluent to have such significant confrontation naming deficits. Probably anomic aphasia, although without testing repetition, you can’t rule out conduction aphasia. Hmm. Must not be getting enough language evals at work recently, that I feel the need to diagnose TV characters. :)

On the lighter side...

This one made me laugh. From the Speculative Grammarian -- "the premier scholarly journal featuring research in the neglected field of satirical linguistics" (a.k.a. the best spot to find esoteric linguistics humor) -- comes this improbable "news item":

Linguists Seek Increased Funding To Fight Potential Aphasic Flu Epidemic
SpecGram Wire Services
WASHINGTON, D.C.—Linguists testified before a joint session of Congress today, raising concern before the lawmakers that the world economy could be crippled by an epidemic of aphasic flu. Linguists representing numerous departments are seeking open-ended funding arrangements that they say provide a chance to mitigate the effects of an outbreak.

Concern about the potential for an aphasic flu outbreak—which would render victims unable to communicate and therefore hinder basic human interactions—rose after speculations about potentially deadly mutations of H5N1, or avian flu, lead to windfall federal spending in vaccination research. Linguists say that another mutation could result in a transmissible form of aphasia, a clinical disorder that effects the production of speech.

“There is an established genetic link for primary progressive aphasia [PPA],” commented Harvard linguist Steven Pinker. “We can’t guarantee that this won’t become a tansmissible disease, in the event of a flu pandemic. The science of lateral gene transfer is just too new.” Extra funding for linguistics would ameliorate the paucity of research into the area.
(article continues)

Well, that would be one way to increase funding for linguistics and communication disorders... And on the bright side, if they used that funding to create an aphasic flu vaccine, SLP's would be the first ones to get it! ;)