Saturday, October 28, 2006

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.


Blogger Sarah said...

There's actually data* suggesting that not only quality of life, but lifespan is reduced with tube feedings in some patients.

*Although, I was going to try and find the article to cite, and a quick pubmed search isn't turning up anything helpful...

12:51 PM  
Blogger Speechy said...


My favorite article on the topic is Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999;282:1365-70, as it covers all of the "reasons" why tube feeding might be placed -- prevention of pneumonia, prolonging survival, improving survival, and so on -- and finds no evidence that it does any of these things.

Other articles that specifically address the increased mortality include:
Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med 2001; 161: 594-599

Mitchell SL, Kiely DK, Lipsitz LA. Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems? J Gerontol A Biol Sci Med Sci 1998; 53: M207-M213

Sanders DS, Carter MJ, D'Silva J, James G, Bolton RP, Bardhan KD. Survival analysis in percutaneous endoscopic gastrostomy feeding: a worse outcome in patients with dementia. Am J Gastroenterol 2000; 95: 1472-1475

3:12 PM  
Blogger Speechy said...

oops! should be "prolonging survival, improving FUNCTION, and so on"

3:13 PM  
Blogger Sarah said...

Thanks for the references!

11:00 AM  
Blogger Vicoprofen said...

This comment has been removed by a blog administrator.

10:28 AM  
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12:12 PM  
Anonymous Anonymous said...

Just a note, the Frazier protocol may work in a small facility, but in a larger facility where just keeping NPO pts from getting the afternoon ice cream snack is a task, it's really not feasible. I have educated the families of pts. going home to have to implement, but in a NH setting it's very hard to follow the protocal.

11:07 AM  

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