Dysphagia Revisited: A Podcast with Raele Donetha Robison and Nicole Rogus-Pulia

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: Alex, we got a great show today on Dysphagia Revisited. Who do we have on with us today?

Alex: Revisit thickened liquid challenge is back, baby.

Eric: Oh boy. That’s going to be one of our topics, huh?

Alex: It’s back. It’s back. To talk about this. We’re delighted to welcome Raele Donetha Robison, who is a speech language pathologist, and researcher at the University of Wisconsin-Madison. Raele, welcome to GeriPal.

Raele: Thank you. Thank you for having me, and having us.

Alex: And we’re delighted to welcome Nicole Rogus-Pulia, who is a speech language pathologist, and assistant professor at the University of Wisconsin-Madison. Nicole, welcome to GeriPal.

Nicole: Thanks so much for having us. Excited to be here.

Eric: Well, before we talk about dysphagia and revisit it, which is also interesting, because this is our first podcast, I think on dysphagia, but we’ve talked about it before on GeriPal, in our blog. I think someone has a song request for Alex.

Raele: I do. I have one. Change by Blind Melon.

Eric: Why did you choose this?

Raele: Yeah, I thought this would be a really fitting song for today. I mean, the lyrics themselves, I think they’re just very true, right? Life is hard. We have a very finite time here, so we need to make the most of it. But I really resonate with the last part of the song, where it says that when life’s hard, you have to change. And I think that we’re at this kind of crossroads right now in dysphagia, and dysphagia management where our patients are suffering. Some of our healthcare systems are hard, and challenging, and I think that it’s time that we have a change. We revisit it, and make things better for our patients. So, yeah.

Eric: Lovely.

Alex: Great choice.

(Singing).

Eric: I love podcasts where I learned a new song that I like.

Raele: That’s a great one.

Alex: That’s a fun song. I had to go in the most bizarre tuning, because I’m still playing with two fingers here. But yeah, that was fun. Thank you.

Nicole: Impressive.

Alex: Yes.

Eric: Okay, I need to take a very big step back. We’re going to be talking about dysphagia. How should I define dysphagia? What is it?

Raele: I think Nicole would do great at answering that one. Yeah.

Eric: Nicole.

Nicole: Yeah, happy to start.

Yep. Yeah. So, when we say the term dysphagia, we’re referring broadly to swallowing dysfunction, or swallowing impairment. Within the scope of the speech pathologist though, we focus more on what we call oropharyngeal dysphagia, which our impairments in the oral phase of swallowing, and the pharyngeal phase. Our imaging techniques do allow us to look at the esophagus as well, mostly the upper esophagus, but esophageal dysfunction is largely managed by gastroenterology. But yeah, so the term dysphagia is sort of broad, and then we focus in as a field, yeah.

Eric: And we’re going to be focusing on this podcast with oropharyngeal dysphagia right here. Right?

Nicole: Yep. Yeah.

Eric: For those on YouTube. How common is it, and what diseases do we see it in? I think a lot of us know dementia. Either of you willing to take that one?

Raele: Yes, of course. So it’s fairly common across a lot of different diseases. So as you mentioned, dementia, there’s some research that show about 86% or 93% of those individuals will get that. I used to work in Lou Gehrig’s disease, or ALS, for example, very common. So, a lot of neurodegenerative diseases, Parkinson’s disease. You can also see it in a lot of rheumatological disorders. And then honestly, just common aging, as well. You can start to see swallowing changes. I think there’s maybe a little bit of debate as to when those turn from being just normal age related changes to then being something more, but it happens in many different areas of healthcare.

Eric: Right before this podcast started, Alex coughed a little bit as he drank some water.

Alex: Yeah. I did. I aspirated, right on cue. Do I have dysphagia? That is the question, right? Because I aspirated.

Eric: Well, can I ask, how common is it with just age? Because I don’t really think about it unless… There’s 90-year-olds, 100-year-olds that don’t look like they’re having any swallowing problems. How common is it with just age?

Nicole: Yeah, do you want me to..

Raele: Yeah, go ahead. Yeah.

Nicole: That’s a great question. So we’ve done… The prevalence estimates in older adults really do depend on the setting. Most of the studies that have looked at prevalence have used more like self-report rather than imaging assessments. So, it’s definitely possible in sort of that oldest old category that there may be what we call silent aspiration, where someone aspirates, and then they don’t cough or clear their throat, so you actually wouldn’t even know that they’re aspirating. But estimates in community dwelling older adults are around 15%. And then when you look long-term care facilities, more between that like 35 to 50%, and then much higher estimates in hospitalized older adults. So, it really kind of depends on, I think, also level of overall status, frailty, other factors like that.

Eric: And why is it more common in hospitalized adults? Is it just people develop delirium, and delirium causes dysphagia?

Nicole: Yeah, I think definitely delirium, but there are also a lot of medical conditions that can be specific to hospitalizations. So, it can be something where someone’s sort of been masking it, kind of underlying age-related changes in swallowing, and then once they’re hospitalized, there’s more deconditioning that happens during the hospital scene, so we start to see some of those swallowing impairments unmasked within that setting. But also hospitalized individuals often undergo intubation, or other procedures that can affect laryngeal function, and then induced dysphagia during the hospital stay as well.

Eric: And for those individuals, do we know anything? What happens after they develop dysphagia in the hospital? Do they bounce back, and they no longer have dysphagia, or is it like whatever controls their swallowing is taken a hit and they will remain dysphagic? Is that a word?

Nicole: Yeah, so I think it really depends on the specific reason. So, if someone’s admitted with a stroke, they may have long-term chronic dysphagia that results from that. If it’s more of a young, healthy individual who’s been intubated for a short period, there hasn’t been a reintubation, or a self extubation, they’ll usually recover within 24 to 48 hours from that intubation, and laryngeal function will be restored. But if it’s someone who’s older, who has other risk factors, we often will see dysphagia continue for a period of time, and sometimes it can become chronic.

Eric: Yeah, and we think about risk factors, or instigators. Are medications part of that, too?

Raele: Yep, they definitely can be. We actually worked on a paper last year? All the time is running together now. Where we looked at anti-psychotic use among older veterans with heart failure, and subsequent dysphagia. So, a lot of medications, you can see the secondary effects of dysphagia causing those, as well. Lots of coughing, aspiration, things like that.

Eric: And Raele, when you think about meds, what’s in your top five categories of meds associated with dysphagia?

Raele: I mean, definitely things that are going to cause sedation effects, things like that. Anything that could maybe cause increased inflammation, those types of things can lead to dysphagia. I’m trying to think of some other ones, Nicole.

Nicole: I was also going to add anticholinergics.

Raele: Yes.

Nicole: Because if it induces reduced salivation, that can also affect swallowing.

Raele: Yeah.

Eric: Because you need saliva to swallow, right?

Nicole: Yes.

Raele: Very helpful if you do, yeah.

Nicole: Surprise, surprise, it’s important.

Eric: And swallowing is complicated, right? You have to have neurological control over all of these muscles. You have to have a tongue control, you got to have a wet mouth, is that right?

Nicole: Exactly.

Raele: Yes.

Eric: So, any interruption of all of those things can lead to dysphagia.

Raele: Exactly.

Nicole: Absolutely. Yeah.

Eric: So, given that, what does the assessment for dysphagia look like?

Nicole: Yeah, so again, it does depend a bit on the setting. So, if it’s a hospitalized patient, usually the referral will come through to the SLP service. Here at UW Health, we call it our Swallow Service. We actually have even subspecialization, which is kind of fun. So, the consult will come in and then we’ll do what we call a clinical bedside evaluation, where we’ll go and see the patient at the bedside. Our assessment involves a cranial nerve examination, because as you mentioned, there’s a lot that’s involved, so we have to look at the function of the muscles that are involved in swallowing.

Also sensation, voicing. We often will bring in our speech pathology colleagues that assess voice, or our otolaryngology colleagues if we think there’s some concern over laryngeal function. We’ll also look at cognitive status, medications. We want to assess if the patient is able to participate in an evaluation, if they can actually swallow something. A lot of times patients in ICU aren’t even ready to take anything by mouth. We put something in the mouth, and it just spills out, and they’re just not there yet.

Eric: Yeah.

Nicole: Yep. Did you want to jump in there, Alex?

Alex: Oh, I was going to ask, when do you use a video evaluation?

Nicole: Yeah.

Alex: Yeah.

Nicole: Well, I was just going to also add, so part of our clinical assessment is to administer what we call boluses, which is essentially liquid puree, like an applesauce pudding, and then a cracker. And so, we’ll give different volumes, and viscosities of liquid, and we look for signs and symptoms of dysphagia, clinical signs, which would be coughing, choking, throat clearing, a change in voice quality that we call wet, gurgly voice. And if we see any of those signs or symptoms at the bedside, we’ll then recommend imaging assessment. Raele, do you want to talk a little bit about our different options for imaging?

Raele: Sure.

Eric: Before we do that-

Raele: Yeah.

Eric: Raele, also, because coughing is… If I aspirate a little bit, I’m going to cough. Isn’t coughing a good sign, that whatever that mechanism is, is intact, and they’re being more safe?

Raele: Yes, definitely. I mean, for sure, if somebody has things going down the wrong pipe, going down the airway, we want to see that response. We want to see that they have a good strong cough response to get something out of the airway. I think from our standpoint though, it’s a matter of every once in a while things happen. Just like Alex, before the podcast, he aspirated lightly. Something went down there, got it out. That’s a totally normal thing that happens. But, in some situations it’s not at all normal to have things just be going into the airway. And so, even if they are coughing and getting it out, the fact that it ended up in their airway to begin with is something that can cause concern, or something that we may need to look into a little bit further.

Eric: Okay. Now Raele, the question is, what are your… Aside from the bedside exam, what’s kind of that next step?

Raele: Yeah, so ideally if you think that there’s some cause of concern of a swallowing issue, you want to get some type of imaging done, just because none of us unfortunately have x-ray vision. And so, something that is going to really allow us to see the structure. So, probably the one that a lot of individuals are familiar with is video fluoroscopy, or the modified barium swallow study. So, this is where individuals get a moving X-ray of their swallow done. We’re able to give them barium contrast of different volumes, consistencies, and actually see those swallowing structures and how they move.

Another option is fiber optic endoscopic evaluation of swallowing or FEES. This one, it allows us to see kind of a bird’s eye view of the airway, and of some of the swallowing structures. The kind of downside, I think, but there’s a little bit of debate about this, is that when individuals swallow with this one, there’s a tube that’s inserted through their nose, and in through the pharynx. When individuals swallow, there’s a whiteout period, so you can’t really see kind of the swallow itself, but then you can see residue, and things like that afterwards, and kind of see where the bolus ended up. So that’s the benefit of that.

Here at UW Madison, and some other places as well, we also use pharyngeal high resolution manometry, which is a way that we can look at pressure generation during the swallow. So again, it’s a catheter that’s inserted into the pharynx, and as individuals are swallowing, they apply pressure to that tube, and then we’re able to see a topographic map, essentially, of the pressure regions, and how much pressure was applied, and where.

Eric: Fancy.

Raele: Yeah, it’s beautiful, colorful images.

Nicole: I was just going to add that I think a helpful analogy for me has been to think about our clinical assessment, sort of like if a physical therapist just stood at the door with their ear up to the door to listen if a patient fell, and then made a recommendation plan for exercise. It gives us some idea if there’s something going awry in the swallow, but we can’t really plan treatment without imaging the swallow. It’s really important.

Alex: Yeah.

Eric: Maybe we can talk then about management, or planning treatment, which I think I got a lot of questions on this.

Alex: Is this where you recommend the thickened liquid? [laughter]

Eric: Well, let’s talk about… I’ve got a lot of topics, including when you do the assessment, you find something. Are you helping people try to get their swallow stronger during that time? Maybe we can ask for that. You see something on a bedside swallow, or on a FEES, you’re diagnosing what you think it is. Are there instances where you say, “You know what, I feel like there are things that I can do to improve their swallowing function, without having to change the environment, or the food consistencies.”

Nicole: Yeah, absolutely. I mean, I think that there’s a misconception often about our imaging assessments, in that we’re really just looking to identify aspiration.

Eric: NPO, or okay for food.

Nicole: Yeah. Exactly. Like, “Okay, we saw aspiration. Evals overt.” No, really the aspiration is the outcome of the physiologic impairment in the swallow. And so, the imaging is actually allowing us to figure out what those physiologic impairment profiles are, and then that’s how we can plan our treatment. So, an SLP clinician who does that modified barium swallow study well will actually be testing some of our interventions during the evaluation, not just looking for the outcome of aspiration, or as Raele mentioned, residue, which is material leftover after the swallow, that then is at risk to be aspirated.

So, we use that information to formulate a treatment plan. And then when we think about our interventions, we have sort of two categories. One, we term compensatory strategies, and the other are rehabilitative. So, the thickened liquids diet modifications were never intended to be a long-term fix for these physiologic deficits. They were really meant to be able to compensate for the deficits in the short term, so that we could actually implement rehabilitative approaches. But over time, and I think Raele can talk a little bit about some of the systems level issues that have made it challenging, even though we’re a rehabilitation profession, we’re not really doing as much rehab as I think both Raele and I feel we should be as a profession.

Raele: Yeah, definitely.

Eric: Raele, yeah, what do you think about that, from a systems level perspective?

Raele: Yeah, I mean, I just think that it’s really hard in a lot of settings to actually do rehab. Swallowing rehab, to me, probably a lot of rehab is something that should really be an ongoing thing. But I think first of all, when people are in these acute care type of situations, I think the goal a lot of times that the SLP is being told is just get this person stable. So, it’s not already kind of being set up from the standpoint of, “Okay, let’s get this person back to some functional baseline thing.” It’s just, “Let’s just keep them stable for the weekend,” or the day, or whatever it might be.

I think also there’s staff considerations, time considerations that need to go into these things. There’s resource limitations as well in some settings. Some of these devices that we would use for rehab can be… I mean, compared to some of the equipment that PTs and OTs have, it’s kind of relatively inexpensive, but it’s still, there’s an expense with some of these devices that can be a couple of thousands of dollars and things like that. So, not always are you going to be able to have availability to have those types of things.

I think there’s also just things that affect all of healthcare, productivity requirements, time constraints, so all of these systems level issues, I think, can start impeding SLPs ability to really get in there and do rehab. And then something Nicole and I talk about a lot is that the way the system’s set up right now, SLPs, we get into the picture very late in the dysphagia, and swallowing care process. I mean, typically individuals are seeing a physician, a nurse, whoever it is, and then we are brought in oftentimes well after dysphagia has started. And so, from that standpoint, it’s really hard then to come in with some sort of proactive exercise, and now we’re acting from a place of reaction, and being very reactive in our responses. In an ideal world, I think that everyone with dysphagia would be seen by a multidisciplinary team, including an SLP, and have all the resources that they needed to truly get swallowing rehab.

Eric: So let me ask you this, Rale, because I feel like, it could be wrong, but the most common time where we start diagnosing dysphagia is during a hospital stay.

Raele: Yes.

Eric: And in memory clinics, or when we’re diagnosing Alzheimer’s disease, when we’re diagnosing ALS to start off with, or any other neurodegenerative disease, I’m not sure how often we’re actually consulting SLP, maybe a little bit more in ALS, but probably not in dementia early on. Is there a role for that?

Raele: I think that that would be such a better model if we shifted to that, because Nicole briefly talked about this before. One of the problems, especially when you start getting into these diseases, like let’s say dementia, or even, I worked in ALS for a long time. Sometimes unfortunately, patients just really aren’t the best… Don’t have the best insight as to when their swallowing is changing. And the reason because of this is because it’s very different from, let’s say gait. If you start walking kind of funny, that’s a very obvious thing. If you start having hearing issues, that’s a very obvious thing. If you start having swallowing problems, it may be as subtle as you’re just taking longer to eat a meal. And so, sometimes people don’t put those things together in their heads.

So, for example, when I used to work in ALS, we would ask our patients, “Are you having any swallowing problems?” They’d say, “No, I’m not having any swallowing problems.” And I’d say, “Okay, so if I gave you a cheeseburger, you could eat that?” They’d be like, “Oh God, no, I can’t eat a cheeseburger. There’s bread, there’s beef. It’s hard to chew.” And so what was happening in a lot of cases, and I think you see these in other diseases, too, people are kind of already modifying at home. They’re going to things that are easier to chew, easier to swallow, but because they’re still swallowing, they don’t have this thing in their mind of, “Oh, I need to bring it up to my doctor that I’m having this issue,” because they’ve kind of compensated and figured out something else on their own. So, if we were in a situation where we had more SLPs integrated into these clinics who were doing assessments early on, and not just simply asking the question, binary, yes, no, “Are you having this issue?” I think we would see a lot more of these things start to come out.

Alex: This is great. And you used the words like reactive, proactive, and I know Nicole, you wrote a paper about this that we’ll link to in the show notes for our podcast. Do you want to say a little bit more about what the reactive versus proactive approach is?

Nicole: Sure, absolutely. So as Raele mentioned, when we think about reactive care, we’re really becoming involved once the dysphagia already exists, or has already been identified. So we know the individual actually has a swallowing disorder at that point, whereas proactive care is having more of that multidisciplinary approach, where the speech pathologist is part of the care team, we’re involved at the time of diagnosis, or soon after, and we can start doing our assessments. We can get an idea of what baseline swallowing function is like at the time of diagnosis, and then we can follow the patient over time, so that we’re more able to catch those changes that are happening earlier, and actually implement… I think it’s important to start thinking about implementing more exercise based approaches earlier, so that we can build what we think of in our field, and other fields, as physiologic reserve for swallowing. So, really starting to improve muscular function early, so that we can maintain swallowing, and intact swallowing for longer.

Eric: Is there any evidence that for people with neurodegenerative diseases that exercise based approaches before they develop dementia, building up that reserve, actually improves outcomes? Has there been research in that?

Alex: Before dysphagia, before they develop dysphagia?

Eric: Yeah, like in early Alzheimer’s disease, actually getting SLP to give them some exercise based recommendations, how to help with their swallowing. And what would that look like?

Nicole: Yeah, thanks so much for asking that. So, we have started here at our VA hospital, a multidisciplinary cognitive care clinic, and our speech pathology team has been involved, and we’ve been seeing patients, and kind of using… Just sort of piloting this more proactive approach. And our method thus far has been to assess areas of functional reserve, physiologic reserve. The way that we do that is we look at lingual function, tongue function, which we know is important for swallowing. We look at cough function, as Raele mentioned, you can have a cough. It doesn’t mean it’s effective, and a lot of our patients actually have cough disorders or dysfunction. And so then we can build more of a proactive approach based on those areas of reduced reserve.

It hasn’t been tested yet. I currently have a clinical trial that’s funded to look at patients with early stage Alzheimer’s disease and the feasibility of using these rehabilitative approaches, and we actually just did an early assessment of our data on our baseline assessment, and we’re already finding physiologic impairments different from healthy older controls in the very mild phase. So, essentially MCI, and the CD, and the clinical.

Eric: Really?

Nicole: Yeah, CDR.

Eric: So, I got to ask though, because now my imagination is running wild. Let’s say you do find something around the tongue, lingual. Do you have a little barbell that you attach to the tongue to do exercises? What does that look like?

Nicole: Essentially, yes, we have our version of that.

Eric: Really?

Raele: Yeah.

Nicole: Raele, do you want to describe that?

Raele: Yeah, sure, because my dissertation was actually using this device, so I’m very familiar. So, there are some tongue strengthening devices out there. Probably the one that’s most used within our field is called the Iowa Oral Performance Instrument. And so, it’s a pressure transducer. There’s a long kind of tube that’s attached to the device, that is connected to an air-filled bulb, and then that bulb gets put on the patient’s roof of the mouth, and they can use their tongue to push against the bulb. On the device, you’re able to set different resistances so that way it gets kind of harder to apply pressure, and so you’re really working out those tongue muscles. It’s been pretty well studied. Certainly, it has definitely shown that you can make the tongue stronger, and I think there have been some mixed results as far as what it does as far as swallowing impairments, improving those. But yeah, we have a little barbell for the tongue, essentially.

Eric: Okay. One more. How about with the cough? How do you strengthen your cough?

Raele: So, you can do respiratory strength training, so there’s different devices for this as well. So there’s the expiratory muscle strength trainer, and there’s also inspiratory muscle strength trainers. For the EMST device, or expiratory muscle strength trainer device, essentially it’s a spring-loaded valve, and so you’re breathing against resistance, so you can set it to different resistances, and the person just breathes into the tube. When I was doing this work in ALS, we used the rule of five, so we did five sets of five, five days a week, and we would just tell people, “Do it during the commercial break.” And it actually is very interesting though, how much that improves the physiologic reserve of those individuals, and how much it really impacted cough function, which again, is so important for swallowing, because if you have something going down the wrong way, then you want those strong muscles to be able to push that out.

Eric: Okay, so we’ve talked a little bit about rehab. We’re skirting around this issue about, what was it, two categories, two buckets. You had rehab, and you had…

Nicole: Compensatory.

Raele: Compensatory

Eric: Compensatory things.

Raele: Yeah.

Nicole: Yeah.

Eric: Okay. Let’s talk about modifying diet liquid consistencies.

Raele: Let us talk about it. Yes.

Nicole: Let’s talk about it.

Eric: And for our listeners, Alex, how many years ago did we do the thickened liquid challenge?

Alex: I don’t even know. It was a while ago.

Eric: Probably over a decade ago, probably somewhere around there.

Alex: Was it that long ago?

Eric: And what happened is we wanted to just try modified diets. What does a puree diet look like? How does it eating that… It turns out, I actually didn’t mind any of the modified diets, but the thickened liquids, for our entire team, we thought, “Wow, this is actually… Try and do this for a day would be really hard.” So we created a challenge for our team, “Okay, do it for 12 hours and record yourself.” So we did it for 12 hours, and maybe one of our team members completed it for 12 hours, which was really hard. We had an intern on our service actually post the first video on it on YouTube, which she also published in a JAMA IM piece about the… I think it was titled The Horrible Taste of Thickened Liquids, and kind of reviewed the evidence. And then we created the Thickened Liquid Challenge to have other people try it for 12 hours. With not the assumption that nobody should be on thickened liquids, but we should have… If you’re discharging somebody on indefinite thickened liquids, you should have a goals of care conversation.

Raele: Yes.

Nicole: Yes.

Eric: I’d love to hear Raele, Nicole, your thoughts.

Alex: Yeah. And we should say Eric, that that kind of took off beyond what we anticipated.

Eric: Yes.

Alex: And people were uploading their YouTube videos of the Thickened Liquid Challenge from these palliative care teams, speech language pathologists, teams from around the world, Canada, Australia, all over the place uploading these, and we were shocked.

Nicole: Yeah, it was huge. And I mean, I have to say I’m a big fan of the Thickened Liquid Challenge. I feel like we sort of take our-

Eric: Thank God. I thought you were going to yell at us.

Nicole: Yeah. No, no.

Raele: No.

Nicole: We have our students do this, essentially like a version of this with thickened liquids and modified diets. We also have them taste barium, because that’s what we have to use in the modified barium swallow.

Eric: What does barium taste like?

Nicole: I mean, it’s just sort of like a chalky…

Alex: Chalky.

Nicole: Bland taste, but it’s not pleasant…

Eric: I think taste tests are great. We do a… We did a laxative taste test.

Alex: Yeah, the laxative taste test.

Eric: It’s amazing how bad medications taste.

Alex: That was illuminating.

Nicole: Oh, horrible. Yeah.

Alex: Liquid Colace is not good.

Eric: Liquid Colace, never prescribe Colace.

Alex: Very bad taste.

Nicole: Awful.

Alex: Bad taste.

Nicole: No, I mean, I think it’s really important for students, and our clinicians to understand what you’re recommending to patients, always. But again, most of my clinical practice, until recent years, has been in the acute care setting. And so I always think of thickened liquids as a tool in our toolkit. It’s something that we need to use at times. We have patients who are acutely ill, pulmonary consequences can be really, really serious for a lot of our hospitalized patients. And so, I do think that they definitely have a role, and I think there are patients who need to be on them, but I think from my perspective, the biggest issue is that we don’t have reassessment of a lot of these patients, because maybe we don’t have the staffing levels. Maybe the hospital doesn’t have access to imaging the way that our large academic medical centers do. And I think a lot of times when clinicians don’t have access to those resources, they rely on the clinical assessment, which we know isn’t always really accurate. Yeah.

Eric: I guess one question when we think about thickened liquids is, what’s the evidence base that it actually decreases patient-centered outcomes? Not like, you do your assessment, you do the video fluoroscopy, and you see decrease aspiration on video fluoroscopy, but it actually decreases mortality, decreases aspiration pneumonia, clinical aspiration pneumonia, not just aspiration, and is that benefit outweighing the risk? Because the other thing we see is, we see dehydration, early satiety from thickened liquids, because people kind of get full on the gum and starch based thickened liquids. And I think there’s potentially an increased risk for other things. And I also hear that maybe having plain water go down the lungs is a little safer than having gum, or starch based thickeners going down the lungs, when you’re doing thickened liquids. Thoughts on that? Raele, what do you think? Am I an idiot?

Raele: You should go to some of our meetings, because this is the hotly contested thing, even within our field, too.

Nicole: Yeah, exactly. Exactly.

Raele: Yeah. I mean, I do think that we do need a lot more research to understand the longer term effects. This is a huge issue, and I think a lot of dysphagia research is that we really just don’t have a lot of longitudinal studies to begin with. I think as Nicole was saying too, it’s a little bit difficult because sometimes people are starting on these diets in the hospital, and then they’re continuing on, and then there’s no follow up, and somebody else is supposed to follow up, and so they kind of leave the hospital, and then it becomes nobody’s problem, but then they’re having these outcomes.

Yeah. So it’s a really, really big issue, and it obviously is such a huge concern for patient quality of life, and I think is this question raised about, are there other approaches that could be a little bit more person centered? I think this is the heart of the issue, is that people are just very concerned about the… Maybe ethics is too strong of a word, but just a lot of, I think, autonomy gets removed with some of these diet modifications, and a lot of, like you said, quality of life. We like eating because it tastes good, and we like having our…

Eric: It tastes good.

Raele: Yeah. And so when you’re-

Eric: And the mouth feel, as a foodie, the mouth feel of thickened liquids is not good.

Raele: Yeah.

Eric: I’ve tried both gum and starch based thickened liquids. I know a lot of people advocate… When we did our Thickened Liquid Challenge, everybody was saying, “Oh, you got to use gum based thickened liquids.” I don’t like the mouth feel of either, and thickened coffee is…

Alex: Tastes pretty bad.

Eric: I never ever, ever-

Alex: We had people trying thickened wine, Christian St. Claire went. pulled up to a McDonald’s and asked for a Coke. Thickened.

Eric: Thickened beer did not thick well.

Raele: Yeah.

Eric: And we also have another video of, interestingly enough, if you have somebody on thickened liquids and you mixed MiraLax in their thickened liquids, it removes the thick… In starch based thickened liquids, it’s no longer thick. It dissolves the thickness.

Nicole: That’s interesting. Yeah. I mean, I think the interactions of things with thickened liquids is another sort of… There’s been a little bit of work looking at bioavailability of medications in thickened liquids. There’s so much work that needs to be done. I am just going to push back a little bit.

Alex: Good.

Nicole: Because I sort of take issue with some of the titles of publications that have come out that say things like, “Thickened Liquids, Things We Do For No Reason.” Actually, there is a reason, and there are patients who are, like I said, at a high level of medical acuity, who need this for a short term, to kind of bridge them through a period of time when they really can’t afford to get things into lungs. I think a prime example would be our post lung transplant patients, they need to be on this. So, to say it’s something we do for no reason, I just really don’t agree with that perspective. But I agree also with everything that you said, Eric, I think we need larger studies. We need to be able to look at these outcomes that really ultimately matter. The only clinical trial that really has looked at this in a large sample, people keep citing that trial, it actually was done here at UW Madison by both of my mentors, my doctoral and postdoctoral mentors, and it was empowered for pneumonia as an outcome. They definitely-

Eric: That’s the best evidence we have.

Nicole: That’s all we have. I mean, that’s it. And so yeah, it’s really like a call to action for people to start working on this. Yeah.

Eric: Oh yeah. I got a question then, because I see one in 12 nursing home patients with dementia are placed on thickened liquids.

I think it’s around one in 12 nursing home patients But it’s a lot. I see this in a lot in dementia. Dementia is a progressive neurological disease, and let’s say it’s not delirium, it’s not… When would you advocate, or when do you think it’s okay to put those individuals with swallowing disorders, secondary Alzheimer’s disease, on thickened liquids?

Nicole: Yeah, I mean, I think it’s a great question. In my practice, to be honest, and maybe it’s going to be shocking as an SLP, but I shy away for outpatients that are otherwise mobile, and doing well, and good pulmonary health, will shy away from thickened liquids. One approach that I’m really interested in from a research standpoint, I don’t know if you’ve heard of the Frazier Free Water Protocol. Have you heard?

Eric: I heard about it. You want to tell our listeners?

Nicole: Yeah. So this approach is where patients during a meal will take thickened liquids, but then in between meals, after undergoing oral hygiene, will take water, basically sterile water. So, it’s kind of like a blend of the two, where they’re kind of at most highest risk for aspiration during the meal in theory, and then in between, they’re able to take water. It hasn’t been studied very extensively yet, but some of these early sort of small studies suggest that there may not be any increased risk in those that are on this free water.

Eric: And I love that too, because adherence to thickened liquids is exceptionally poor.

Nicole: Exactly, yep.

Alex: That’s why so few people made it through the day. It was hard.

Nicole: Yeah.

Eric: Okay, Raele, I got a question for you. You can tell me if this is a stupid… This is my approach to the thickened liquids. It may shock Alex, is that I have, and I continue to prescribe thickened liquids in even advanced dementia, and that’s when-

Alex: What?

Eric: Yeah. Yeah. Yeah, yeah. And most of the time, no. However, if somebody… Because it’s all about quality of life, right?

Nicole: Yeah.

Eric: If somebody’s cough looks distressing, and then working with the SLP, their cough gets better, or sometimes just the LVN, like in our hospice unit, their cough looks better on thickened liquids, and it looks like they’re having less distress, all for it. I would say those are the minority of times that we see it. Usually we’re just stopping thickened liquids because it was placed in the hospital, and nobody reevaluated it, and their cough is the same with or without thickened liquids. Raele, is that stupid?

Raele: I don’t think it’s stupid. I mean, I used to work in ALS, and same kind of… Much more exacerbated kind of disease progression, but we would recommend thickened liquids in a lot of those cases as well. So, I think sometimes where we get into trouble with these discussions about thickened liquids, is that people take a very all or none approach. It’s very much like we shouldn’t be doing it for everybody, or we need to be doing it for everybody. I think this is kind of the thing, and I think it will be appropriate for short-term use in some cases, and I think that it will be inappropriate for other people.

So, I think it’s hard to just make a blanket assessment, because there’s so many other variables. I mean, are they mobile? Is there some sort of chance that they’re going to be able to recover swallowing function? What other types of things do they have going on? Comorbid conditions? What type of setting are they in? There are lots of different considerations. I think what it is, is the big issue that I see, and I think Nicole, this is what we talk about a lot too, it’s the reassessment piece. If you’re going to put somebody on really anything, any type of rehab or whatever, there needs to be then a pathway for them to get reassessed. They can’t just stay on it forever and ever, and then there’s just no follow-up.

Eric: And I love that too, because I have actually seen people also get readmitted over and over for dehydration on thickened liquids. You stop the thickened liquids, and they’re taking in a lot more water. So, reassessing the risks of thickened liquids, too. So, Alex just ignores all of this. He doesn’t prescribe thickened liquids, because he just puts in feeding tubes in everybody. [laughter]

Raele: Oh, no.

Alex: No. But I do have goals. I know we’re running out of time. We only have six minutes, and this is a great conversation. We have so much more to talk about. You have your JAGS paper, we have equity considerations, and one of the things I want to talk about is goals of care discussions, which I know you advocate for, that this is a time to initiate goals of care discussions, what’s important to you, what do you value, what are you concerned about? Which for patients who have advanced dementia, you’re interacting with the surrogate in that case, not the patient with dementia. And I have those discussions with the surrogate, and I’ll tell you, please tell me if this conversation is nuts.

Like I say, for some people it’s really important to not cough, and that that cough can be uncomfortable. And if you’ve seen… I’m sure you’ve seen your loved one cough, and that may be distressing to them or to you. For other people, it’s really important to be able to eat, and drink whatever they want, even if that liquid is going to make them cough, and they’re willing to endure that discomfort in order to drink what they want to drink, in the consistency they want to drink it.

As you’re thinking about this, what do you think is important to… What would be important to so-and-so at this time, as we’re thinking… And this is in the context of a larger goals of care discussion, often we’ve already sort of decided we’re going to focus on quality of life primarily at that point. Is that conversation crazy? And is that something like speech language pathologists should also be involved in?

Nicole: Oh my gosh, yes. I mean, I love the way that you’re framing that, and it’s just been so refreshing to hear this, because one of the things I always say, being in a division of geriatrics is, this concept that unrestricted diet is always going to improve quality of life, I think can be problematic, because some patients are really symptomatic, and when you’re symptomatic, some of these modifications can actually be helpful. So I really like the way you frame that. I am a huge advocate for SLPs being part of those discussions, and the advanced care planning, and just I think if we can get involved, and have those conversations with patient care partner dyads earlier, we could really have a positive influence on the trajectory of swallowing management over the course of the disease.

Eric: Okay. We’re going to do some lightning round. I want to briefly talk about feeding tubes. I think most of our listeners know we do not recommend feeding tubes for people with advanced dementia. We don’t have to go into that, but I do want to highlight, you had a JAGS article that was published on pre-hospitalization dysphagia and feeding tube placement in nursing home residents with advanced dementia. Raele, you were the first author, Nicole, you were the senior. Just to summarize what I remember, about one out of 10 people with a PEG feeding tube, it was in certain people who’d never had dysphagia before that hospital stay. Why is that?

Raele: That’s a great question. I spent a lot of time in the discussion trying to think about why we might be seeing that. I think that there might be some of these things that we’ve talked about before, where just kind of when you’re in that middle of that clinical decision making, I think sometimes people are just trying to get something done, and they feel like this might be the alternative to rehab, or whatever it might be. Maybe there’s not time to implement rehab, so they just kind of feel like, “This is what I’m going to do.” I think that there’s still a little bit of a maybe literature knowledge-based gap, as well. We found a couple of survey articles that we wrote about in that discussion where it seemed that a lot of physicians were still a little bit… Had a little bit of misinformation as to the efficacy of feeding tubes, and when they should be placed and things like that.

I think too, there’s been some good qualitative research done. Recently there was one about Black and white proxy participants with dementia and the reasons why feeding tubes were placed, and just some differences across nursing home cultures and things like that. So, I think it’s a multifaceted issue as to why they still continue to be placed. But it’s actually very interesting. I really couldn’t find any research, really in general, about talking about feeding tube placement and the prevalence of dysphagia, period. So it’s very interesting that even though you would think that it’s being initiated because people have these swallowing problems, it doesn’t really seem like it’s being assessed together, which is very interesting.

Eric: I also wonder, is it just the utilization review standpoint? Like you get the PEG in quickly, you can get them discharged quickly. You don’t have to… If you’re trying to get somebody out in the next two days and they’re having swallowing problems, it’s a quick resolution.

Raele: Yeah. Yeah.

Nicole: One other thing to mention with that analysis though, is we didn’t have Medicare, we didn’t have claims data for the hospitalization. So, it is possible that they could have had some sort of swallowing assessment during that hospital stay that we didn’t know about. So, just something to keep in mind there.

Eric: Okay. Last question. Super lightning round. It may not be a lightning around question, Nicole. I think it was in your webpage I read something about oral microbiome profiles, and saliva production decreasing pneumonia risk. I think we talk about preventing aspiration. Are there things that we can do to prevent the complication of aspiration, which we most fear, aspiration pneumonia?

Nicole: Yeah, absolutely. I think you kind of alluded to risk of aspirating thickened liquids versus water, and that water would have less risk. I think that depends on the oral microenvironment for the patient, and that’s something that we haven’t really had sort of a standard way of assessing. So, through our lab, we’re looking at characteristics of saliva and the oral microbiome, and if we could potentially use that as a risk indicator for pneumonia development, to kind of help inform our decision making about our recommendations.

Eric: Great. Okay. I want to thank both of you for joining us. We’re going to have show notes with article links and other helpful resources. But before we end, Alex, do you want to sing us… Who sings this again?

Raele: Blind Melon.

Eric: Blind Melon.

Alex: (Singing).

Nicole: Wow. Yay.

Eric: Raele, Nicole, thanks for joining us on the GeriPal podcast.

Raele: Thank you for having us, again.

Nicole: Thank you so much.

Eric: And thank you to all of our listeners for your continued support, and don’t forget to claim some CME credit for this.