2- FOXcast SLP: Washington Post Piece On Dysphagia

Jimmy: Welcome to FOXcast SLP, a podcast for clinicians, made by clinicians. It’s brought to you by FOX Rehabilitation. Find out more at foxrehab.org.

So welcome to FOXcast SLP. I’m Jimmy McKay, your host, and today I’m joined with a colleague from FOX Rehabilitation, our Director of SLP services, Jonross Neptune. Jonross, welcome to the show.

Jonross: Thanks for having me, Jimmy. It’s always great to be here.

Jimmy: Glad to have you, especially for this. I love when we get to make sure people understand or come away with an understanding that’s a little bit better than them when they went in. And you actually forwarded me an article that appeared in The Washington Post a little while ago and it has something to do with what you’re passionate about. Tell everybody about the article and what you took away with it.

Jonross: This was an article and it was actually forwarded to me by a colleague about an hour after it was posted on their website. After reading it really it upset me to the point where I felt that people weren’t getting the information correctly and getting the whole view to the puzzle. It was speaking about dysphagia. It really focused a lot on, in my opinion more of an end of life type of dysphagia where feeding tubes are recommended, individuals are high risk for aspiration or even aspirating things and thickened liquids are sometimes prescribed. The article went on to say in a nutshell that nothing can really be done. It paints this really bleak picture of this problem that many many Americans face. There’s a whole profession of people out there, meaning speech-language pathologists, that deal with this every day and work to make their lives better. And this article really did the opposite of that.

Jimmy: Undercut that really.

Jonross: Yeah, absolutely.

Jimmy: I mean let’s just start with. First of all it was a perspective piece so we should say that – this was Douglas Jacobs and Joshua Lang from February 25th giving their perspective. So it is opinion. The title is “Problems swallowing are a big killer, but the treatment can be horrible.” So at no point does it really make me feel like we have a solution to this. It feels like they’re just highlighting a thing that is awful and there’s nothing that can be done about it. But again that’s just my perspective from that title right there.

Jonross: Yeah and that’s what drew me in initially when it was forwarded to me. I saw that and went “oh my god,” I initially thought “they’re talking about all the treatment that speech-language pathologists perform.” But really it was a feeding tube and thickened liquids and “mush” is I believe the terminology that was used.

Jimmy: And we should mention that at no point was there a Speech Language Pathologist mentioned or interviewed for this article.

Jonross: No, there was not.

Jimmy: So let’s start from point number one the article states that the epiglottis is all that protects a human being from aspirating. As an SLP, what do you think about that?

Jonross: We know that’s not true. It’s a vital component to the swallowing process. However, there are many other ways that your body can help protect yourself from swallowing food and drink and bacteria into your lungs. Vocal fold closure: when your vocal folds sit on top of your airway they are able to be closed protecting you from aspirating food and drink into your lungs. Laryngeal elevation: the whole larynx rises. So there are things there that play into the whole swallow mechanism aside from just the epiglottis covering up the airway. That’s the first thing that stood out to me for sure in this article was seeing that.

Jimmy: Well let’s start from the beginning. What did you think about their definition? Let’s define dysphagia. Because nine million Americans suffer from difficulty swallowing so how do you explain what dysphagia is to someone you’re about to work with that maybe a family member of someone you’re about to work with?

Jonross: Dysphagia is, like you said, it’s difficulty swallowing. And that can be with any phase of the swallow from getting it to your lips down into your stomach. There are lots of things that come into play when you’re dealing with that and there are lots of mechanisms that you have to look at and evaluate to be able to set up a proper plan of care and none of this was mentioned within this article: the instrumentals that would take place ahead of time or bedside swallow eval that would take place where the speech-language pathologist would look at all the mechanisms of the swallow and how they’re doing, what it looks like and what it sounds like afterwards. And to be able to come up with an appropriate plan of care that would ultimately help this person recover from the dysphagia or manage it the best that they can to help them stay as safe as possible, while still enjoying the food and drink that they love.

Jimmy: So what can be done when you have dysphagia other than simply putting in a feeding tube or thickening liquids. There’s got to be some other alternatives. I’d like to hear?

Jonross: Yeah. There are many, many, many alternatives that you can get to after the evaluation. So you might do a modified Barium Swallow study. You might do a FEES study. You may even just do a bedside swallow evaluation. But after the impairments have been identified through the testing, treatments, and recommendations are made. You would have things like compensatory strategies that you might look at. So anything that may put them along with their swallow: maybe it’s rate of intake or the bolus size itself might be modified. The mode of intake: maybe you eliminate a straw versus you know drinking from the side of the cup might be better for someone. It mentioned chin tucks in there: that is something that can be used from time to time but you need to use those with caution. If it’s not indicated for someone you would not want to do that. I’ve actually seen it where that makes things worse for people so it’s not just a “everything goes” or “everything fits into one little box.”

Jimmy: Right.

Jonross: You have to get the whole picture. When you’re evaluating someone, you have to look at the whole picture.

Jimmy: Right.

Jonross:  You can’t just assume dysphagia is the same for everybody.

Jimmy: From this article, it pretty much says, “Well, if you have this to prevent aspiration we’re just going to ruin the drinking and eating experience for you; we’re going to take away all the texture, all the taste from your foods. We’re going to call it mush. You’re not going be able to do anything by mouth: NPO, where no food or drink is allowed to be swallowed. It seems like it went to the most extreme example.

Jonross: You know it did. I don’t know if it’s the most extreme but it’s definitely bleak. There are many times I’ve had many clients that I can remember that has been on feeding tubes that got off of feeding tubes and got back to eating regular foods and regular drinks. It was used as a stopgap because they were suffering from this and they had so many difficulties going on that it was not safe for them to be eating by mouth at that time. Those that I’m thinking of were after pretty severe CVAs. However, with rehab, with strengthening exercises, with practice they were able to get themselves back to a point where they were able to enjoy the food and drinks. In the meantime, they were receiving their nutrition/hydration via PEG tube, or via the feeding tube, which helped them sustain their nutrition and hydration while they were doing this other rehab on the side.

Jimmy: Right.

Jonross: When you hear the word feeding tube, don’t automatically assume that that’s the end. There are things that can happen after that. You know to ask questions: don’t just take what they say as gospel.

Jimmy: would have loved if they asked an SLP a question.

Jonross: Yeah. You know it would have been nice. I know, I know of lots of colleagues of mine with FOX and outside of FOX that has offered up their time to the Washington Post and to the hospitals around to in-service and to provide educational sessions for people if they want to take them up on that.

Jimmy: And the only information we have about the authors of this – Jacobs and Lang – as we mentioned at the top of the show, there are physicians at Brigham and Women’s Hospital in Boston. It doesn’t say anything about where they practice now or have practiced in the past and what strategies. Diet modification, feeding tubes can be beneficial in appropriate. Not just that quote – mush to eat and paste to drink and feeding tubes. They don’t mean forever. Quality of life, right? Just the title of this article makes it seem pretty bleak.

Jonross: It makes it seem that when you have that diagnosis dysphagia that this is what’s going to happen and there’s no alternative to that. I know for a fact when I evaluate any of my clients or any of my patients that I’m looking at their quality of life and I’m taking that into consideration very seriously. I’ve had family members that have had trouble with things like this, friends that have had trouble with things like this. You look at the whole picture. You want to see – does this person have issues to where if I give them, or prescribe to them, or recommend to them that they need to have thickened liquids, are they going to drink them? Are they going to get dehydrated now because of that? You’re going to look at their quality and you can make decisions based on that. You want to look at the whole person and come up with treatment goals that are meaningful to the patient: so client-centered. So I’m going to look – this person is going to refuse all of these things that I’m going to recommend to them. Let’s find a happy medium. OK maybe you don’t want thickened liquids but perhaps let’s start drinking from a spoon. That will control the amount of liquids. There’s different things that you can do that may help that person still stay where they need to be. If it’s an end of life issue – that person wants to continue to eat and drink – that’s their choice. I will help them enjoy those foods as safe as possible.

Jimmy: So your advice for people that have dysphagia: what would it be? Take a step by step approach in terms of you just found out somebody that you know and care about that’s close to you has been diagnosed with it. What would be the steps that you would recommend for them.

Jonross: First you need to seek out medical professionals and ask questions. So you would go see your primary care physician and tell them that you’re having difficulties with X, Y, or Z. Whether it’s the actual swallow or the chewing of the food. Seek out medical professionals and ask questions. They will work with you. Don’t be afraid to ask questions. We’re here to help. Many forms of dysphagia, they can be managed and even eliminated. Don’t think that because you’re starting to have trouble swallowing that you’re going to need a feeding tube and thickened liquids immediately. Those are methods that are used and are appropriate at times. There are lots of people out there that will help you.

Jimmy: To seek out medical professionals obviously is paramount but also I like what you said is: ask questions. Because if you just read this article, which is written by two medical professionals, you would have one opinion. You’d have one view on what dysphagia is and what’s going to happen. And I guess I would just add to that – asking those questions and if it doesn’t seem right if it seems like it’s too extreme, get a second opinion. You know, somebody who works directly with patients who have this diagnosis that might be your next step.

Jonross: Yeah absolutely.

Jimmy: Jonross, I appreciate you breaking down this Washington Post article for us, and I think really ultimately the outcome we wanted to get people talking about is some of the other alternatives, some of the other ideas around this diagnosis and the treatment with it – especially from a perspective like you, from a speech-language pathologist.

Jonross: Thank you for having me, Jimmy.

Jimmy: Jonross Neptune, Director of SLP services at FOX Rehab. You can find out more information online at FoxRehab.org. Jonross, do you want to give out your e-mail address?

Jonross: jonross.neptune@foxrehab.org.

Jimmy: Appreciate your time Jonross.

Jonross: Thanks. Have a great day.

Jimmy: Thanks for listening to FOXcast SLP, a podcast for clinicians, made by clinicians. It’s brought to you by FOX rehabilitation. Find out more at foxrehab.org.