Transcript of “Rights Here, Rights Now –

Episode 19: All About UTIs!”

Produced by the disAbility Law Center of Virginia.                                                            

[NARRATOR]: The information provided on this podcast does not, and is not intended to, constitute legal advice. Instead, all information, content and materials available are for general informational purposes only.

[Intro Music: Light rhythmic percussion beats, finger snaps & hand claps]

[VIRGINAI]: Welcome to Rights Here, Rights Now! The podcast about disability, advocacy, and activism.

I'm your Advocate host, Virginia Pharis.

[REN]: And I'm your Advocate host Ren Faszewski.

[VIRGINIA]: Every two weeks we've taken to relevant issues, current events, and avenues for self-advocacy.

[REN]: Because someone has to.

[VIRGINIA]: And it might as well be us!

[REN]: This podcast is produced by the Disability Law Center of Virginia, the Commonwealth’s protection and advocacy agency for disability rights.

***Find out more at www.dLCV.org***

[REN]: So, again, I am so happy to be interviewing somebody who I have *clearly never met before…* (pause)

[Virginia Pharis laughs.]

[REN]: …Virginia Pharis. Welcome to the show, Virginia.

[VIRGINIA]: Thank you! Uh, longtime fan. [More laughter.] Um, so, we wanted to, sort of switch it up a little bit today. Usually we talk about, like, something that dLCV does, or like, a project that we have going on or like, stuff that we have going on, or a specific advocacy strategy, this is sort of like a specific advocacy strategy. You know, when we do our work, in the facilities, we see a lot of…people end up getting really sick off of, you know, like you said, [Ren], off of the fatal five, these really preventable, sort of low level medical stuff that, if not treated, can become a big thing. So we wanted to talk a little bit about that today, and we wanted to give our listeners an idea of how to spot a UTI, what to do about it, and how to advocate for somebody else who might be at risk.

[REN]: So, I think the first question, of course, is, what is a UTI, anyway?

[VIRGINIA]: UTI stands for urinary tract infection. So when you have a UTI it means that your urethra which is the little tube that carries pee from your bladder to the outside of your body, has gotten infected. Sometimes that infection can also spread up to your bladder, or even your kidneys.

[REN]: And how does that even happen? How can we get infections…how can we get a Urinary Tract infection?

[VIRGINIA]: I mean honestly lots of things can cause UTI’s, but most commonly the bacteria that causes them is ecoli, which comes from the intestines. For most people, the urethra is located pretty close to where feces leave your body. From the large intestine. And that means you can get a UTI from something as simple as wiping poorly when you go to the bathroom.

[REN]: I know that some other things that can contribute to urinary tract infections is not going to the restroom regularly. So, if you hold, ummm your urine in for long periods of time, that can increase your chance of an infection.

[VIRGINIA]: Yeah, that can- that can definitely contribute, because for the most part like when you pee it flushes urine out of your urinary tract, so if you’re going to the bathroom regularly and [getting rid of the bacteria? Hard to hear. Brief pause.] then you are at much lower risk. I just wanna…take this moment to clarify- - in case you couldn’t tell, I’m not a doctor. [Laughter.] None of this is designed to be medical advice or opinion.

[REN]: [Laughs]

[VIRGINIA]: Um, we’re just sort of talking about like some very basic things you can find them on the CDC website, the Mayo Clinic website, just sort of the bare basics.

[REN]: And, you know, part of the reason that we’re having Virginia talk about this is that doing facility work, you know, we go out as advocates and, you know, try to figure out what is causing people to get sick, if we see things where people are getting, you know, a lot of sicknesses are occurring and even deaths are occurring. So you know a lot of our conversations have to do with preventable conditions, and so, you know, Virginia, as one of our institutional advocates, does have experience going to the institutions and talking to people about these conditions.

[REN]: (Continued): So, you know we talked about, what kind of a UTI is and sort of some of the, you know, how you can get a UTI- it’s something that anyone can contract?

[VIRGINIA]: The short answer is yes. There are some people that are at higher risk, though, including people with mobility impairments, people with diabetes, people who use catheters and people with poor hygiene.

[REN]: Okay, so higher risk folks obviously that- that’s an area that covers a lot of our listeners and our constituents. So, that’s one of the reason’s why this topic’s important.

[VIRGINIA]: Yeah, I mean it’s not always stuff that you can go like, “I’m at a higher risk thing, I need to change this about myself.” Like, if you have a spinal cord injury, and therefore, you know, going to the bathroom looks a little bit different, and you can’t necessarily feel pain, that’s not something that you can change, unfortunately. You have to know you are at risk for something like that.

[REN]: So what are the most common symptoms of a UTI?

[VIRGINIA]: I think that most people who’ve had a UTI would tell you that pain & burning when you pee are the most common symptoms. A UTI often makes you feel like you have to pee a lot. Or, um, you have to pee very urgently. But with very little output. Pain is also common, but that can present as pain in the groin or even back pain sometimes. But older adults, are less likely to have pain as a symptom. So it’s important to keep an eye out for other symptoms. Like, weird looking or weird smelling urine. Fever, nausea, vomiting, or altered mental status.

[REN]: Some folks are going to manifest these symptoms kind of differently. So how can someone who has a UTI, how can you tell, let’s say if they have a UTI? If they don’t communicate verbally or communicate differently? Or, that they process pain differently?

[VIRGINIA]: Yeah, I mean as you might guess folks with certain abilities are at higher risk for UTI’s, but those UTI’s can be hard to spot. A second ago I mentioned altered renal status, and that is a big deal when you are working with folks who communicate differently, being able to tell that maybe they do have a UTI. Because a lot of people start acting strangely when they have a UTI. They can become confused or physically disoriented. Um, which can lead to falls.

Sometimes they might even look physichotic which is one of the reasons why, you know, if somebody’s been screened to go into, you know, a hospital on a psychiatric basis, they’re usually going to screen for a trinary tract infection or at least you’d hope to. You would hope that they would. They might also- the disorientation could lead to falls, and of course they might have a fever as well.

[REN]: The reason I kind of jumped on a mental health status is that- I used to work in the field as a crisis worker. Specifically for folks with developmental disabilities, and mental health conditions, so dually diagnosed is the common term. And one of the things- - Some people might, um, recognize me because of my bowel obstruction video. And, we talked about how with bowel obstructions you could often see people acting erratically, they become highly agitated, they can even become violent.

And that can lead to sort of this, um, assumption, that they’re having a mental health crisis, and they’re having a physical crisis. Like you said, one of the things we would do is when people were being screened for potential hospitalization, we would always ensure that they were getting tested for urinary tract infections, because that can lead to a lot of erratic behavior and agitation, that people, you know, can’t communicate verbally or have difficulty processing pain and, you know have difficulty communicating that pain.

So, one of the basic screenings that they should do is making sure that they don’t have a UTI, because as a dear former colleague, kind of still a colleague, part time colleague, used to say- is that- UTI is the only psychiatric condition, that you can cure with antibiotics.

[VIRGINIA]: Truer words have never been spoken! So, you know, the altered mental state is in itself kinda dangerous, to the person, like false erratic behavior can occasionally themselves be deadly so that’s definitely something to watch out for. But that’s definitely a UTI—an untreated UTI by itself can also be fatal, Like I mentioned earlier, a UTI can spread to the kidneys, which can be really painful and really dangerous. And can cause Sepsis. Specifically Uro-sepsis, or sepsis of the urinary tract. From the urinary tract. And that could very easily lead to death, scarily enough.

[REN]: I believe DLCV, several years ago, did some work investigating a string of deaths at a facility that was contributed to sepsis due to UTI’s.

[VIRGINIA]: Yes. And you know every year when we are—every year we put out what we call the report on critical incidents, or the critical incident report, where we look at all the injuries and deaths reported by the state facilities, and that’s one thing that we do for each death that comes through: We look through the record, we look to weather a UTI, or like some other really preventable medical thing played a role in that person’s death. And… (pause) you know it’s something to watch out for, it’s something to be very cautious about. Since we actually did an investigation several years ago which you alluded to, we haven’t seen it quite as much, which has been great. It’s reassuring. But, you know, something you’ve always got to look out for in Congregate care settings.

[REN]: Right, you know and we’ve said facilities- this can be obviously a state psychiatric facility, we’re talking about nursing homes, we’re talking about assisted living facilities, even group homes and other living places where you have folks who are at risk. Um, so that’s always something to look out for. Now that we know how serious a UTI can be, how can we prevent one?

[VIRGINIA]: So, hygiene is clearly the most important thing. If you’re able to go to the bathroom without assistance, make sure that your hands are clean and that you’re wiping front to back. If you are helping a loved one who can’t use the toilet by themselves, it’s important to make sure that you’re helping them to the bathroom, or checking for incontinence at least every two hours. If the person uses an incontinence brief, it’s important to change it as soon as it gets dirty and in general you just want to make sure that you’re keeping the person, whether, it’s yourself or a loved one, as clean and dry as possible.

[REN]: Similar to the, uh, bowel obstruction tips, you can also include UTI prevention in care planning tips/packages. Typically what we see with care plans that are developed in the community, is encouraging individuals to drink water. So, that’s a really important way to kind of keep the body functioning the way it should and prevent UTI’s So, you know, you see care plans where you encourage somebody to drink like 3 to 4 glasses of water a day depending on their tolerance level and you know…(pause) tracking to see if they experience any pain and so there’s also ways for more formal care providers to make sure that that’s part of an individual’s treatment plan to prevent the infection.

[VIRGINIA]: Mhhm. Having your perspective is…really cool and really valuable. Especially when talking about like, how urinary tract infections can lead to, like, what is essentially a psychiatric crisis. Like SO MANY PEOPLE DO NOT REALIZE that that is the case!

[REN]: Mhhmm. (pause)

[VIRGINIA]: You know-the-

[REN]: Mhhm.

[VIRGINIA]: It’s something that like once you realize that that’s a factor, you start seeing it again and again, immediately.

[REN]: Part of that, again, is this idea that when you have somebody who has difficulty communicating verbally, and is acting in a way that is unusual, it’s always a good rule of thumb is to check their medical first. To say, Okay, let’s check their bowel movement chart. When was the last time they had a bowel movement? Let’s check how much water they’ve been drinking. Um, have they been going to the bathroom, you know, like every… every 15…like every 15 minutes. That’s really unusual. So marking those out is a really great way to start doing detective work on what’s going on.

[VIRGINIA]: Yeah.

[REN]: So, what should someone do if they’re experiencing some of these symptoms and they think they could possibly have a UTI?

[VIRGINIA]: First and foremost, get it checked out. Like if you can make your own doctor’s appointment, then do that! If you can’t have someone you trust make an appointment for you. The good news- and there is good news in all of this!- is that, if caught early, UTI’s are very easily treated. They don’t have to be…they don’t have to be a big deal. I think most people have had a UTI, most women I know. So…again…get it checked out.

[REN]: Yeah, and again, any like, formalized care provider should also be, if someone is experiencing those kinds of symptoms should always go ahead and you know, get somebody checked out by a nurse and doctor. Get them to an appointment so that they can get that treatment ready.

[VIRGINIA]: Yeah. And we’ve talked about this a little bit throughout, but I just want to sort of end on the note of ..UTI’s are a serious concern among people with disabilities. Like UTI’s are part of the fatal five. Some…they’re also used, instead of the fatal five which is the seven medical triggers but both of them are a list OF sort of common, and preventable to an extent medical conditions that can be very dangerous if not handled properly.

And like I said, if you catch that someone has a UTI they’re usually going to be fine, but people with disabilities, depending on what the disability is, may not be able to communicate that…. They may not even be able to communicate what they’re feeling to someone who could get them treatment. They may not even be able to tell that they’re having symptoms.

People who need assistance when they go to the bathroom are also very vulnerable when it comes to this and they rely on the people who help them to do a good job, you know, to practice proper hygiene. But that is, you know, relying on somebody else to do the right thing. So we’re just hoping that this podcast educates individuals and providers as to what they need to keep an eye out for and what they need to prevent UTI’s.

[REN]: Yeah and I think this information is really good for individuals who want to, you know, advocate for themselves and self-advocate and make sure that they’re, you know, taking care of themselves and getting the proper care. It’s good for family members, or, you know, other informal care providers who are assisting folks, making sure that they’re aware of what’s going on. And then, of course, you know, like I said the formalized care providers, making sure that, you know, they’re keeping track of what’s going on.

And if you happen to have, you know, a family member or friend, or someone close to you, that is in a congregate care setting feel free to ask the staff about, “Hey, you know, I’m worried about UTI’s, how are we making sure that prevention’s in place? What kind of plan do you have?” You know, that should be a conversation that you should easily have with the folks who are taking care of these people. And on that note, I think that we are going to wrap up this lively discussion! Thank you so much, Virginia, for educating all of us on UTI’s.

[VIRGINIA]: Yes, thank you for having me on our podcast.

[REN]: You’re so welcome!

[Laughter.]

[REN]: And now, a dLCV Highlight!

[Pause.]

[REN]: [Continued]: So yes, Virginia, again, thank you so much for appearing on this podcast for the first time to explain to us about a preventable condition that we should all be informed about and advocate for. Or about.

[VIRGINIA]: I mean, I wouldn’t say go out there and advocate for urinary tract infections but… listener, you GO OUT and you advocate for good hygiene, you advocate for all of the preventative measures that we talk to you about, and, you know, let us know how it goes! We love hearing your stories! Maybe feature- “Here’s how I use the advocacy tool kit.”

[REN]: Yeah, absolutely! And thank you all, for listening to this episode of Rights Here, Rights Now! Brought to you by the disAbility Law Center of Virginia. We’re available on Apple Podcast, Spotify, and where ever you get your podcasts. Don’t forget to subscribe, and leave us a review.

[VIRGINIA]: If you need assistance, or want more information about dLCV and what we do, visit us online at www.dlcv.org

[REN]: Follow us on Twitter at @disabilitylawVa, and share us with your friends.

[VIRGINIA]: Until next time, I’m Virginia Pharis.

[REN]: I’m Ren Faszewski and this has been, Rights Here- -

[VIRGINIA]: Rights Now!

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