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What does it mean to you to be able to toilet yourself? What happens to patient dignity when they are deprived of the capacity to “mind their own business”? Rachel shares with us what is happening to patients even when they are not on mechanical ventilation.

Episode Transcription

Kali Dayton 0:28
Hey, everybody, before we dive into this next episode, I have to attempt to thank you for your support. I started this podcast about a year ago was more than a random idea. It really was a spiritual prompting. I still don’t know what I’m doing. But the why is becoming more clear. Thank you to those that have reached out with success stories, gratitude questions, and for sharing your excitement with me.

You are why I do this COVID has been extremely difficult, but I think it is slapping us in the face with the repercussions of our sedation and immobility practices. I have been doing webinars with teams around the world and their openness and excitement for change has been contagious. The best part is they are actually making headway. We’ll have more episodes about their journeys coming up. Since starting an Instagram page for the podcast, I have seen a lot of the classic nursing memes and jokes about sedation and wanting a flattened, quiet patient. I couldn’t help but respond with a simple sad face or a gentle statement about being unaware of patient perspective.

Each time the original poster contacted me apologizing and thanking me for the podcast page and the insight provided on Instagram account, they did not have to do that. That’s how good these people are. In a world of so much conflict and incivility with different opinions. These interactions have reaffirmed what I have deeply felt and repeatedly said, people are good. And healthcare attracts some of the best, almost every single healthcare worker is still in it to improve patient care and outcomes. So thank you for preserving my faith in humanity, and for sharing your goodness with me.

For those of you that are new to the podcast, start from the beginning. Everything moving forward will make more sense with a foundation the prior episodes provide. So don’t miss out. Today, we’re going to go beyond mobility on the ventilator. I think to have the best success with early mobility, we need to make sure that we are starting out strong no matter at what point patients are admitted. On a personal note, I have a daughter with a neuromuscular condition that may result in her being completely immobile the rest of her life, I have a personal interest in preserving strength and function even without being on a ventilator, as her quality of life depends on my own functionality. So if I was admitted on a medical floor, or if I was in the ICU on a high flow nasal cannula, I would want to preserve my ability to toilet myself and my own business. With that. Let’s talk about what has been going on with our COVID patients. Today we have Rachel with us. She is a critical care Tech and a PCU or a progressive care unit in the southern states of the USA. Her neuro PCU quickly turned into a COVID unit when her state was hit really hard. She contacted me after hearing the podcast with a lot of really good questions and concerns that I thought would be important to discuss together. Rachel, thanks so much for joining us. Thank you give us a little background of your PCU setup right now.

Rachel 3:52
Yeah, so right now on our unit, there’s technically three wings. And in those, each wing there’s like 24 beds, meaning there’s like 74 beds total on my unit. There’s about two of the wings that have six rooms on each side that are doubled up. So those those rooms that are doubled up fit two beds per room, except for like most critical wing. So we kind of have it in levels where one wing is, like really critical care, people that are on high flow, people that usually just are not doing well. They’re about to be intubated, and then the other wings are kind of less severe. So one is people that maybe still need oxygen but aren’t on high flow or on room air. And then our last one is a non COVID unit.

Kali Dayton 4:45
No, that’s a big unit. That is a big busy unit and signs we think PCU not that critical, high flow. We’re doing really high high flow settings with COVID patients and you are working You know, those patients are high flow, correct?

Rachel 5:02
Yes. Uh huh. Yep.

Kali Dayton 5:04
And then get intubated and then sent to the ICU and coming back to you. Mm hmm.

Rachel 5:10
Yeah, that’s kind of the crazy thing that happened with COVID, especially in this state, you know, is a huge surge in the last few months, it’s been, it almost feels like it’s a, it’s another ICU on my unit, because our unit already is doubled up, or ICU at our hospital. And so with this huge surge, a lot of our patients that are on high flow, I mean, I hate saying this, but in my eyes, from what I’ve seen, they usually either have, it goes two ways, they either are being intubated, or the pass away. So a lot of a lot of intubations going on, on our unit, which is really scary.

Kali Dayton 5:53
And as a caretaker, you are the one at the bedside, having really intimate moments with them. What kind of discussions do you have with them? What is that, like?

Rachel 6:04
You know, it’s kind of one of my favorite parts of my job is, is being able to get to know them, and being so intimate with them, sometimes just knowing a lot of their personal likes and dislikes. But again, the hardest part lately has been hearing about their biggest fears, because things are so unpredictable. And a lot of scary things have been happening. That, you know, we talk a lot about that one of the biggest things that they’ve asked is, is what is intubation and we like, like a lot of them are super scared to be intubated.

They, I mean, they asked me if they’ll wake up from it, they’re afraid of waking up as a vegetable. Those are probably the biggest things that they talk about when it comes to intubation. And these are young, I mean, sometimes they’re really young people that are 35 years old. Some are in their 40s or 50s. And they’re like, I mean, I’ve never seen people so scared, not knowing what’s going to happen to their health to their lives right after being intubated.

Kali Dayton 7:04
And after hearing the podcast, you have this different perspective, right than those that you work with.

Rachel 7:10
Mm hmm.

Kali Dayton 7:12
A little bit about why you reached out to me and what your struggles have been in this context of watching people get intubated, and also watching them come back after being sedated for so long. What’s been going on in your world?

Rachel 7:26
So I’ve had this huge conflict, because I have listened to your podcast. And I’ve actually seen amazing things that the hospital used to work for what they’ve done with their patients that have been intubated in terms of weaning them off of, you know, these heavy drugs early and getting them more alert and awake and getting them up out of bed and walking. And it’s amazing.

So I’ve, I mean, I’ve shared that with some of my patients here when they are super scared, but it’s hard to see. I guess the nurses that I work with the doctors not really give those patients an option. A lot of these patients don’t even realize they have that option to be weaned off a medication earlier on and be able to be alert wall intubated. And and I’ve seen a lot of patients come back, just a vegetable, literally a vegetable.

So on my unit before COVID, I feel like there’s a huge sense of fear on my unit between healthcare staff, where they don’t want to get people up. So even if someone’s independent learning oriented times for able to do things on their own, they’ll put a bed alarm on their, on their bed. So we’re constantly going in, even if someone’s able to get themselves to the bathroom. So that in itself was really hard kind of before this huge surge with COVID That’s especially worse since this huge surge with COVID has hit because now that people are on high flow, everyone’s like, “Okay, now we really can’t get them up, like they’re gonna be sat there, you know, they’re gonna fall, they’re gonna die, they’re gonna, you know,”- they just have this really huge fear.

And, and, for example, like I, I’ve worked with patients that have been on high flow on our critical COVID wing. And some of these people have been independence, you know, they’re able to move, their mobility is really good. They just need more oxygen. They’re just having a hard time breathing. But other than that, like, they’re really good in terms of, you know, standing up, they can move to bedside commode. And so I kind of embrace that because I know they can do it in you know, sitting in a bed or a chair for super long can really affect you.

And so, you know, I’ve tried to help these patients get to bedside commode if I know that they can or use a urinal, but nurses have come in and actually like yelled at me say, “Oh, no, what are you doing? Like you can’t help them. You can’t get them up. They’re not supposed to be doing that.” They’re going to do that, which they do tend to do stop for a little bit. But, you know, if they’re using a urinal or a bedside commode, it’s not for very long and I can watch them and they’re stable enough to do their business and then they get back into bed. They’re totally fine.

But what’s happened with these independent people that I’ve seen and worked with is they’re intubated. And then they come up, and they’re just vegetables like they, one guy in particular, he was he’s from another country. So somewhere outside of the United States, there’s a language that I mean, even our translating machines doesn’t recognize his dialect, whatever he speaks. So that itself is a huge issue.

But he he was able to do pretty much everything himself when he when he first came in our unit. And he was one of the ones that was able to use a urinal by himself, he stood up. I remember one day, he was standing up at the bedside just for a second, and the nurse popped her head and and yell, she was like, “Hey, you got to sit down right now.” Like “You’re desatting,” – super freaked out.

And so he’s pretty much bed bound, like they would not let him get up. So after he was intubated, he eventually needed to be intubated. So he was intubated, he went to the ICU. And then after he was extubated, he came back to the unit. And I saw him probably about a week and a half after his extubation was when I had him as a patient again. And he could look at me, and that’s about it. I mean, he was like, like, he could not move his body using continent. I would go in there, he could not do anything for himself. And that was super hard for me.

Kali Dayton 11:47
Could he lift a finger?

Rachel 11:49
No.

Kali Dayton 11:49
Did he make eye contact with you?

Rachel 11:52
Oh, he could….I don’t know, if he didn’t necessarily make eye contact. He would just kind of open his eyes. If I went in there, and I said, “Hey, I’m here to take your vitals or trying to do something for him.” He would just open his eyes. I don’t. I don’t remember him actually looking at me. But just looking up and like he I mean, he literally was just a vegetable, like,

Kali Dayton 12:15
Not the person that you knew before.

Rachel 12:17
Oh, no.

Kali Dayton 12:19
And after hearing the podcast, where we’re talking about deconditioning, and delirium, what did it make you feel to look at him and see all of those things manifested in him?

Rachel 12:30
Honestly, I, I actually went home that night and cried, I cried for him. Because I felt responsible. I mean, literally, the thing I thought of that whole day when I had him was, we did this to you. Like, I felt like we could have prevented that hemorrhage in that stage sign getting emotional. I feel like we could have prevented that. And we just made him a lot worse, like, he should not have been in that stage or to that point, even a week and a half after extubation. And like me still like full Max assist. He stuck in bed. He’s incontinent, like this is not the same person. What have we done to him?

Kali Dayton 13:13
So then you’re hearing about other COVID patients, probably older than him less functional on admission that are still able to walk after being intubated?

Rachel 13:24
Oh, yeah.

Kali Dayton 13:26
It’s haunting with this knowledge comes a sense of responsibility, but it is not your fault. It is not your burden to bear. What was done there was done in ignorance, I’m sure nothing malicious about it. I always want to clarify and never want to demonize any providers. But so often, especially with COVID patients right now, we are quickly and deeply sedating people and paralyzing them, and usually unnecessarily. And so that is haunting to those of us that know that patients can and should be awake and moving for the most part on the ventilators, even with higher ventilator settings, that we are ruining their lives with our bad practices. And as an immigrant, I would imagine he’s he likely need his body to survive. He needs to work with his body to provide for himself for his family. Yeah, so what does his future look like? Who is going to take care of him?

Rachel 14:23
Exactly.

Kali Dayton 14:25
And why is he not being rehabilitated?

Rachel 14:28
Right. Well, that was my other question was, I mean, the whole day that I had him, I didn’t see one physical therapist in that room. I was turning them obviously, because, I mean, he’s my patient. I had to clean them up. q2 turns but I mean, I was just like, “Wait, what are we doing? Why aren’t we helping them more? Why are we moving to more? Something!” you know?

Kali Dayton 14:50
You know that the Q2 turn, it’s so important, yet it makes me flinch a little bit because in the Awake and Walking ICU, it’s “walk TID”. That is The standard q2 is the exception. Walk TID is the standard in the awake and walking ICU. And when you’re doing that when patients are awake, and they’re shifting themselves in the bed, or they’re sitting in a chair during the day, and they’re walking, they don’t have to be turned every two hours. And they don’t get to the point where they can’t even turn themselves. So that that is extremely haunting. And and did you see physical therapy work with him or any other patients on high flow prior to intubation?

Rachel 15:28
With that particular patient, I don’t think I ever saw physical therapy with him. The most I saw with him was was just nurses feeling at hand like “Hey, sit down, you can’t get up, you’re on high-flow, you’re gonna desat, that you need to stay in bed.”, things like that. It was kind of the biggest thing that heard that speaking of physical therapy, I mean, I there was another patient that again, can move really well. He was also on HiFlo, though, wanted to simply sit up and eat for dinner.

And I remember talking to one of the nurses about it, just because I was like, you know, he’s moving really well. He’s doing really well, I think he could, you know, he do well standing up and eating for dinner while on HiFlo. Remember, there’s a physical therapist, right bias while we’re talking about this. And she’s like, Oh, no, absolutely not. He can not get up and we’re like, but he’s moving. Well, I’m pretty sure he even had ordered from the doctor like the doctor wanted him up. But physical therapy was like, “No, no, he’s on high flow. He can’t get up.” It was very interesting. I’m not sure why.

Kali Dayton 16:34
There is a lot of fear. I mean, there’s a lot of liability on nursing, especially if there’s a fall, right. Yet we create fall risks and we can create them. Even if someone’s not intubated, we leave them in bed, that is where they will stay. I tell patients that all the time you stay in bed, and that is where you will stay. And that applies across the board and every part of the hospital. And I when I think of someone on high flow, I imagine that they’re going to have higher work of breathing, if they’re not moving, and they have a high metabolic rate going, they’re more likely to lose muscle quickly.

And they’re going to be a higher aspiration risk. So in the Awake and Walking ICU, no one eats in bed, that is a strict NO. So if you make it so someone can’t even get to a chair to eat, they’re going to get weaker, quicker, the respiratory muscles are going to get weaker, and they’re going to be a higher aspiration risk, and they’re not going to be able to eat. So again, it’s all about setting back into the big picture.

But that must be frustrating as a tech wanting to help people be willing to go in and get them up. Sometimes it’s a hassle to do that. To get someone to the toilet. It’s an extra step, right? And get you’re willing to do that. But you’re not allowed to do that. Because there’s a very different perspective and prioritization in your environment.

Rachel 17:53
Mm hmm. Yeah.

Kali Dayton 17:54
And there’s got to be a lack of humanity, or dignity. When patients are not allowed to get up to a toilet, I think of you know, my own dad is in his 60s, but he’s extremely independent, extremely strong, runs his own medical practice. Yet, if he was in a COVID, ICU, or in a COVID unit, that a Foley catheter would be forced on him if he didn’t, because he wasn’t allowed to get up humiliates him for me. So what does that like these people before they’re intubated, they’re awake, they’re wanting to get up? They’re not allowed to? What do you see that? What does that like for them?

Rachel 18:35
I mean, people hate it, especially when they’re independent, and they’re alert, because care between someone that’s independent versus someone that maybe is that down, is going to be different. So it’s hard to see the management or my unit just say, “okay, they’re generalized care, pretty much they’ve said, everyone’s gonna get a fully or a pure wake, or a condom catheter is they’re on HiFlo”, or on these two, you know, critical care units, because “we don’t want them to get up”.

And for people that are independent, unable to do things for themselves, it’s confusing to them, they don’t really understand why they. It’s unbearable for them to I mean, to be sitting in a bed for so long. You’re gonna have aches, you’re gonna have pains, your body’s gonna change, and then they feel that. They feel it and, and it’s hard for them. Even as you were talking, I was reminded of another patient. He was sitting he was independent, able to go to the bathroom by himself move around his room when he first came to our unit.

And over time, I mean, he was in the hospital for a while, and he I don’t know if because of his the length of his stay, whether physical therapy stopped working with him as much or because he was there, people I kind of got lazy with, you know, allowing him to get up. But over time he he was kind of forced to sit in a chair, he wanted us in the chair versus his bed. So they’re like, Hey, you can sit in your chair, but they put a chair alarm on him. And anytime that your alarm would go off, staff would run in there and say, “You can’t get up. You can’t get up. You can’t get up.” But he’s used to go into the bathroom or walking around his room. You know, it’s as simple as maybe just turn it off the bed. Or maybe you can stand by assist and just watch him make sure he’s safe while he’s going to the bathroom.

Kali Dayton 20:33
Let him mind his own business. Yeah, a huge sense of dignity. If I’m on high flow. Heck, if I’m intubated, let me wipe my own backside.

Rachel 20:42
Exactly. Well, and he got to the point that’s what we’re seeing is like you got to the point where he eventually by the time, the day before he left the hospital, he had to be discharged to rehab or have home health come visit him because he was so weak. He, I went in there to help him. Because he had become incontinent.

He had pooped on the chair because he had been in the hospital so long people wouldn’t let him get up to the get up to the bathroom by himself that he just ended up having an accident. He couldn’t, you know, he couldn’t get up on self. He was waiting. And so but when I did try to get him up, it took probably three or four of us. And that was even with a sit-to-stand. I was like, how did this happen? He used to be independent going by himself. And now he’s incontinent. He just made a minute. And it takes four of us. He was he was probably late 50s.

Kali Dayton 21:35
And he walked into the hospital completely functional.

Rachel 21:38
Uh huh.

Kali Dayton 21:38
Never intubated.

Rachel 21:40
Nope.

Kali Dayton 21:41
And then couldn’t even get himself out of a chair couldn’t control his bowels and discharge to a SNF.

Rachel 21:46
Yep. Yep.

Kali Dayton 21:50
That is inhumane.

Rachel 21:51
It is inhumane, completely 100%.

Kali Dayton 21:55
It’s a very busy unit hard situation COVID hard. And I think we are understaffed and under utilize care techs. I think they’re vital and maintaining these points of humanity. But you’re there you’re willing to you’re wanting to you’re available. So that’s not the problem. The problem is the policy that the priority.

So you’re telling me that your unit, it was made mandated that all patients on high flow had to have Foley’s or some sort of device, and they were not allowed to get up. That blows my mind, because I had a friend on high flow, sitting there for 10 days in the hospital. And I was messaging her. And in my mind, it was even more important that she get up because her oxygen needs were increasing, and she’s getting closer to needing the ventilator.

I was telling her get up as much as you can demand physical therapy, occupational therapy, because they might sedate you there. And this is your prime time, this is your time to stay as strong, maintain as much muscle as you can before you’re intubated. And you’re going to you’re less likely to be intubated, if you’re moving while on the high flow. And so that blows my mind that they would take that and completely do the opposite, and make people more likely to aspirate more likely to decompensate and are more likely to be intubated, and much more likely to die and be or to be discharged to a sniff rehabilitation. Eltech. They’re creating that storm unnecessarily before people even are sedated.

Rachel 23:30
Yeah, well, and that’s where I see all of these intubations going on. I mean, there’s numerous a day, I can’t even give you a number. It’s just the constant call for airway team to do these intubations. I mean, you can hear it just constantly, constantly. And I’m like, but maybe in my mind after especially after listening to your podcast, I’m like, maybe we we wouldn’t get to this point. If we would get people up. If we, you know, are we making this worse is our fault, not our fault. But I mean, are we contributing to this where they’re having to be intubated? Because we’re not moving them? Because we’ve told them they can’t get up because we’re not allowing them to be independent to be human, pretty much. I mean,

Kali Dayton 24:15
It’s usually it’s really hard to measure. But research has even shown that the less people move, the more likely they are to be intubated, and then re intubated later. So yes, stay tuned for another episode later, we’ll be having a researcher talk about how muscle wasting contributes to that inflammatory process and multi organ failure. So whereas COVID A very inflammatory disease, by allowing people to sit there and waste away, we are exacerbating the inflammatory process.

So yes, Rachel, you’re totally right, then maybe it’s more worthwhile to give them a ventilator so that they can move rather than leave them to huff and puff on their own, and deconditioned without moving another thought was, you know, you’ve had this patient that’s waiting to go to a sniff. So their hospitalization time is probably prolonged, your your beds are being doubled up, your staff is short. And yet, you’re implementing protocols not you, but your staff, your team, implementing protocols, that prolonged hospitalization, that will keep those beds occupied longer.

So between the PCU and ICU, they’re doing things that will keep people stuck in the hospital, and more likely to die when you’re having high death rates and high admission rates. So the best way to keep that down, to get patients out to get them discharged straight home, is to keep the moving. That’s how you free up beds and staff. And last thought you told me about mentioning to a patient that some patients are not sedated while on a ventilator. And he had an interesting response. Can you tell me more about that?

Rachel 25:55
Yeah, so the the patient I kind of explained to actually one thing I do like to do is when I do kind of get on these conversations with my patients that are afraid to be intubated and talk about the fact that they don’t have to be under sedation for so long that they can regain consciousness, their independence sooner and faster. Sometimes I’ll show there’s a there’s a video out there of a guy playing violin while he’s intubated.

Kali Dayton 26:24
We’re gonna interview him later.

Rachel 26:25
Yes, I love that. I love that video. I love showing everyone that video because I’m like, It’s possible. It’s realistic. And you know, I show that to my patients, and it calms them down. And then slowly, like they are filled with so much relief. They they’re filled with more hope. They’re not as nervous, not as scared to be intubated. You know, if that’s the case, they feel like they have more options, and more choice to talk with their to their providers and decide what they want to happen next, so that they don’t have to wake up investable.

So that, you know, they have that competence that you know what, I’m not going to end up that way. Look at this guy. He’s playing the violin on it. Well, it’s abated. So, yeah, it’s such a huge chain, and it gives them such peace of mind. I mean, so many people are so fearful. It’s a huge fear for for these people, which I don’t blame them. I mean, who wants to be intubated? Really, but it’s not, it’s not as scary as we make it out to be. It doesn’t have to be that way.

Kali Dayton 27:27
And there is a sense of total vulnerability when you have no family at the bedside, no one, you know, and then you’re being told that you are going to check out and be completely at the mercy of all these strangers in a critical life and death situation. Oh, yeah. No, you’re you’re mentioning alluding to the fact that, hey, they could have autonomy, they could make their own decisions, they could be present, they could be informed, they could still communicate with their family on their devices. And that would bring me so much peace.

Rachel 27:55
Mm hmm. People want to know that they’re gonna have that option, you know, people that are already in that state before intubation, they want to be able to have that back their life back.

Kali Dayton 28:06
And yet, in places where they don’t practice that, where they automatically sedate everyone, patients are not given that option. They do not know what’s being chosen for them. That potentially a life of disability, PTSD, and even death has been chosen for them because of automatic policies or cultures that we have.

Rachel 28:28
Yeah, no, doubt.

Kali Dayton 28:30
Yes, this has been completely depressing. And I’m really appreciate you talking about these things. Thank you for humanizing your care unit. Your work and all care techs are so valuable and keeping our patients functional, personalized and safe. So thank you so much for all you do, and for talking to us about it. Thank you. It’s been so nice to just kind of vent all this. It’s cathartic, right?

Rachel 28:58
Yes.

Kali Dayton 29:01
Well, it got off your chest and we have benefited from it. Thanks, Rachel.

Rachel 29:05
Thank you, Kali.

Transcribed by https://otter.ai

 

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