Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
What Are the Signs That My Mom Can Be Weaned Off the Ventilator in ICU?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Tom, as part of my 1:1 consulting and advocacy service! Tom’s mom is sedated and ventilated in ICU. Tom is asking if his mom will be safe if she ends up in LTAC.
My Mom is in ICU with a Tracheostomy. Is it Safe For My Mom If She Ends up in LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tom here.”
Tom: You mean like soreness or achiness?
Patrik: Yeah, absolutely.
Tom: Or sharp pain?
Patrik: More the achiness I would think.
Dad: I read her chart.
Patrik: But maybe you can ask her that question. Is it sharp pain, or is it achiness? Maybe you can ask her that question. Maybe you can get a yes or a no out of her to begin with.
Tom: Okay, thank you so much.
Patrik: The other challenge is, it sounds to me like she’s been on the fentanyl for quite some time now, hasn’t she?
Patrik: So with her being on the fentanyl for quite some time, the other challenge there is fentanyl is highly addictive. It’s a highly addictive drug, so if they turn down the fentanyl, she might even go into withdrawal.
Tom: Yeah. I did ask them that a couple of days ago, and they explained to me, generally speaking, yes, that’s possible but that’s her response … I don’t know exactly how you inspect that withdrawal threshold but at that time, it was the day withdrawal was occurring. I want to say it was on Friday when I asked that question about the withdrawal from the benzodiazepine. I forgot what they’re called.
Patrik: Oh, benzo. Yeah.
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Tom: Yeah. He said, “Well, right now her response seems appropriate for the level of pain she was in because of the tracheostomy and her deconditioning.” I was like, “Okay.” I just wanted to be clear that some people do get addicted or can. He said, “Yes, but right now I don’t have that concern. It seems appropriate that she’s in this pain and responds as high,” so this that or the other. How else could we assess if she’s having withdrawal, and how do we address that?
Patrik: Yeah. I’ll tell you how they can probably assess whether she’s in withdrawal or not. If they stop the fentanyl now, what would happen next? If they stop the fentanyl, would she go into withdrawal? They would have a withdrawal scale to assess. That’s number one. Then you could assess from there. I’ll give you another indicator or scale that you could assess. If you ask her on a scale from 0 to 10 with 0 meaning no pain and 10 being the worst, can she give you a number? Can she give you a number with her fingers?
Tom: I was going to try, but her fine motor skills are very dull right now. I don’t feel confident. I actually just think maybe a scale of 1 through 5 might be a more probable response for her.
Patrik: Yeah, sure. Yes.
Tom: But even then, she doesn’t seem to have full control of her movements. Even when we was using the point pen yesterday, her hands are trembling when she’s pointing. Not so much uncontrollably but very noticeably, and then it’s evident that she’s deconditioned because holding her arm up is a task for her, and she actually can’t do it very long.
Patrik: Well, if you are telling me that her hands are trembling, my first question is, is she withdrawing?
Tom: Well, in the past, I haven’t considered that, but would that be possible while she’s still getting it on a drip, or would that only be possible when they say, “Oh, we haven’t given her any in the last few hours,” or how does that work if she’s still on the drip and shaking?
Patrik: Yeah, so let’s just say for argument’s sake, maybe 6 days ago was she on 100 mcg an hour? If she was on 100 mcg an hour 6 days ago and now she’s on 50, is that enough for her to withdraw? I don’t know. I’m asking the question.
Tom: Okay. Yeah, I don’t know. I don’t know where it varies, and I don’t know if it’s documented. Every change is per hour in the chart. I think it’s set by the doctor’s orders and then I don’t know how it varies throughout the day. Okay, so let’s say we ask that during visit tomorrow or even tonight. We’ve been calling at night. What would be the next? How do we address an action item after asking is she withdrawing? Is that limiting her ability to potentially communicate using her hands? What would be asking them to do that? What is their option after they say, “Okay, she’s possibly withdrawing?” Then what happens there?
Patrik: Yeah. I do believe she needs a review by a pain specialist potentially.
Tom: Okay. Is that something outside of ICU or is that something within their reach?
Patrik: It depends. They might have a pain specialist on their team, or they might have a hospital team with a specialist.
Tom: So then requesting an assessment from a pain specialist to rule out withdrawal and properly assess pain? Is that what we’re asking?
Patrik: Yeah, very much so. Just like you were telling me that last week or the week before she was on propofol, and she was on Versed. Then eventually they started her on Precedex, and now everything is off on a sedation level. That’s at least what I understand. So, the same needs to happen with the fentanyl. They’ve managed well from getting rid of the propofol and getting rid of the Versed by using Precedex, and now Precedex is off and they need to do the same with the fentanyl.
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Tom: It would be a step down from fentanyl. Is it a step down or you’re suggesting complete discontinue?
Patrik: My suggestion would be.
Tom: They’re giving her Tylenol.
Patrik: That won’t help. That won’t replace the fentanyl, at least not to begin with.
Tom: That’s what I figured, but I saw it on the chart. I was like, “I wonder how that works.”
Patrik: Yeah, absolutely.
Patrik: No, no. Similar to Versed, for example, because it is addictive, the next step would be to reduce it by half and see what happens. Go down to 25 mcgs per hour and see what happens.
Tom: I’m sorry. We don’t know if she’s sleeping through the night, but we’re going to ask that specifically.
Patrik: Oh, critical, critical because one of the issues in ICU is that patients don’t have a natural day and night rhythm.
Tom: Yeah. They did explain it to us.
Dad: He did say a couple of days that she’s been sleeping more during the daytime because she’s confused. She doesn’t know when it’s night and when it’s daytime. That’s how he said it.
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Patrik: I’ll bet.
Tom: Who’s he?
Dad: One of the nurses, Robin.
Tom: Okay. Yeah, they did a common test, I think the circadian rhythms, and I think she’s off but we didn’t ask explicitly, “Is she sleeping through the night?” So we’re going to ask that now. What would that prompt? When they answer that, “Yes, she is,” “No, she’s not,” what do we follow with?
Patrik: Yeah, so before I’ll answer that question, I just quickly want to tie in why this is important for ventilator weaning. In the ideal world, a patient in ICU is awake during the day and sleeps at night, in the ideal world because a good night’s sleep will help ideally with exercises during the day. I’ve seen many patients in ICU that have a disturbed day and night rhythm, and they often sleep during the day and are awake at night, and that doesn’t help with ventilator weaning because during the day when you’ve got all the supports around, you can’t do exercises because the patient is asleep.
Tom: Yes, so fundamentally, it interrupts the whole logistics.
Patrik: Yeah, but it is important because when patients come out of an induced coma, they often have a disturbed day and night rhythm.
Tom: Yes, I would expect that.
Patrik: Right, so it is fundamental. It is fundamental to be in a good day and night rhythm because to begin with, daytime is when the ventilator weaning should happen, fundamentally, but coming back to what else needs to happen, we talked about what should be happening. We talked about reducing the breathing rate on the ventilator. We talked about reducing the pressure control on the ventilator. That needs to be supported by physical therapy, by breathing exercises, by mobilization. Is any of that happening?
Dad: Well, they do have a respiratory therapist that comes in there.
Tom: Yes, there’s staff there, but they’re more … I don’t know. Actually, to be honest, I don’t even know if they have a midnight shift there for respiratory therapy, but they are there throughout the day doing the trials and monitoring, but they have told us, and this is part of their selling point for discharge whenever that time comes, which may be very near. I don’t know, is that physical therapy, speech therapy is very limited in ICU, the time that they get for that. I don’t know if she’s entitled to a minimum amount of time or if it just varies on how other patients are doing that day. I do not know, but I know it’s there, but they keep phrasing it as it’s very limited and ICU is not the place to get optimal rehabilitation for physical, occupational or speech. It’s going to be very minimal in ICU. That’s why she shouldn’t be in ICU. It’s just the way that they’ve been addressing it as.
Patrik: Yeah. I’ve heard it all before. Like you said, that is their selling point. From my experience, what they’re telling you there, their selling point unfortunately from my experience is not happening in LTAC. It’s not happening there. Where are they wanting to send her to? Have they given you some names of places?
Tom: Yes. Did you say that’s their selling point but it’s not happening at LTAC? Is that what you said?
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Patrik: It’s not happening. It’s not happening. What I would recommend for you as a next step, the LTACs that they’re recommending, have you had a look online about their reviews? Are there any public reviews?
Tom: No, because I don’t know where to go to find that. I did spend some time this evening after I got off of work, looking at the website for the actual facility. I was telling my dad, “Well, they did a good job making their website because they just look top-notch,” but I don’t believe it because I need more sources to read about them. You know?
Tom: That’s why I was hoping that you could tell me or help me find where you read those public reviews, or how do I look more into those standards on why they’re rated whatever they’re rated?
Patrik: Yeah. I don’t know where the public reviews are. I do know that there are public reviews, generally speaking, or for any organization for that matter. What I do know is this because I’m talking to people, and because I’m talking to people, we never hear anything good about LTAC, never. People all feel mislead by the hospitals when they end up in LTAC. They all feel mislead. Plus, I agree with you that ICUs don’t offer a lot in terms of physical therapy. The reality is at least in LTAC, they don’t offer a lot either. Plus, your standard of care is going down dramatically, so what I mean by that is this.
Patrik: In ICU at the moment, you’d have ICU nurses. You’ve got ICU doctors. You’ve got respiratory therapists, so you’ve got all of that. Now you’re going to LTAC, and then you’ve got no ICU nurses, no ICU doctors, and you’ve got one nurse looking after five patients often, and you’ve got one nurse looking after 10 patients overnight very often. The acuity of your wife will be around the same than it is now. There is a lot of let’s just say your wife was in the ideal environment and she would be rid of the ventilator in ICU. Okay, and there are a lot of pitfalls.
Patrik: Most patients are successfully weaned off the ventilator in ICU, but there are still a lot of pitfalls. It’s a very specialty skill, and that specialty skill is simply not available in LTAC. LTACs are designed to save money. They’re not designed to help patients to go from A to B. They’re not designed around clinical need, from my experience. They’re designed to help ICUs empty their beds, and they’re designed to save money for the health insurances. An LTAC in my experience is the better version of a nursing home, unfortunately. We can’t change the system. The system is what it is at the moment. I need you to be aware of what you are potentially walking into if you go to LTAC. The other question is the LTACs that they are suggesting, where are those LTACs? Are they around the corner? Are they hours away? Tell me a little bit more.
Tom: Yes. The facility he really promoted is about 30 miles away from our home, from my parents’ home, a little further than I would like, but the next location after that is about 50. However, the discharge nurse describes that their location that’s about 30 miles away. We’ll call that the closest location..is one of the few that takes trach patients and ventilator patients, so some of the further ones either took trachs but not ventilator or something of that variation, so he really was like, “This place takes her condition. This place takes her insurance. They have space. We should refer now before they’re out of space,” talking on it. What the heck is all this pressure? I actually had a hard time keeping myself composed during that. I was really frustrated with him the other day.
Patrik: Sure, sure.
The 1:1 consulting session will continue in next week’s episode.
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to Eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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