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
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 Nestor, as part of my 1:1 consulting and advocacy. Nestor’s wife has a tracheostomy in ICU and he is asking how to advocate for his wife so she can get the best care and treatment in ICU.
How to Advocate for My Wife So She Can Get the Best Care & Treatment in ICU? Help!
“You can also check out previous 1:1 consulting and advocacy sessions with me and Nestor here.”
Patrik: Okay. Fair enough. She’ll probably transition through a phase now where she needs to adjust to sort of waking up, able to talk. She might be uncomfortable coming from this place of being unconscious and now sort of slowly transitioning to more alertness. And because she can’t talk, that’s probably her sign of adjusting to this new situation. But bear in mind, Ativan, again, any sedation should be minimized as much as possible. Ativan is also a benzodiazepine. And benzodiazepine are addictive.
Nestor: Okay.
Patrik: Right? So, the longer she gets the lorazepam, there’s a risk of her getting addicted to it.
Nestor: So, should I just ask them to stop doing it?
Patrik: I wouldn’t maybe not stop it but wean it off. Let’s just say she’s getting three times two milligrams a day. Weaning is to slowly detach from the Ativan. Maybe reduce it to three times one milligram a day. Maybe next is wean it to three times half a milligram a day. And then wean it to two times half a milligram a day. You know? That’s usually how you approach this.
Nestor: Okay.
Patrik: Does she have any seizures?
Nestor: No, I don’t think so. No.
Patrik: Okay. Then I’d say that’s another reason why. If she had seizures, I would say, okay, maybe she needs a little bit of Ativan. Right? Coming back to when can a patient be mobilized and what are the contraindications. For example, if someone goes into ICU with fractures, multiple traumas, of course you can’t mobilize them quickly. Your wife has no contraindications as far as I can see. I’m just looking through the reports. She’s not on any vasopressors, not on any inotropes. She doesn’t have any fractures. As far as I can see, there’s no contraindication to mobilize her.
Nestor: Yeah, there are no vasopressors or inotropes here.
Patrik: Vasopressors and inotropes are terms that are interchangeable. She would’ve been on vasopressors or inotropes probably right after the cardiac arrest, like epinephrine, norepinephrine, vasopressin, phenylephrine. Have you heard of those?
Nestor: Mm-hmm.
Patrik: Right. She’s off all of that. The reason patients get those medications in ICU is for low blood pressure, when it’s life-threatening.
Nestor: Right.
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Patrik: Right? She’s not in that phase anymore. So, there is absolutely no reason why she can’t get mobilized. Everything else is excuses and complacency and laziness, probably.
Nestor: So if I get that pushback where they don’t want to do it, how do I make sure they do it?
Patrik: Yeah.
Nestor: Some of this stuff, should I go get answers or should I … because I know, I can imagine what they’re going to say is, “Well, that’s what they do at LTAC.”
Patrik: Yeah.
Nestor: How do I counter that?
Patrik: Mm-hmm. One way to counter it is, A, you’ve made the decision that you don’t want a PEG tube. That’s number one. And B, that in order for her to move forward, that they need to start mobilization. Just saying like that. One thing that I advise clients really is don’t overcomplicate. Just tell them what you want. Will you face resistance? Probably. Probably, because you are already standing out from the crowd. Most people will just accept what’s given to them. You’re not. Most people will just go with, yeah, the hospital is telling them, yeah, we’ll do PEG We’ll do trach and then we go to LTAC. And then there’s the big awakening.
Patrik: That’s not to say that you shouldn’t be slowly looking around at LTACs. Keep your options open.
Nestor: Mm-hmm.
Patrik: Maybe there is a good LTAC near you. I don’t know. It’s probably worth for you looking to some of them and give you a feel.
Nestor: Mm-hmm.
Patrik: Right? And focus on things like what are their success rates, what’s their nurse-to-patient ratio. Is one nurse looking after two patients, after five patients, after 10 patients? What are the nurses’ qualifications? Do they have ICU experience? That’s my other experience. Most of those nurses in LTAC do not have ICU experience.
Nestor: Right. Or else they wouldn’t be working there.
Patrik: That’s right. The other questions are what’s the medical oversight. Who’s overseeing the medical care? How many doctors are there? How often are they coming? For example, in your wife’s case, she would have a cardiologist at the moment.
Nestor: You know what? Since they’ve moved her up to the medical ICU, there’s not been a cardiologist that came up to visit.
Patrik: Right. Have you spoken to a cardiologist?
Nestor: Not since we’ve been up here.
Patrik: Right. Okay. The cardiologist is just an example. What I mean by that is she might need a kidney specialist. She might be a liver specialist and so forth.
Nestor: Okay. Right.
Patrik: Right? The access to specialists is often limited in LTAC. Often limited.
Nestor: Right, because right now she needs a GI (gastrointestinal) person for her liver.
Patrik: Exactly.
Nestor: Her enzymes are elevated.
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Patrik: Exactly. Here’s another thing, Nestor. So God forbid if she goes into LTAC and she needs to go back into ICU, God forbid, would they guarantee her a bed in this ICU again? They probably won’t. So, picture this, picture the worst-case scenario. She goes into LTAC. Right? And after two days of LTAC, what if she needs to go back into ICU? Where would she go next? Would she go back into the original ICU, or would she go in a completely different ICU? Again, I’ve seen this over and over again that patients then bounce back into a different ICU.
Nestor: Okay.
Patrik: Right? So those are the things that need to be thought through.
Nestor: Okay.
Patrik: Right? Just quickly coming back to the PEG tube again. I’ve seen patients with a nasogastric tube for up to six months.
Nestor: Right.
Patrik: There’s no issue. The PEG tube is a device in ICU that’s being used to send patients to LTAC. That’s what it is. There’s no clinical indication. Why are they doing that? I’ll tell you why they’re doing that. It ties right in to what I said before. The level of skill in an LTAC, the level of expertise in an LTAC is so much lower than in an ICU. So, in an ICU, if a nasogastric tube needs to be changed, doctors and nurses can change it very quickly.
Nestor: Mm-hmm.
Patrik: In an LTAC, if a nasogastric tube needs to be changed, patients often need to go back to a hospital. They can’t do it there. That’s why they want the PEG.
Nestor: Okay.
Patrik: Right? That is one of the main reasons why they want … they are so adamant about the PEG. But the PEG tube actually requires surgery.
Nestor: Mm-hmm.
Patrik: Which is a risk in and of itself.
Nestor: Okay. So, if there is another person that will ask me about it, should I just basically tell them that I don’t want it and please stop asking?
Patrik: Just tell them what you can accept and what you don’t. You don’t need to explain yourself.
Nestor: Okay. You’re right.
Patrik: Just keep things simple. Don’t feel like you need to explain your decisions to them.
Nestor: Right. That’s exactly what the doctor is trying to do.
Patrik: Of course.
Nestor: She’s like, “Why? Can you tell me why?” I’m like, “I just don’t want it.”
Patrik: Yeah. You can tell them you don’t want another procedure. There’s plenty of time for you to consent to a PEG. If it comes to the point where maybe LTAC might be another step for her forward, but not at this stage, I believe, then you can always go back and say, “Yeah, let’s do a PEG now.” There’s no rush. There’s no urgency. The minute you consent to a PEG, they have all the cards in their hand.
Nestor: Right. What I told her, I said, “Three days ago you all didn’t know where the infection was coming from. If you’d have sent her to an LTAC with the pneumonia, she would not be here.”
Patrik: Correct.
Nestor: Because she wouldn’t get the treatment. She’d have to wait for a doctor to get there. I’m like, “No.”
Patrik: Exactly.
Nestor: It was almost like an underhand, it was an underlying threat. She said, “What do you want? Her to stay here forever? How long do you expect to have her stay here in ICU.” I said, “As long as it takes for her to get better.” She’s like, “Well, she can’t stay that long.” She said, “You only have two options. You can either send her to LTAC or the other option is to send her home.” I said, “But you’re telling me in this facility there are no other floors that you can put her in? Every room in this hospital’s full?” She said, “No.” So, I don’t know why you’re saying that.”
Patrik: Right.
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Nestor: It just frustrates me to keep having to say that to the doctors. It’s like a battle, not that I will stop because I will fight for her.
Patrik: Right. Absolutely.
Nestor: But I’ll keep going. She’s got nobody but me.
Patrik: That’s what you’ve got to do. Just got to keep going. I wish I had a quick fix. Unfortunately, I don’t have a quick fix for you. It’s just time will tell you where this is going.
Nestor: Yeah. You’re doing pretty good though because you think of getting her up and mobilizing her. When I come back tomorrow that’s what we’ll be talking about tomorrow.
Patrik: Absolutely.
Nestor Because I asked her if she could sit her up a little higher in the bed because it just felt like she was struggling to breathe, and when she did, she could breathe a lot easier. You can feel the congestion in her chest.
Patrik: Right.
Nestor: Do you think I’m behind the curve because she hasn’t been mobilized yet?
Patrik: No, I don’t think you’re behind. The minute someone has a tracheostomy, that’s when they should start mobilizing her. Sometimes you can mobilize patients with a breathing tube as well, but that’s a bit risky because if the breathing tube comes out it can be very risky, whereas if a tracheostomy comes out, a tracheostomy can be reinserted very quickly. So, it’s much less risky. It’s a much safer airway compared to a breathing tube in the mouth.
Nestor: So, do you think I should talk to the ICU doctor versus a nurse? Because it seems when I talk to nurses, I usually have to wait.
Patrik: You should make your wishes known to all of them. Don’t hold back.
Nestor: Okay. So, when they do their rounds, that’s when I should talk?
Patrik: Yes. You should not hold back with your wishes.
Nestor: Okay.
Patrik: Expect some resistance. You’ve just got to be persistent.
Nestor: Okay.
Patrik: Nobody likes to be told what to do, but that should not stop you from advocating.
Nestor: Right. Obviously, the type of person I am when it comes to just taking care of business, I am looking at you and like I’m not here to make friends.
Patrik: Exactly.
Nestor: So, I want you to do what’s good for her.
Patrik: Exactly. Again, picture it from their end. Just so you’re aware of the dynamics. They almost have like a pathway for a patient in your wife’s situation. Their pathway is, okay, can’t be weaned off the ventilator, not waking up, do a trach, do a PEG, send her to LTAC. Our work is done. Right? That’s their one-size-fits-all approach to those situations. By you not consenting to the PEG, you are challenging that pathway. That’s why they’re so upset. They’re not upset because they know your wife can very well live with a nasogastric tube. They know that. But it destroys their pathway.
Nestor: Right.
Patrik: Right? It’s about revenue. It’s about bed management from their end. You’re throwing that out of the window for them.
Nestor: Right.
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Patrik: Just be mindful of where they are sitting. It just is what it is.
Nestor: Yeah. I mean, I would not want to be in this situation.
Patrik: Yeah.
Nestor: But she’s in this situation, and I cannot budge, especially when the doctors say she is stable and then she has to go to LTAC. I’m like, “What’s stable? What’s the baseline?” She’s like, “Well, if she’s not sick.” I’m like, “She’s ill. She is critically ill now.” If she’s up walking around and skipping through the halls, of course I don’t expect her to be here.
Patrik: Yeah.
Nestor: That’s where we’re trying to get her to.
Patrik: Yeah. So, it’s good that she’s got a tracheostomy. I think that’s good. You know she’s got a stable airway. I’ll tell you another thing. The next few days, probably few weeks will also show you will she wake up, will she not wake up? If she doesn’t wake up, how long will it take for her to wake up? It might also be way too early for her to go to LTAC. Way too early.
Nestor: Right. Okay. Well, I’ll tell you what. You’ve been very helpful. I’m going to come in the morning and that’s going to be the first thing I mention to them about getting her mobilized.
Patrik: Right.
Nestor: I will keep you updated and keep you notified on what’s going on.
Patrik: Yeah. Any questions, please reach out anytime.
Nestor: I will. I appreciate you.
Patrik: It’s a pleasure. All the best for now.
Nestor: Okay. Thank you.
Patrik: Thank you. Bye.
The 1:1 consulting session will continue in next week’s episode.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
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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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