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
My Dad is in
Cardiac ICU After Three Open-Heart Surgeries. What are the Right Questions to Ask the ICU Team to Know About My Dad’s Quality of Life?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Megan, as part of my 1:1
consulting and advocacy service! Megan’s brother is not waking up in the ICU and Megan is asking, why are they pushing her out of the ICU during hand over?
My Brother is Not Waking Up in the ICU. Why are they Pushing Me Out of the ICU During Hand Over? What Do they Have to Hide?
Megan: Hi Patrik.
Patrik: Hi Megan. How are you?
Megan: Hi there. Oh, I’m so-so. How are you?
Patrik: I’m really good, thank you. Really well.
Megan: Good, I’m glad. I’m just in a taxi. I’m just literally coming down.
Patrik: Right.
Megan: So, shall we keep this line open? I might lose you though when I get inside.
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Patrik: That’s all right, I think we’ll just carry on for now and if-
Megan: And if we lose it, you’ll call me back or I’ll call you.
Patrik: That’s exactly right. That’s exactly right.
Megan: Patrik, I have to pay for this on my phone, so I may lose you at that point anyway, so please don’t think I’ve cut you off.
Patrik: No, no, no, I’ll call you back, I have free calls overseas. Whatever, it’s really no big deal for me.
Megan: It’s just here on the right.
Patrik: Really no big deal.
Megan: Just arrived home now. Just here on the right.
Patrik: Have you seen Ryan already, or?
Megan: Not yet, I’m just home now. I’ll just pay for this, hold on one sec Patrik, please.
Patrik: Sure, sure.
Megan: Hi Patrik.
Patrik: Hi Megan.
Megan: Hello? Yeah, I didn’t lose you. I may lose you in a second, so-
Patrik: That’s okay.
Megan: I rang the hospital this morning, and they said… I left it a bit later because they kept fogging me off yesterday, as you know. So, they said Ryan was in the chair, so that was good.
Patrik: Good, good.
Megan: But they said he was only sleeping.
Patrik: Can’t hear you, you’re dropping out. I can’t hear you. Can’t hear you, Megan.
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Megan: Hey, Patrik.
Patrik: Hi, Megan.
Megan: Hello! Ah, that’s better. Okay, I’m in. I’m so sorry about all that. I knew I’d lose you. I knew I’d lose you inside the building.
Patrik: That’s all right.
Megan: So sorry. Yeah. So, I rang them this morning and they said Ryan was in the chair but very sleepy. But I did notice a difference in attitude. It’s almost this kind of defeatist, negative attitude that they’ve got now and I think it’s come from the doctors. That’s my guess.
Patrik: The questions that I have… One question that stands out to me, why is he sleepy? Do you know?
Megan: I don’t know.
Patrik: Okay. The reason I think this is so important is, a lot of patients in ICU, especially long term patients have a disturbed day and night rhythm.
Megan: Right.
Patrik: Okay. And it wouldn’t surprise me if he had a disturbing day and night rhythm. I mean, we talked about this yesterday. Lack of day and night rhythm, lack of natural daylight, all of that.
Megan: The whole thing.
Patrik: The whole thing.
Patrik: So, there is a very good chance that he might be wide awake at night, but he doesn’t sleep at night. That he wide awake during the day, but he may not necessarily sleep at night, and then he might be sleepy in the morning. You know?
Megan: Yes.
Patrik: So that could be one thing.
Megan: Because it’s very… Yes.
Patrik: That could be one thing. The other thing that I am wondering. I mean, even though the nurse denied that they’re giving him sedation… If, for example, he doesn’t sleep at night, right? If, for example, he doesn’t sleep at night, they might give him a
light sedative in the middle of the night, and then he might be sleepy in the morning, seeing all of that.
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Megan: I think you’re on to something Patrik. I’ll tell you why. In the beginning, they were saying, “Oh, we’re giving him propofol at night.” I mean, that’s very strong isn’t that? And I think that that’s why he’s sleepy because it’s not metabolizing. It’s
not metabolizing out of his system properly.
Megan: As you know, the other thing, my brother has always had a problem with sleeping. Not every night, but for a very long time. So, it’s very possible they see him awake and they knock him off with a bit of that propofol, and then in the morning, he’s absolutely out for the count. That would make a lot of sense, especially since they actually told me that’s what they did. But they haven’t told me they’ve done it recently, but I… of course
I haven’t asked the question.
Patrik: Sure. So-
Megan: So, yes.
Patrik: Okay. So, last night when I asked the nurse, she said, “He’s off all sedation, so there was no talk about propofol and I asked about the PICC line, and she said, “Oh, it’s purely for dextrose management, or for sodium management,” which I
don’t quite agree within how they managed… how they’re managing that, but that’s their practice. And as long as they’re strictly using it just for the dextrose, I have no problem with that.
Megan: You have no problem with it. No, no.
Patrik: Right.
Megan: If they haven’t got an evil intent.
Patrik: Correct. Correct. If they do what they say they do, then I have no problem with that, right? But I do believe it needs to be monitored.
Megan: Yes. Now, I’ve kept my eyes on it and when I was there, but of course, they’re like, “You can’t go in before 02:00 PM. With all that hand over you’ve got to go.”
Patrik: What do you mean, you’ve got to go? Are they sending you out during hand over?
Megan: Yes.
Patrik: Okay. Ask them what they’ve got to hide. Ask them what they have to hide, and what you can’t hear? Ask them.
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Megan: What a good point. Because once I was in there and I heard them, and then they said, “You’ve got to go.”
Patrik: This is your brother, it’s not the neighbor they’re handing over, this is your brother, your next of kin. What do they have to hide?
Megan: Yes.
Patrik: What can’t you hear?
Megan: A very good point. They keep everything from me. They just don’t tell me.
I push them and push them, and they treat me like I have no right to know. Yes.
Patrik: Absolutely. Absolutely. You have the right to know, and-
Megan: They’re very patronizing towards me. I probably would ask them because I went through all this with my mom and dad.
Patrik: No, no, no.
Megan: You may be a lose a bit there, but we know what we’re doing, and you are not privy to this information. But I should-
Patrik: You are privy… Try and change your point of view a little bit there. You say they are patronizing and don’t take this the wrong way, you let them patronize you. So, take a little bit of responsibility there. Just by you-
Megan: Yes. I don’t take it the wrong way. I understand.
Patrik: Just by you asking the question, “why do I need to go out? What can’t I hear?”
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Megan: Yes. Yes. Absolutely.
Patrik: Right.
Megan: Yes. Yes. I think every day I’ve been asking all these questions and every day they’ve been, “Ugh,” they’ve been, “Ugh.” And it has been very difficult. And I think you tend to lose a bit of your will to live if you like, yourself. It’s just that I’m so bored of being fobbed off.
Patrik: Yes. It’s very awkward-
Megan: And that’s what happened.
Patrik: It’s very awkward. You have to go against the grain. It’s very energy draining. And I could hear it within two minutes last night. Number one, it probably took them about three minutes. Somebody was picking up the phone, and then they said, “Oh yeah, I’ll get you to the nurse.” And then there was a delay, and I could hear some mumbling in the background, and I thought, oh yeah, they’re talking about who’s this? Blah, blah,
blah.”
Patrik: And then when the nurse finally picked up the phone she was very reluctant and she basically did sort of the CIA style, who are you? And can you identify yourself? Blah, blah, blah. And then she threw in the comment, “Normally we don’t do that.” And I said, “Look,” and I said, “I don’t…” I didn’t say that, but I sort of made very clear, “Look, you’ve identified me, what’s your point, what’s your problem?”-
Megan: Yes. What’s your problem?
Patrik: What’s your problem? And that’s when she loosened up realizing, look, I’m not taking any of your… And then I said to her, “Look, I’m an ICU nurse myself.” I then started asking some questions. And then she did loosen up because she realized, “Okay, well I’m asking some relevant questions here.”
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Megan: Yes.
Patrik: Right? So then-
Megan: Yes. Yes.
Patrik: She was friendly in the end.
Megan: Yes. Yes. Good. You see, they covet this information as if it’s theirs, and that you as a relative have no right to it. That’s how it… And you wouldn’t understand it anyway.
Patrik: That’s right.
Megan: That’s how they view relatives I think.
Patrik: Yes. Very much so, very much so. And they know that really 99% of those relatives don’t question. You’re one of them who does, and they know that already.
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Megan: Yes.
Patrik: And that’s just the reality. It is tiring going against the grain. I do come back to this, him being sleepy, because there is a strategy to manage that, right? So, I mean, she clearly denies that they’re giving him any sedation. We’ve got to take that for face value for now. It all comes down to mobilization again, because if they’re mobilizing him during the day, he should be tired to sleep at night and then awake again in the
morning, right? So, it all comes down to getting into a day and night rhythm.
Megan: Yes.
Patrik: All-
Megan: Do you think, Patrik, that sleeping could be almost a switching off from the reality of this how whole he finds himself in?
Patrik: Oh definitely. Definitely. But also bear in mind he would have had truckloads, buckets loads of sedation and opiates over the weeks, and then he’s got the renal failure. It’s playing havoc with his
system.
Megan: Yes, indeed.
Patrik: Right? A lot of patients report… So, you know your brother is awake at times, okay? Let’s just say it all goes well and he can leave ICU alive eventually.
You ask him six months down the track, you say to him, “Hey, do you remember your time in ICU?” And he might say, “No, not a single thing.” Right?
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Megan: Yes, correct.
Patrik: So, he’s in the twilight zone. Right?
Megan: Yes, he is.
Patrik: It would be great if he was more awake, of course, just for his own sake.
Megan: It would be, Patrik, but I think he is unconscious so that he’s better.
Patrik: Yes, yes. And you’ve got to watch them like a hawk in terms of what are they giving him? You’ve got to keep asking about the sedation, whether they are 100% true he’s not on any…
Megan: Sedation.
Patrik: Yes, absolutely. You’ve got to watch them like a hawk. Having said that, there are patients who are not on any sedation and are still sleepy after long term ICU.
Megan: Okay, so it could be that unusual.
Patrik: It’s not that unusual, but again, you’ve got to watch them.
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Megan: Yes.
Patrik: Okay. But here is another thing that I wanted to mention because you brought it up in your email. You said that he’s dehydrated, which is why the sodium is high-
Megan: I think he is, yeah.
Patrik: Yeah, yeah. No, he is. His sodium is high, so he’s dehydrated. I tell you why he’s dry, why he’s dehydrated.
Megan: Okay.
Patrik: And that’s really important to understand. When you want to ween somebody off the ventilator, right?
Megan: Yes.
Patrik: The last thing you want is a fluid overload on the lungs. That’s that last thing you want. And your brother with a history of kidney failure, right? They would deliberately keep him dry because of the kidney failure and because of weaning him off the ventilator. Now, it sounds cruel, but in ICU every patient has a daily fluid balance. So, it’s being measured, what’s going in and what’s going out.
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Megan: What’s coming out..
Patrik: Yeah, yeah. There are a few patients in ICU who need to have a positive fluid balance, but the overwhelming majority of patients in ICU need a negative fluid balance.
Megan: A negative.
Patrik: Meaning there needs to be more going out than going in.
Megan: Okay. Okay, I understand.
Kind Regards
