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 Stephanie as part of my 1:1 consulting and advocacy service! Stephanie’s mother is in Post-Cardiac Arrest care in the ICU, and Stephanie is asking what the GCS (Glasgow Coma Scale) has to do with weaning off ventilation.
My Mother is in ICU for a Cardiac Arrest. What are the criteria for ventilation weaning?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Stephanie here.”
Patrik: That’s, you know, I really hope that I can give you a different perspective here, and I also hope that with that perspective you can get some outcomes, right?
I do believe a lot of what I’m doing is driven by my own ethics and by my own moral compass, if you will, right?
Am I running a business? Yes, I’m running a business, but I still feel like I’m one layer removed from the hospital. You know, I’ve tried to give you as much of an objective overview as I can.
With 20-years of ICU experience, right, I’ve seen all the ethics committees, and I know their full of shit, excuse my language, you know. It’s not worth your time.
Stephanie: No, got it.
Stephanie: So let me ask you this. The how can you be sure that when they start weaning her, that we need to request for them to use, take her off of Phenobarbital, and use another seizure medicine, like Midazolam or Versed when we ask them that, what should we expect in the outcome?
Stephanie: Should we be concerned if we see her jerking, or what?
Patrik: Yeah, yeah. The jerking is a concern, but you know, once you ask them, “Hey, can you stop the Phenobarbital and can you start her on Midazolam?” They need to respond to that and maybe there are things happening that I don’t know about yet, and maybe they do have a valid reason for the Phenobarbital, but I have not seen it for the jerking. I have not seen Phenobarbital being used. I have not seen that. Right? But then-
Right? There could be other reasons that I’m not aware of why they’re giving the Phenobarbital, but it doesn’t sound right to me.
Tonette: I didn’t agree with their strong medication myself either. Considering the condition that she came into the hospital.
Patrik: Do you know, have they tried, in the first few days, before she ended up on the Phenobarbital, have they tried to wake her up? Do you know? Has that happened? Have they stopped the Propofol at some point? Do you know that?
Tonette: Yeah, they did stop it- Go ahead Miranda.
Miranda: No, you go ahead.
Tonette: In the beginning, they tried this, they put her on Phenobarbital, and they were trying to wean her off. And they did try to wean her off, and in the process of them weaning her off, she started getting those involuntary jerks and things. So they said in order to control the seizures, that they, go ahead Miranda what is it?
Miranda: I’m not talking.
Rebecca: Oh, that was me. I said she went back to having seizures according to what they told us, and I was, I did some research and tried to read the EEG, you know, about which lobes were which and so forth, the left side the right side, and spikes and so forth, but I’m not, I don’t know about that doctor. Patrik, do you know?
Patrik: About? Sorry, I missed that last part.
Rebecca: About the spikes, about the EEG, I was trying to learn how to read the EEG.
Patrik: Look, I can tell you that I, after 20 years of ICU experience, I couldn’t read an EEG either. It’s something that the neurologist, it’s, and you mentioned in your e-mail, you were actually never given the neurology report. I would ask for that. I would definitely ask for that. And the other thing that I would ask for the meeting tomorrow if I was you, I would ask for the meeting agenda. In writing. That’s what I would ask for.
Stephanie: Okay, that’s right. Okay.
Rebecca: What did he say? I missed that.
Stephanie: The meeting agenda. What he’s saying is we want a copy, in writing, of the meeting agenda.
Patrik: Absolutely, absolutely. Because-
Rebecca: I also said to them today, that we want a copy of everything that has gone for to medical. We need a copy of the documentation of everything that has transpired since she was there from day one. Her medical records and something.
Patrik: And what response did you have to that?
Rebecca: He said, um, “Oh, okay.”
Patrik: Yeah, you have every right to access that.
Patrik: But I would-
Tonette: Now to Shirley, he wouldn’t have given it.
Patrik: I would-
Stephanie: I want to hear what he says we want to ask for. Go ahead.
Patrik: I would ask for the meeting agenda, right? Because if they’ve got nothing to hide, they will give you the meeting agenda.
Stephanie: Mm-hmm (affirmative)-
Patrik: Right? I mean, the question is, what do they have to hide? You know, I mean, what- the reality is in nine times out of ten, a family meeting is being used to deliver bad news.
Stephanie: They do. Mm-hmm (affirmative)-
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Patrik: Right? Nine times out of ten. If there are good news, they can just say, “Hey, Miranda, hey, Stephanie, whatever, your mom is tracking well.” You know, why make it formal if there is an improvement and everything is working out, you know, so they-
And that’s why I would try and, I would get an agenda for the meeting in writing.
You know, because, they, in their mind, might have the next steps mapped out. They might say, “Okay, well, we stopped the Phenobarbital, or whatever, we do a tracheostomy tomorrow, and then we’ll get her to LTAC as soon as she’s able to.” Right?
Miranda: That’s what Dr. Reynolds is pushing, that’s all he keeps talking about. Because I’ve been here the whole time.
Patrik: Right, right. And I would go as far as, that if you feel, the meeting is a meeting about taking the next steps in their mind, which again is tracheostomy, getting her to LTAC, if you feel the meeting is about that, and that’s why getting the meeting agenda is so important, I wouldn’t go. I would not go into that meeting if I was you.
Stephanie: Mm-hmm (affirmative)-get up and walk out.
Patrik: Or walk out.
Tonette: It’s not a full meet-
Patrik: Right? The, again, I can’t stress that enough. The worst case scenario ICU, is to look after a patient indefinitely with an uncertain outcome. That is their worst case scenario.
Stephanie: Mm-hmm (affirmative)-
Patrik: Right? And they’re trying to prevent their worst case scenario. Your best case scenario is to wake Carmen up, get that breathing tube removed and get her onto rehab. That is your best-case scenario at the moment. But they have no interest in that because it could take too long from their perspective.
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Stephanie: Mm-hmm (affirmative)-what she has is Medicaid, Medicare, what did she tell me. She has both parts, you know, could they kick her out because of her insurance?
Patrik: I would not worry about insurance. I would not worry about that.
Stephanie: Got it.
Patrik: I would not worry about insurance. The insurance will contact you if it’s an issue.
Tonette: She has A and D.
Stephanie: I know.
Patrik: I would never, if I was you, I would never bring this down to an insurance issue. Even if it was, I would never bring it down to that level. I would always bring it to a clinical level. Always.
Tonette: She has to be cared for, and that’s in ICU. Not just trying to cover… you know, just to get her out of there.
Rebecca: That’s what he’s yanking at, I’m telling you.
Patrik: Right, right.
Stephanie: We will present something different tomorrow. We go to that table, and if they don’t give us the proper written agenda, we have no meeting. Because if we’re part of this meeting, and I’m in corporate America, Pat, Patrik-
Patrik: Right, right.
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Stephanie: Anytime you go to a meeting, everybody gets a copy of the agenda.
Patrik: Yeah, exactly. Exactly. Absolutely, and the meetings that you’re attending are not life or death meetings. They are, the meeting that you are potentially attending tomorrow is potentially a life or death meeting and why should there be no agenda.
Tonette: You’re right.
Stephanie: Oh yeah, that’s why it’s going to be alright, because they’re going to be surprised, you know, they’re gonna expect, you’re not going to be standing up and hollering and any of that, we’re just going to be matter of fact about what we want.
Patrik: Absolutely, absolutely. And you can say, “Look, what’s your problem with trying to get her off the ventilator in the first place. And not do a trach, you know.” I mean, you keep referring back to the best-case scenario, which is she could be off the ventilator in a week’s time, right? And then, let her get on with rehab?
So imagine, rehab is difficult enough in a situation like that without a trach, right? It’s still challenging. With a trach, it’s just making it even more complicated.
Stephanie: Mm-hmm (affirmative)-
Tonette: And he said vice-versa, okay. Yeah, mm-hmm (affirmative)-
Stephanie: What did he say…what did you put?
About the ventilation part, the whole entire thing is trach. That’s what he is saying.
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Rebecca: Yes, Stephanie.
Stephanie: Oh, yes. And there are issues with ventilators leaving them in for a long time, but they just aren’t treating her, so if they start taking her off the Phenobarbital, how can we make sure they’re not just going to snap that thing out of her, or whatever, I’m sorry, I don’t want to hurt anybody’s feelings, but I’m just making sure.
Rebecca: We have to sign.
Patrik: Can you say that again, please.
Patrik: Yeah, yeah. Yeah, yeah. Absolutely.
So, while she’s on the Phenobarbital, there’s no way they can wean her. The very next thing that needs to happen is they need to wean or stop the Phenobarbital, and need to assess whether she’s seizure free.
Once they’ve got the seizures under control, without the Phenobarbital, that’s the time when they can assess her to wake up and that’s the time when they can try her to breathe more on her own.
Miranda: That’s the problem, they can’t do it. After some- They’re not able to do it.
Patrik: But again.
Miranda: That’s when we administered that crap.
Patrik: Right, right. But at the moment, you know, from my perspective, it’s probably not even on the cards as long as she’s on the Phenobarbital. That’s what I’m saying, you know. What’s the point in giving Keppra and Phenytoin plus the Phenobarbital. They need to stop the Phenobarbital to see whether they Keppra and the Dilantin is working.
Miranda: What they told me, is, I guess, that the EEG was still showing the tremors even though she’s on it. So, I think that’s why they have her on it.
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Patrik: Right, right, okay. And that may well be the case. That may well be, that’s information that I’m not privy of. That may well be the case. But then, if that’s the case, a tracheostomy is, you know, I mean, yes, that could then be one of the next steps but even so, she would not go to LTAC with Phenobarbital. She needs to be off all of that sedation and she needs to be in a position where the seizures are controlled.
Right? She would not go to LTAC if the seizures are not controlled.
Stephanie: Mm-hmm (affirmative)-
Patrik: Right? So from that perspective, I don’t think, and that’s what I mean, I don’t think she’ll go anywhere in the next week.
Stephanie: Mm-hmm (affirmative)
Tonette: This doctor has in mind that this surgery is supposed to be Friday. I like what my niece Miranda said, “No. I hear what you’re saying,” what my niece said, “Yes, she I hear what you’re saying.” But she said, “We’re not going to say yes.” I like how Miranda keeps, Miranda did a super job with that today.
Stephanie: Mm-hmm (affirmative) Yup, yup.
Rebecca: Yes she did.
Stephanie: They have an agenda.
Tonette: That is the agenda.
Patrik: They have an agenda. There’s no about that. They always have an agenda, and that’s why I think it’s so critical for you to ask for the agenda of the meeting tomorrow, so you can prepare. And that should, you know, and if they ask, “Why do you want an agenda,” and you can say, “Well, we want to be prepared.”
You know, we want to ask the right questions. You know, there’s nothing wrong with that. It’s potentially a life or death meeting, I mean, it’s not unreasonable to ask for an agenda, is it.
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Tonette: One other thing I disagreed with, is they said that her brain was fine, and said to Dr. Reynolds, “Okay.” And initially, he was saying that my sister’s brain was fine, and now he’s saying that there’s something else negative. That it’s not working. So, I mean, come one. Which one is it? Either it is, or it isn’t.
Patrik: If she’s on Phenobarbital, something is going on with her brain.
Stephanie: Mm-hmm (affirmative)-
Patrik: Right? And you mentioned in the email, Stephanie, that you wanted to see the report from the neurologist, and again, it’s not unreasonable to ask for that. I think it’s very reasonable to ask for that.
Stephanie: Yes, yes, yes. And I appreciate what you are telling me. I’m gonna send me some information about the Glasgow number, the Glasgow coma scale.
Patrik: Yes. Yes. Yes. Yes.
Stephanie: And find out what scale do they have her on, you know-
Stephanie: Is she there? She is where? So, then you’ll be able to tell me with the information you will give me will tell me, where she is and I can shoot that back to you.
Patrik: Yes. Absolutely. I w-
Stephanie: I would like to know what that means.
Patrik: Right. At the moment, I would think she’s a GLASGOW coma scale three. Especially if she’s on Phenobarbital. There’s a very high chance she’s a GLASGOW coma scale three. But, it’s probably best if you ask them, you know.
Stephanie: Oh, I guess it is too. I will think of something. No. I’ll ask them. I’ll ask them. So again, if they say they take the Phenobarbital off, and give her, what’s the other, the other drug, you know, Versed or Midazolam or the Versed and they give her that, it should. Now what if it doesn’t control the seizures. What is our next step?
Patrik: Yeah. If, okay, let’s just look at the worst-case scenario for a moment.
Let’s just say they give her Versed and they can’t control the seizures with that. You know, that could be the worst-case scenario.
Stephanie: Right. Right.
Patrik: You know. There is a very high chance that there would be significant brain damage. But that’s, as far as I understand, that’s not what the MRI and the CT scan show, that is my understanding, however-
Stephanie: CAT scan.
Patrik: That is a verbal… You haven’t seen the reports yourself, have you?
Stephanie: True, we have not.
Stephanie: We’ve been asking for it, asking for it for days, but she said I’m going to give you a full report on Monday or Tuesday. She was today, Wednesday, because it was a trial day. You know, it was just, you know, hospital. There’s no, and they supposedly have a good record, one of the best for brain trauma. Okay? So, they’re supposedly good for that. Next to- And, so close.
Miranda: And, may I say something? What they were saying is, see in the beginning it seems like it was kind of cool, okay. From what they were saying, but when I started digging a little bit more, and I was like, the MRI’s is saying there’s and the CAT scan is saying this, then why are we having issues?
So they keep pushing all, everything to the neurologist, is not on state it. It’s just the neurologist is kind of been missing in action. And then, the second thing is, if the MRI and the CAT scan showing that, and then why are they still trying to say it’s something.
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Patrik: Yup, yup. Look, and that’s why you’ve got to get the reports in writing. I’ll tell you another thing. Day nine in ICU, after such an event, is not a long time. Okay. So what do I mean by that? The reports-
Stephanie: And repeat that? I’m sorry Dr. Patrik. Repeat that again? Day nine is not a long time after what?
Patrik: After such a massive event.
Patrik: Okay, it’s not a long time. They want you to believe differently, right? They want you to believe differently, but you know-
Tonette: I see it.
Patrik: -but, I’ve seen patients in ICU for months, sometimes. You know-
Tonette: Mm-hmm (affirmative)-you right, Dr. Patrik.
Patrik: Right? I’m not a doctor. I’m not a doctor.
Patrik: I’m a nurse.
Stephanie: Mm-hmm (affirmative)-
Tonette: Alright, Nurse Patrik.
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
- 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
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- 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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