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
Why Won’t They Try Weaning My Wife Off the Ventilator Before They Do Tracheostomy?
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 is intubated in ICU and he is asking why are they insisting with PEG (Percutaneous Endoscopic Gastrostomy) for his wife.
My Wife is Intubated in ICU & Why Are They Pushing Me to Agree with Percutaneous Endoscopic Gastrostomy (PEG) for Her?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Nestor here.”
Patrik: Right. I’ve just sent you an email now with the headline GCS. It’s coming now. Let me know once you’ve got it. Then I’ve attached a picture there. Let’s look at the picture together because it’s important.
Nestor: Okay.
Patrik: You got it?
Nestor: Glasgow Coma Scale. It’s loading.
Patrik: Yep.
Nestor: Okay, I got it. Okay, I see. Okay. It came up.
Patrik: Right. So let’s just go through them one by one once you’ve got it open.
Nestor: Okay. I’m ready.
Patrik: Can you see eye-opening response?
Nestor: Yes.
Patrik: Is it spontaneous?
Nestor: Yeah.
Patrik: Yeah? Okay.
Nestor: But you have to be like… Well, what do you mean by spontaneous? It opens on occasions, but like if I say something to her, does she open it?
Patrik: Yes. And that would be to speech. Can you see that? If she has her eyes closed and she only opens them when you talk to her, that would be eye opening to speech.
Nestor: To speech. Yeah. She doesn’t do it all time, but she does do it.
Patrik: When you’re talking to her?
Nestor: Yes.
Patrik: Okay. So that’s three points.
Nestor: Okay.
Patrik: You can see that there’s a score behind every one. You can see that?
Nestor: Yeah, I see the scores.
Patrik: So, three points for eye opening. Then best verbal response is none because she’s got the tube.
Nestor: Right so that’s one.
Patrik: So that one. That’s four in total so far. Then best motor response. Does she obey command?
Nestor: No.
Patrik: … if you ask her to… Okay. No. Does she-
Nestor: Nothing.
Patrik: Okay. Does she move her arms if you put a pain stimuli on it?
Nestor: No.
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Patrik: Right. So, does she move her arms or legs at all?
Nestor: Only when they suction her. My daughter said that she moved her leg yesterday when she was talking to her, but I wasn’t in there, so I can’t really tell you what that was like.
Patrik: Sure. So, can you rule out if she’s obeying commands?
Nestor: No, she’s not obeying.
Patrik: Okay. If you put a sharp needle on her fingers and poke her, would she withdraw from that?
Nestor: Let me… Okay. So, I don’t think so. When they gave her insulin shot in her stomach, her breathing increased, but she didn’t flinch but she started breathing fast on the ventilator. They would say she’s outbreathing the machine and that was twice when they stuck her in her stomach.
Patrik: Right.
Nestor: But the body doesn’t react.
Patrik: Right. Yeah. So that means most likely no response at this point in time. Most likely. So that gives her 3, 4, 5 points out of 15. So what does that mean?
Nestor: Sorry, I’ll just check.
Patrik: Let me maybe just put it in perspective for you. So, you and I talking, we are both a Glasgow Coma Scale of 15 and she scores a 5. Now, there’s lots of people that score a five in ICU for a number of reasons, and they do come back. Now, will your wife come back? Way too early to say.
Nestor: Tell. Okay.
Patrik: Way too early to tell. It’s a pretty low score. Three is the minimum so five is just two points above, not great, but it’s at least you know the baseline now. And at least now you know what you should be looking for.
This is a really good assessment tool and it’s easy for everyone to follow. Don’t need to be a doctor to follow that score.
Nestor: Okay. That’s good to know.
Patrik: Yes. And that is a really good assessment tool. And you can see whether it goes up, whether it goes down. If they stop sedation and it goes up, that would be a good sign. If they stop sedation and it stays the same, that would be not such a good sign, but it’s important for you to start monitoring that.
Nestor: Okay. Now, is it a bad thing when she started outbreathing the ventilator or is it… ?
Patrik: That’s a great question. It really depends. And I’ll tell you why it depends. So, if she outbreathed the ventilator and the volumes are fine and breathing rate per minute is sort of less than 30 breaths per minute and she’s calm and her oxygen levels are good, then that’s a good thing.
If she’s however, outbreathing the ventilator and she’s breathing fast and rapid and her volumes are low, that’s not such a good sign. So when I look at the last ventilator settings, her rate is set at 15 breaths per minute. So, she gets guaranteed 15 breaths per minute by the ventilator. If she breathes up to 25, takes an extra 10 breaths and they’re nice, slow, deep breaths, that would be a good thing. But if she’s breathing another 20 breaths per minute and she’s breathing fast and shallow, that’s not such a good thing. So the devil’s in the detail there.
Nestor: So do you think it would be different if she was on a trach?
Patrik: Maybe. Maybe because some of it, if she’s breathing fast and shallow and she’s uncomfortable, some of that discomfort could be simply the breathing tube. It could be. The problem is, now that we’ve got a better idea about Glasgow Coma Scale, the problem is that with a Glasgow Coma Scale of five, she needs a trach. She won’t be able to protect her airway with a Glasgow coma scale of five.
Nestor: Okay.
Patrik: Right.
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Nestor: As long as it will still provide adequate enough air and it won’t directly harm her windpipe, I’m fine with that. So, when I tell them that they can’t use the PEG, they will still have to put a feeding tube through the nostrils, correct?
Patrik: Through the nose.
Nestor: Right. Okay.
Patrik: Where is it at the moment?
Nestor: It’s in the mouth.
Patrik: Well, they would have to put it through her nose. It’s much safer through the nose than it is through the mouth.
Nestor: Okay. Well, I know back in the age, I have seen that’s what they always do for a long-term stay patient.
Patrik: You mean a nasogastric tube?
Nestor: Right. And we didn’t really have a problem with infection.
Patrik: Of course not.
Nestor: … back then, no.
Patrik: There’s no issue with infection with a nasogastric tube.
Nestor: They were telling me it could get the worst kind of sinus infections. The other patient got some septum issues. I’m like, “What? What is going to happen to her septum? Is it going to deviate because you got a tube going down the nose?”
Patrik: Yeah.
Nestor: So, and the doctor asked with whom are you talking to?” And the other doctor is not talking to me because I said my team and then he left to check other patients. Because I wasn’t sure if I’m supposed to like to tell them, “Did you know that I know whatever you guys tell me because I’ve got good advocates here.” And each time I record them, I ask them do they mind if I record them so I can remember what we talked about. And they agree.
Patrik: Yeah, absolutely.
Nestor: But the only thing I want to be sure of is, like when they ask me if could do a bronchoscopy, I would verbally say, “Okay.” I will consent and as for the trach, I want to say okay, but I don’t want them act like they misheard me when I said okay. So, should I ask to sign a consent? Literally sign a consent for the trach?
Patrik: Yeah, but not for the PEG.
Nestor: Right. Right. I’m just asking because everything has been done verbally. I’ve given them consent verbally, but I think I need to do written consent for that so they’ll know that.
Patrik: I think you need to do it in writing, not verbally.
Nestor: Okay. Yeah. You think I should just go ahead and give them the authorization to do that?
Patrik: Yeah. I think that’s fairly safe.
Nestor: Okay. So, do you think that they’ll decide not to do the tracheostomy if I say that I don’t want to do the PEG?
Patrik: No, no. One’s got nothing to do with the other.
Nestor: All right.
Patrik: They make it like that, but that won’t stop them from doing the trach because it still helps them as well to move her forward.
Nestor: Okay. I guess it is a waiting day. You’re right. It’s tough because they come at me. They really come all. What I’ve started noticing is, they all have the same speech. It’s almost like the same thing. It’s almost like it’s a rehearsed version of what to say, from one doctor to another doctor and another doctor whenever they come on the shift.
And this last time that they talked to me, he talked about that he was going to move feeding tube from her nose as it could get infected. And it was like, you know, he’d never laid eyes on my wife, because my wife doesn’t have a feeding tube in her nose right now and she’s never had one since she’s been here.
Patrik: Right. Right. Look, it’s really, the biggest challenge in a situation like that is that you don’t know what you don’t know, and they can tell you whatever they like. Most families take their word for gospel. And people don’t understand the system. They will tell you that LTAC (long term acute care) is the best thing since sliced bread.
Now, have a look for online reviews for LTACs and you will see that the online reviews are pretty shocking. Or go and visit one. I’m sure you don’t have the time for that at the moment, but go and visit one.
Nestor: You see, basically, I’ve been to one LTAC to see a patient before. Basically, it’s almost like a step above a nursing home. All that stuff that they say is going on, that’s not going on at the LTAC that I’ve visited.
Patrik: Nestor, an LTAC is the better version of a nursing home. That’s what it is.
Nestor: Wow.
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Patrik: So, your wife is in the most vulnerable situation she’s probably ever been in her life and they’re trying to send her more or less to a nursing home. That’s the way I look at it.
Nestor: Okay. I believe you. You got to me convinced, because everything that you predicted, that is what they would say, how they would ask and they did it. It’s almost like a textbook.
I just felt like the next person that comes back to speak to me will want to know who I’m talking about and she asked, “Who’s your team?” And if you listen to that video that I emailed to you, you might not be shocked, I guess. You worked in this industry for so long but when I ask everything, because she said, “Have you see how LTACs operate?” So, she explained how they operate. And I told her, “I pretty much do.” And then I said, “Well, do you know how they operate?” She said yeah and asked her, “Have you ever gone to a LTAC? Have you ever been to one?” And she said no.
So for me, you are a provider. You are a not credible when you tell me, “I know how LTAC operates, and you have never been to one?! This is your job and you never once put yourself in a position to go and see where you’re sending these people.
Patrik: I get it. I hear you. It’s sad. Then I’ve seen that you sent me a recording. I haven’t listened to it yet. I can just see it now.
Nestor: Yeah. You might not be shocked.
Patrik: Probably not much that will shock me in this industry anymore.
Nestor: I know. I came pretty much low key. I didn’t tell them I am aware of some medical related issues and I didn’t say anything. I just watched. So, when it got to where I feel it was beyond my understanding, I asked. So, what just didn’t make sense to me is, I see why people stay in the hospital like two to three months and that’s when they say, “Maybe we need to unplug her.” Not four days.
And then I couldn’t find a possible brain damage because they didn’t have an MRI. I asked them, “Did you scan her?” I’m like, “What could be the cause of drowsiness? We will know if you check on scan.
Patrik: Yeah, absolutely. And here is the thing, Nestor, there’s plenty of time to talk about LTAC. If for whatever reason in a few weeks, you think LTAC might be a better option, they won’t stop you from going there if in a few weeks you change your mind. So there’s plenty of time to change course.
Nestor: I guess they would just go… If it gets to that, they’ll just go and do the PEG at that time.
Patrik: Absolutely. ICUs are desperate to get patients out.
Nestor: Well, they got to let somebody else go out. I can’t do that, not my wife.
Patrik: No, no. There’s plenty of time. They want to send your wife out, but there’s plenty of time to do that. Way too early. Way too early.
Nestor: Do you think they’ll move her, because right now she’s in the cardiac critical unit. Do you think they’ll move her to a regular ICU?
Patrik: Once she has a trach, they will most likely move her to a step-down ICU. Most likely.
Nestor: And she’ll still get good care there?
Patrik: It probably depends a little bit on the setup of the hospital. Right.
Nestor: But it’d still be better than LTAC?
Patrik: Oh, much better than LTAC. Much better.
Nestor: So, they’ll still free up their bed. They’ll still manage to get the bed available.
Patrik: Yeah. They’ll get the bed, but they’re moving the beds within the hospital.
Nestor: Right.
Patrik: Right. So, I’d say let’s take one step at the time. Let’s get the trach done and then take the next steps.
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Nestor: Okay. All right. So, I guess, I’ll talk to the doctor and let them know.
Patrik: Yeah, I’ll have a listen to the recording and hopefully that’ll give us more insights as well.
Nestor: Okay. All right, but you said it’s okay to go ahead with the trach.
Patrik: You can consent to the trach, don’t consent to the PEG.
Nestor: Okay.
Patrik: And they will probably keep pressuring you. Just to be prepared. Don’t let them. That’s all I can say. Just stand your ground.
Nestor: Okay. I will not. Thank you. I appreciate your time.
Patrik: It’s a pleasure.
Nestor: I really do. I’ve been telling people about you and passing on your information for sure.
Patrik: Right. I appreciate that.
Nestor: All right. I think I’ll go back and talk to the doctor.
Patrik: Yeah. Okay. All the best for now, Nestor.
Nestor: Okay. Thank you.
Patrik: Thank you. Bye.
Nestor: Bye-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)
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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