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 Can’t The ICU Team Wean My Dad Off The Ventilator Before Rushing Into A 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 Ella, as part of my 1:1 consulting and advocacy service! Ella’s dad is on a ventilator in ICU and may end up with a tracheostomy. Ella is asking why it is alarming if her dad goes to LTAC.
If My Dad Will End Up with a Tracheostomy, Why is it Alarming if He Goes Out to LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Ella here.”
Patrik: Great question! So, what’ll happen is the following. 10 to 14 days is the mark. If someone can’t come off the ventilator with the breathing tube after 10 to 14 days? Right? Then a tracheostomy needs to be considered. If for whatever reason, either the patient or the family doesn’t want a tracheostomy … Right? Well, you could argue let’s stop treatment, and let’s look at the end-of-life options. Okay? But that is still your decision. It’s not the hospital’s decision.
Ella: Right. He actually briefly asked that. I said, go ahead with tracheostomy. Something I’ve mentioned in that way. But the thing is like, what my concern is, even before waiting for 10, 14 days, they might rush for the tracheostomy ahead of all trying those things. That is my concern. I don’t know when they’re going to, because today when I just had … Because I was telling right from the beginning, they were trying to say about quality of life and then trying to scare me and whatever. And then I was little bit on the resistive side. So I just said, “Okay. We’ll let him do this. And then … “Because I have another question. To be weaned off the ventilator, does he have to be on an ICU?
Patrik: Yes. Yup. The only difference is, that when someone has a tracheostomy and … Okay-
Ella: No, not a tracheostomy. If he doesn’t get a tracheostomy-
Patrik: Oh, yeah. Definitely. ICU. Definitely ICU. If he has a tracheostomy, he could go somewhere else.
Ella: Okay.
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Patrik: But with a breathing tube in the mouth, he needs to be in ICU. I don’t think they’ve told you yet that if he ends up with a tracheostomy, they want to send him out to LTAC. Have they mentioned-
Ella: They mentioned that. They mentioned that word also. And then the woman they mentioned, as you mentioned in your video … An alarm bell have to go on for you. Right? I was watching for that word LTAC. They were saying the LTAC word. And then I was more alarmed on that one.
Patrik: Yeah. The problem is, patients end up with a tracheostomy and then they are sent to LTAC. LTAC is a better version of a nursing home. Right? Here, for example, in Australia or in the UK or in Canada, people stay in ICU with a tracheostomy. And I believe that’s where they should be. Right? Whereas, LTAC is just to save money.
Ella: But is it outside the hospital premises? Or within the premises?
Patrik: It depends. It can be. But from my experience, I’d say, eight times out of 10 it’s in another facility.
Ella: Right. But how is the care given? … Is it advisable to use that? Or is it-
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Patrik: Yup. Great question! So, in ICU, at the moment your father would have one nurse for one patient. Or one for two at the most.
Ella: One for two.
Patrik: So in LTAC, it’s one to four, sometimes one to five. Overnight, I’ve seen sometimes one to eight or one to 10. That’s why I’m saying it’s a better version of a nursing home.
Ella: Okay. Other question, Patrik, is moving from an ICU, then non-ICU within the same hospital. Is that a good option? Right?
Patrik: No. It will be better. But for your dad to move from where he is to … Let’s just say they often call it sub-acute ICU or something like that. He probably would have to be off the ventilator.
Ella: Right. Before moving.
Patrik: Yeah, before moving. Or, if he can’t come off the ventilator, he would need a tracheostomy. Yeah, ventilator, tracheostomy. He would then go to sub-acute. But then they would send him out.
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Ella: Yeah. That is the process, or the sequence of steps and everything. Because the thing is, once they’re sending us out, right? Then coming back for treatment or for anything is going to be a big hassle for me. I noticed the last three times he was there, they were giving consideration and all those things. Because I don’t know much of the facilities and they’re going to help me … On top of this, I told you, right, there was a lady who from palliative care also, who was trying to reach me and everything. So sometimes there’s two or three things, then they combine. It makes things confusing and everything. So I was a little bit upset by that.
Patrik: It’s very confusing for families. There’s ICU, there’s sub-acute, there’s LTAC, there’s palliative care, there’s hospice. Everybody has their opinion. Everybody wants something.
Ella: Yeah. And this kind of jargons and this kind of words. You know, yesterday, I was a little bit upset and I asked them, “What is the course of action for his COVID? Where are we with that?” Nobody told me anything about what happened next on that. And then she said, “Okay, we’ll check back with them.” Because, at least he can move to a non-COVID ICU or non-COVID ward. If that’s the case, at least I can come and see him, maybe once or twice a day. He said it is a very good point. He said, I will call them back on this. Because, keeping my dad there, and not allowing anybody else to come. That’s.. Then they will only allow me to come, when it’s the end or something, when they’re about to discharge. I’ll be totally clueless.
Patrik: There was something else there Ella. There is another thing. Often, not all the time, but often when patients go to LTAC, it’s often hours away. It really depends on availability.
Ella: Correct. And moreover, now with this COVID restrictions and all those things, even in the current assisted living facilities, I had a really tough time to come and visit him on a daily basis. They’re saying state regulations. Those kinds of things and all those things. If people are in critical illness, they are saying they are allowing. But I don’t know. That is going to be a hot topic of discussion. I don’t know what is good. I don’t know how they are going to do, because I cannot do everything over the phone or video or something, which is really ridiculous also. It’s a very tight situation or a thing we have to consider later. Down the road.
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Patrik: Yeah. I have another question here. Do you know how big the ICU is? Do you know how big, how many beds?
Ella: Yeah, actually, it is a fairly big hospital.
Patrik: Okay. The reason-
Ella: They have hospitals in different cities. It’s a very big … They’re multi-specialty and everything. They’re having the ICU in a different tower, and the non-ICU in a different tower. And then they have newer ICU. The last time when he was there, he was not on any ICUs. So he was on a cardiac step-down unit, or something like that, they call it. So people, I think once they come from ICU, they are going to come to this and then get better and come out, I think. That’s my assumption.
Patrik: Yeah. No, you’re probably right, there. The reason I’m asking how big the ICU is, sometimes I talk to clients … Their loved ones are in a five-bed ICU, and I say, “Well, a five-bed ICU, they don’t have a lot of resources. They don’t have a lot of experience. So the bigger the ICU, I would say the better, generally speaking.
Ella: Yeah. We are not allowed to go inside now, because of the COVID thing. Previously, when sometimes the doors will open on the cardiology ICU, I could see that it is quite spacious enough. I could see it from a distance. They have one nurse for two patients. From that, you can calculate how it is or how the care is and everything. But it is quite a decent enough facility, I think.
Patrik: No, that’s good. Okay, so do you know what ventilation settings your father is on?
Ella: No. I asked them. One person, three or four days back, the nurse was telling he was on a lowest of settings. That’s what he was telling. And, 400 tidal volume. That’s what I would hear from … I was not sure. Maybe they can take a picture of it and send it to me next time.
Patrik: Please! That would be great! A picture would be great, because that gives us an indication how-
Ella: Where he’s at.
Patrik: Where he’s at. Also, another thing that you should be asking for is arterial blood gas.
Ella: Right.
Patrik: Right? I’ll text that to you, arterial blood gas. And he probably has chest x-rays. I’d say almost daily.
Ella: Every other day, I think.
Patrik: Every other day? And the Glasgow Coma Scale would be important too.
Ella: Both too?
Patrik: The Glasgow Coma Scale? It would be important to know. I’ll tell you why.
Ella: Because what they’re saying is, Patrik, is they’re saying that he’s not in coma, but they’re saying he’s in vegetative state. I think. I don’t know.
Patrik: You said he’s raising his arm. Didn’t you say that?
Ella: I did. Yeah.
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Patrik: He can’t be in … Yeah, a vegetative state is when people are not responding, not moving. That is a vegetative state.
Ella: When they said that, Patrik, I literally, without shedding tears, I was crying inside me. Very hard to take it, actually. Because, sometimes I feel like they make us very down. So down and agitated.
Patrik: That’s why I’m saying, Ella, you need to ignore the negativity. They are negative all day long for the reasons that I mentioned earlier. Watch what they’re doing, don’t watch what they’re saying. As long as they’re treating your dad, this is way more important than them being negative.
Ella: Yeah.
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Patrik: Right? So you got to watch what they do.
Ella: Because the way I am more somewhat concerned is sometimes they … Abruptly, they do something and then say, “We did this, we did that.. Something like that, because of some … I don’t know what pressure or whatever they do. But abrupt decisions or something with or without consulting me… And we are kind of cornered. You know? Sometimes, we don’t know what to do, or what to say. Put our words on our mouth or something. And then we just yield to them or something by mistake. And I don’t know. That’s the thing. Yeah.
Patrik: Yeah. How do you get updates? Do they call you?
Ella: What they do is, only when there is a significant change, positive or negative, they are going to call me. Otherwise, I’m calling three times the nurse and then trying to get some information. Some nurses are very kind enough or able to talk a little bit more. And then maybe they respond to me back. And, the other day, for the first time, Sunday, I was having a WebEx with … Just to want to see him. One nurse arranged me to see him. And I just said some prayers to him in a soft voice. So he was three, four times, he was moving at hand out of pain and everything. I was also fearful that I don’t want to agitate him or something. But he was doing some responsiveness, in terms of his movement.
Patrik: Sure. But I can assure you that if he’s moving his hands, he’s not in a vegetative state. I will send you the Glasgow Coma Scale card, because you can see … It’s important for you that you understand that. The other challenge is this. He might be able to breathe by himself, but if he can’t follow commands-
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Ella: He can’t do that.
Patrik: He can’t do that, at the moment.
Ella: Yeah, at the moment. Yeah.
Patrik: Is he still on sedation?
Ella: No sedation for the last three, four days.
Patrik: Okay. All right. That’s good. But it takes time to wake up. It takes time.
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Ella: Yeah. It depends on the years, and also the severity of the brain damage.
Patrik: Very much so.
Ella: But one thing I wanted to add. I just don’t want to add at the beginning. But for me, they did a lapse or something, but … They were treating him for.. What do you call that? The blood clot? They gave a high dosage of aspirin and also Lovenox injections. And then because of his high BP, the blood hemorrhage is triggered and then it just went off and they couldn’t come back. So I don’t know. I asked the question first, the beginning itself, and the doctor was saying, they need a proper treatment for the COVID preventive care or something, he was telling them.
Patrik: Right. Is there a neurologist involved?
Ella: Yeah, he’s in a neuro ICU only, but I was very surprised that they are not giving any other neuro, or responsiveness or further tests or anything like that. Just observing him. I don’t know what kind of a neuro ICU it is. I don’t know.
Patrik: Have they done a CT scan of the brain?
Ella: Yeah. They have done that. But they have not done another one for the past three, four days. And they also mentioned about the swelling, but they said it gradually will come down or something. They will-
Patrik: Probably… Ella, I am very pressed for time, which is why I-
Ella: Okay, that’s fine.
Patrik: I couldn’t do 11 o’clock. Very happy to continue the conversation even in about a couple of hours, but then it’s probably too late for you, I think.
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Ella: Yeah.
Patrik: Why don’t you reach out when you want to talk again? I will send you some information. I will definitely send you the Glasgow Coma Scale. That is really important for you to look at, so you can actually ask them. And then I would send you an email with what information we need about the ventilator.
Ella: Oh, okay. Settings. The settings.
Patrik: But a picture would be the easiest.
Ella: Yes. Okay. I will try to get it.
Patrik: Okay. I need to run. We’ll talk when you want to talk again.
Ella: Okay. Thank you.
Patrik: Thank you. Thank you so much! Thank you.
Ella: Okay. Thank you.
Patrik: Bye.
Ella: Bye.
Patrik: 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
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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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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