How Can My Mom Come off the Ventilator in ICU & Avoid Long-Term Acute Care (LTAC)?
Published: Tue, 06/06/23
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 Lloyd, as part of my 1:1 consulting and advocacy service! Lloyd’s mom is in ICU, ventilated, and he is asking how his mom can come off the ventilator in ICU and avoid LTAC.
Patrik: And then make her go to LTAC a separate issue with ICU only. If she’s not having a PEG, she’s not going anywhere. I would leave that just with ICU saying, “Hey, look, I’ve done my research about LTAC. This is what I’m finding. I do not think that LTAC is the right next step for my mom. I think she should be weaned off… She should have the trach, should be weaned off the ventilator and then go
to a neurology rehabilitation center.” Now, I can’t remember. We spoke about this, about her having a neurologist.
Lloyd: Yeah. I found one today that I was going to call tomorrow to see if that has privileges, I think, with this house or affiliated with this hospital. But when we asked a social worker about a
referral kind of thing, she said that, or even the attending, she said, “You wouldn’t need that right now. It would be like in three months.”
Patrik: Okay, yeah. Okay.
Lloyd: But I was going to call, if I call this neurologist, what do I say? Do I just tell him that my mom is in ICU and we just need him to see if he can look at the records or what?
Patrik: I think
so.
Lloyd: What do I tell him?
Patrik: Yeah, I think so.
Lloyd: Okay. I don’t need him to intervene at this point to try to intervene.
Patrik: I don’t think so. No, I don’t think so.
Lloyd: Okay.
Patrik: I don’t think so.
Lloyd: Okay. And do you have
the name of the place in the city that I know you said that they haven’t been very responsive, but-
Patrik: Definitely. I’ll send you the officer’s number. I’ll just tell you
briefly about him. He is a gentleman. He’s in the city, as you’re aware, you contacted me initially through Intensive Care at Home, and they’re doing
similar things in the city. That guy is not a clinician, the reason he set up this business, his daughter has been ventilator dependent from pretty much when she was born. So he had to find solutions for his own family, and then he made a business out of it. I think they’re pretty small, and as I said, they haven’t been very responsive, but maybe he’s responsive to you. I think he’s way too busy to attend to all of the people that I consent him. That’s my impression. But I will send you his contact details.
Lloyd: You never know, it’s a shot in the dark.
Patrik: You never know.
Lloyd: But I can always share.
Patrik: You never know.
Lloyd: I looked at some
other places. There are some places here that do in-home rehabilitation services, but then you have to get home health separately aides or nurses separately. So, I guess that’s an option, but I don’t know in terms of, it’s the way the insurance here, it’s really crappy. But that’s another option that I can look into. They don’t have any services. I think that would be a great business thing to find a service that can coordinate all of this stuff and look at what the insurance things are. But Belle, Paul, you
have anything you want to add that I may have missed?
Belle: I don’t understand what is the plan now for the event. Once she’s on the tracheostomy and we’re saying she’s not going to Long Term Acute Care (LTAC) what’s going to happen? Where is she going to… We want her weaned off the ventilator, obviously. And we want her then to go to neurological
rehabilitation?
Patrik: Belle, I tell you
what I think needs to happen next. So she needs to have the trach. I think we talked about this briefly on our last call. The next step might be that she’s going to a step-down ICU within the hospital or a respiratory weaning unit within the hospital. Do you know whether they’ve got a step-down ICU?
Lloyd: No,
no, I think they just have regular, I mean, it’s just ICU and then just a regular room, I guess.
Patrik: Rooms, yeah. Are you certain, or do I think you should ask the question? This new hospital is a big hospital, isn’t it?
Lloyd: Pretty big, yeah.
Patrik: Right. How many beds are in the ICU?
Lloyd: 34, I think.
Patrik: Oh, that’s pretty big.
Lloyd: No, 16, 30. Yeah,
it’s like 34.
Patrik: Wow, okay. That’s pretty big. So I would imagine they have some kind of, it could be called step-down ICU. It could be called a high-dependency unit. It could be called a respiratory weaning unit. Surely there must be something in this hospital.
Lloyd: Well, the reason why I’m saying, it’s like they kick everyone out.
Patrik: Of course. No, no. I get that. No, I get that.
Lloyd: I was trying to beat around the bush with one of the nurses, and she wasn’t divulging anything. It didn’t make it seem like she wasn’t volunteering that there was anything else.
Patrik: Yeah. Now look, Belle, it’s a very reasonable question of you to say, “Okay, if we’re not doing a Percutaneous Endoscopic Gastrostomy (PEG), what are we going to do?” And this is a big challenge. If she’s going to LTAC, I argue she’s definitely going into the wrong place. If she’s not having a PEG, she’ll stay potentially in a suboptimal environment. I agree with all of that. But I believe that once she’s gone to LTAC, once you’ve given consent to a PEG,
and once she goes to LTAC, have a look at those LTACs. You’ve seen the reviews online, maybe go there.
Lloyd: Yeah, they’re horrible.
Patrik: They’re horrible. Maybe go there to have a look for yourself and see what’s happening in those places, you know it’s not good. It’s a tricky one. My argument is, or my question would be, is there a step-down ICU or a high-dependency unit where she can go next within the hospital?
Lloyd: And then from there, it would be, what’s the one below the LTAC? Then she would be able to go to…
Patrik: Sub-acute.
Lloyd: Sub-Acute, if she’s able to stay here longer, and then she could go to sub-acute.
Patrik: Yeah. Or-
Lloyd: Is that what the next step is?
Patrik: Yes, or assuming she keeps improving, then maybe LTAC, I’m not saying never send her to LTAC. It’s just that I don’t think at the moment, LTAC is a good place. If she comes to the point where she’s weaned off the ventilator,
maybe then LTAC is a safe option.
Lloyd: Okay. So she has to be weaned off the ventilator, but she can’t go there with a feeding tube. The problem is she has to, I guess we’ll have to look into it, but most of these places don’t take people with feeding tubes, right?
Patrik: With a nasal… Again, what-
Lloyd: With a nasal-
Patrik: Yes, that’s right.
Again, at the moment, no to PEG. However, that doesn’t mean you can’t revisit that, but at the moment, I think it would be the wrong thing to do.
Lloyd: Okay. So then down the line, we could consider the…
Patrik: Oh, look-
Lloyd: At what point do you consider the PEG?
Patrik: Yes. I tell you when I could consider a PEG. If for whatever reason, God forbid she can’t come off the ventilator and she can’t have the trach removed, once that’s confirmed, then a PEG is probably inevitable. But it’s been two weeks.
Lloyd: And when you say
it’s been two weeks, what are you-
Patrik: It’s not a long time.
Lloyd: Okay.
Patrik: It’s not a long time. So what I mean by that is-
Belle: She’s getting better every day. She’s getting stronger every day. That’s what I think.
Patrik: Right. There you go. Well, that’s another argument for you, for your mom. You know that she’s getting stronger every day. Why would she need a PEG? They want her out.
Lloyd:
Yeah.
Patrik: They don’t have the patience for her to get stronger.
Lloyd: Okay. So then just envisioning the nasogastric tube when… Because
they’re not going to give her, it doesn’t look like they’re going to give her any rehab here. So I’m wondering, is that something that’s also going to set her back if they don’t give her rehab here and she stays for a number of additional weeks?
Patrik: Yeah.
Lloyd: How detrimental is that going to be?
Patrik: Yeah. I don’t think it’ll be as detrimental as going to LTAC.
Belle: Why won’t they give her rehab? But they’ve been giving her rehab already. I don’t understand-
Patrik: Right, right.
Belle: … why not rehab.? Wouldn’t we tell the CEO that? That we expect her to get rehab. That’s part of our-
Patrik: 100%.
Belle: And do we tell to contact the CEO via the patient advocate? We’ve been working with the patient advocate. Do they approve for that meeting or we bypass them?
Patrik: I would bypass them if I was you, the patient advocate… Look,
the patient advocate is a hospital employee. It’s hard to say, some hospital patient advocates are good. Some of them are not so good. My experience is they’re hospital employees.
Lloyd: Yeah, I got the sense, because I called them today and they wanted to reach out to the team, the medical team about it. And I told them
to hold off until after the trach, which we thought was going to be tomorrow morning or whatnot, but it’s not anymore or today. All right. So then that’s our next step is to reach out to… And by email, by phone, do we call them? What’s the best way?
Patrik: Probably emails. Write them an email. You should also cover your tracks in terms of an email so that you have evidence.
Lloyd: Yeah, I just have to find, I’ll have an email address, I guess that’s the-
Patrik: It might be as simple as you are typing the name of the hospital CEO into Google and next type his name and email, and it might be as simple as showing up.
Lloyd: Okay. Okay. I’ll try to work on that tonight. Okay. Paul, Belle, any other questions?
Belle: So the email to the CEO does not need to be lengthy. We don’t have to go into a big-
Patrik: No, no.
Belle: Can be pretty distinct. Okay.
Patrik: No. And make use, Lloyd, of the links that I sent you, especially that second link where it says senior law in your place. Put that in your email and say, “Hey, look, decision making is up to us, not to the team.”
Lloyd: Okay. Yeah. He said that we have to trust
him.
Patrik: Oh yeah, of course.
Lloyd: And apparently the medication choices and stuff, that hasn’t been optimal for her anyway.
Patrik: Right, right.
Lloyd: Yeah, okay. Any other suggestions? That’s pretty much it.
Patrik: I think that’s pretty much it. I can talk later tonight. I’m just very busy at the moment, but I can talk later tonight or tomorrow if you want to set up another call, no issue. I just need to go now, I’m afraid.
Lloyd: Okay. All right. No, that’s fine. Oh, just one more thing. If we needed you, would we just authorize you to speak to him?
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