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 ICU Ventilated with Tracheostomy. Can Mobilization Help Him to Wean off the Ventilator?
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 Joy, as part of my 1:1 consulting and advocacy. Joy’s dad is in ICU ventilated with tracheostomy and she is asking if it will be safe for her dad to move him out to LTAC.
My Dad is in ICU Ventilated with Tracheostomy. Will it Be Safe to Move Him Out to LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Joy here.”
Rey: I think we could probably consider him that, but he hasn’t been getting the chemotherapy, so maybe he’s not as immunocompromised as that. But maybe from the malnutrition. Just this morning I called early this morning and told the nurse to add in flaxseed oil, zinc, vitamin C and vitamin D3. He’s getting a multivitamin already, but I told him to up those amounts in addition to the multivitamin.
Patrik: Okay. Okay. What would you like to see happen next?
Rey: Well, I would like to see his lungs continuing to get strong. He can be mobilized, like you’re saying, but also due to the fuller nutrition, giving his body more to work with, to heal with. But now considering the multi myeloma and this lump that’s getting larger on his forehead, I would like to see that go down, of course. And I had heard, well, I had read that in our place for decades, they have used flaxseed oil in combination with protein shakes or something of that nature for the uptake of the flaxseed oil. And that has had a beneficial effect on shrinking tumors, comparable to chemotherapy in some cases.
Joy: And then, once he’s stronger, like he was saying, once his lungs get stronger, we’d like to see him come off of the ventilator, and just minimal oxygen requirements, if at all. And then we would like to see him get some physical rehab, like you were saying, and mobilized more and reach whatever his highest potential is with that. And we’d like to bring him home.
Patrik: Of course. Of course.
Joy: We’d like to bring him home.
Rey: We want to prevent him going to a stepping-down place.
Joy: The LTAC. That’s what they’re pushing for.
Rey: We would like to prevent that if at all possible.
Patrik: And I would recommend preventing that. You see, I’m sorry to say that you’re stuck between a rock and a hard place, and I’ll tell you why. I don’t know, Joy, I think you might have done a little bit of research. I’ve done countless of videos where I talk about my experience with LTAC (long term acute care) or I talk about our client’s experience with LTAC. It’s not a good one, generally speaking. They will try and “sell” you to go to LTAC and they will position the LTAC as being the specialist to wean him off the ventilator. That’s the sales pitch. My experience is it’s anything but. There are some good LTACs out there, but they’re far and few in between.
Patrik: Right, right. Look, not that I’ve come across some good LTACs in that state, but if you are considering LTAC, you should definitely have a very good look at those places. And you should be talking to the people there. And you should be asking for success stories. You should be asking whether you could talk to any families there that have been in a similar situation then you’ve been in. That will give you an indicator whether that can be facilitated or not.
Joy: That’s a great idea.
Patrik: From my perspective, Rey and Joy, so your dad has been in this hospital now for a few months?
Joy: So this hospital, he’s been in for about three weeks, Rey, I think. About a month.
Joy: Three to four weeks. And this is the hospital, when he was readmitted to the hospital, we decided to take him to this hospital, because his doctors were there. The original hospital he went to with COVID was the one closer to his home. And so in that hospital, he had been there for a month.
Patrik: For a month. Okay. Because disrupting a care episode for someone on a ventilator, in my mind, is just madness.
Patrik: It’s just madness.
Rey: In the meeting, I told them yesterday that we are not inclined to do another transfer to a different venue when we had these unresolved issues, and I was referring specifically to the vent at that time.
Patrik: And what was their response?
Rey: They just received it. They tried to assure us that they are, what’d they say, with his diet and breathing, he can be handled outside the hospital in another venue. Now that his diet and his breathing, those issues have been addressed and things. But we’re looking for healing. And even with his diet, just because he’s getting nourishment doesn’t mean that his appetite’s back and he’s eating full meals and stuff. One of the underlying problems for months was that he was not eating enough to thrive. So even with the feeding tube, doesn’t mean that that issue has been resolved. He still may have some other healing to do beside that. And through all of this, we don’t know where his psyche is.
Rey: Maybe his diet has something to do with all of this.
Joy: And the other thing, just to tell you, Patrik, they emphasized that they’ve gotten him to a point where they’ve done everything that they can and that now he needs time and that he can have that time and heal, and they can step him down in a long-term nursing facility, step him down from a ventilator.
Patrik: Yeah, understood. The other question, especially with the multiple myeloma is let’s just say you were agreeable sending him to LTAC. Another big question there is, what about the specialists? Can they see him in there? Can they treat him in there? What happens if there are setbacks? From my perspective, the worst-case scenario is this, or one of the worst-case scenarios is this. You send him to LTAC, there are setbacks where I guess with his history, either with the myeloma or with the ventilator and maybe he needs treatment for the myeloma.
Can they do that at LTAC? Does he have specialist access? What does that look like? Or is the risk of him bouncing back to ICU real? I believe it is. Right? And then again, worst case scenario, what I’ve seen over the years is if someone goes to LTAC and they bounce back to ICU, there is no guarantee that the original hospital still has a bed available. I have seen patients in your dad’s situation going from ICU to LTAC or pulmonary ward, which is like a stepped-down ICU, and within three days they’re in another ICU because they’ve bounced back and all of a sudden there’s no longer a bed available in the original ICU. It’s madness.
Rey: And all along, Patrik, most of the doctors, I feel, at least half of them have been telling us the information that they simply want us to know so that they can control this.
Patrik: Of course.
- INTERVIEW WITH CHARLIE ATKINSON WHO WAS A PATIENT IN ICU& LTAC FOR MORE THAN 12 MONTHS AND SURVIVED AGAINST THE ODDS! LISTEN TO CHARLIE’S INSPIRATIONAL STORY!
Rey: And I feel in this case, I think the oncologist, and Joy, this is what I suspect, is that one of the motivations for the doctor and the oncologists to say that they don’t recommend treating him anymore, they don’t want to treat him anymore, is so that there wouldn’t be that issue of them treating him that might prevent or delay him from going to an outside.
Joy: Oh, I totally agree. He’s done. He is like this. moving around.
Patrik: Their worst-case scenario is treating someone for long periods of time with an uncertain outcome. That’s their worst-case scenario. And they have so much pressure on their beds that for them the best solution is send them out or, unfortunately, for someone to die. It sounds harsh, but that’s just the reality. So you’ve got to see from their perspective, managing their beds, managing their finances, managing their resources, that’s the way you need to look at it, unfortunately. Now that’s in the respiratory ward, is the treating team the same?
Rey: It should be some of the people we’ve worked with before. He came from that exact floor, that exact location, not the same room, but what was it before he went into ICU, Joy, about-
Joy: Yeah. Well, he’s on the same floor. The nurses are supposed to be the same nurses that had worked with him previously. He was in Room B a week and a half ago. Now he’s going to Room C. It’s, I believe, on the other side, on the other hallway. So it seems to be the same staff that he had had prior to the ICU. Like I said, I’m going this evening, so I’ll see.
Patrik: Right. And they are now… Sorry, go on. And they’re basically now already positioning themselves by saying to you, “Oh, that’s as far as he can go with us. In order for him to go further, he needs to go to step-down or LTAC,” or whatever the label is.
Rey: Right. And then it’s kind of a contradiction because ICU says that they’re the ones who adjust the ventilator and the times that he’s off and the times that he’s on, but we’ll send you to the pulmonary floor and they don’t do that there. So in the next institution, that’s where they do that? They can’t do it on a pulmonary floor right there in the same hospital, but they can do it in this other institution wherever. Okay.
Patrik: The system, it’s just terrible. So here is my experience from LTAC, again, probably digging a little bit deeper there. In ICU, he would’ve had a nurse, one nurse for two patients, maybe that’s still the case on the respiratory ward.
Patrik: Right. Okay. You go to LTAC, that’ll drop to one to four, one to five, potentially one to 10 overnight.
Joy: Oh, God.
Patrik: And this is where the insanity comes in, from my experience. Very few people are more vulnerable than your dad at the moment.
Rey: Right. And he has to have the restraints also.
Patrik: That’ll only get worse if the nurse-to-patient ratio goes down. That’ll only get worse. So psychologically, he’ll enter a very dangerous space there. Not only that, the skill level in an LTAC is not an ICU skill level. I argue that, and not only argue, but there’s also research out there, that the only safe place to look after someone on a ventilator with a trach is with ICU nursing staff, ICU doctors, respiratory therapists.
The whole set of LTAC, from my experience, is just set up to save money. It’s not geared on clinical need. Again, there are some good LTACs out there, but we very rarely come across them, very rarely. So he’s going into a very dangerous space where there’s a lot of room for error, where they often don’t know how to deal with deterioration besides sending people back, making someone as vulnerable as your dad, even more vulnerable.
The other thing is they will position the LTAC as, “Okay, we can’t mobilize him. That’s not what we do. But in LTAC, he will get mobilized and he will get this, and he will get that.” Normally, I say trust, but verify. With LTACs, it’s just not happening. It’s all sales pitches and nothing’s happening. But maybe your next step is to look at a couple of them, maybe there is a good one.
Rey: Yeah, we’ll probably look at a couple of them. But do you have any places that we might avoid him going to the LTAC?
Patrik: For sure. I do have suggestions there, absolutely. So I assume one of you is the power of attorney or both of you?
Rey: That’s me.
- Quick tip for families in ICU: You were absolutely right, LTAC is a complete waste of time after ICU!
Patrik: Right, right. Okay. So let’s just say, Rey, they come to you and they say, “Hey, Rey, on Friday, next Friday, we’re going to move your dad to LTAC.” Well, your response to that should be, “I’m not consenting to this.” That should be your first response. If they tell you, “Oh, no, we’ve got to move him. You don’t have a choice,” your next step is to either go to hospital executive and escalate your complaint or whatever you want to call it. Also, every hospital has a discharge policy. Everything in a hospital has a policy, everything. Mopping the floor, cleaning the windows, everything has a policy, including discharges. I would challenge them and say that, in their discharge policy, there would be something in there that you would need to give consent. Okay?
Patrik: Now, other question for you. Has your dad’s health insurance come to you and said, “Oh, we need to limit the number of days in ICU?” Has that been part of the discussion?
Rey: Not with us directly.
Patrik: Good, good. That’s all you need to know. If the health insurance came to you and said, “Rey, your dad is running out of entitlements. He can only have another two weeks of ICU,” I would be worried. But if you haven’t had a phone call or a letter or any of that, I would say let’s just keep him where he is.
Joy: Oh, okay.
Patrik: Right? Sometimes-
Joy: But he’s already been moved from ICU.
Patrik: Sure. But not because he was running out of entitlements, not because of that.
Rey: Right. We didn’t do that.
Patrik: If the hospital comes to you and says, “Oh, we’ve spoken to the insurance, and they’re telling us he can only stay for another two weeks,” I would verify that if I was you.
Patrik: It sounds simple, but it’s not easy. To avoid a transfer to LTAC, put your foot down.
Patrik: Put your foot down, and tell them, A, you need more time to investigate, you need to look at a few of them, and B, just play on time. The other thing with LTACs that not always, but often happens, look, let’s just say you’re finding an LTAC where you say, “Hey, I think this is really good.” Maybe you’re finding that. But it’s two hours away from where you are. There are LTACs in that state. I know about that. But depending on where you live, it might be three hours away and you go like, “Oh yeah, this might be good, but this is too far away from me. I can’t see my dad.” So there’s a number of variables that you need to look at.
Patrik: The other thing is some hospitals have their own LTACs. That doesn’t necessarily mean that it’s a good thing. It just means they’re attached. They’re trying to refer to their own LTACs, which the only advantage there is that if he, God forbid, does need ICU again, there’s a higher chance he will stay within the system. But that’s probably about the only advantage that I can see.
Joy: They did give us a list, Patrik, and they said that these were their list of LTACs that they are affiliated with.
Patrik: But that doesn’t mean they’re within the same group. Affiliated with means they are our referral sources. So he’s not in a big hospital, or there’s some others that sort of are a group. If it was or what’s the other one? I can’t think of it now. But there’s a few where they say, “You’re now in a hospital, now you’re going to LTAC.” That’s not what they’re implying.
Joy: Right. They didn’t have any LTACs that were directly associated to-
Patrik: Related. Associated, yeah. Yeah. Okay.
Joy: Or related.
Patrik: Yeah, yeah, yeah. It’s not the same group. Okay. Look, you should definitely have a look at the couple of them and have a look at online reviews.
Joy: Yeah. Okay.
Patrik: Online reviews, generally speaking, for LTACs are not great.
The 1:1 consulting session will continue in next week’s episode.
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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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