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
How Do I Know If My Critically Ill Mom Is Getting Heavily Sedated in the ICU?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “QUESTIONS ANSWERED” I want to answer questions from one of my clients Tom, as part of my 1:1 consulting and advocacy service! Tom’s mom is with a breathing tube and is on a ventilator. Tom is asking how he can stop the ICU team from pushing her mom out to LTAC.
How Can I Stop the ICU Team from Pushing My Mom Out to LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tom here.”
Tom: Oh, okay. Like a culture.
Patrik: Yeah, culture. That’s right.
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Tom: All right. Yeah, and I read like wait, did something happen? I read it as that… That’s what that means. But yeah, so that’s where we’re at. I mean, I saw on the doctor’s note that she is now saying advanced physical therapy, occupational therapy as tolerated the last two days. And then her notes have also said proceed with looking for LTAC because this will be a long-term wean.
Tom: And so, like we mentioned to you, the discharge nurse already contacted us Wednesday and discussed the steps. I actually spoke with the discharge nurse, my dad was working and so they called me. And I expressed all of the concerns that my dad and I have already discussed, and some that we broached from working well with you.
Tom: And the discharge nurse, he said, “I don’t want to alarm you, she’s not ready for discharge but I try to give family’s time, because all of this takes time to discuss, to think about, to get back to each other.” So I appreciate that but I’m also a little skeptical as to what he means by not ready, because I’m observing my home care. The doctor is saying advanced physical therapy, and I mean, the long-term wean. Okay, does that mean they’re pushing her out now? Even though he says it’s not… well, that was on Wednesday. He said, “She’s not ready yet.” Today’s Saturday, so that’s what? A few days later, what’s the timeline before them really… they can’t say a lot of things.
Patrik: I’ll tell you what I can see straight away when they say she’s not ready. If she just had blood transfusions, if she is still on Precedex and fentanyl, I argue those two things alone mean she’s not ready. But if that was to happen in LTAC I think she would bounce back to ICU very quickly, very quickly.
Patrik: So that’s one of my interpretations of when he says she’s not ready. Another thing that would be important to know is what ventilator settings is she on? It would be important to know what are her arterial blood gases and other blood results. So that there could be… with everything that you’ve shared, just by knowing she had a blood transfusion, just by knowing she’s still on fentanyl and stuff, she’s not ready. I see that.
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Tom: Yeah, and ready.
Patrik: I’ll tell you when.
Tom: Ready, meaning stable?
Patrik: Stable, but I guess, their goal… from what I understand she’s sending you to LTAC, is that correct? Are they talking about that already?
Tom: Well, they did. And I told him, “We don’t want that, we have a lot of concerns regarding staffing ratios, regarding expertise, regarding distance.” And so I said, “We don’t want that.” But my dad and I don’t actually know how far we can push by declining LTAC. We’re not clear on what are the options, because I asked him about the in-patient unit, rehab unit. And he said, “Oh yes, we have those. They would still be considered a discharge from the hospital because it’s a separate entity. I said, “Okay, but it’s in the hospital. It gives us some peace of mind.”
Tom: But he said, “Well, I certainly will look into that because there are insurance timelines.” Which, I don’t know what’s up. This is the first time I’ve ever even stepped into this world of insurance or whatever. My mom doesn’t even have any insurance. She’s 60.
Tom: And so he just said, “She has to meet that criteria, so let me talk with that doctor. But go for yourself just to find out if her situation fits it.” And I said, “Well, what is the criteria? Is this available for me to look over. I want to read the policy.” I can try my best to interpret it, but he didn’t provide it to me. But he just said, “Well, there’s different things, you would have to show a need for requiring all three types of therapy, occupational, physical, speech.” I said, “Okay, check, check, check, they’ve already told us she needs all of those.”
Tom: And then he explained something about… I don’t remember, something that was very vague, really. And it seemed like she said that, I just didn’t know how to argue medically, clinically, and what’s so unique about her situation… I mean, I believe there are many things but I don’t know how to mediate with them in their language.
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Patrik: Yes. Look, I’ll tell you what is unique about your mom’s situation in and of itself. She survived COVID pneumonia/ARDS . That’s unique in and of itself. There’s a lot of people not surviving that at the moment so that’s definitely a positive. I guess what is now also unique, it may be not so much for the ICU, but what is very unique for you as a family is what’s next?
Patrik: I mean, for them it’s sort of one size fits all, but the problem is the one size fits all very rarely fits patients in those critical situations. So I’ll tell you when they’ll probably come to you and say, “Oh, she’s ready to go somewhere else. I’ll tell you when that probably happens.
Patrik: It’ll probably happen once they feel confident that she’s not bleeding. They probably would also look at ventilator settings. And in terms of making some progress there that she’s doing some of the work herself, that’s the part I don’t know at the moment. It would be very advantageous to know what ventilator settings she is on. And given that she’s still on Precedex and fentanyl, I would feel very uncomfortable that an LTAC can manage that. I mean, I feel very uncomfortable, as you know, I’m very uneasy about LTAC anyway. But anything that sort of complex, and weaning someone off sedation can be complex, especially if there are delays.
Patrik: So, if she can stay in the ICU for as long as possible, and now that you’re talking about… they are starting physical therapy, are they?
Tom: Very, very lightly, and just a couple of minutes. I don’t even think it was five minutes yesterday. I understood that as what she tolerated, but I definitely plan to ask for some details from today.
Patrik: When you say your mom is awake, what does that look like?
Tom: So Wednesday was my first time getting a really… she looked coherent, she looked more oriented. Well, in my heart, I feel like she smiles a little bit. My sister’s taking care of the yard just like it. She has this big green thumb for her yard and so my sister really is trying to take care of it for my mom while she’s away. And so she seemed to smile when I said that.
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Tom: And then we asked her a few questions and she was able to answer yes and no pretty promptly. And yeah, I mean of course she could be saying yes or no for any question. But I just thought, just let me gauge that for a test. And then she seemed to understand too, my dad was like, “I’m going to massage your feet, okay?” And she said, “Okay.” And then, when he went to her feet, she didn’t want to remove by her that touch.
Patrik: Yeah, yeah. No, that’s good, that’s good. I mean that, in and of itself, sounds so much better than last week.
Tom: Oh, yes. Last week she was looking right past us.
Patrik: That’s really good. So I’ll tell you what else needs to happen. Let’s just say your mom is making progress to wean off the ventilator. If she’s making progress to be weaned off the ventilator, my argument is well, why would you go to LTAC and not stay where she is. That would be my argument.
Patrik: There are a few very good LTACs out there but they’re far and few in between. Often when patients go there, they usually go backwards. And you’re obviously trying to avoid her going backwards, and whilst she’s making progress, hopefully, where she is, keep her where she is.
Patrik: I wouldn’t be too worried about insurance, and I’ll tell you why. If there’s an issue with insurance they will contact you, the insurance will contact you. Its one thing from the ICU to say your mom needs to go because the insurance has stopped paying or will stop paying. Okay, that’s all good, but as long as they don’t contact you direct.
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Tom: Yeah, actually that’s good that you mentioned that. My dad, I hope there’s someone that would help him call this week. I think my mom’s employer did tell my dad that they would cover 8 weeks of ICU when he notified them that she was admitted.
Tom: But he’s never dealt with them directly to even know what all the criteria, my mom always managed that herself. So we need to call and get more information, now that she’s actually admitted. But I did want to let you know that that is… not accepting a no, what they all cover. But she does have health insurance from the government.
Patrik: Yeah. Look, most health insurances, from my experience most of the insurances cover at least 8 weeks or 2 months of ICU. But the reality also is that, let’s just say after 8 weeks your mom still needs ICU. I mean, it’s not that people just say oh, she needs to leave ICU, if she still matches ICU criteria from a clinical perspective, and she needs it a little bit longer, it’s usually all up for negotiation.
Tom: Yeah, I understand. And I mean, we understand she’s going to need more coverage after these 8 weeks for sure. Well, something else about the ventilator I was going to ask you. I mean, I know that there’s gradually coming down on the PEEP (positive end expiratory pressure), but I’m getting the impression that they’re going to stretch her. Right now she’s at 80 and she’s been at 40 for the last couple of days that she’s been awake.
Tom: But PEEP of 8 is the lowest that’s ever, ever been at. And I’m not really sure what their plan or strategy is about lowering that PEEP. It has been saying that during the tracheostomy she’d be saturated very quickly.
Tom: And so there is that, I guess, being some such generalization on what thresholds of PEEP they’re willing to go down on. So I’m just wondering if 8 may be the threshold that they’re setting it at, is that what they’re going to discharge her at.
Patrik: Yeah, that’s a great question Tom. So I’ll tell you what I think would be advantageous. If you can take a picture of the ventilator, or your mom. And you can send it to me, because the PEEP is just one arbitrary number. Now, it’s an important number, don’t get me wrong. But it’s just one number from many numbers that need to be looked at. So it would be very helpful if you could take a picture of the ventilator and send it to me.
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Tom: Yeah, I have one that my dad sent me maybe 30 minutes ago, so I’ve pulled over right now on the road. I will email it to you and then we can pop… I’m sorry, I just looked at him text message to find this photo he sent me. And he just told me that the discharge nurse just came back into her room. And so he’s asking me if I can hurry up and get there because he’s going to come back, the pulmonary nurse.
Tom: So maybe I should let you go for right now, just because I know my dad would like some help with that. So let me just send you the ventilator photo that he sent me a little bit ago. And then would it be okay to communicate via email or I also can get back to you by putting another text and sending that to you?
Patrik: Yeah, you can get back to me, we can talk later this afternoon. You can email, you can also… are you on WhatsApp?
Tom: I do have a WhatsApp. Would I just dial this phone number that you have? Or…
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Patrik: You know what I’ll do, if you give me a second I’ll just quickly contact you on WhatsApp. I’ll send you a text on WhatsApp.
Tom: Or email.
Patrik: Email. Email is fine.
Tom: Actually, Patrik. Actually, email would be better because then my dad and I could both contact you on.
Patrik: Oh yes, of course. Of course, yeah. Yeah, absolutely.
Tom: Or if you don’t want to use that, that’s fine. Okay, so let’s be on email, I just sent you the photo. But yeah, I’m going to get back on the road. I just moved over to the shoulder just so I could hear you better, and I’m only a few minutes away from him. So I’m going to head him way now and then I’ll give you an update once I’m there to get more information. And as far as one can tell in a couple of hours. Right, well I have some homework to do.
Patrik: Yeah, okay. Okay, I’ll wait to hear from you. Thank you so much, Tom.
Tom: Okay. Thank you Patrik. Take care, bye-bye.
Patrik: Yeah, 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
- 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
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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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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