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 Tom, as part of my 1:1 consulting and advocacy service! Tom’s mom is a long-term ventilated patient in ICU. Tom is asking how to have the power to refuse if his mom will be pushed out to LTAC.
How to Have the Power to Refuse If My Ventilated Mom in ICU Will Be Pushed Out To LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tom here.”
Patrik: Mm.
Tom: And I did, I said, “Now she’s too vulnerable. She just had this, she’s barely coming off sedation, it’s not even out of her system, you guys aren’t even giving her a chance.” And I mean, I went on.
Patrik: Good.
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Tom: And then I said, “We don’t want that,” and well, I said something too, like we were having a dialogue, and I did share with you in the email I did feel like she was more personable and-
Ronald: More sensitive, like-
Tom: … yeah, and more sensitive to the situation.
Patrik: Good.
Tom: But I did say, “It feels like we’re being pressured and then I told her that.” I’m like, “So the previous gentleman, and it’s nothing personal there, but I’m a little concerned,” I thought this led by the information he gave us. And so I told her, I said, “We need time to look into this.” And so right now on record we’re not then colliding with LTAC, we’re now we’re saying we need more time to research.
Ronald: Which is true, but we’re pretty much trying to use that as long as we can.
Patrik: Well-
Ronald: We’re using that to buy time.
Tom: Well yeah, we are using it to buy time. But I told her, I said, “I’m actually looking into speaking with some families that have gone to these places,” and so she was like, “Oh,” and she pretty much sat up when I said that. And I said, “So I’ll let you know when we have more information about what we’re learning.” And I said, “But I don’t want to feel pressured.”
Ronald: And I said, “And is this necessary? I mean, do we need… And we can get legal advice on this matter.”
Patrik: Good. Good.
Ronald: She’s very much… yeah, she said, “Oh, oh, that’s not needed, and we understand you’re not ready. I can document that.
Patrik: Good.
Ronald: It’s no problem. “And so I was like, “Oh yes.”
Tom: She backed off.
Ronald: … she totally backed off.”
Patrik: Yeah. No, no, sometimes it’s just a case of you mentioning the legal side of things, and they don’t want that. They don’t want that.
Ronald: Yeah.
Patrik: But here is another thing-
Ronald: So we would have never noticed until my son started talking to you, Patrik. So, thank you so much for everything. For your advice, the way you put things, it’s just amazing.
Patrik: You’re very welcome, that’s what I’m… that is what I’m doing. That’s what I like to do. But coming back to also, because she is so fragile mentally at the moment as well, that’s another reason why she shouldn’t go to LTAC. She goes to a new environment, the level of care will be going down. That’s the last thing she needs.
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Tom: Yep. And on today’s notes, I think it was today, they prescribed her antidepressants. Did you see that?
Patrik: I didn’t. Just give me another second.
Tom: I’m pretty sure-
Patrik: I couldn’t see it-
Tom: … I’m pretty sure it was in today’s…, all right.
Patrik: Okay, and then I’m just going back to the list-
Tom: I don’t think I miss that one.
Patrik: … I’ve just got the list here now, quetiapine. If you are… are you referring to the quetiapine?
Tom: I don’t remember, let me dig with you. But I thought I… I know I read it… whether it was today or probably it was yesterday. Oh, I think it was yesterday. But anyway, I will look for it while we’re talking, but I saw that. And I told my dad, I said, “I don’t want to alarm you, but they are, they have prescribed this.” And it’s understandable if her mood is very low right now, but that would also support the fragility of how fragile she is.
Patrik: She’s on quetiapine, which is not necessarily an antidepressant, to some-
Tom: Oh, it’s not? Okay.
Patrik: … but it’s… Just give me a second, just give me a second. It’s an antipsychotic medication. It can be used for depression. I have seen it being used in ICU, or of a combination of antidepressant, but also to deal with ICU psychosis. From what you are describing, I don’t think that your mom has ICU psychosis from what you are describing, but she, by the sounds of things she is depressed.
Patrik: As long as they’re not using it, you know… as long as they’re using it with… Since they’re using it carefully and not overdo it, and have a plan to wean it off, I’d say, “Why not?”
Tom: Mm. I see. Did you read that in today’s notes? Sorry, I’ve got to find where it said that.
Patrik: No, it was there yesterday and today. It’s on the third-last page. It’s on the third last page where the medications are listed.
Tom: Oh okay, thank you. And you said, oh, quetiapine, Seroquel.
Patrik: Seroquel, Seroquel. That’s it, that’s the brand name.
Tom: Oh yeah, okay.
Patrik: Yeah.
Tom: Yeah, that’s the name that she said, so that’s why I was like, “Wait, there’s some,” okay, they’ve been calling it Seroquel. Okay. Okay, that’s fine. All right, so other question though about something that I’m trying to pose when I requested this meeting, this call with you this morning, was right now we are looking into LTAC to just entertain it so we can strengthen our argument of all the reasons we don’t want to go there.
Tom: But it’s… And you have alluded to this in one of our previous conversations, I said, “What if we don’t want to go, what happens?”, and you said, “Well, they can’t make you go. They need your consent.” So, is it possible, let’s say my mom does need four months, or we need whatever, maybe longer, but let’s just say four months, and we decline LTAC that whole way, can she actually stay at this hospital in ICU all the way through?
Patrik: Yeah, that’s a great question. So, we have had many clients in similar situations. And most of the time, it really comes down to the advocacy and making that argument that LTACs are really terrible places, right? And the hospitals know that. And with another client, for example, where we had a similar situation in another hospital, right, it was a case of constantly threatening them with a lawyer, and also talking to the health insurance, because the health insurance might come to you one day and they might say, “Hey, she’s running out of entitlements for ICU.” You know?
Patrik: It’s… it’s a case of advocating and potentially doing a little bit of some threats here and there with a lawyer. But I would also say, let’s cross that bridge if it ever comes to that point.
Tom: Yeah.
Patrik: Right? I wouldn’t-
Ronald: No, and that’s totally reasonable. I just wanted to know, though, like if there is a threshold that doesn’t say, “She’s actually been in ICU seven months and we cannot allow this.” Like, at that point I’m like, “Okay.”
Patrik: Yeah.
Ronald: But I get what you’re saying, well let’s cross that if we get there.
Patrik: It’s-
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Ronald: But my other question… Oh, go ahead.
Patrik: No, no, no, that’s what I mean. It’s not there at the moment, let’s… as long as they let you do whatever, you know? As long as she can stay in the right place, and also more importantly, if the health insurance contacts you and says, “Hey, we’re running out of ICU entitlements,” then I would be worried. But at the moment you don’t hear, you haven’t heard anything from the health insurance, have you?
Ronald: No, but they’ve given us 60 days approval. So oh, and that’s actually one of the things that this second discharge planner, she’s… I said, “I appreciate how understanding you’re being and respectful of our wishes.” I said, “If you’re willing and able, do you have any advice about talking to her insurance company?” And then she said, “Well, all I can really just say is that she just… she has 60 days of proof. If she’s here after the 60 days, it will move to private pay, bill her directly, if insurance does not cover it.”
Ronald: And I said, “Oh, okay. Thank you.” And I said, “So, would you recommend that we reach out to her insurance and let them know our wishes?”
Patrik: How-
Ronald: She said… and she said, “Wait until you’re about 10 days shy of the allowed days.” And I was like, “Wow! Thank you-
Patrik: Yeah.
Ronald: …. for that advice.” And she kind of said it subtlety too, and don’t tell anyone I told you that.
Patrik: Yes. Yes. No, absolutely, absolutely. I would cross that bridge when the issue comes up. Okay?
Ronald: Yeah.
Patrik: The focus, the biggest focus at the moment I believe should be, does she make progress? That should be your biggest focus.
Ronald: Yeah. No, I understand. I guess I’m just trying to-
Patrik: Yeah. Look-
Ronald: … look at various scenarios.
Patrik: Of course.
Ronald: And that is very true, and we are going to continue to look at that. I can’t help though that whether, a couple scenarios. So please just entertain and don’t move for one more question about this scenario?
Patrik: Please, please, please.
Ronald: About her staying there, if, you know, we’re on day 36 or 37 right now, and she’s covered for 60 days.
Patrik: Yeah.
Tom: So, the discharge planner told us, “She’s approved for 60 ICU days.” And then that’s when she said, “The LTAC is still in ICU. So she’s going to be covered, they have to when they admit her, they have to do a full treatment plan and quote every, whatever. You’re going to get a clear idea of how much insurance will cover, but it’s likely majority or all of it.” But anyway, she said, “You have 60 ICU days covered.”
Tom: And so I said, “Okay, so on day 61, if the insurance tells us no, they’re not covering short-term ICU, you guys start billing my mom. So I was just, and I understand that maybe you’re not… maybe you don’t have accounts to pay,” but I said, “I can’t help but throw the question out there and just see if you have any context or any information.”
Tom: But while she is in the hospital, let’s say she is getting billed privately because insurance is no longer covering. Does she or my dad have to start making payments while she’s a patient there, or does that get addressed after discharge?
Patrik: That I wouldn’t know. I wouldn’t know. It probably depends very much on the rules of the hospital. That part I wouldn’t know.
Tom: Okay. Okay. I understand. Because I’m just, well I guess-
Patrik: I-
Tom: … I’m also thinking-
Patrik: … I tell you-
Tom: … regardless of payments, they can’t stop treatment, right?
Patrik: No, they can’t, no, no.
Ronald: Regardless of payment?
Patrik: They can’t stop treatment. And that’s… I would say, like, this lady told you, this is a bridge you can cross at day 50. If someone still needs ICU at day 60, there’s usually something else kicking in. That much I know. People can’t just send people out of ICU because they’re running out of entitlements, you know.
Ronald: Yeah. Okay. Okay. Got it, thank you. That answers all of my ruminating questions for now. Yeah, I’ll refine them even more by day 50 when I have to start formulating this argument more, but thank you. Got it.
Patrik: Yeah.
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Tom: I think that’s, I mean, that’s… I’m looking at my email I sent you. I think we covered it all, dad, are there other things you want to talk about, ask questions. No?
Ronald: It was interesting.
Tom: Okay.
Ronald: Thank you for all your expertise and your help on this scenario that we have to be going through.
Patrik: Yeah. No, you-
Ronald: I appreciate it very much, Patrik.
Patrik: You’re very welcome. And I’m so pleased to hear that there is progress. There is progress.
Ronald: Yeah. Hm, yeah.
Patrik: It’s baby steps, but that’s progress.
Ronald: Yeah. One day at a time.
Patrik: One day at a time.
Ronald: Wonderful. Well thank you so much for your time this morning, and we’ll be in touch, Patrik.
Patrik: Yeah, sure. Sure.
Ronald: We’ll very much-
Patrik: When you-
Ronald: … be continuing your services, so thank you.
Patrik: You’re very welcome. Have a wonderful morning. Thank you so much.
Ronald: Okay.
Tom: Bye-bye.
Ronald: Take good care.
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Patrik: Thank you. Bye.
Ronald: Bye. Bye-bye.
Patrik: Bye.
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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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!