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
Is it Possible that they Inserted Central Line to my Brother in ICU to Facilitate their Devious Plans?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Megan, as part of my 1:1 consulting and advocacy service! Megan’s brother is with cancer and mental illness in ICU and Megan is asking, is it true that long- term ICU management is falling down.
My Brother is with Chronic Illness in ICU. Is it True that Long-Term ICU Management is Falling Down?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Megan here.”
Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Patrik: Yes. Yes.
Megan: Do you think they’re also thinking of the cost?
Patrik: Oh, totally, totally. It’s all about the cost. It’s all about the cost and it’s all about not wanting to pay for any potential follow-on services. Now you look at this whole debate…I don’t know whether we’ve spoken about this last time…Mike T.?
Megan: Mike T.
Patrik: Right? Or last year, do you remember?
Megan: Yes, totally.
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Patrik: I believe, this whole discussion is all about, okay, well those kids could have been saved but then what, and who’s going to pay for it? You know? So the whole discussion is really a discussion around money.
Megan: Yes. Would you think that Ryan, at this point presents a very expensive proposition for them?
Patrik: Well yes, because number one, they don’t know how long it’s going to take, right? But I don’t think it’s so much about the money then.
Megan: Money?
Patrik: Yes, it’s definitely money, but also, they can see that if he was going to survive, they have no idea what it looks like, and then they don’t know where to next.
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Megan: No. That’s the thing.
Patrik: That’s the thing.
Megan: Where to…that’s the thing.
Patrik: So, that’s where the sort of modern healthcare I believe is really falling down. Chronic-
Megan: Disease?
Patrik: Chronic illness management like long-term ICU stay management.
Megan: There’s nothing really, is there?
Patrik: Nothing there. It’s not anything there.
Megan: Nothing there. No, because when my mom came home from…She fell and they had to put her leg in a plaster because they said that she couldn’t take the anesthetic and you hadn’t got good enough circulation. So they put her leg in plaster and I nursed her at home. I nursed my mom.
Patrik: Alright.
Megan: With the help of some fairly inexperienced carers, she had a pressure bed. You know, the thing I had a hoist, I mean there was nothing really apart from a nursing home where they wouldn’t have been able to give her that kind of one-on-one nursing. So, there was nothing, just such a huge gap. So it was me on what.
Patrik: Yes, Exactly, exactly, and you can see this in other countries too, when they’re falling down, all the resources are in ICU or in the high acuity areas and then what’s next.
Megan: What’s next? And there is a void, an actual gaping void. And you know, even going to the ward is not really…They do their absolute best on those wards, but they’re so understaffed and it’s very much, it’s hit and miss, really a bit of hit and miss. Still nice. Don’t get me wrong.
Patrik: Yes, sure.
Megan: I thought they did wondrously but it’s not a solution, is it?
Patrik: No, not a front of solutions.
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Megan: I mean my mom deteriorated very badly on the ward, bedsores and she got terrible, terrible. She got gangrene in the heel of her foot.
Patrik: Sure, sure.
Megan: My view is that’s probably what…can you get septicemia from a pressure sore?
Patrik: Pressure sore?
Megan: For when you have gangrene. It literally dies.
Patrik: Yes, oh yes. Yes, yes. Oh, yes, you definitely can.
Megan: Yes. I thought so and that’s why they were unable to control the infection in the ICU for my mom but that’s a separate thing. But, but yes, there was really nowhere for her to go-
Patrik: No.
Megan: -to receive the kind of nursing that she needed-
Patrik: No.
Megan: -in that kind of critical situation that she was still in.
Patrik: That’s right, and then it sounds like your mom then at some point went back to ICU.
Megan: Yes. Yes she was only in the ITU once. She was in the ward where it was a disaster, but luckily they let me because they could see, that I was quite capable, so they let me come and do a lot of care for her. Well of course, because it saved them doing it. So I used to come in early and do all her care for her.
Patrik: Yeah.
Megan: And work with them to look after her. And then she came home. But she came home with a gaping wound on her leg, Patrik about eight inches long, and they cut a hole in the port-a-cath, so we managed to get that with good nutrition and good care and good everything, that
healed at home.
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Patrik: Wow. That’s great.
Megan: It healed and her back healed at home as well. So that was good. But, you know, there was nowhere for her to go and I think she would have died much sooner if she hadn’t come home. She just wouldn’t have made it.
Patrik: Yes.
Megan: And I think that is where what we’re looking at with Ryan as well, to some degree.
Patrik: Well, well, maybe. It’s too early on, I think it’s too early to say.
Megan: Well no, what I meant well, they’re all thinking, where’s he going to go?
Patrik: Yes, yes, absolutely. That’s what they’re thinking.
Megan: That’s what they’re thinking.
Patrik: Right. And also, there’s often this…you know, a lot of health professionals they say, or especially ICU professionals, they say, “Oh, well I wouldn’t want to live like that or I wouldn’t want to do this and I wouldn’t want to do that.” And they’re entitled to their opinion of course. But again, it’s not for them, I believe, too-
Megan: Not really, Patrik. Who are they, Patrik? Who are they to say to make that judgment?
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Patrik: They’re not.
Megan: They’re not. And you know, there’s all this business about everybody’s equal, equality, equality and I felt like saying to them, come on then let’s have some equality.
Patrik: Yes.
Megan: That means if you believe in all this equality, that’s obviously a matter of opinion, but if you believe in it Ryan is as good as the next person, mental health issues or not. I happen to be he’s not only just as good. For me, he’s better because he’s my brother.
Patrik: Absolutely.
Megan: So they can’t really just wait. They’re raising him up, obviously, because of the cancer and the mental health, but mostly cancer. Because of the, what kind of work I do, I’d be perfectly happy to nurse him and look after him at home. Of course. But that’s neither here nor there, but I would be. If you don’t have somebody where do you go?
Patrik: That’s exactly right. Where do you go?
Megan: Where do you go? Patrik, you know that nothing happens in this country, absolutely nothing.
Patrik: No.
Megan: I don’t think they’re good anywhere really. I mean.
Megan: You don’t?
Patrik: No. Look, I know, that I have a great deal of experience. I mean, I know my, my grandmother 20 years ago was in a nursing home for the last six months of her life.
Megan: Right.
Patrik: I don’t think that was too bad at the time.
Megan: No.
Patrik: But, again, I think most of them, I mean you just think about it. You just think no, that’s not the why I want to spend the rest days of my life.
Megan: No, no, no. Patrik no, no. Absolutely. It’s something I always promised myself I didn’t want either of my parents in a nursing home.
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Patrik: Right.
Megan: I just didn’t want it because I’ve seen what goes on with my godmother and so on. Not good.
Patrik: No.
Megan: Not good.
Patrik: No.
Megan: So, Patrik, okay, I’ll go…so, what is the whole plan? Do you think at some point you could speak to them?
Patrik: Oh, absolutely. Absolutely.
Megan: Yes.
Patrik: When you’re going in there, just give me a call if you want to, and then I can talk to them.
Megan: Yes.
Patrik: Right.
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Patrik: But let me ask you another question. When I do call…
Megan: Yes?
Patrik: Would that call go to the bedside, so his cell phone is…There must be a phone at the bedside.
Megan: There isn’t really, but there are…
Patrik: Your phone at the bedside.
Megan: There isn’t really-
Patrik: Oh.
Megan: But there was a thought of that … No, there isn’t. There’s a phone that covers about four beds.
Patrik: Okay.
Megan: I’ll tell you what I’ll do, Patrik, why don’t I send you an email?
Patrik: Absolutely.
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Megan: That’s a good one. I’ll put the voice in the email and then maybe you could say, and Megan has been keeping me closely informed of what’s going on but she was very disturbed.
Patrik: Absolutely.
Megan: With recent news from the doctor. Okay. So shall I put that in an email?
Patrik: Yes, please. That would be great. And I’ll send you an email myself just summarizing a little bit what we talked about.
Megan: Lovely. And do you think Patrik, today is a good day to talk to them or to wait for a change of doctor tomorrow?
Patrik: Is there going to be a change of doctors tomorrow?
Megan: Yes. Tomorrow. Female is coming.
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Patrik: Friday is the change of doctors?
Megan: Yes.
Patrik: Okay.
Megan: That’s what he told me.
Kind Regards
