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 Can My Brother Get Out of ICU Alive Whilst ICU Doctor Says He Will Have No Quality of Life?
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 has a tracheostomy in the ICU and Megan is asking why the ICU team says her brother will not survive when he managed to be off the ventilator for 8 hours.
Why Does the ICU team Says my Brother Will Not Survive When He Managed to Be Off the Ventilator for 8 hours?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Megan here.”
Megan: Yes. What is it and who are you, Mr. Doctor, to decide what Ryan thinks is quality?
Patrik: Correct.
Megan: It’s very subjective.
Patrik: Very subjective. And what makes qualified to say, he wants to get out of ICU alive. The reality is, that most ICU professions, what I’m almost bound to say. All ICU professionals have no idea of what a patient’s life looks like, six months after ICU. Six weeks, even six days after ICU, right? It’s a missing link, it’s a blind spot, right? For all ICU professionals, including myself. I have no idea what a patient’s life looks like after ICU. I have no idea.
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Megan: You have no idea. I do know Patrik, what an interesting point, but wouldn’t that be a wonderful study for all ICU professionals.
Patrik: Very much so.
Megan: You could almost go on a two-day conference, where many, many families and patients tell their stories and show the pictures. Because I was watching your video and I believe that getting Ryan home, would transform him totally. And he would be immediately smiling and smiling and immediately feeling hopeful. And then, if he was able to eat, obviously very, very good organic home-cooked food. And lots of cups of tea and all the things he loves, I think it would change him. Obviously, he can’t drink cups of tea at the moment, but do you know what I mean? Once he gets home and he can have his home comforts, I think it would transform him. And I think he’d be so much stronger as well, mentally.
Patrik: There’s no doubt about that. That’s the only insights that I do have because we also own and operate an intensive care home nursing service. When I say I don’t know what a patient’s life looks like, that’s not entirely accurate. I do, but for a very specific patient group, right? Not for the majority, right? And that is again, it’s another line of argument, that you don’t know. Or they don’t know what his life looks like if he gets out of ICU.
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Megan: And the other thing, Patrik, is they don’t know what his life was like before, either. They don’t know what his expectations are, or what his baseline is, in that sense. Maybe with his mental health issues, his life hasn’t perhaps been as wonderful as theirs. Yes, fair enough, but he’s still happy with it. My brother is very creative, he’s very artistic. I work with, as you know, with the stocks and shares, but I’m writing a book, a children’s book about a ferret. And Ryan is the artistic director of my book because he’s so talented artistically. So we do this together and he can sell his paintings and things like that. He’s tremendously talented. So it may not be to them the most, he’s not a doctor, or whatever, but he has a life and for him, it’s a very happy life. And they may say, oh well, he’s got mental health issues there, for… So what?
Patrik: So what? This is another point. Now, talking about mental health issues, does he have a GP? Does he have somebody just specifically for his mental health issues?
Megan: Yes.
Patrik: Right. Is that person in the loop?
Megan: Yes, the CPN is. And by a sheer strange coincidence, the daughter of Ryan’s previous community psychiatrist nurse, is an ICU nurse there in that unit. But luckily she’s on the bank and she hasn’t been in. And I say luckily because I don’t want them colluding, yeah.
Patrik: Yeah. So with that person, is that a mental health doctor? Or is there a psychiatrist somewhere in the picture?
Megan: We’ve got a psychiatrist and we’ve got the CPN, the community psychiatric nurse. She has much more day to day, not day to day, month to month, well occasional contact with Ryan. And then he’s got a psychiatrist. I don’t know how…
Patrik: I would talk to them if I was you.
Megan: Okay.
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Patrik: Just get them fully informed. Just like the oncologist might have a different point of view, the psychiatrist will have a different point of view as well. And the psychiatrist, much like yourself, will know Ryan from a different level. Okay, so I’ll give you this picture from having nursed many patients in ICU. You nurse a patient who is on a ventilator, who is in a coma. Now that person probably, up until 48 hours before, lived a “normal life”. And all of a sudden they’re in ICU, their life is complete upside down. All of a sudden they’re in diagnosis in an ICU, but nobody looks like, oh, this person two days ago was riding a bike. So it’s really important that the ICU people only look like, oh yeah, your brother is on a ventilator, he’s got a tracheostomy in. He’s a long-term patient in ICU, that’s how he would be classified. Nobody’s looking at, oh yeah, Ryan was painting pictures and he was writing books. That is important to start planting that seed.
Megan: Yes. I mentioned to just one of them about the book and I really regret, I didn’t mention it more at the beginning. Like you’ve got to get Ryan well, he’s is key to my book. I’m making a bit of a humorous comment there, but I should have emphasized this a bit more, I think. And I didn’t and I regret that and so now…
Patrik: No It’s not too late.
Megan: No, it’s not too late.
Patrik: It’s just starting to talk about, his passion and what he would like to go back to. And it’s really a matter of, on the one hand, you can be more forceful, which you probably need to. But on the other hand, it’s also bringing in probably that softer aspect. About, well, this is my brother, right? And this is what he would like to do again. No matter what you tell him, or me.
Megan: Yes. And he also writes songs, plays the guitar, looks after his neighbor. He’s a super creative sort of guy. So yes and that’s what he’d like to go back to. Yes. And I’ve not really pushed that and I think it’s time I pushed that a bit more about his life. Yes.
Patrik: Because at the moment, it’s all about his death. I’m exaggerating, but you know what I’m saying.
Megan: I do indeed.
Patrik: And this is where there is such a gap, in between how families perceive such a situation and how the ICU perceive such a situation, right? Their perception is, oh yeah, he’s on a ventilator, he won’t have any quality of life. He’s got cancer. But that’s not what you see.
Megan: No, it’s not what I see.
Patrik: Of course no, because you don’t know your brother in a situation like that. Whereas ICU professionals in their work, all they know is, oh yeah, this is what a situation like that looks like. That’s all they know.
Megan: Yes. They just put him into various categories. He ticks that box, so. Yes. And the rest of it is irrelevant really. But I need to start to emphasize it I think.
Patrik: You need to start to emphasize the hard facts, in terms of, the DNR. And why would you say he’s not surviving if he can manage to be off the ventilator for at least eight hours. You need to emphasize that. You need to emphasize, have you asked Ryan? You need to emphasize, stop talking about that he won’t make it, in front of him. And keep telling him, yes, you will make it if we keep working on it. And then bring in that softer side of look, this is what Ryan was like, up until a few weeks ago. And he has a lot to live for.
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Megan: Yes. Because, I think that’s all missing, they’re not making that connection. They’re not even, well they didn’t ask. They didn’t really ask, they weren’t there. They’re seeing him as one dimensional, really.
Patrik: Very much so and that is why you may want to get that psychiatrist in. And it could just be for a visit, I don’t know.
Megan: Yes, even the CPN, the nurse. She knows what’s happening and she’s been ringing me to find out how Ryan. So she could be I think, perhaps an even better person, because she knows him in his home environment. Whereas the psychiatrist does not. I don’t know if she’d have as much weight with them, but…
Patrik: It doesn’t matter. I think all you’re looking for at the moment, it’s all about getting support. Showing them, look, I’m not giving up here.
Megan: No. Yes. I rang three times this morning and I was, is he in the chair? I’m not giving up, I don’t care what you say. We’re giving up on him. I’m not giving up on him, because that’s what they want me to do. I think they want me to give up and go away quietly. And I’m not going to do it. Because with the conversation yesterday, he was really playing the game of, it was to demoralize me. And possibly who knows, to demoralize Ryan, but certainly to totally demoralize and demolish me really. To take away any hope, that’s what he did yesterday.
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Patrik: Yes, very much so.
Megan: But to tell you, Patrik, very quickly, what they tell me this morning, which is slightly more hopeful. I rang three times and eventually got through and I got the same nurse that was on yesterday. So she said, we have a plan, another plan. Now she said they’ve put in another line, with an anesthetist, probably like a track or something?
Patrik: Another line. And the central line?
Megan: I’ve written it down and I cannot find where I wrote it.
Patrik: A track?
Megan: A track lines.
Patrik: A track line? Okay, for what? A PICC line?
Megan: She said it’s so that if the patient is sleepy, they don’t have to keep waking him up to do things to him. And I said, that doesn’t sound good, that means you giving upon him. And she said, no.
Patrik: Hang on. Okay. Is that to give medications?
Megan: I think so.
Patrik: Okay. Well, then it’s most likely either a central line…
Megan: Yes?
Patrik: Or a PICC line.
Megan: Yes! Yes!
Patrik: PICC line, yes, yes. PICC line, yes, yes, yes.
Megan: Yes.
Patrik: Okay. Okay. Okay.
Megan: So, because we were writing.
Patrik: Yes. No, no, no.
Megan: Sorry.
Patrik: Okay. No, no, not at all. So, at the moment, how is he getting his medications?
Megan: At the moment, they come and they put it through his, is it NG tube?
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Patrik: Okay. So he doesn’t have any IV access. Do you know what I mean by IV access?
Megan: Yes, intravenous. Yes, I think he does. He’s got some things and yes, he’s got a lot of them. Yes. I think…no, no. I think yes. I’m sorry it doesn’t go down the NG. It goes in the cannula.
Patrik: Okay.
Megan: Yes, is that right?
Patrik: Well I wonder after all this time, why they can’t go in his nasogastric tube. I wonder why.
Megan: Yes.
Patrik: And the reason for that is you want to minimize IV as much as you can because the infection risk is much bigger. It’s huge.
Megan: Yes, yes.
Patrik: Okay. So after…okay. So I’d say nine times out of ten when somebody’s been in ICU for so long, they often don’t have any more IV access and everything is going-
Megan: Yeah.
Patrik: That’s right. That’s right. I would be curious, why are they still giving IV drugs? It makes sense that if they are giving IV drugs that they put in a PICC line. It does make sense, probably less infection risk if he still has a central line. A PICC line is also long-term. However, if the goal is to give him IV drugs to make him more sleepy and potentially, what I refer to as potentially euthanize him, that would be the wrong approach, long goal. So, I think you really want to dig deep into that.
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Megan: Yes.
Patrik: Right.
Megan: I mean so they could be giving him those drugs.
Patrik: Okay.
Megan: Alright.
Patrik: I tell you what sometimes happens, right? So they might say, “Oh yeah, we’ll take Ryan off the ventilator because he’s not going to survive,” but they also know that this would be a horrible death. Right? In order to sort of hasten the death or to make it more comfortable, they would give him IV drugs like morphine, midazolam, fentanyl.
Megan: Yes, yes.
Patrik: That’s in my mind…look, two things to that. Number one, unfortunately, this is common practice in ICU and number two, in my mind that is euthanasia, but nobody’s actually calling it euthanasia.
Megan: Yes.
Patrik: Right?
Megan: Yes.
Patrik: So, that is common practice. I would be surprised if they want to really rush into that, but you can’t rule it out either.
Megan: I know. I think I need to start trying to fill him full of all these drugs that you mentioned at this point. It would seem extraordinary.
Patrik: It would be, it would be. It wouldn’t match. Even though they have devious plans.
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Megan: Yes, they certainly do.
Patrik: Right.
Megan: Very devious.
Patrik: It wouldn’t make sense.
Megan: Not really, because they did that with my mother, but that when she really was-
Patrik: Yeah.
Megan: …going
Patrik: Yes, yes. That’s right. Then, sometimes those situations have their time and their place, but yes it’s, you know, not if he stays off the ventilator for at least eight hours.
Megan: No, it seems to me…and also, all the things are good. The saturation…
Patrik: Yes.
Megan: Everything’s good, blood pressure, all of those sort of vital signs are very good.
Patrik: Absolutely.
Megan: There’s nothing there that certainly yesterday except for the weakness.
Patrik: Yes.
Megan: He’ll start using it. I think if we thought that Patrik, is if they were doing that, would there be any way that I could know they were doing that?
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Patrik: Yes, you could. Number one, you definitely want to know what they’re doing, and then number two, you would see your brother would change completely. Right?
Megan: Okay.
Patrik: But also, if it does happen, they would really sit down with you. I’ve seen anything, I have seen where people even sit down and then all of a sudden they realize, oh my, my brother, my mom, whatever, is dying and I didn’t even know it was happening. I’ve seen that.
Megan: They told me. With me, they told me.
Patrik: Yeah.
Megan: Yes, they told me because she’s going and…
Patrik: Right, right. So I think, given that your brother is way more awake than any other patients, by the sounds of things, I’d say it’s not happening, but you know by now you’ve got to watch them.
Megan: You’ve got to watch him like a hawk.
Patrik: Yes.
Megan: Like a hawk.
Patrik: Yes.
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Megan: Yes. So, do you think the PICC line is perhaps not as sinister? I mean they told me they didn’t have to tell me that they’d put it. I mean they could have put it on and I wouldn’t know, I presume.
Patrik: Yes, but somebody needs to give consent.
Megan: Oh.
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
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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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