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 Mother is in Critical Condition in the ICU. Why Does the ICU Team Aims for Limitation of Treatment for Her?
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 Stephanie as part of my 1:1 consulting and advocacy
service! Stephanie’s mother is a post cardiac arrest patient in the ICU and she is pondering whether if the decision of end of life or tracheostomy be enough to get her mother to the next step.
My Mother is in the ICU Due to Post Cardiac Arrest. Could The Next Crucial Step Be Either End-of-Life or Tracheostomy?
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PART 12
Stephanie: Yep.
Patrik: That would be their job now to maximise that. Not maximise. Once that’s optimised, then try and wake her up.
Stephanie: Mm-hmm (affirmative).
Patrik: Then remove the Phenobarbital, remove the Ativan, and try and wake her up and see what happens. That hasn’t happened.
Stephanie: No. They’re not even going there.
Patrik: No. That hasn’t happened.
Stephanie: They’re trying to get us to say forget it. What are you going to do for us? How are you going to … what are you going to do? How are you going to be able to help us on Monday to talk to them?
Patrik: Yeah. That’s exactly what I’ve pretty much just what I’ve asked you now. That’s what I will tell them. I’ll say, “Why haven’t you tried to wake her up?” And then the next argument is because they haven’t … Okay, the seizure management is clearly a medical issue.
Stephanie: Yes.
Patrik: Right? Because this is such a massive critical medical issue, how can she leave Intensive Care safely if there is no plan for seizure management?
Stephanie: Yeah.
Patrik: Right?
Stephanie: Exactly.
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Patrik: Exactly, right? Again, LTAC
Stephanie: I need to make them … Mm-hmm (affirmative).
Patrik: LTAC is for rehabilitation. Carmen is not at the point of rehabilitation, because there’s too many … Too many boxes haven’t been ticked
yet.
Stephanie: Right. Yeah. You want us to just accept that? Come on.
Patrik: Exactly. Exactly. That’s what I mean. If Carmen had been off the ventilator… No, no. If Carmen had been on the trach for two or
for three weeks and they had the seizures managed-
Stephanie: Under con-
Patrik: Under control. Then I’d say, okay, let’s look at the next step. But she’s not there yet.
Stephanie: Right.
Patrik: She’s not there yet. Correct me if I’m wrong. Up until Wednesday, there was no talk about end of life and there was no talk about DNR. Is that correct?
Stephanie: Miranda?
Miranda: They’ve been talking about that stuff from the beginning.
Patrik: From the beginning?
Miranda: They just really … The just would do the cold-
Stephanie: Her body.
Miranda: The cooling thing just to see if something would change, but-
Stephanie: Well, they’ve had to do the cooling. They had to do it because … to keep her brain from swelling, right?
Patrik: Yes. Sure. Absolutely.
Miranda: Oh.
Stephanie: Okay.
Miranda: I’m not sure.
Stephanie: Yeah. Mm-hmm (affirmative).
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Patrik: Yeah. They would have done the cooling-
Stephanie: It’s okay, Miranda.
Patrik: Because of brain swelling. To protect the brain.
Stephanie: Mm-hmm (affirmative). But Miranda said from the beginning, so what since from the beginning have they been mentioning this?
Miranda: They’ve been talking negative the whole time, like she’s-
Patrik: Right, right.
Miranda: Not going to make it through.
Patrik: Right. Okay. They’ve been negative-
Stephanie: Mm-hmm (affirmative).
Patrik: Okay. Keep in mind, though, Miranda, an ICU would never say to you, “Oh, yeah, now we’ve got this patient and now we’re going to do this, this, this, and this, and it will take three to four weeks, and then that patient will be out of Intensive Care alive.” They would never in a million years tell you that. They always have to protect their downside. By being negative, they’re protecting their downside.
Stephanie: I gotcha.
Patrik: Right? You would never hear from them, right?
Right, you will never hear from them. Right? That they will one hundred percent cure your mother. Never. Right?
Miranda: I’m listening.
Patrik: Right?
Stephanie: That’s their job.
Patrik: That’s their job. Their job is to protect their worst case scenario which is you potentially suing the hospital because you could say, “Oh you told me you going to cure your mother, cure my mother in three to four weeks and now she’s not progressing, I’m going to drag you to court”.
Right? So they’re protecting their downside. That’s all it is. It’s so important that you can read between the lines. Right? In this situation you need to read between the lines. Their negativity is nothing but them protecting their downside.
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Stephanie: And don’t let them put the pressure on us.
Patrik: No, no.
Stephanie: Don’t let, don’t let them make us nervous, you know because we have the power and we also, you know, we have you so we’re happy. Now-
Patrik: Yeah.
Stephanie: To help us through this process because on the other side, it makes you feel so alone and you feel inadequate in that you don’t know their, in a sense you don’t know their lingo, but because you’ve been in this field, you know what their pushing for.
Patrik: Absolutely.
Stephanie: And you also help us to see where we are, just one day at a time. We have to realise the magnitude of the envy that she has. You gotta get a chance to heal. If you broke a foot. My niece, Janet, she broke her toe and she’s walking’ around with a thing on her foot. She would like to say, “Okay it’s done”, but it takes time.
Patrik: Yes.
Stephanie: It’s a process. And we-
Patrik: Thank you. I was going to say that. A situation like that is a process, it’s not an event.
Stephanie: Right, right. It’s not an event yeah.
Patrik: It’s a process.
Stephanie: It’s one step along the way. Keep going on the time line. Keep going, keep going, keep going. You know so we can, yeah part of the healing process.
Patrik: If you’re going through hell, keep going.
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Stephanie: Amen. Don’t stop, keep moving.
Patrik: Look, it’s a nightmare. I get it. It’s the worst possible nightmare. I get it
Stephanie: Right.
Patrik: Right?
Stephanie: If I’m going through the fire, you see Arnold Schwarzenegger or whoever it is with all of these, you don’t stop in the middle of the fire baby, you keep running.
Patrik: No. And because they have been so negative, you know they’ll say, “End of life. We don’t know”, but there is plenty of time for that. Plenty of time for that.
Stephanie: Yes. You come with your paper and pad, I know you will. We’re gonna’ say this to you, we’re gonna do this again. We’re gonna do this all over again tomorrow night since she’s sick. What time you think is a good time Miranda for him to come in on it? You think we should get in, get settled, start eating and then sit down and have the meeting or have the meeting first and then eat or what?
Are you still there Miranda?
Miranda: Yup.
Stephanie: Okay.
Miranda: Just trying to process everything.
Stephanie: I know baby. You doin’ good. You doin’ good Miranda. You doin’ good. Me and the storm, we’re dancin’ with you. You know, in here.
What you want Amy? Amy said, “Woof woof Miranda, you’re gonna be okay”. Wait, wait, wait. Go to bed, go to bed. So tomorrow will come, six. What are you thinking Miranda? You might be feeling more like, after the meeting we might be feeling more like eating or? I think we should get the meeting in and get it over with. What do you think Miranda?
Miranda: I’m not sure.
Stephanie: Okay. When everybody gets there right?
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Patrik: Look, I can be flexible. Why don’t you, I mean I don’t need to know right now, I can be flexible.
Stephanie: Okay. We get there and we call you.
Patrik: That’s right. Why don’t you do that? You get there, you know it would be good if you can let me know half hour before, but why don’t you get there.
Stephanie: Oh yeah, I will. I definitely will do that. I’ll definitely give you some notice. So that’s what I’ll do, no later than 7, because she’s about to go home and go to work the next day and stuff like that.
Patrik: Right, right, yeah.
Stephanie: So I’m gonna try and get it done. I don’t know, we’ll figure it out. We’ll cross that bridge, I’ll cross that bridge when I can figure it out. Depending on who gets there? I told everybody to be there at 6. So Miranda, don’t tell them I’m thinking 6:30, just stick it with the 6. You too if you can and that way we can-
Patrik: And I’ll tell you another thing. Look Miranda, I can hear your frustration. Right? I’ve never met you, I can’t even see you, but I can hear your level of frustration. Because I’m talking to so many people in similar situations right? I totally appreciate your level of frustration. For your mother’s sake, stay positive no matter the outcome and I know that’s easier said than done. I know it’s much easier said than done.
Right?
But no matter the outcome, do yourself a favour and stay positive. Even if the outcome is not what you want, you are still doing yourself and your mother and your family a favour by staying positive.
Stephanie: It’s okay Mimi. So you said, you was saying something about your aunt, Miranda you were telling him. Okay Miranda.
Miranda: I was telling him what? About what? Regarding what?
Stephanie: You were getting ready to say, “So my aunt well something” I think you were going to say. Something about call him or I don’t know what you were thinking. You know about tomorrow or something you were about to say something when he was telling you, “Whatever you do, stay positive for your mother’s sake”.
Patrik: And for your own sake.
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Stephanie: And for your own. How ’bout that, how ’bout that, how ’bout that? It’s okay honey, it’s okay. And see that’s what God does, He gives us what we need when we need it and when we don’t have the resources we need, He shows us another path to walk down and try to get assistance. And that’s why you Miranda, looked for Mr. Patrik Hutzel up, not me. I didn’t know anything about it and then when I saw the logic in it, that’s when I said,
“We can only go so far”, but we need some assistance in there. So we’ll talk about that tomorrow. Patrik as to how I’m gonna introduce you.
Patrik: Yeah.
Stephanie: We have a couple of questions, how ’bout that?
Patrik: Yes.
Stephanie: This is a very good friend of ours who we have been keeping informed of Carmen’s programme and we have a few questions, you know…
Miranda, we get to the point. Yes, we want to do the trach. And I can’t imagine why it wouldn’t be, but that’ll be up to us to sit down and come to a conclusion. But I’m pretty sure that’s the direction you’re moving. You get a trach and once we get the trach, we just gonna have them ask you, ask all these questions that you said about her care basically. I’ve been informed about her care and I just have a few, however you do it Patrik, do your
thing.
Patrik: Yeah, so look there’s a number of ways how I can go about it. You see because I’m one layer in moved. Depending on the situation, I can have that confrontation with them so you don’t have to have it.
Stephanie: That’s what I want, that’s what I want, I don’t wanna say nothin’. Right.
Patrik: Right, I get it. You want to keep the peace as much as possible right? I have no interest in ruffling any feathers, I have no interest in putting in any oil in the fire, no interest in that. However, the situation might need a different approach. Right? And I’m very happy to be the bad guy if you will, so you don’t have to confront them because you are there in person, whereas I’m on the phone, I can be a little bit pushy. Right? I
can tell them, look you only want the ICU bed, that’s the only concern, you’re not worried about any clinical issues here and you want the ICU bed. Right?
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Stephanie: Right and we sit back. We just sit back and don’t say nothin’. Yeah, got it.
Patrik: That’s right. You want to keep the peace as much as possible. Right?
Stephanie: I told Miranda we were concerned about that, yes.
So we appreciate what you doin’, we brought her up, we appreciate what you’re doing, you know blah blah blah.
Patrik: That’s right. So you know, so I can be the bad guy if you will, so you can keep the peace there as much as possible.
Stephanie: Exactly, ’cause my brother said, “We don’t want to be antagonistic”. We should be taking care of our loved ones.
Patrik: Correct. At the same time, they already probably knowing that you’re not pushovers. They probably already know that.
Stephanie: Oh yeah, yeah they do. Anybody else would’ve just said, “Okay, all right, we’ll let him go”. You know? So nope, I’m sorry. No.
Miranda I’m gonna, do you have any other questions Miranda? Anything else you want to say at all until we meet tomorrow? Okay.
Miranda: So not tomorrow, Monday, Mr. Patrik is going to be somewhat like a mediator for the family?
Patrik: Monday, ma’am Monday 11 o’clock isn’t it? 11 AM.
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Stephanie: Yup, 11 AM. We’re gonna come in, we’ll probably have you on the phone before we get there ahead of time.
Patrik: Yup, that’s fine.
Stephanie: 10:30, 10:30 we’ll start convening, getting together, you know and bringing it to the floor. I did get Zoom. I did download Zoom, Patrik.
Patrik: Look, it’s fine. I, we can-
Stephanie: But you don’t want them to see you right? Probably better to just have a voice.
Patrik: No, not necessarily.-
Stephanie: It’s better to have a voice.
Patrik: Yes. I had the Zoom. The Zoom was more like when we had this conference call on Wednesday, I just thought Zoom would be good, but that’s all right.
Stephanie: We’ll go with the phone, okay?
Patrik: Yes, phone is fine. Phone is fine.
Stephanie: Yeah, that’s what we’ll do, that’s what we’ll do. And I’ll put you on speaker and hopefully they can hear you. It won’t be any feedback on the speaker, but we’ll take our time, we’ll see what happens and they’ll hear what-
Patrik: Or what we could do potentially is phone is fine. In terms of especially when it comes to a good connection, Skype or WhatsApp might be better, because usually a better, Skype or WhatsApp are usually better sound.
Stephanie: Right. Well I’m gonna ask my brother, George then. We’ll talk to him about that tomorrow. He has the Iphone.
Patrik: Right.
Stephanie: You know, and his Skype. You said Skype, but if you do Skype then they gonna’ see you.
Patrik: No, no. Again, Skype you can do faceless.
Stephanie: Okay, yes you can. But you can have the sound so they can hear you?
Patrik: Absolutely.
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Stephanie: Okay, all right. I will discuss that tomorrow and Miranda what was your last question? Did you have any more questions Miranda? About the meeting you said?
Miranda: It’s like, it’s just difficult decision.
Stephanie: We’ll come together tomorrow, yeah. Difficult decision to let her go now or whether to get the trach. Is that what you’re saying?
Miranda: It’s just that she will be probably in the ICU for a little longer. Watching.
Patrik: Are they doing any physical therapy at the moment?
Stephanie: They came, I think they came in, but you mean like giving her massages and stuff like that? No, they don’t need to massage her right now do they?
Patrik: Well I’ll tell you what. In order to get somebody off the ventilator, they should do some chest physio.
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Stephanie: Yes, okay. Yeah, we gonna’ write all of this down.
Patrik: And also.
Stephanie: And you can ask them too at the meeting.
Patrik: And also, in order to get somebody, you know to get them out of an induced coma, again, you wanna stimulate them. It’s a tricky one with Carmen because you don’t want to stimulate too much because.
Stephanie: Right, because of the heart.
The 1:1 consulting session will continue in next week’s episode.
