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 the ICU For a Post-Cardiac Arrest Care. Why Does the ICU Team Pushing Her Towards End of Life?
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 had a Cardiac Arrest and now is in the ICU post CPR, and is asking if the seizures and Paroxysmal Sympathetic Hyperactivity (neuro storms) a sign of deteriorating condition.
My Mother is in the ICU for a Post- Cardiac Arrest Care and the ICU Team Always Talks About End of life. Why Aren’t They Maximizing Her Chance of Survival?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Stephanie here.”
PART 1
PART 2
PART 3
PART 4
PART 5
PART 6
PART 7
Patrik: Right, okay.
Stephanie: And then there’s the senior ICU doctor, so he’s a consultant too. And I thought no, he’s coming in, he’s pushing for us to … If this was my mother blah blah blah … I would not … I could tell you … I signed up for this to take care of people … I sincerely want to take care of people. He tried to convince us that he cares about Carmen.
Patrik: So, here is and I can’t remember, maybe I am repeating myself, I can’t remember if I mentioned that on Wednesday.
Stephanie: Go ahead, keep going. Repeat yourself if you have to.
Patrik: So if the doctor saying if this was my mother, I would do this and I would do that and you know … so here is where I see your professionals are falling short I believe and that’s including myself to a degree. I feel professionals have no idea. Okay, let’s say that Carmen gets out of ICU in three weeks’ time alive.
ICU’s have no idea what Carmen’s life looks like three days after ICU, three weeks after ICU, they have no idea. They have absolutely no idea right?
I also believe if somebody is telling you, Oh I wouldn’t do that if this was my mother, or this was my family member, I do believe they also haven’t faced, either their own mortality or their own issue they potentially have with disability or whatever you want to call it.
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Stephanie: She definitely will not be 100% but that’s okay. We wanna give her a chance.
Patrik: That’s right.
Stephanie: Because there are people who have been to this place and have come out actually 100%. I’m not saying … we don’t know … The bottom line is we don’t know.
Patrik: We don’t know. That’s exactly right.
Stephanie: But are we willing to give Carmen a chance?
Patrik: That’s exactly right, that’s all you want, that’s all you want.
Stephanie: I wanna chance. That’s what we want.
Patrik: All you want is a chance. And the other thing that I always say is Stephanie, what’s the hurry about end of life? What’s the rush? People die, that’s the reality. We all die, that’s the
reality. But what’s the hurry?
So now all of a sudden there seems to be a hurry because they are realising you want the trach but you don’t want LTAC. So now all of a sudden they throw in end of life into the mix.
Stephanie: There you go. And that’s what my sister said. At one moment they are saying her brain is fine and now you saying her brain is poor.
Patrik: Yes. So what’s the neurologist … is the neurologist pushy as well?
Stephanie: He’s not … he’s saying what he wants to make appear as facts. He was giving the facts and the doctor, Doctor Philipps is pushing. And I told him the day that we had the meeting, the doctor that was there in his place, I said I was appalled at how he was at the meeting.
I said he went around the table, my family was there. There was the Intensivist, the Neurologist, there was a Social Worker and her trainee, and then there was, what was she, she was a P.A. what do you call them? Almost a doctor. What’s a PA??
Patrik: I wouldn’t-
Stephanie: Not quite a doctor. So she had a lot to say, she was all, she was doing the talking about everything else and she interject about that and said well, that’s not where we moving. We want Carmen to have a chance.
And then the Doctor Stevens, I had gotten his name prior to us going in there, and he came in. He said absolutely nothing, not Jack the Ripper and while we was talking about Carmen he’s looking on his Apple watch the whole time. And I was almost speaking and I looked at him, and I just was silent for a minute and my eyes went down to his watch and when he left the room he didn’t even excuse himself. And I told Doctor Stevens, that was grievous, that tells me that
he couldn’t care less about my mother.
Patrik: Yeah, yeah.
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Stephanie: He never said not one word. He’s the doctor. He should at least give some type of report besides what the neurologist says you know? And I told him and he says well I apologise for him, this was Doctor Philipps, the one who has been with her for a while, he says I apologise. We said no, that shouldn’t have been.
Then he justified a little by saying that we doctors do take rounds and he was … I believe they got him ready because he has a personality where he prioritize. And they had him, he’s the closer. Do you understand what I’m saying?
Patrik: Sure right, he is used to those difficult situations. He’s the bulldozer.
Stephanie: Exactly. Are you going to be able give us information about the brain storm? I wanna bring Miranda in?
Patrik: Yeah absolutely, I can talk about the neuro storm. You tell me when you want us to dial Miranda in, or you tell me.
Stephanie: I think it’s probably a good time. I will tell you this, her favourite … actually you know what she said … she said my brain, my brain feels strange, but I think it’s because she getting terminology. Once you realise what your options are Miranda you’re gonna feel better. You’re gonna have whatever that line is that you say, you’re going to have peace of mind, or calm or whatever you tell her. You don’t know what you don’t
know.
Patrik: That’s exactly right. And you know what I can see with this situation is I have seen so many outcomes, there is no one size fits all and that’s what they are always trying to do. They are always trying to paint it as if one size fits all.
Stephanie: That’s what she needs to know. She says I can’t take it. She says I can’t take this. But she’s always up there now and it’s good and she’s handling herself better than she thinks she is. That’s why we are protecting her, with her and we go to this meeting this evening I want her to feel more confident. I want her to be stronger. As a result of you, using your expertise to help her where she needs to helped and there will be where
she can help the rest of the family to see, what most of the family want because my brother was there-
What most of the family wants … because if my brother was there, he took a show of hands? They must have a meeting after they left in their conference room. And if he says, by a show of hands, people want her … Okay, who wants her to have a DNR, and who does not? Three of us … Yeah, they’re talking about that too.
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Patrik: No. That is good information. Again, this is all new, because when we spoke on Wednesday, there was no talk about end of life. There was no talk about DNR. That is all new.
Stephanie: Yeah. Because we hadn’t had the meeting yet, and they wanted DNR. Or DNR, they didn’t say DNR. But they definitely want to intubate they know that. We just want to make her comfortable.
Patrik: Yeah. But you or Miranda, you have not agreed to DNR?
Stephanie: No, she’s on full code. She’s still on full code. We haven’t changed anything. We were trying to … those of us who were okay for DNR, we were trying to convince, to let them know … My brother was an EMS, George. He was an EMS. More my older sisters were like, I don’t want her to get ribs broken. He said, what’s a couple of broken ribs? Ribs can heal. What’s a couple of broken ribs to save your life?
Patrik: You see, again, let’s just say, God forbid, worst-case scenario another cardiac arrest they do CPR, and again, she would survive. That’s their worst-case scenario, because as I’ve said on Wednesday, their worst-case scenario is to look after a patient indefinitely with an
uncertain outcome.
Stephanie: Right. Yes, you’re right. Say that again. I’m not going just now, sitting in the car, trying not to think so much. That’s Miranda, you’re gonna call her. So say the last thing you said. Say the last thing you said.
Patrik: The worst-case scenario from an ICU perspective is that they look after a patient indefinitely with an uncertain outcome. It’s uncertain at the moment. But imagine she has another cardiac arrest, God forbid, and they have to do CPR, and she survives…
Stephanie: Imagine that.
Patrik: That’s their worst-case scenario. That situation would make it even less likely for them to send her to LTAC.
Stephanie: Exactly. Not that we want that.
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Patrik: That’s right.
Stephanie: They said, if she has another heart attack, she could probably not make it. But she’s right there. It’s not like she’s gonna have her brain without oxygen, because she’s getting the oxygen. The worst-case scenario, they will do another stent, if you ask
me.
Patrik: Exactly. Exactly. Shall we dial Miranda in?
Stephanie: Yes.
Patrik: Just give me one sec.
Stephanie: She said, I’m sitting in the car. She’s sitting in the car. Please be … I know you’re gonna say some things to her to comfort her.
Patrik: Just give me one-
Stephanie: And let her know that she can have power, okay?
Patrik: Yes, absolutely. Just give me one sec. I’ll just dial her in. Bear with me.
Stephanie: Take your time.
Patrik: Thank you.
Stephanie: Sigh… Oh, boy.
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Miranda: Hello.
Patrik: Hi, is that Miranda?
Miranda: Hello Sir, how are you doing?
Patrik: Hi. Very good, thank you. How are you? I just get Stephanie in the call.
Just bear with me, please. Miranda, can you hear me?
Miranda: Yes, sir.
Stephanie: Oh, there she is. Hey, Mimi.
Miranda: How are you doing, Stephanie?
Stephanie: Hi, you’re gonna be all right. We’ve been talking. I’ve been talking to him for about half an hour. So you’re gonna be fine, okay? The first thing you need to know is, you don’t know what you don’t know, but Patrik said he knows about the neuro storms. I gave him some more information about where they are, and what they’re trying to do. And he’s letting us know what we can do, and what we don’t have to do. Right, Patrik? What you
don’t want to go?
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Patrik: Absolutely. Absolutely. Miranda, maybe just tell me, what is your biggest frustration at the moment? Just maybe start with that, what’s your biggest frustration?
Miranda: I think the biggest issue that I’m dealing with is making the right decision for my mother.
Patrik: Yes. And that is hard. That is hard for anyone. First of all, don’t feel bad that it is such a difficult decision to be made. It is. It would be difficult for anyone. But like Stephanie said, the biggest challenge in this situation is that you don’t know what you don’t know.
What do I mean by that? Your mother’s situation, as far as I can see … I have seen this situation hundreds of times over the years. Okay? The first thing you need to know, Miranda, is … and maybe I have mentioned that on Wednesday already, but if I repeat myself it’s probably not a bad thing if you hear it again, 90 to 93% of patients in Intensive Care survive. That’s more than nine patients out of 10 survive intensive care. So the odds are in your mother’s
favour. That’s number one. I do understand from Stephanie that you are very worried that your mother is suffering. Is that correct?
Miranda: I don’t know if that’s really how I feel. My concern is … I don’t think she’s suffering.
Stephanie: If you cry … Excuse me, Patrik. If you feel that you have to cry while we’re going through this, he and I have a safe … It’s you and me, Patrik.
Patrik: You’re in a safe environment here. You’re in a safe environment here.
Stephanie: Because he understands some feelings.
Patrik: You’re in a very safe environment here, Miranda.
Stephanie: She did mention to me … if I can mention this, Miranda, that she can’t bear see our mother like that. She don’t want to see her suffer. Then I came back and told her that the conversation you and I had, was that she could be suffering a little, but she wasn’t even cognizant of a lot of this that was going on. You know what I mean? She’s not really aware of all of this that’s going on. And when this is all over, she won’t remember
hardly any of this, right Patrik?
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Patrik: She won’t remember anything, Miranda. She won’t remember anything about it.
Miranda: When I say, I don’t want to see her suffer is, when I talked to my mother before, that’s … if we stay strong, hopefully if she comes out of it and wake up, she’s in the capacity of being normal. My mother don’t want to be … I looked at some stuff online, and some people have like a slurred speech.
Patrik: Sure. And you can’t rule that out either at this stage. You can’t rule out that if your mother was to survive this situation, that she will be 100%. Nobody has a crystal ball, okay? Nobody can look into the future. What I can tell you is that the majority of patients do survive Intensive Care. What I can also tell you is that most patients do not remember anything about Intensive Care after their stay.
The other thing that is important, especially with a potential head or brain injury… or an anoxic brain injury, whatever you want to call it, people will need time for recovery.
At the moment this is a very tense situation, because … it’s so tense, because you don’t know even whether your mom is going to survive the next few days.
There’s still a risk for that, she’s very sick. At the same time … it’s difficult to look into the future, but my experience shows that the longer patients have for recovery, the higher the chances that they can recover. I do understand that they’re throwing in comments about end of life, potentially, DNR, and all of that.
Again, my point of view is, if your mother was to die, what’s the hurry?
In the meantime, you may as well just wait, and make sure they’re doing everything they can to give her the best chance. If, for whatever reason, she wasn’t surviving, there’s still plenty of time to talk about that. Right? I mean, you see, nobody has a crystal ball in this situation, but they need to maximise her chances for a recovery. By talking about end of life or by talking about DNR, they’re not maximising her chances.
Stephanie: Right. They just want to make her comfortable, and get their bed back.
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Patrik: Correct. And what you’re referring to as, “make her comfortable” that in my mind is euthanasia.
Stephanie: Absolutely. Yeah. They’ll give her drugs. Like they did with my Nana, they tried to give her … they not tried, they did, and we pulled her off of it. We knew every medicine that they were giving her. That’s important to know, what their medicines are that they’re giving her. They tried to give my Nana morphine, and we said no. Morphine takes the oxygen out of her blood. They help the pain, but they put her on there, she was not
alert. Once we pulled her off of that, she’s in a better state. She can respond, still with a smile, and shaking her shoulders.
Then it got to a point where she wasn’t able to do those things. But we don’t want to hate on that. We want to do whatever bit of life my Nana was able to give us that we could. She had a stroke. That’s different from a heart attack.
Patrik: Exactly. So you mentioned about the neuro storms. Sometimes it is very difficult, whether it’s for the doctors or the nurses who are working at the bedside, it’s very difficult sometimes to distinguish between a neuro storm and a full-blown seizure. It’s sometimes very hard to distinguish between that. Is Carmen still on an EEG? Is she still on that?
Stephanie: No. Hey, Miranda. Go ahead, Mimi.
Miranda: I’m gonna let you talk, because I have a lot of … I’m trying not to claim this stuff, but I have a lot of anxiety right now.
Patrik: You have a lot of … sorry?
Stephanie: Okay, okay.
Miranda: Anxiety.
Patrik: Anxiety, sure. Sure. Look, that is totally understandable. Because this is such a unique and also confrontational situation. Plus on top, you are meant to make all the decisions, which is a huge burden for you, I would imagine. That must be a massive burden. Plus, you’re probably now feeling the pressure from the ICU coming to you.
You need to do this, and you need to do that. And we want to get her to LTAC, or we want to talk about end of life. The thing with all of those issues, really, is, they can’t force you to make any of those decisions. There is no law in the world that can force you to make those decisions. Right? 12 days in Intensive Care is not a long time. It’s not a long time Miranda. They make you want to believe it is a long time, but it’s not. They put the pressure on you and
they say, yeah, she needs to go to LTAC. She needs to do this. And if she’s not going to LTAC, then we potentially need to start talking about end of life or DNR.
They’re putting time constraints on you that are unrealistic, and you don’t need to respond to them. You just let it go.
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Stephanie: And she’s been very good at that. She’s been very good at that. Because they wanted Friday, Thursday … they wanted her to tell her Thursday, before we left out of here, or Friday, to go ahead and went to do the trach. She said, I need time to think about it. I’ll let you know Monday. Even though she’s anxious, she’s making the right decisions, Patrik, I think.
Patrik: Yeah. That’s great.
Stephanie: So we’re supposed to be in on Monday to let them know about the trach. Before we went off on this, we were talking about the neuro storms. So if you could share with us your knowledge about what you know
about neuros torms that would be good. Then the next thing is that we want to talk about the trach, if that’s where Miranda wants to move. Is that good, Miranda? Is that good?
Miranda: Yeah. I’m just going with the flow. Yes.
Stephanie: Okay, I got it. You’ll go with the flow. Go ahead.
Patrik: What did you say, Miranda? Sorry, I didn’t quite get that.
Miranda: Yes, you can talk about it.
Patrik: Okay. With the neuro storms, when people have seizures, it’s really sometimes hard to say whether they are seizures or whether they are what they call neuro storms. Have you been seeing those neuro storms? Have you been at the bedside while she was having those neuro storms? Did the nurse,
for example, tell you, oh, now she’s having a neuro storm? How has that been communicated with you?
Miranda: I haven’t really been going to her the last couple of days. I haven’t really been at the hospital as much as I want to.
Patrik: That’s okay.
Miranda: But I was the one that’s seeing the first neuro storm. Basically she was coughing and she starts biting down in the ventilator. And I think biting on her tongue too. Don’t you know that thing when we was little kids? They’d be like, ah.
That wood piece of stick?
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Stephanie: The tongue depressor, yes.
Patrik: What’s that?
Stephanie: You know what she’s talking about, right, Patrik?
Patrik: No.
Stephanie: The tongue depressor.
Patrik: Oh, the tongue depressor. Yeah, sure.
Stephanie: The tongue depressor.
Patrik: Yeah, yeah. So they’ve been using that?
Miranda: They was trying to squeeze that in her mouth, to try to get her to open her mouth. This is horrible to watch. And then they finally got a bite thing. Her tongue was hanging out of her mouth, and we’re worried.
Stephanie: I didn’t see. Is it red or pink? Yeah.
Patrik: That’s not nice to watch, I get it. That’s horrible to watch. Unfortunately, that is what often does happen in situations like that. But that should not stand in the way of your mother recovering. I mean, that’s not nice to watch. I understand that. But that’s sometimes what does have to happen in a situation like that. Also, when they’re putting down the tongue depressor, that’s also part when they’re doing mouth care, for example,
they would also be using the tongue depressor.
Right? It’s not nice to watch, I get that. But what are they also saying about the neuro storms? Is there anything else that they’ve-
Miranda: Ideally, when I’m there, they’re just basically saying, that’s how she’s gonna live. If we keep her the way she is, she will be going-
What I know is, now they got a cooling blanket, and what have you, because her pressure … Okay. What they’re saying is, my mother has a neuro storm, and her temperature is up, so they’re keeping a cooling blanket on her.
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Patrik: Her temperature is up because she’s got an infection?
Miranda: They said that’s from the neuro storm.
Stephanie: Yeah. They don’t see, they’re not able … her white blood cell count was 22 thousand, I think, or 44 thousand. They think that it’s some inflammation. Because I’ve talked to Dr. Philipps and he thinks it’s some inflammation from the neurostorm, because when you have a neurostorm, it affects every organ in your body.
Patrik: Yeah. The reality is that, if there is a brain injury, sometimes the brain can’t regulate the temperature as well as a healthy brain. That could all be part of it. But again, when people are critically ill, all sorts of
things can happen, ranging from a neuro storm to a high temperature, to low blood pressure. Everything that you are describing, Miranda, is rather normal in Intensive Care. And when I say normal, Intensive Care is anything but normal. Don’t get me wrong. It’s anything but normal, right?
The 1:1 consulting session will continue in next week’s episode.
