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 Mom is Admitted to the ICU with Seizures. Why is it that the ICU Doctor is Not Giving Any Good Info about My Mom’s Current Condition?

 

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 George as part of my 1:1 consulting and advocacy service! George’s mother is critically ill in the ICU and George is asking if it is true that clinical decisions of  the ICU team regarding treatment withdrawal are based on neurological condition of the patient?

 

The ICU Team Says They Won’t Be Able to Help Mom. Can They Withdraw Life Support Without My Consent? Help!

 

George: Yeah. This was discussed with my mother before she even went into surgery and she wants at all to be saved no matter what.

 

Patrik: Okay. Good, good. And the reason I’m asking this, it could come up as a point of discussion. It could come up. And if that’s the case, then you just reiterate what you’ve just told me, that your mother’s wishes are to have full treatment.

 

George: Yeah.

 

Patrik: Okay. And I’ll leave it there for now. If that becomes an ongoing issue that they do bring it up over and over again, we can talk about that if they do bring it up. For now, that’s all you need to know. And if they do bring it up, that you say, “Look, my mom wants full treatment.” That’s all you need to say for now.

 

George: Yeah. Okay.

 

Patrik: Okay.

 

George: I’m going to email you too the video that I’m talking about just so you could take a look at it.

 

Patrik: Absolutely. Absolutely. So then just give me one second. So if you think there has been any medical negligence while she was in this other facility and if you think that could’ve contributed to your mother’s now situation, you should ask for the medical records. 

 

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George: Yeah, we asked and my wife went in there and then they made her sign a paper to get them released and then they said that it was closed so they’re going to mail them. She wanted copies of them right there and they said, “Oh, we’re going to mail them to you.”

 

Patrik: Okay. That’s fine. Have they given you any timelines?

 

George: No. And I made a formal complaint with the director and they came and took our statements.

 

Patrik: Good.

 

George: I let them know everything that I was unhappy about.

 

Patrik: Yeah, absolutely. That’s going to be very important.

 

George: And Patrik, she was actually ready to be released in good health. She was breathing on her own for two days and they called me and said that she was a candidate to have the whole tracheostomy removed and that she was all happy about that. And then overnight, they injected her with the Ativan without having her hands tied and then this is what caused this problem.

 

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Patrik: Yeah, yeah, yeah, yeah, yeah. And that’s going to be really important that you have this evidence around that. Because that’s what you can base any potential claims on to have the medical record and especially what you’re telling me now in that they sort of released the hand and that could potentially triggered this event. You’d have to look in the notes whether that’s documented because they may remove some of that information.

 

George: Right. Okay. Yeah.

 

Patrik: Right. You’ve got to look for that. I guess at the moment you have more urgent things to deal with, but it’s just for down the line. Okay. This ICU where she is at the moment, is this a specialist cardiac ICU? Is it a specialist neuro ICU? Do you know?

 

George: I’m not too sure, but I know they told me there was neurologists here on site and that it was special for that, but I really think that this is still connected with the first ICU somehow because it’s the same doctor’s name and that’s the reason why they transferred her over here.

 

Patrik: It’s the same doctor looking after her? Is that what you’re saying?

 

George: They told me that her doctor from the other place, he was here. This is his, I guess, place where he works. I know they’re connected to the same business or company.

 

Patrik: Sure. Sure. With this doctor still then in the mix, are you feeling confident?

 

George: No. But I’m glad to get her away from over there because it was negligence that brought her here.

 

Patrik: Yeah. Yeah. Look, it sounds like it can only get better.

 

George: Yeah.

 

Patrik: Okay. Here is what … As I said, they need to … If the Ativan works and if the versed works, I do believe they need to stop those seizures because it’s number one, it’s not very nice to watch.

 

George: Yeah, no.

 

Patrik: It’s not very nice to watch.

 

George: Right now as we’re speaking, she’s really calm. There’s no movement in her body, just a little bit here and there, little earthquakes.

 

Patrik: Sure. Sure.

 

George: And her left and right feet move together. That tells me it’s both sides of the brain, right? I don’t know if it’s true. The left controls the right side of your body and the-

 

Patrik: Correct, correct.

 

George: … right controls your left side of the body.

 

Patrik: Correct.

 

George: Yeah.

 

Patrik: So I tell you what I think will go and happen next. They will evaluate the CT scan and they will evaluate it in more detail, and they will sit down with you and they will tell you that there has been most likely some brain damage. That’s what they will tell you and they will potentially advocate to stop life support for your mother. That’s what I believe is going to happen next. And what do you do with that information? Well, you want to object that until you have clarification of what has caused all of this, are there any other treatment options, potentially getting a second opinion. Just looking at the video, but it would definitely be helpful if you can send me the next video, looking at the video, it looks like … Has anybody used the term jerking? Have you heard that term before?

 

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George: Yeah. One of the nurses, that’s what she was calling it.

 

Patrik: Right, okay. Okay. So if it’s jerking and if it’s not seizures, there is a slight difference, if it’s jerking or also sometimes being referred to as myoclonic jerking. It is often a sign that there has been significant brain damage, but it’s too early to say that. And if there is significant brain damage, it’s a very chance they will advise or advocate or suggest, whatever you want to call it, to stop life support, but it’s not there yet. I’m just telling you because I’ve seen these situations so many times, that this could happen.

 

George: Yeah.

 

Patrik: If it does happen, my advice is to stop talking about it and say, “Look, I’m looking for advice before we even go there and then we can talk.”

 

George: Right.

 

Patrik: Because that then changes the whole situation again.

 

George: Yeah. Okay, Patrik.

 

Patrik: That is really important, George, that this could be one of their next steps and most families are not prepared for that. And if it happens, I expect a lot of negativity and a lot of what I refer to as doom and gloom if they’re going to want to push your mother towards withdrawal of life support. They’re going to really paint a very bleak picture and if you feel like it’s heading that way, you should stop then. You should say, “Look, I’m not prepared for that talk at this point. I just want to get more information.” And because they often put families under a lot of pressure to say, “Look, we need to make a decision now.”

 

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George: Okay. Yeah, when I talked to the neurologist the first time, that was basically one of the first things she said.

 

Patrik: What?

 

George: That there is that possibility that they won’t be able to help her.

 

Patrik: Okay. Okay. But it wasn’t overly negative, it wasn’t in your face or … How did she communicate that?

 

George: Yeah, no.

 

Patrik: That’s what I’m trying to ask. How did she communicate that?

 

George: She said, that would more likely what it would look like if it was brain damage and not seizures.

 

Patrik: Okay. Also, again, I’m just trying to prepare you for the worst case scenario here if that was the case. Also, and I’ve seen this hundreds if not thousands of times, George, let’s just say, they come and they say, “Look at your mother, we can’t do anything. She’s going to die. We’re going to stop life support tomorrow.” And again, I’m painting the worst case scenario here. They can’t withdraw life support without your consent, okay? They have to follow policies and procedures as well as the state law in Georgia. It’s not just … They often say, “Oh, yeah. We can make all these decisions. We don’t need to ask you.” That is not accurate. Number one, they have to ask you. Number two, they have to follow hospital procedures and protocols and they have to follow the law in Georgia when it comes to end of life. This is just to prepare you and to let you know that you have rights. You have rights.

 

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George: Yes, I know.

 

Patrik: And you will need to exercise them potentially if it comes to that point. Now, has anybody mentioned the term that your mother could potentially be brain dead? Has that been … I know brain damage has been mentioned. Has the term brain dead been mentioned?

 

George: No.

 

Patrik: Okay. Okay. That’s good.

 

George: And right now when we were talking, she was opening her mouth and she has a lot of … She still has tracheostomy in her neck, but she had a lot of secretions that she was spitting out and the nurse came in and suctioned her.

 

Patrik: Okay. Okay. So is she opening eyes when you ask her to?

 

George: No, but she makes facial expressions, like moving her eyebrows and stuff like that certain times.

 

Patrik: Okay. To sum it up, what needs to happen next, then if they want to stop the seizures, they need to start the versed. I’ll email that to you when we come off this call. They need to start the versed to stop seizures potentially diazepam. Again, I’ll put that in the email. Or have the Ativan going continuously because it sounds to me like they’re giving it intermittently.

 

George: Yeah.

 

Patrik: Right. So they need to start her on something on a drip continuously to stop that.

 

George: Okay.

 

Patrik: Now, have they talked about pupils? I’m talking about, and I should’ve asked the nurse, I forgot that.

 

George: No.

 

Patrik: So what happens in a neurological situation like that, they should check your mother’s pupils frequently. What do I mean by that? Have you seen them shining a light into the pupils? Have you seen that?

 

George: No. But on that video that I sent you, I sent it to you a few minutes ago, you could see that her eyes are open.

 

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Patrik: Okay. Let me have a look whether I got the video. Just give me a second. Just give me one second. No video yet.

 

George: Okay. I’m in the hospital so it might be part …

 

Patrik: That’s okay. No, no. We’ll talk. we’ll keep talking. While I’m waiting for the video, Have you heard of the term Glasgow coma scale?

 

George: No.

 

Patrik: Okay. I will send you the Glasgow coma scale. What is the Glasgow coma scale? The Glasgow coma scale refers to a patient’s neurological condition. The maximum score of a Glasgow coma scale is 15 points. You and I talking now, we have a Glasgow coma scale of 15. You and I are fully conscious. Here’s the video. Just give me one second. I’ll just quickly watch this. Just give me one second.

 

George: Okay.

 

Patrik: And your mother’s Glasgow coma scale at the moment is probably a three, which is the minimum score.

 

George: Okay.

 

Patrik: Okay. Here’s the video, yeah. Okay. I can see this now. Oh, yeah. There’s eyes open, definitely. There’s definitely eyes open, absolutely. That means she’s not a GCS three. I’ll come to that in a moment. Just give me … I’ll just watch this one more time. Just give me one second.

 

George: Okay.

 

Patrik: Are you on email at the moment?

 

George: Yeah.

 

Patrik: Can you access your email? Okay. Just give me one second. I’ll just quickly send you something and we should talk about this. I think we should talk about Glasgow coma scale because it will come up in the discussions with the doctors. It will come up. Just give me one second. I just want to send you this that you know what I’m talking about because it’s going to be important. Just give me another moment. I’ll just need to dig it out.

 

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George: I’m really glad you have this service in your website and stuff. It’s so much information.

 

Patrik: Well, thank you. Thank you. That’s good to know. Well, we were doing a lot of this work and we know it’s important work. It’s a situation that’s terrible, but it’s also a situation where people need advice. Otherwise, you’d be walking in the dark. Now, I just emailed you a document. It’s gone out. Can you have a look whether you’ve received it? It’s just a document where it says GCS. That’s all it says.

 

George: Yeah, I got it.

 

Patrik: Got it. Can you open up the document?

 

George: Yes.

 

Patrik: Okay. When you look at the document, you can see that the first section, it says eye opening response. Can you see that?

 

George: Yes.

 

Patrik: So her eyes are opened spontaneously. That gives her four points. So then you can see verbal response would be a one for no response. That’s five points. Face motor response would probably be no … It would probably be abnormal extension or abnormal flexion so a two or a three.

 

George: Yeah. Right now she just has her eyes closed.

 

Patrik: Okay. That’s all right. That’s all right. But she had them open earlier clearly. Why is this important?

 

George: Yeah.

 

Patrik: Let’s just quickly add up those points. So she will get four, five, seven, or eight maximum. Now, why is this important? The lowest score is three. You and I talking is 15. It doesn’t get any higher than 15. When a person in intensive care has the Glasgow coma scale of three, that’s not a good sign, but her Glasgow coma scale is higher. That’s important to know and it’s also important for a clinical argument in terms of if they say, “Look, we need to withdraw treatment because she’s not waking. She’s got those jerks.” But her Glasgow coma scale is actually not a three. It’s actually probably a seven or an eight. Because often clinical decisions around withdrawing treatment are based on Glasgow coma scales. I really don’t want to overwhelm you with too much clinical information, but I do believe this is important. You’ve got to have a look at this Glasgow coma scale a bit later when we come off this call. Have a bit of a look into it.

 

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George: Okay, I will.

 

Patrik: Familiarise yourself with it because it will come up in the discussions. It will come up. But for now, how long ago did you take this video? This video that you sent me, how long ago is that?

 

George: That was Monday around … Let me look at the time on my phone. That was Monday at 6:00 p.m.

 

Patrik: Okay. So as of today, for example, would she have her eyes open as well at times?

 

George: Well, before this she was completely awake and alert, before this happened.

 

Patrik: No, no. I understand. I understand that of course, but today, let’s take today. Did she have her eyes open today?

 

George: No, just completely asleep. 

 

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Patrik: When was the last time she had her eyes open?

 

George: I haven’t seen her eyes open since this incident happened.

 

Patrik: Okay.

 

George: Yeah, that day when I sent you that video, that was when she was having the real bad seizures or jerking and her eyes were … She wasn’t even able to keep them closed. Her eyes were drifting up, but her eyelids were open a little bit.

 

Patrik: Right. So this video that you just sent to me, just to clarify, is this before or after the cardiac arrest?

 

George: After.

 

The 1:1 consulting session will continue in next week’s episode.