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 Dad is Improving in ICU But Why Does the ICU Team Aims for Withdrawal of Treatment?
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 Anna as part of my 1:1 consulting and advocacy service! Anna is having trouble in pushing other suggestions for the treatment of her dad in ICU and she is asking why is the ICU team not considering a Neurologist for the treatment of her dad.
Why Is The ICU Team Not Considering A Neurologist In My Dad’s Treatment?
“You can also check out previous INTENSIVECAREHOTLINE.COM sessions with me and Anna here.”
Anna: Yeah, we have looked at that. Yeah, I did.
Patrik: What would you score your Dad for?
Anna: I haven’t got the scale in front of me. I know one of it say, and we’ll have to look back and catch it. I think some of the ones of, is it eyes open spontaneously, is that one that gets you highest score?
Patrik: Yes, I’ve got it in front of me now. Eyes open spontaneously, four.
Anna: Okay.
Patrik: He can’t talk because he’s got the tracheostomy. That’s fine, so that’s a one. That’s five in total. Would he squeeze your fingers if you asked him to?
Anna: It’s patchy.
Patrik: Patchy.
Anna: Sometimes he does. Sometimes he doesn’t.
Patrik: Okay. If you took his arm or his hand, or if you took a needle and you would sting him in his finger, do you think he would pull back his hand?
Anna: They said that at first they didn’t get a reaction from him and one time they found that they were getting that reaction when they did. They said they’d pinched one in his nail bed. At first, when he first came out of the coma, they said they wouldn’t get any response. I think then about a week later, one of the people that supported that they were getting more of a reaction. I forget the exact details. It would be difficult to say definitively I think. Obviously it’s something we can ask them.
Patrik: I think you should. I think you should ask them for his Glasgow Coma Scale at the best and at the worst.
Anna: Okay.
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Patrik: You would have seen him squeezing your fingers if you asked him to on the odd occasion, yeah?
Corey: One occasion.
Anna: Corey, my brother says on one occasion he’s done that.
Corey: Sometimes he does it.
Patrik: Sometimes, okay. Okay, all right. Let’s just say that’s the best. The best Glasgow Coma Scale would be an 11 then.
Anna: Okay.
Patrik: He’s definitely moving his hands isn’t it?
Anna: Yeah.
Corey: Yeah, he moves them most of the time and then very often all his arms.
Anna: Yeah, it’s his arms.
Patrik: All his arms. Would you say he’s moving them on purpose? Would he have the strength to scratch his forehead? Scratch his tummy if need be?
Anna: No.
Patrik: Right. Right, okay. Okay. That’s simply probably he doesn’t have the strength at the moment.
Anna: No. No.
Patrik: All right. That’s okay. Have you got that Glasgow Coma Scale in front of you?
Anna: I have it in my telephone.
Patrik: No, no, that’s okay. Doesn’t matter. Doesn’t matter. Don’t worry about it. You would not stop treatment on somebody with a GCS of 11. That again is euthanasia. It’s murder. That’s basically, your dad is opening eyes, he can squeeze your fingers at times, and he can’t talk because he’s got the ventilator. Imagine, so his brain is working at least at times. Imagine, who’s going to tell him, oh, we’re probably going to kill you because we stopped the ventilator. I mean, seriously. Seriously. That is euthanasia.
Anna: I think that’s why we’re so uncomfortable, as his advocate, with the family as his advocate, I think that’s why we feel very uncomfortable supporting. Before they were very explicit, from the beginning, they didn’t think that he could not survive the one, they don’t, they collectively hold the same lead that he still can’t survive it. We feel that we’re just effectively prolonging his life artificially, and that actually I think we’re having to question whether or not we’re doing the right thing by keeping him alive.
Patrik: Yeah. Yeah. That will be their point of argument, but let me ask you this. Do you think your dad is suffering?
Anna: We’ve not felt that he’s in any pain. They have said, if we felt he was in any pain, they said that they would give him shots something stronger like Morphine. I think generally speaking, I think I’m right in saying they’ve never really had to give Dad any pain…
Corey: He’s never been medicated Morphine.
Anna: Yeah.
Anna: They think because he’s in crisis now, but generally speaking, they don’t feel he’s in any pain. We agree. The last couple of days though, as we move back into another secondary lung infection, he appears to be having, obviously he’s got a nutritional feed. They use that for, I think the food now goes through his nose. He started getting diarrhea, and that’s making him feel, so I think he looks a bit uncomfortable sometimes, because I think around obviously where they’re changing his pants is sore. We’ve asked why he’s got diarrhea, and they just can’t really explain it.
Patrik: Yeah, yeah. Absolutely. This is often an argument being used. We don’t want to prolong any suffering, and it’s always hard to gauge the level of suffering of course, but this is also why I believe it’s so important, for example, to find out what medications he’s on. Whether for example, they are giving him any pain medication at the moment, or whether that’s just his state without any pain medication.
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Patrik: It sounds to me like overall he’s very peaceful. Just remind me again, you mentioned they are getting him out of bed every day aren’t they?
Anna: They are, yes.
Patrik: Right. Have you seen them doing that? Have you witnessed that?
Anna: Yes, when my, particularly whenever my brother and my step mom, my sister and mom visit. They’ve seen dad sitting up in a chair. I think the longest he’s been is about four hours.
Corey: Four hours on Friday.
Anna: He did four hours on Friday.
Patrik: That’s great. That’s great. For example, when he gets out of bed, do you think that’s very painful for him?
Anna: We’ve never seen them actually do it. We’re never there when they do it. They’re all about just a minute when they come and do that. We don’t see that. They said for example, they then, he’ll sit in the chair and they’ll say, “Craig, do you want to go back to bed?” He’ll shake his head, and then they’ll say, “You’re looking a bit tired,” and I think they can, perhaps sometimes they’ll notice on the ventilator that perhaps he’s looking a bit tired, and then they’ll say again, “Don’t you think maybe you should go back to bed now?” Then he’ll nod. He does seem comfortable sitting in the chair for periods during the day.
Patrik: Right, right.
Patrik: Right, okay. Well, if that’s the case, there’s some very positive things happening there. On the one hand they’re doing what needs to be done. There’s lots of people, the reason I’m saying that is, there’s lots of people coming in a similar situation to me, and they’re not even mobilizing patients.
Anna: No.
Patrik: Right, so from that perspective, that is a positive. They’re doing all the right things on the one hand, but on the other hand, they can also see that it’s taking much longer than they expect, which is why they are so adamant about looking at potentially stopping treatment. They’re doing all the right things, which is great. It’s just a matter of keeping on that path, getting a neurologist involved, see what the neurologist has to say.
Patrik: For example, a neurologist might come in and might say, “Hey, we’ve got to get him off this ventilator. Then he could go on to neuro rehab.” If a neurologist was to say that, that would mean for the ICU, oh, we have to keep him for the next four weeks until he gets off his ventilator, or that sort of thing.
Anna: Yeah.
Patrik: You’re getting my point of view now, but you also need to get the neurologist’s point of view.
Anna: Absolutely. Yeah, and that was going to be one of the things I was going to ask you Patrik since you brought up neuro rehab.
Anna: I was just saying, should they have been considering neuro rehab really over the last two weeks, because it’s not something that they’ve put to us before?
Patrik: Yeah.
Anna: Thank you.
Patrik: You see this is exactly what I was saying before. They have a very isolated view. The view is just, we are in ICU, and we don’t know where this is going. They’re not thinking ahead. They’re not thinking what could happen with your dad long term.
Anna: No.
Patrik: That’s why it’s so critical to get the neurologists point of view.
Anna: Yeah, absolutely.
Patrik: Somebody else pushing towards more treatment, and more time, to get him to the next step.
Anna: Yeah, absolutely.
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Anna: Yeah, and obviously I should say, the neurologist may come in and, the neurologist will come in give them a hard point of view, but it’s still added information. It’s still a new perspective.
Patrik: Correct. Absolutely.
Anna: Patrik, really, we need to be, again, formally requesting that we, I suppose this is where we’d really welcome your guidance in how we go about affecting these changes we request in ICU. How would you advise us to really go about getting these?
Patrik: No, no, absolutely. Look, I think I might have mentioned in some of my emails that you have to be a little bit more forceful. I’m all about working with people. I’m all for that of course. If you can work with the staff in there, you definitely should. From your very first email, I read that initially you were very happy.
Anna: Yes.
Patrik: Is that right? Will you still confirm that?
Anna: Yeah, I think we were. Yes, I think we were. We’d never had an experience of ICU before, but I think we were very impressed by the efforts that they went to, particularly in the first week, they were proactive.
Patrik: I guess, to their credit probably, they’ve brought him back from seven cardiac arrests, so they must have some skill in there.
Anna: Yeah, absolutely. You’re absolutely right.
Patrik: At the same time, they’ve moved on from there, and their tone is changing. Their tone, from my experience, is changing because your dad is not recovering in a timeframe that’s convenient for them. That’s the reality. It’s all about time frame. How do you go about it? Your first line of argument really needs to be what your dad wants. In the absence of him making that very clear, you are his advocates. It’s really important that, you mentioned what type of person he was before this incident, and that you’ve discussed this with him, that he would want to continue life, no matter the obstacles.
Anna: Yeah. Absolutely.
Patrik: That’s number one. Number two, if that for whatever reason fails, you then have to go down the track of, hospital policies, and I mentioned that before, like whenever it comes to issues like DNR, do not resuscitate, when it comes to withdraw of treatment, they have to follow certain procedures. One procedure, for example, is that they have to consult or consent you. I wouldn’t even go there. Where I would go to is hey, my dad’s brain is working. As long as my dad’s brain is working, I want him to make that decision. Give him the time, so he can come to that point, where he can make that decision.
Anna: Yeah.
Patrik: Your Dad will get more awake, it will just take time. Then, he’ll hopefully come to the point where somebody can sit down with him and can say, “Hey, how are you feeling?” Need to explain to him what he’s been through, and all of that. Then, make a decision from there.
Anna: Yeah. Obviously yeah, that’s one of the talks with the consultants on Saturday, he said to him, we reiterated the thing that we’ve asked for continually, and that perhaps is more time. We said we are grateful to you that you have given him more time. Now we’re at the juncture again, where you’re facing, we think in your position that you want to effectively withdraw treatment at some point in the near future. We’re again asking for more opportunity and time for dad to potentially reach a point where maybe we ask him if he wants to continue.
Patrik: Absolutely.
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Anna: The doctor’s response to that was, we don’t think he’d be neurologically able to answer that question, or we don’t think he’ll ever be in that position. You can see Patrik, how, I think you see this a lot Patrik, and I think you’ll be able to see how, as a family, we’re in counseling and that sort of, they’ve got their position, and they won’t do anything.
Patrik: Yeah. That’s right. That’s exactly right, but the reality is, as long, okay. I’ll tell you where you need to go with this. Even though it’s not consistent, where your dad is following your instructions hence, squeezing fingers. It’s not consistent yet, but you’ve seen it?
Anna: Yeah.
Patrik: Right. That needs to be your line of argument. Your dad’s brain is working at least intermittently. You’ve seen this, and they’ve seen it too. They will get an appropriate response to certain questions.
Anna: Yeah.
Patrik: As long as that’s the case, somebody needs to sit down with him and needs to ask him. He will have lighter moments of course, then on some days, than he will have on others. You would have probably seen that already.
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Anna: Yeah.
Patrik: Right. That needs to be your line of argument around the brain being intact. At least on some days.
The 1:1 consulting session will continue in next week’s episode.
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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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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