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 in ICU and Is off Sedations but Why He’s Not Waking Up?
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’s dad shows notable progress in ICU and is asking why the ICU team is denying the progress her dad is making.
My Dad in ICU Shows Notable Progress But Why Is The ICU Team Denying It?
Anna: Hi, Patrik.
Patrik: Hi Anna, how are you?
Anna: I’m fine, thank you. How are you?
Patrik: Very good. Thank you. How has your morning been?
Anna: Yes, fine so far. I haven’t spoken to the hospital yet. The plan last night was to give dad a sleeping pill, because I think he didn’t sleep very well the night before. There’s a plan, I think before they’ve given him half a tablet. It wasn’t quite enough, so I think last night they planned to give him a full tablet, and see whether not he’d then have a better night sleep.
Patrik: Can you say that last part again? What tablets have they given him?
Anna: They haven’t said, but I will ask.
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Patrik: Oh, I see. It sounds to me like they’re a little bit secretive at the moment, because they could just tell you what they’ve given him. What’s the problem? The other thing that I was going to mention briefly before we go further, if you want me to, I can record this call, and then I can email it to you so you’ve got it, you can listen to what we talk about, if that helps for you?
Anna: It would be helpful, if you don’t mind.
Patrik: Not at all. Really, the things that I think are important, is the first thing, you’ve asked from the start, why is he not waking up? Now we’ve got some time to talk about that really, unless you want to focus on something else first.
Anna: No, no, that’s absolutely fine.
Patrik: Yeah, back to my questions. A few things there. A prolonged induced coma, and clearly your Dad was in a prolonged induced coma, can lead to people not waking up, or a long delay in people not waking up. That’s number one. Number two, plus seven cardiac arrests where they were giving probably all sorts of medications including more sedation is not a great combination. What does that mean for long term prognosis? Well, the reality is, your dad is alive. He’s not waking up as quickly as everybody would like but there has definitely been some progress. You would confidently say there has been some progress, wouldn’t you?
Anna: Yeah. We would say, we feel that there has been some progress. Some goes back to when they did the tracheostomy on the 24th of May, and then May 25 he had the cardiac arrest on that day, and the following day on the 26th. They then said, “Okay, you’re sedated. Really, you’re going to see whether he wakes up.” Then obviously the next few days he didn’t at all. Then obviously he then suddenly did open his eyes.
Patrik: Yeah
Anna: Then progress, I mean, the nurse at the station, they would say, yes, he has made some progress with regards to coma, but it’s very, they said it’s far too slow. To us as a family, having seen him just less awake, not focus on opening his eyes, to the point where, as of yesterday, he was able to. He still doesn’t seem to be able to focus his eyes really. However, he does smile as soon as close family members or people he knows come and sit with him.
Anna: He does appear to try to follow a conversation. If a joke is made to him, and he will go take it clearly, he will do a silent laugh. My family reports that when they ask him a basic question he’s able to nod. Then they find that he then does get quite tired again, and then come a good pause for a sleep, or almost a trance really. The medical staff would say, well we’re just not getting that response from him. We appreciate that you are, but we still don’t see it consistent enough, and that there’s enough regression over the last three weeks for us to feel that he’s anything other than neurologically disabled.
Patrik: Right. What’s important there really is, so number one, it takes time for patients to come out of an induced coma, or out of a prolonged induced coma, without a cardiac arrest. If your Dad didn’t have a cardiac arrest, or seven cardiac arrests, and he was to come out of an induced coma slowly, there would be nothing unusual about it. Now, he’s had prolonged induced coma, during which he had seven cardiac arrests. For me, this is perfectly normal what’s happening there.
Patrik: Here’s where it gets interesting. The biggest challenge that I can see at the moment, from the doctor’s point of view, or from the ICU perspective, what’s important there to understand is the biggest concern from an ICU perspective, is that they’re looking after a patient indefinitely with an uncertain outcome. That’s exactly what’s happening in your dad’s situation. They’re looking after your dad who is in a very difficult situation. It’s an uncertain outcome, and it could go on for God knows how long.
Patrik: They would have to put a lot of resources and efforts in to get him out of this situation. For example, once he wakes up, they would have to put in a lot of physiotherapy to get him moving again, because he’s basically at the moment, and I think you mentioned that in your first email, a critical illness myopathy. Have you heard of that?
Anna: Yes.
Patrik: Right. That takes a long time to recover from, and it takes a lot of effort. Quite frankly, they’re worried about, your dad might be blocking a bed for a long time to come in this ICU. Quite frankly, a bed day in ICU costs around 3,000 pounds. They’re doing the math in their head. They’re thinking about, okay, well, we can’t use this bed for the next, we don’t know. For the next four weeks maybe. How many beds are in this unit?
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Anna: There are 15 beds as far as I know.
Patrik: 15.
Anna: Yeah.
Patrik: Okay. Are they full?
Anna: I think they are close to capacity, yeah.
Patrik: Yeah, okay. You might think, oh, why are you asking that? Well, I’m asking that, and it’s not a clinical question, but it’s got everything to do with the clinical issues at hand. Everything, because if they are close at capacity all the time, they know that if your dad stays in there for another four weeks, with an uncertain outcome, they could potentially have 10 other patients in that bed in the next four weeks. That’s what’s going on in the background, and it’s important to understand.
Anna: Yeah, absolutely.
Patrik: Where to from here? Number one, your Dad will need time, and that’s your biggest challenge at the moment. They’re not prepared to give him the time, because your dad will take up resources and all of that, and they’re talking about end of life. They’re talking about, he’s not going to recover. Now, the reality is, your dad defies all the odds with surviving seven cardiac arrests. You also mentioned in your email, has he had a TIA in the beginning?
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Anna: Yes.
Patrik: Look, just by reading through what you’ve described in the beginning, I would think it could have been a TIA, but I would imagine they’ve never screened him for that, because he never had a neurologist involved in this whole presentation.
Anna: No.
Patrik: Right, but even so, at the moment, look at this from a bigger picture. Your dad’s been in an induced coma for nearly seven weeks. He’s had truckloads of sedatives and opiates. Opiates is the pain relief. His day and night rhythm is disturbed. He’s been through a critical illness, and he’s still battling a critical illness. It looks like his brain is working. The CT brain shows nothing. If he’s responding to simple, would you say he’s responding to simple communication, and he’s responding to that appropriately?
Anna: Again, I think it’s patchy.
Patrik: Sure.
Anna: I think when he contracted another secondary lung infection, and then became tired. I think again, and then also, when he appeared to not be sleeping very well at night, he’s then very tired during the day. I think those are possible factors in terms of getting a response from him. I think he has periods of more wakefulness and then for example, the ICU consultant team used to report us, oh, we get the best response from your dad first thing in the morning, when we do our ward rounds. We get him prepared, and then you have to sit there, and by the time you all come in, in the afternoon, he’s pretty exhausted.
Anna: My brother and sister and step mom have found that then, he’s always a bit of a night owl generally, and they found that by six,, seven, eight o’clock, he then has a little period of where he seems to get a bit more energy. I’ve been unwell. I’ve had a nasty cold, so I’ve stayed away from dad the last few days, so I haven’t seen myself, but they feel that they do get an interaction that are meaningful, and just basically that there is a consciousness on some level, we discussed with the family that it’s not there all the time, and that’s one of the things that obviously we do among our concerns that is the fact that he does have difficulty focusing his eyes.
Anna: Some point he seems to look at you then smile. Then he’ll look away again. When we ask that, when they explain that, they just say, to us that’s an example that he is neurologically disabled. Obviously as I’ve said to you Patrik, throughout dad’s treatment we would say, investigate his brain, could they get a neurologist in? They’ve just always said no we don’t think it’s necessary. We don’t think it’s not something we normally do in ICU in this situation. We don’t normally get a neurologist in.
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Patrik: Sure. Where about are you again?
Anna: We’re in St. Anne’s Hospital.
Patrik: Yeah. I’ve mainly worked in big metropolitan ICU’s, and I have found, and I’m dealing with clients who are more in rural areas as well, and I always find that the more rural, the further away from the metropolitan ICU’s, the less specialist involvement. They’re trying to micro manage it all themselves. That’s what I’m finding. I’ve never really worked outside of a big metropolitan area. Therefore, I’m not too surprised that they’re trying to quote unquote, micromanage it, which I don’t think is the best approach. Let me ask you another question. Do you know whether his kidneys are working?
Anna: I will double check that. I forget now how long he’s been off the dialysis.
Patrik: Roughly, what do you reckon? How long has he, is it a week? Is it two weeks?
Anna: It must be longer than a fortnight.
Patrik: Okay, great. The reason I’m asking for this, is a lot of patients in ICU go into temporary kidney failure. It sounds like that might have happened to your Dad. If he’s off the dialysis now, it sounds like he was in temporary kidney failure. When the kidneys are failing, it usually takes a lot longer to get the sedation out of the system, but it’s not only the sedation. We’ve talked about Propofol. We’ve talked about Dexmedetomidine, or Precedex, but it’s not only that. During the induced coma he would have also been on morphine or fentanyl. Have you heard of that?
Anna: Yeah.
Patrik: Right. He would have been on either Morphine or Fentanyl for a period of time. Now, the Propofol is short acting, and that’s great. Most patients after an induced coma, if Propofol is used, they tend to wake up quicker compared to other sedatives that are being used. However, for example, the fentanyl and the morphine that’s being used for pain relief, is staying in the system for much longer.
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Anna: Right. Okay.
Patrik: Right. What’s your Dad’s weight, roughly, do you know?
Anna: I don’t know what it is now. I know that he’s obviously lost a lot of weight.
Patrik: Yeah, he would of.
Anna: I would say he was never, he’s about five foot nine. I wouldn’t have said he was overweight, but he lost much, I mean he’s much smaller now. I couldn’t really tell you his weight, but I would have said he was probably about average for a 76 year old.
Patrik: Okay. Yeah, that’s fine. The reason I’m asking is again, if people are a bit overweight, there is a tendency that sedation as well as opiates like Morphine or Fentanyl, stay in the tissues for a little bit longer, and it takes longer to wake up. That could be another reason. I mentioned kidney failure, but again, the reality is, one of the challenges in ICU is, everybody’s trying to rush to a recovery, and of course you want to recover as quickly as possible.
Patrik: The reality is, your Dad has been, let’s face it, has been as close to death as he has ever been in his whole life now that he’s been critical ill, and he’s just slowly coming out of this. No matter how much people want to speed up the process, he will recover in his own time. He will recover in the time that he needs to get through this. Not waking up, I always believe, especially in those situations, is almost like part of it is also like, to protect yourself. Your dad is not ready to face what he’s been through.
Patrik: That’s part of it too. People will recover in their own time. Imagine you’ve been critically ill, like your dad has been, and you’re waking up in ICU. You’ve been in there for seven weeks, or whatever amount the time now is. You’ve got to face reality. That’s a tough one.
Anna: It is, yeah, absolutely.
Patrik: No matter how good the family support and it sounds like he’s got the best family support, but it’s still, at some point or another, he has to face what he’s been through. He will face that when he’s ready for that.
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Anna: Yeah.
Patrik: Yeah, go on.
Anna: I’m sorry, no Patrik, go on.
Patrik: In the meantime, the ICU team, needs to do whatever they can, to get him back on his feet, and give him the time he will need to get through this. They’re not prepared for it at the moment. That’s all it is. That’s all it is. He survived seven cardiac arrests. Why would he not survive the things that he has to face going forward? There is no reason for that as far as I can see. Also, the ultimate question is, even if he was to stay, what they refer to as disabled, who is to say that he doesn’t want to live?
Patrik: I know you’ve mentioned it already with him but who’s to make a judgment about what’s an acceptable quality of life for him, or for you as a family? That is not for the ICU team to judge.
Anna: Yeah.
Patrik: Yes, I understand what they said from your email that they’re saying there are no support services outside of ICU, and I tend to agree with that on a general level, that the support outside of ICU is pretty dismal for somebody who’s going through what your dad is going through. I tend to agree with that, but here is the other thing as well. Most ICU professionals, and I include myself there as well, we are very good at what’s happening in ICU. We know everything about ICU. What we’re not good about is what happens outside of ICU with the formally critically ill patients.
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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