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
The Intensive Care Team Wants To Do a One-Way Extubation and Let Her Die. What Do I Need To Do To Save Her Life?
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 is mechanically ventilated and has a tracheostomy in place in ICU. Anna is asking what causes the delay of her dad coming out of the induced coma.
My Dad is in ICU and Is off Sedations but Why He’s Not Waking Up?
Patrik: Hi, is that Anna?
Anna: Yes, speaking Patrik hello.
Patrik: Hi, how are you?
Anna: I’m fine. Thank you. How are you?
Patrik: Very good. Thank you.
Anna: Thank you.
Patrik: You’re very welcome. So you wanted… I’ve had a very brief look at your email, in terms of it’s very long and I had a very, very brief look, sort of got the basic gist of it. It sounds like you’ve been through a lot there with your dad.
Patrik: What is it that you’re specifically wanting at the moment? What’s your biggest frustration at the moment? Where do you think you need the most help?
Anna: I think we’d really welcome some help and advice on the sort of delay of my dad coming out of the induced coma. He was mechanically ventilated, and they did the tracheostomy and then he needed some sedation. Unfortunately, he did then have seven cardiac arrests, but they were there since day’s work.
Patrik: Unbelievable. Unbelievable. I mean, I’ve seen stuff like that. Don’t get me wrong, but not, you know you don’t see seven cardiac arrests for somebody who survives very often. It’s unbelievable.
Patrik: It’s amazing.
Anna: And obviously so the sedation board, they told us the sedation was effectively removed. At first, they just told us he wasn’t waking up and he should be and they wanted to withdraw treatment. We asked, could we have more time? Could he have more time? And they agreed, and then he opened his eyes, and then very gradually until now, he is becoming more, and I think I said in the email. He can smile, he can nod, he can shake his head. He will sort of laugh silently at a joke. He’s starting to regain his, some of his muscle. Obviously, there’s still the issue of his lung failure, but they are telling us that they’re still concerned about his virology, and I think that’s why we’re just still a little bit in the dark, really.
Patrik: Okay. Okay. I think. Okay. Yeah, sure, I understand. As I said, I had a quick glance at the email. I haven’t read through all of it. I think the best next step then is, especially if you’re stuck with the induced coma or coming out of the induced coma, having the delay of the induced coma, it would be very helpful to know what medications he’s been on during the induced coma. Right? That would be very helpful. It would also be helpful, he must have had CT scans of the brains, or I briefly read, he didn’t have an MRI because of the pacemaker, obviously. So, have you seen the results of the CT scan?
Anna: No. They just told us that they did the CT scan and then it just didn’t show anything.
Patrik: Would be also good to have a form of report, but it really, with the induced coma, I’d be very happy to give my comments on that of course, once I know what they sedated him with. Because there’s often a big difference between waking up depending on the sedation that’s being given during the induced coma. Right? And I’m sure there would also be more information in the email that I would have to go through in detail before I can comment. How old is your dad again? He’s 76?
Anna: 76. Yes. I remember, I think one of the sedatives was …It begins with “P”..
Patrik: Propofol? Propofol?
Anna: I think so, yeah.
Patrik: Yeah. Probably, probably. Yeah. Yeah. At the moment, when you are talking to your dad he’s still opening eyes?
Patrik: And if you asked him for example, to squeeze your fingers, he would do that on a regular basis?
Anna: Yeah, he can, he… At first, he had no muscles sense at all, but he can squeeze by hands. Yeah.
Patrik: That’s great. That’s great. And are they mobilizing him?
Anna: Yes. They are. The physios are coming in twice a day. They’re picking him up in the-
Patrik: That’s great.
Anna: By the chest. And they tend to try and push him to go sort of as long as he’s comfortable to. First, they did say to us, “Do you think he’s waking up from the coma? We think he is making progress.” But in the last of days, they just told us that they don’t feel that there is now enough change. And we’re just a bit sort of an, I think we’re just frustrated because we just don’t know whether or not he just needs more time or whether or not.
Patrik: Okay. yeah. With that, when they’re saying that isn’t enough progress, are they giving you any specifics?
Anna: No. No specifics at all.
Patrik: Right, right. From your perspective, do you think there is progress at the moment?
Anna: Yeah, we do, specifically in the last week. Yeah, we do. Yeah.
Patrik: Okay. Okay. How far away or have they commented on how far away he might be from leaving intensive care?
Anna: They haven’t.
Patrik: They haven’t. Okay. No, no, that’s fine. I mean, he has been in there since around the 10th of May. Wasn’t it?
Anna: 13th of May.
Patrik: 13th. Yeah, yeah. So, it’s been over a month now. Whereabouts is he? Is he in London or…
Anna: He’s in UK.
Patrik: Okay. Yeah, yeah. I used to work in the UK more than 10 years ago. I used to work in Manchester and Linda in Liverpool, but that’s okay. You never know. I might have been somewhere there. It’s a small world.
Patrik: So, no, no, that’s okay. Anymore talk about treatment, about withdrawing treatment? Anymore talk about that?
Anna: No. They haven’t made… There hasn’t been any more talk about withdrawing treatment, no.
Patrik: Okay. Okay. Has there ever been any talk about a DNR or an NFR? Do you know what I mean by that?
Anna: Yes. Originally, when he had the cardiac arrest, and they said to the pacemaker, one of the consultants said that if he has another cardiac arrest, that couldn’t be stopped by the pacemaker, they wouldn’t resuscitate. But, in fact actually, they’re now talking about removing the pacemaker because they don’t feel any need for it anymore.
Patrik: Right. So, when they mentioned about your dad potentially not being resuscitated if his heart stops again, is that documented? Have you challenged that at the time?
Anna: No, actually, we didn’t challenge it and we didn’t see its documents anyway. It was just said verbally to us.
Patrik: Okay. Well, I can tell you from experience that if it’s been said verbally to you, that they would have documented that.
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Patrik: And if you are concerned or let’s look at two options there. If you are concerned, number one, that they would not resuscitate your dad if his heart stopped again but you would want him to be resuscitated because it’s been successful before. You should definitely get that documentation removed. They would not mention that to you without documenting it because they always have to cover.
Patrik: Right. So, it’s something you should be deciding and not the doctors. If you don’t challenge that, they will decide on your behalf and they make the documentation look like they would have discussed that with you and you would have consented to that which sounds to me like hasn’t been the case right? And that’s the sort of after having worked in ICU for nearly 20 years, I know how the system works. Right? And if you think that’s appropriate for your dad, if you feel like they shouldn’t resuscitate him because you don’t want him to go through the trauma of another cardiopulmonary resuscitation again, then that may well be the right decision. But maybe your dad is now also in a situation where you can ask him what he wants.
Anna: Yes, exactly. Yeah.
Patrik: So, and especially if he’s now awake and he can be asked, the question really is, are the doctors brave enough to discuss it with him? Or are they just documenting a life or death decision on a piece of paper without informing your dad or yourself?
Patrik: That’s very, from my perspective, very questionable on a moral and an ethical level.
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Anna: Okay. That’s pretty helpful. Thank you.
Patrik: You’re very welcome. And that’s, again, probably something where we can help. We have helped countless families to have at DNR removed, right? Because again. We know where hospitals go wrong. We know where they breach policies, also potentially the law. That they just sort of almost say those things to you whilst they’re passing by, but at the end of the day, that’s the life or death decision they’re making.
Anna: Yes, exactly.
Patrik: Right. And that’s where the pitfalls are.
Anna: Yeah, yeah. Absolutely.
Patrik: But I’m very pleased to hear that your dad is improving. After seven cardiac arrest, that’s really great. I mean, your dad must be a very strong person to go through that and having survived that, that’s amazing.
Anna: Yeah, absolutely.
Patrik: Yeah. And one has to be, to go through such a prolonged, Number one, through such a prolonged treatment, but then also surviving seven cardiac arrests. I mean, the reality is if somebody has a cardiac arrest, the best place to have a cardiac arrest is probably ICU because it’s getting picked up early, you’ve got all, you’ve got trained staff who can manage the situation like that and you’ve got all the equipment and the drugs. If there’s ever a place where it’s good to have a cardiac arrest, it is the ICU.
Anna: Yes. Yeah. They told us that.
Patrik: Right, right. No, no. That’s really great. Now, are you the medical power of attorney for your dad?
Anna: Oh no, we don’t have that.
Patrik: Right, right. But who has been, have you been giving consent to procedures, or I think I read tracheostomy? Somebody must have given consent to that.
Anna: Actually, no. I don’t recall if they’ve ever asked her for consent or for any procedure. I was here when he had the tracheotomy. They certainly didn’t ask for a consent.
Patrik: That’s interesting because it’s a surgical procedure. It’s a mini operation. I would be very, very surprised if they hadn’t had asked you. Your dad would have been still in a coma then?
Anna: Yes. Yeah, absolutely. I mean, unless they asked my stepmother and perhaps she just didn’t communicate that, but it was just certainly put to us that they were considering a tracheostomy to remove the sedation and get him off the mechanical ventilator. Then they decided that they wouldn’t do it because he was too well. And then we suddenly found that they did try to do it. I will check with my stepmother, but I certainly wasn’t, there was no conversation with me or my sister or my brother.
Anna: In terms of our physical time.
Patrik: Is your stepmother the medical power of attorney?
Anna: No, no, no, she isn’t.
Patrik: Right. Okay. Well, look, I would strongly argue somebody must’ve given consent, like sign a consent form for something like that. That’s the normal procedure. So, the most help you want at the moment then is really to look at why your dad hasn’t come out of or hasn’t woken up from the induced coma. That that would be your, the biggest question you have at the moment. Is that right?
Anna: Yeah, absolutely. And we have asked them if he needs a logical assessment, but it’s not something they really do in ICU.
Patrik: Oh no, no, no. They would.
Anna: Oh, wow.
Patrik: Again, this is probably where my expertise comes in. One frustration for families in intensive care is, you don’t know what you don’t know and you don’t know what you need to look for and you don’t know what questions you need to ask. Right? This is definitely something that I can help you with where, number one, there could be a simple answer why he hasn’t woken up from an induced coma yet. But number two, if there is no simple answer, then the next step definitely needs to be a neuro assessment. Right?
Patrik: Who is making the decisions at the moment on a medical point of view? Is it just the ICU team? With the cardiac arrest, there must be a cardiologist involved now?
Anna: Yes, there was. There was a cardiologist involved when he had the arrest, but as far as I know, he’s no longer involved. And the ICU consultants, they don’t really, I wouldn’t say that they really seek us out much. We tend to have to request meetings and so.
Patrik: Yeah, sure. Anything comes down to the quality of questions you’re asking. Often, families come to me and they say, “Well, we don’t get answers to our questions.”, and then I often say, “You’re probably not asking the right questions.”. Because it’s such a highly specialized area. You have a basic understanding by now, of course, because you’ve been watching this now for the last four or six weeks, but at the end of the day to get to the answers really comes down to asking the right questions.
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Patrik: Just the example that I mentioned to you before, like with the DNR, with the do not resuscitate, they mentioned it sort of when they’re passing by, but at the end of the day, they’re telling you if your dad’s heart stops again, we will let him die. That’s what they’re telling you.
Patrik: They’ll just phrase it nicely, “It wouldn’t be in your dad’s best interest.” If they’ve mentioned that, often they do.
Anna: Yes, they do. Yeah.
Patrik: Yeah. Right, right. But what does that mean really mean?
Anna: Yes. Yeah.
Patrik: What does it really? I mean, now your dad is in a position where they can ask him.
Anna: Yeah, absolutely.
Patrik: Are they brave enough to have that discussion with him? Those are the questions really.
Anna: Yes, exactly.
Patrik: So, is he, at the moment, is he off the ventilator already? Or has he had time off the ventilator yet?
Anna: Yes. He had a week off the ventilator-
Anna: And then he developed another infection and they put him back on it.
Anna: Back on, yeah. He is back on, but he is initiating a breath.
Patrik: Yeah, yeah. Yeah.
Anna: But he is back on the ventilator.
Patrik: Yeah. Okay. So, and he still has the tracheostomy in place?
Anna: He still has the tracheostomy. They said that his cough reflex is now so strong, but he is able, they are able to bring up an enormous amount of secretions and as soon as they do, saturation levels go up to a hundred.
Patrik: That’s great.
Anna: And, so he’s… Yeah.
Patrik: Is he coughing?
Anna: Yeah. He coughs, very strong cough. Yeah.
Patrik: Okay. So, look, if you want me to look into that, I have several options. As I said, I would need a little bit more information. You mentioned the propofol, but he would have had also potentially some other medications.
Patrik: Well, not potentially. He would have had some other medications and it would be very helpful to know what medications he’s had besides the propofol. It would also be very helpful to have a report from a CT scan.
Patrik: And it would also be helpful to get his current Glasgow Coma Scale. Do you know what? Have you heard of Glasgow Coma Scale?
Anna: I have, yes.
Patrik: Right. Would you happen to know at the moment what your dad’s Glasgow Coma Scale is?
Anna: Don’t know, no. Don’t know that.
Patrik: You don’t know. Okay. No, no. That’s okay. That’s okay. So, in terms of if you wanted me to look into that into more, in more detail, right? The best option to go about it, I have several consulting options.
Patrik: And one option, some situations that I do some traveling, people ask me to work one on one with them, especially in really life or death situations. And your situation, I know I can help you over the phone and I can help you very quickly once I have all the information.
Patrik: So, I have a seven day option, and that gives you seven days unlimited access to me, 24 hours a day, includes talking to doctors and nurses. But I do believe once I have all the right information, we can get to the bottom of things within an hour. That’s what, once we have all the information.
Anna: Okay, fantastic. Thank you, Patrik. Yeah. And, actually, I think we are meeting with the consultant today, so we will request all of the information that you’ve kindly flagged up and I’ll then purchase one of the packages.
Patrik: Yeah, absolutely. What I’ll do is I will email you the options in an email.
Anna: Thank you.
Patrik: Okay. You can just click on the links there and I can be available over the weekend. Right.
Anna: Okay. Well, thank you.
Patrik: There’s no problem there. Yeah. And I would love to help you with that.
Anna: Well, thanks ever so much, Patrik, for your time. It’s been very helpful.
Patrik: Wonderful, wonderful. And I will email you the options in the next 15 minutes.
Anna: Brilliant. Thanks ever so much Patrik.
Patrik: Okay. Thank you so much, Anna. Take care for now.
Anna: Okay. Okay. Let’s keep in touch.
Patrik: Okay. Thank you. Bye, bye.
Anna: Bye. Bye.
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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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
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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