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
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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
How Long Does it Take for My Sister to Recover from Hypoxic Brain Injury?
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 Mikaela, as part of my 1:1 consulting and advocacy service! Mikaela’s sister is with a tracheostomy
and is ventilated in the ICU. Mikaela is asking if she should trust her sister’s neurologist when he says her sister has no chance of recovery.
My Sister is Critically ill in the ICU & has Hypoxic Brain Injury. Should I Trust my Sister’s Neurologist When He Says My Sister Has No Chance to Recover in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Mikaela here.”
Part 1
Part 2
Mikaela: So, otherwise her heart is intact. I know that she’s blocked or anything or there was nothing in terms of her…
Dr. Toni: I think it sounds like it was a primary arrhythmia that caused it. Yeah. It just somewhat an electrical problem rather than a heart failure problem or as you say, actually stirred up or something like that..
Mikaela: It may. She did get the Pfizer jab. I’m just wondering whether that, because that does cause arrhythmia.
Joseph: Just a week before.
Mikaela: Was it a week before?
Joseph: Yeah.
Mikaela: Yeah. A week before she had it.
Dr. Toni: I find it hard to comment on that.
Mikaela: Yeah. No, obviously it’s not your..
Dr. Toni: It’s quite hard to prove cause and effect, isn’t it?
Mikaela: I just think it’s been made too quickly and it’s just, they haven’t gone through the proper clinical trials and such and it’s just…
Dr. Toni: It’s just quite
Dr. Toni: A separate debate. It’s a separate debate, isn’t it?
Mikaela: I accept that obviously. They’ve done what they can in terms of creating the vaccine to begin with, but if it’s going to cause complications and they don’t even know how it’s going to affect people. And this is one of the things. Arrhythmia that they’re starting to find out and more people complaining about it, so.
Dr. Toni: Yeah. I don’t, I find it… Yeah. It’s a separate debate. My priority is to do our best to get an assessment. But to be honest, I think you’ll find from our point of view at the moment, our input is going to be slightly limited by the medical things that are going on. We are assessing, but we’ll be able to do more…
Joseph: Can I just butt in Dr. Toni? Sorry.
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Dr. Toni: Yeah, of course.
Joseph: Yeah. So can I just ask some questions? Sorry.
Dr. Toni: Of course. Yeah.
Joseph: Yeah. So in respect of the stimulation, what is she actually getting?
Dr. Toni: Say again, I missed that, I apologize.
Joseph: The stimuli in the respect, what is she getting apart from nurses talking to her now and then? And is there any stimuli that she’s getting in that respect?
Dr. Toni: Do you mean in terms of…
Mikaela: So I guess.. I think she’s talking about the pressure points and such that the nurses do, just to see if there’s any reaction or..
Dr. Toni: They have a standard way of assessing GCS if you like.
Mikaela: Yeah.
Dr. Toni: What we are doing myself and Rinzzie is things in a little bit more detail on that. So we try with the range of trying to even just things like startle responses and threat responses and those kinds of things. A range of visual kind of things. If you’ve got photos and things we we’ll try and use things that are a bit more personal to her. I think Rinzzie did some photos with her.
Joseph: No. Nothing.
Dr. Toni: Sorry. I’m just trying… Yeah. It would be useful to have things like photos or things like that.
Joseph: This is what I’m saying and that nobody’s actually speaks to us about anything about the stimuli things. So the things that we provided is we’d done the headphones for her. The favorite songs that she wants, likes to hear and we recorded our voices on the machine.
Dr. Toni: Okay. Yeah.
Dr. Toni: And I think though the advice at this stage is doing those kind of more personal things is good in very short first. You’ll find that actually most of the..
Joseph: And also she’s not having any visitation either Dr. Toni.
Dr. Toni: Okay.
Joseph: So, I know I’m hearing everything negative from your point of view, but in respect of, I know what you’re saying. Yes, there is no responses from her that, from your assessments. However, what are you actually doing to stimulate her?
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Dr. Toni: In terms of what, the kind of things that I’m doing. So I’ve tried with a number of visual things. So first of all, I try and see if we can get her eyes open to voice or to sort of face touching and those kinds of things. If we can’t get her eyes open, we can facilitate eye opening and just sense that her eyes are open for short period in order to present sort of things like light, faces, photos, objects, and those kind of things.
We can try her with a.. Because she doesn’t look at things it’s difficult to try her with objects to put into her hands and those kind of things. But we can try with different types of touch stimulus. We can try with soft things and sharper things and different temperatures of things and those, and see if we’re going to elicit… But also to meaningful objects we can do as well. Hair brushes, photos, things like that, to see if she would move towards or oriented towards them. Noises and
sounds.
Dr. Toni: So I was with her yesterday. I was, just to see if she would respond to a loud clap on either side or at different points around. And again, we use things like, later on in assessments, we’ll use things like the noise of a baby, for instance, or those kind of things that are most likely to generate but also we would want to incorporate things like your voices. Things that would be personal to her and to the assessments as well. As I
say, at this stage, we can say she is got nothing, but she is also not medically optimized for the assessment. So what we do is a much more limited kind of thing. Usually people what we need primarily is rest and a low stimulation as possible at this early stage. And the way that when we go about assessment is actually to make sure there’s been an adequate rest period before. But then also that we get her as upright as possible for the assessment.
Mikaela: It’s just because obviously at the moment she’s having ..
Dr. Toni: To minimize other distractions and those kind of things as we do it, so. It’s difficult enough.
Mikaela: Yeah. Because with the thing.. You talk about the rest and stuff, but times that they’re weaning her as well. It’s a long process.
Dr. Toni: And it’s hard work for her as well. And that’s, it complicates the assessment. The weaning off a ventilator is physiologically very demanding.
Mikaela: Yeah, exactly. So, you have to appreciate that side as well.
Dr. Toni: Absolutely. That’s exactly what I was saying to you. We do a more limited assessment because we appreciate she’s not physiologically optimized to give a fair assessment to her neurological status just early on whilst there’s those other things going on. So we are doing bit of it, but we’re conscious that we’ll do more formal and actual sort of quantified assessments further down the line as far as we’re able to. And there’s a number
of different standardized tools that you can use to measure consciousness. But in a sense, if I measured her now and she’d come out at the very bottom of the scale and then you’d say yes, but she was weaning off ventilator at the time. Yeah, she was. So in a sense, there’s not that much point in doing the sort of standardized scales at the moment.
Dr. Toni: They’re really meaningful if they’re giving it true reflection or there’s no other confounds in it, if you know what I mean.
Mikaela: Yeah.
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Dr. Toni: So that’s what I’m saying. In terms of our input at the moment, it’s limited because of other things going on. And you can always say, although we’re getting nothing out of her, there might be confounding issues as to why that might be the case. We will try to grab periods where she is very stable and it has been very well to try and give a fairer assessment. And what I was sort of saying to you earlier is that maintaining somebody
medically stable who’s had this profound brain injury is usually very challenging. And usually what happens is people do get multiple medical problems as they go along the system, which makes getting a fair assessment challenging.
Mikaela: Yeah.
Dr. Toni: We’ll manage it as best we can. We’ve done it many times in the past.
Mikaela: So in terms of if she’s got no chance of recovery, what would be the next steps or the goals? Could we take her home or?
Dr. Toni: We can talk about that. Yeah. There’s a few… I don’t think, really, she is not safe to go anywhere at the moment, obviously.
Mikaela: Yeah.
Dr. Toni: We will also be looking into things like whether she can be sat and in what and how you get her from a bed to a chair.
Mikaela: Yeah.
Dr. Toni: We’d look at whether there’s any chance if she’s off the ventilator, whether she could manage without the tracheostomy, whether we could get her to a stage where her head control and ability to maintain an open airway are sufficient. We might be able to get the tracheostomy out.
Mikaela: Yeah.
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Dr. Toni: I’d say that’s probably not that likely, but it’s not impossible. And would definitely work towards that as a goal because having less tubes in you is a good thing.
Mikaela: Yeah.
Dr. Toni: I strongly suspect from long experience doing this, that what you’ll have is a very up and down period of her being in a bit more well for a while and being less well for a while. And it’s all going to be very difficult.
Mikaela: Up and down.
Dr. Toni: Yeah.
Mikaela: How about the…
Dr. Toni: That’s what’s going to happen.
Mikaela: How about the CT brain and the EEGs and the MRIs? I know MRI wasn’t done as such, but the scans, how often can… Have you done another one for a CT and EEG.
Dr. Toni: She has, the last CT she had was 2 weeks ago. I find scanning is very useful for diagnosis. There is no doubt on a CT scan. She had evidence of…
Mikaela: Yeah.
Dr. Toni: Severe hypoxic brain injury. There’s absolutely no point in scanning after that. It’s not useful for prognostication. We know she’s got clinical and radiological and electrical evidence of very severe hypoxic brain
injury. There’s no point in repeating the scan. That’s all we’ll ever find out from that. So further scans in my mind are of no benefit whatsoever. Unless something changed and you got worse for instance. And we worried that something else had happened neurologically. But my experience with hypoxic brain injury the damage is done. It’s done. If we scanned her, the changes on the scan will change over time as the brain injury matures.
Dr. Toni: But they’re very poor at predicting the future, which is what we want. The clinical assessments are much more accurate at predicting the future.
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Mikaela: Yeah.
Dr. Toni: The same goes for the electrical test, to be honest. Again, that’s useful to rule out seizures as again, as another confounder. But it is hard, if there was any worry about seizures, we’d repeat that. But again, it’s not going to give us any more information. It will show the same
thing again.
Mikaela: Yeah.
Dr. Toni: Doesn’t help. The clinical assessments are very helpful. And the clinical assessments over time are by far the most helpful. And again, even if we do something very standardized and very formal with her, again, it’s something that you might want repeated after an interval as well to demonstrate whether there’s been any change.
Mikaela: Yeah. In your opinion…
Dr. Toni: Okay.
Mikaela: DNR, is that something that you would advise for or against?
Dr. Toni: The concern would be, the reason why this gets discussed is that at the moment, she essentially has no independence and no ability to make decisions for herself. So the question about what to do in situations, the question you’ve undoubtedly have already been over many times in intensive care is what would she want in a situation where she’s likely to be living, if she survived? That would be with very severe disability. And the
question would be about resources, if she was to have a cardiac arrest again, it will worsen her hypoxic brain injury and she’s already in a state where she doesn’t have any independence or autonomy and it would make any chance of recovery which already goes, if I’m absolutely honest with you, even worse. And so that’s the question to be asked. The
cardiologists they’ll also say, what would be a likely mechanism where that might happen and if that’s happening again, is it something you can reverse? Is there anything we can do to stop it happening at another time and another time?
Dr. Toni: And whether… That’s the kind of questions that they’re asking. Most people in this situation would in my experience, most people wouldn’t want to be for resource in this situation. It’s a personal choice, but most people, I think most people have a limit of what they would want to survive with, if you know what I mean. For my mind, you’d go through lots of unpleasant medical treatment if you thought there was a realistic chance that
you would have some quality of life at the end of it.
Mikaela: Yeah.
Dr. Toni: But if the outcome is going to be that you won’t be aware of anything and essentially would be just looked after and having sort of ongoing medical care to maintain you in that state.
Mikaela: Yeah.
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Dr. Toni: In my experience, the majority of people wouldn’t want that and with a minority who would. That’s just my experience of the population of people that I’ve looked after over time.
Mikaela: Yeah.
Dr. Toni: And I have to be honest, everything you’ve been told, I absolutely agree with it. The outlook is among the poorest of anybody I’ve looked after on this scale of having disorders of consciousness.
Mikaela: Yeah.
Dr. Toni: No one’s pulling the wool over your eyes. It absolutely is the case. But we have a mechanism by which we can assess people and we’re happy to offer that if that’s what you think you would want.
Mikaela: Yeah, absolutely.
Dr. Toni: Yeah. So, but it’s going to be a very bumpy ride. It’s not a straightforward thing. It takes, it’s going to take a big chunk of time really.
Mikaela: That’s fine. And that’s something that we’re willing to take the burden with.
Dr. Toni: Yeah. And the question’s not really in a sense for you, it’s what she would want in this situation.
Mikaela: Yeah. Obviously you haven’t got the mental capacity at the moment. So this is why we’re speaking on her death.
Dr. Toni: It’s the best guess of what she would want essentially is what we’re trying to do.
Mikaela: I think, for medically, I think for you guys, it’s just more put yourself in our shoes at the moment, because obviously she hasn’t got the capacity to do that.
Dr. Toni: Okay.
Mikaela: So you just have to look at it from our perspective as what… Because we spend last time with her, we know the most, with all due respect.
Dr. Toni: And look, I can’t say what she would want in a particular situation. All I can do is ask you what you think she would want.
Mikaela: Yeah. And that’s all I ask.
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Dr. Toni: Even if that’s what you wanted..
Mikaela: No. What she would want. Yeah, no. I understand. Yeah.
Dr. Toni: Yeah.
Mikaela: So yeah, no. That’s fine.
Joseph: That’s it.
Mikaela: Yeah. That’s all right. I think there’s…
Dr. Toni: We’ll have a plan going forward.
Mikaela: Yeah. Please.
Dr. Toni: I think it would be really important to try and meet in the next couple of weeks properly. Now I know you’re not allowed to visit, but I do have some premises which is owned by the university. So I can get around. It doesn’t mean necessarily that you could visit her, but we can certainly get in a room and sit around.
Mikaela: Okay.
Dr. Toni: I think that really helps because we’re going to have to work together over a protracted period of time and we’re going to have to have a really good understanding of each other.
Mikaela: Yeah.
Dr. Toni: That’s a really key part of the process is that you trust us and we trust you and we’re all happy. What we’re doing this in your sister’s best interest.
Mikaela: Yeah.
Dr. Toni: And that we’re all happy with the plan and that we all have good ways of communicating.
Mikaela: Yeah, that’s fine. That sounds good to me.
Dr. Toni: We all appreciate each other’s points of view and those kind of things.
Mikaela: Yeah.
Dr. Toni: Otherwise this whole thing is going to be a nightmare.
Mikaela: Yeah.
Dr. Toni: So I think it’s important… I think we need a little bit more time to get a little bit more assessment over time. But I think also when you spend a bit of time with her just really taking you through what happens next over the next sort of six to 12… I’ve given you a little bit of an overview of it.
Mikaela: I just need more of an in-depth.
Dr. Toni: A little bit more.
Mikaela: Yeah. In terms of assessments and such. Yeah.
Dr. Toni: And talk to you a little bit about, when I’m talking about measuring disorders of consciousness, what that means and what that implies.
Mikaela: So, when we would see each other, for example, I’d like to see, documentation wise, if possible. How everything’s looking on paper, not just from what you say. With all due respect, it’s just..
Dr. Toni: Yeah. And I’ll do that with members of our team as well.
Mikaela: Yeah.
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Dr. Toni: Physio and Occupational Therapy. But I’ll try and team up a meeting with just the rehab team so as to do the sort of the… It’ll get a lot of input from a lot of therapists, but it’s also kind of will be in charge of the actual assessment of her neurological status and that kind of overview of everything that’s happening.
Mikaela: Yeah. Sounds good.
Dr. Toni: Integrating the sort of nitty gritty of her day to day cares and assessments.
Dr. Toni: Strategic kind of thing.
Mikaela: Is that going to be including whilst she’s in the ward as well? She’s still going to be there?
Dr. Toni: Yes. Yeah, absolutely. No. I’m with her until she leaves hospital, so.
Mikaela: Okay. All right. That sounds good.
Dr. Toni: We will at some point assuming that she gets that far down the line, we’ll have to talk about moving on from hospital as well. But that’s also an extremely involved and she talked about having a home for instance, but if she needs further assessment, how we go about doing that.
Mikaela: Yeah.
Dr. Toni: And what she’s like medically at the time. The other thing I didn’t want to mention to you is talking about the sort of cognitive and neurological assessment. One thing that has very much changed this week, which is a very common thing, is that, so everybody has spinal reflexes. If certain types of stimulus produce an automatic response and the thresholds for those reflexes are set by the brain. So the brain tends to do send signals
to inhibit reflexes, to stop them from happening. Certain types of reflexes your brain switches off, unless it needs them to be on. And after brain injury sometimes though that inhibitory signal will switch off from the brain because of the brain injury and certain reflexes will become more and more apparent.
Dr. Toni: And I’m starting to see that happen in your sister’s wrist and forearm and fingers. So you’ll start to see they’re developing a little bit of, not tightness at the elbows, but a bit of rotation around the elbow and a little bit of stiffness in the wrist and a little bit of stiffness in the fingers. And this is the spinal reflexes starting to come through because they’re not being switched off by the brains. That’s likely to get
worse over the coming weeks. And so we might be looking at doing things like, or probably will be looking at doing things like splinting, doing things to put stretches on and quite possibly medical interventions with either medications or injections into muscles, try and relax them.
Mikaela: Okay.
Dr. Toni: Nothing needs to be done right now, but I’m warning you that these things are going to start to get worse and you’ll develop in her… I can certainly see it coming at the end of her arms at the moment and wrist and fingers. And again, that’s something that’s likely to become more of a problem with time.
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Mikaela: Okay.
Dr. Toni: It’s another complication on the way. But again, we’re well experienced in managing this, but it’s tricky. And the pattern, and the hypoxic brain injury, the patterns have changed quite a lot in the early weeks as well. So it’s… Yeah. You’re trying to stop a moving target, if you like. You’re aiming at a moving target. So, but again, if we’re talking about doing any medical interventions, I’ll talk to you about what we’re planning
and why.
Mikaela: Okay. Yeah. That’s good.
Dr. Toni: Okay.
Mikaela: Okay. That’s fine.
Dr. Toni: It won’t be done right now, but it will be. I’m fairly sure that’s the problem that’s pending.
Mikaela: Okay.
Dr. Toni: All right?
Mikaela: Yeah. That’s great. Thanks for that Dr. Toni.
Dr. Toni: I will team up with our therapist a meeting with you and I’ll do it in a location where I’ve got some university premises. So we can, which don’t have the same restrictions because it’s not a clinical area, so.
Mikaela: Yeah, no. That’s fine.
Dr. Toni: Sit down for a good period of time and have a really good chat through everything and I’ll be happy we’re all going the same way. If you like, we’re all swimming in the same direction.
Mikaela: Yeah, that sounds good. Okay then, thank you.
Dr. Toni: Brilliant.
Mikaela: Cheers. Appreciate your time. Thank you.
Joseph: All right. Cheers. Take care. Bye.
Dr. Toni: Bye.
Hi Mikaela,
It’s Patrik here. It’s great that you’ve got a meeting with the neuro consultant today. If I was you, I would focus specifically on the CT brain and EEG. I can’t remember whether there was an MRI done. I would specifically focus on those results, but I would also specifically focus on what he would think is the long term outcome for your sister. What is his experience about long term outcomes for situations like your sister’s? And other things you should be focusing
on is would he recommend any neurology rehab for your sister?
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I would ask that, and even if there isn’t from their perspective as well, maybe if they think there is no chance of recovery, what do they suggest as a next step? Can they help you with getting your sister home? Can they help you achieve your goals? I guess that’s where I would focus on. I would also, maybe not ask directly but maybe you could ask directly whether they are of the same opinion and the ICU team, because if there is a discrepancy in opinion, you
might want to use that for your advantage.
Sometimes there is discrepancy in opinion. And you want to find out if that is the case or not, but in terms of long term recovery they should be the people that should be able to tell you what you can and can’t expect because they will be the people that see people outside of ICU. The other question that you may want to ask the neuro consultant is about the tracheostomy. Do they think that the tracheostomy might be removed down the line? What do they think about
that? Specifically do they think that your sister can maintain her airway, that she can cough, clear her secretions, all of that because your sister’s life without a tracheostomy would be much easier compared to, with a tracheostomy? So that’s what I would focus on in a nutshell.
Let me know if you have any other questions or if you want to get on the phone, take care for now.
The 1:1 consulting session will continue in next week’s episode.
