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
Will my Critically Ill Sister Ever Wake Up and Recover from her Severe Brain Injury in the ICU?
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 in the ICU and is now off the ventilator. Mikaela asks what they need to do if the ICU doctor wants them to withdraw treatment for their critically ill sister with hypoxic brain injury in the ICU.
What Should We Do if the ICU Doctor Wants Us to Withdraw Treatment for Our Critically ill Sister with Hypoxic Brain Injury in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Mikaela here.”
Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8
Mikaela: It’s not the EEG.
Joseph: No, no, no. It was definitely an MRI scan or CT scan.
Dr. Rich: An MRI would be something that..
Joseph: Yeah.
Dr. Rich: Okay.
Joseph: Yes.
Dr. Rich: Sorry, that would be…
Joseph: So, it was the CT scan or something, and they just needed to check where this pain came from, because she hadn’t had it since-
Mikaela: So it was the CT, yes?
Joseph: Yes, it was the CT.
Mikaela: Yes, sorry.
Joseph: So, that was… Initially, the first week, she had about two, three seizures, and that stopped completely. And then, all that time, then I think it was last week when she had the seizure and they did a CT scan. And they said there was a bit of shrinkage on her… Was it on the right side
of the brain? I can’t remember.
Mikaela: They managed it with Keppra at the moment.
Joseph: And she’s not having any more seizures.
Mikaela: No, no.
Joseph: So, what does that mean, the shrinkage side of her brain?
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Mikaela: I don’t know what they mean by shrinkage. She’s got damage to areas of the brain that have been starved of oxygen on her scans. Which particular area was that? I know you said they were global, but is there more in a certain area than in another area?
Joseph: Yes.
Dr. Rich: They sound to be in structures that are far from the blood supply, and with that, you tend to see things like basal ganglia in the deep white matter of the brain. I think, it’s the deep white matter, essentially, the outside of your brain is crowded with a lot of brain cells, and the inside, the interior bits where they wire up together, essentially. So, there was injury in some of those deep white matter tracks. I can’t remember
specific… I’ve got to look up the scan. But there was definitely injury on there, it definitely looks like a classic hypoxic changes if you see changes.
Joseph: So, what’s the difference between an MRI scan and a CT scan?
Dr. Rich: Mostly the resolution, I would say. You see things in slightly finer detail on an MRI than you would on a CT. The CT’s primarily done to look for things like a big stroke, or a tumor. It’s only going to pick up obvious abnormalities, for-
Joseph: And the MRI gives you a more intensive image of the brain?
Dr. Rich: So, it probably gives you a bit better resolution. Some things, I’ll see it better on the CT. For instance, some kind of.. I’ve seen it better on the CT or the MRI, but the things like hypoxic brain injury, for
instance, you’d see better on the MRI, but we can see it on the CT. And we don’t have a diagnosis.
Joseph: I don’t think she’s had an MRI before, though.
Dr. Rich: The CT scans, at the end of the day, shows the much not used prognosis. They’re not really good at predicting what someone-
Mikaela: Like the brain damage.
Dr. Rich: Yes.
Mikaela: That’s what we are doing now to help her get..
Dr. Rich: We know there’s a brain injury, we know of course, it is very obvious, and the scan finding match what we commonly see in somebody with hypoxic brain injury.
Joseph: So, when it comes to… Sorry, I’m asking so many questions.
Dr. Rich: It’s all right. No, you’re good.
Joseph: So, the MRI scan, I’m just wondering, is there… Can you see activity going on for her brain?
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Dr. Rich: No, all we can just see are images.
Mikaela: Doing an EEG would give you that, though, right?
Dr. Rich: It does, in a really gross way. It doesn’t tell you which pathways are working, and which aren’t at all. You’re measuring a global output, at the end of the day. We know what normal brain activity looks like in sleep and wake, and those kind of things.
Mikaela: Does she do a sleep wake cycle?
Dr. Rich: Yes, she does. Yes, definitely, yes. As people in their vegetative states do, so, you have appearance of eyes closing, eyes opening.
Mikaela: Where did you find that the most? Is it inconsistent, or is there-
Dr. Rich: This is partly we have to do the assessments over time, because there’s no way of predicting when someone’s going to be at their most. Normally, with your normal melatonin hormones, as you wake up in the morning, your wakefulness goes up, and then towards the evening, it starts to taper off. And in the evening, you get a little bit more drowsy as the light goes down until you feel tired enough to go to bed. But because she’s
in the hospital and with the brain injury, it’s going to play with her sleep patterns, because it’s never truly dark in a hospital. That’s part of the problem. It’s never truly dark, and the brain’s really light sensitive.
Joseph: And the noise, as well, Sorry, I’ve cut across you. The noise is always continuous, there’s machines going off all the time, and of course that will affect her sleeping patterns.
Dr. Rich: Yeah. She will have a sleep wake cycle, and it’s really hard to predict.
Joseph: Yes. At times, she is quite alert when we’re talking to her some days, isn’t she? She’s looking and keeping her eyes open. And the other days, she just falls asleep.
Dr. Rich: I don’t know what she can see yet, as well. She has this pattern of rolling eye movements which you often see in blind people, and I don’t know whether it’s just she’s not processing visual information, or whether there’s actually just… She’s had hypoxic damage to her brain, you can also get hypoxic damage to your eyes.
Joseph: Can you not tell whether she’s looking, then? Is there no..
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Dr. Rich: Because she doesn’t vocalize, she doesn’t fixate on an object or on your eyes consistently, and I don’t think she does. Because she has these rolling eye movements… Sometimes, they stay settled somewhere. Several times, I thought she was looking at me, but at certain times, we’ve noticed her eyes stay there, or they just drift off again.
Dr. Rich: I do wonder whether there’s been any damage to her actual eyes, and whether she can see. She is able to perceive light, she can definitely perceive light, but for instance, if her eyes are open and I do something like that, she doesn’t blink, so..
Joseph: She doesn’t?
Dr. Rich: No. So, I don’t know whether that’s because she can’t see, or whether it’s just not processing all the information. I don’t know, but I wonder whether visual stimulation is not the best… Is that going to be a fruitful way of getting to her. I’ve certainly seen it in people that would’ve made a recovery from this, which they’ve actually got a very severe visual impairment as a result of the ischemic injury that she’s had, so
it’s hard to tell. But it’s just something that was occurring to Rinzzie and I as we’ve been doing the assessments.
Mikaela: How are her pupils, as well? Are they responding to light?
Dr. Rich: Yes. She’s having pupil responses, but she has got light perception. How much she’s got beyond that, how good her perception is, I don’t know. It might be completely normal, but she’s just not processing the visual information. So, the problem could be further down the line. I don’t know. But we try every senses, we try auditory, tactile, all sorts of things. So, that’s where we are. Does that give you an idea of what our steps very
much necessitates? I’m going to have to ask, what’s your expectations from all of this? What are you feeling, or what’s your thoughts on this whole?
Joseph: We’re just hoping that there will be some improvement, because we still feel that it’s still early days in the sense it’s 6 weeks, and… So, it’s coming… We’re seeing slight improvements in the sense that she’s more alert when you’re speaking to her.
Joseph: Yes, and we’re seeing the slight improvements, and I’m hoping that those slight improvements accumulate a bit more, but not… I know we’re not going to get the same person back ever again, we know that.
Mikaela: You can’t put a percentage on it, either, of how much we’re going to get back.
Joseph: You can’t put a percentage on it, because we don’t know what that’s going to look like in the sense… We have no idea. You don’t know either, and we’re just keeping an open mind, really, at the moment. We’re keeping quite open mind, and we’re taking what comes to us, and whatever it’s going to be presented to us.
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Dr. Rich: Just a question, and I know it’s hypothetical, and it’s difficult, but if she doesn’t improve at all, for instance, from where she is at the moment, we get nothing else in improvement in terms of her thinking skills, her independence, what do you think she would want, in that situation? Obviously, she can’t tell us. No-one really thinks about and nobody mentions that.
Joseph: Are you thinking six months’ time, or 12 months’ time?
Dr. Rich: Say within six months or 12 months, she’s still just the same.
Joseph: Realistically, six months, I think, is not a lot for me. I’m looking more at the 12 months.
Mikaela: I think because when they initially put it to us that it would be a long-term prognosis, that that’s what we’ve gone with, and that’s what we’re still remaining with, and it’s not going to change. It’s just because we know the likelihood of the situation, and how… The severity of the situation, and how severe it is. We’re willing to take that to bet, and we have been doing since the get-go, so whatever may come, like she said, we’ll
just take it on the chin. Where we can help her, we’ll help her, as well, with your assistance.
Dr. Rich: Okay. I guess, I’m asking that because medical complications could come, and if they come at a stage where a lot more time has passed, say, and you haven’t made any improvements, or if there was maybe complications that were going to have long-term effects on her outcome from all of this, that it’s actually going to make the brain injury worse than it already is, do you think she would want to survive in a state of being extremely
dependent, and not being able to make choices about the world?
Joseph: I hope she’s not going that way, but if we feel that she’s suffering, then obviously, we need to look at something.
Mikaela: Yes, we’d have to look at..
Joseph: We’d have to revisit that, because we can’t make her suffer.
Mikaela: Our belief goes against that completely.
Joseph: I don’t want to see her suffer.
Mikaela: Yes, in our culture and our religion and stuff, we can’t endure any form of suffering for anyone, for any human being. So, whether that be our sister or whatever, or husband, it’s another human being, so..
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Dr. Rich: At the moment, on a day-to-day basis, I don’t see her being in distress. There are no avert signs of distress about things. I do worry, and I mentioned it, when I’ve done things like injections or I’m doing procedures, that does seem to be something that may put her in distress.
Joseph: Yes, and like the tracheostomy. When the nurse is cleaning the tracheostomy, I can see she doesn’t like it, and it upsets me, as well.
Dr. Rich: That’s what I thought about. I’m not asking for decisions..
Joseph: Yes. No, no.
Dr. Rich: Yeah.
Joseph: Yes, I just-
Dr. Rich: It helps us to know which..
Joseph: As long as we know that she’s suffering, we can’t bear it.
Dr. Rich: Yes. There’s nothing, in that sense that can be done at the moment, because she’s relatively quite stable, but there will come times where she isn’t, and it’s going to require some medical interventions for sure. It could be more heart problems, or it could be a thrombosis. Something that we need to anticipate. It will come, because they always do. That can be anything from minor things that she could deal with on the ward to
things that land somebody heading back towards the critical care unit, or requiring those kind of supports. My feeling tends to be that if we’re doing something which is causing a lot of distress, but we’re quite sure that, in an already fairly bleak situation, what we’re doing is going to make the situation in the long term even more bleak, we struggle ethically to think that that was a good thing to do for somebody. I’m not asking for answers, because I don’t have them either, but..
Joseph: At the moment, we just… I just feel like it’s too early to make those decisions, and I’ll just give her a bit more of a chance to..
Dr. Rich: That’s what we’ll do. I have to be honest, everything I’m seeing at the moment really worries me about this situation. I think out of all the people I’ve looked after, even with disorders of consciousness, she has got so many things that are waving a red flag and telling me this is not going to have a happy ending in the end of this. But I think there’s a huge amount of concern. I think you’ll probably see her doing more things
spontaneously, but in terms of that step up to actually being able to interact and control her environment or interact with people or objects, or make decisions, everything I see at the moment… It looks really unlikely. And I’m only being honest.
Mikaela: Yes, but we see that as well. No, we do see that. Yes, obviously, but..
Dr. Rich: And even a good recovery and even if she really exceeds our expectations, it’s going to be a really different life to what was before. It’s a very dependent and disabled kind of life, and… Yes, but I’m just asking the question.
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Mikaela: I think that’s something that we’ve always been prepared for, yeah.
Dr. Rich: Sometimes, the medical complications come often, and actually, there’s no choices to be made, there’s nothing you can do in this situation, because she’s got such a bad brain injury in the first place.
Dr. Rich: And in terms of her feeds, actually, my experiences getting the feeding tube in earlier rather than later gets them over the hurdle. Probably, in the longer-term, it actually prevents more complications than it might theoretically cause. And actually, if you leave the nasogastric tube in for a long period of time, it tends to cause problems eventually, so I think it’s inevitable. And I think she’s going to need one, so you might as
well do it now rather than later. I think we should have an aim towards getting a PEG. Even if it’s an aim, it might not end up being an option if she hits lots of medical complications, because it’s messy, but that’s our aim. And also, you’re giving me a timescale of six months, whatever, that you need as a family. My experience is that families… It’s really hard to get your head around. I find it hard. There’s things about what is going on in my experience, but also, ethically, what’s more
likely to go wrong in this situation is very different to somebody who’s in a wheelchair, because of their physical needs.
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Dr. Rich: It’s a philosophical thing about what it means to be human, and what it means to be… What brings meaning to your life, what brings quality to your life, and we ask very profound questions about that. And actually, it’s the same experience from 16 years. I’m not sure I’ve still got my head completely around it, but I’ve got a lot of experience of doing it. And it takes families a long time to really understand it. You’ve got to live
and breathe it for a while, and you’ve got to see it. And COVID has made it more difficult, because the amount of time you can spend with your loved one. I think you need family time really. So in your loved one’s situation now, when you think about it, and then you think about it the next day and you have a
slightly different take on it, and it just takes time to understand it and to get your head around it, really. I just hope that your ideas about what’s right and wrong for her will crystallize, I think, with time. That’s what I think.
Mikaela: That’s all we ask, really.
Dr. Rich: I think we’ll probably be… I’ll give a bit of time, and really..
Mikaela: Understand.
Dr. Rich: Understand and know what the right thing to do is. Of course, it’s already been a bit bleak, it’s a horrible situation.
Mikaela: Well, it’s not really in that sense. You’ve explained it quite clearly and it was good, I’d say.
Dr. Rich: From my point of view, because I must say, I’m a rehab person, but most of what I do is trying to get people’s independence back. And at the moment, I don’t think she’s very likely to have options because of the medical complications along the way. So actually, I can give you a very bleak picture of things, but I’ll tell you what we can do, what we do in this situation, and how we bring some measurements, some actual objective
measurements into the situation. At the moment, it’s just trying to really be crystal clear on where we are on that, and what kind of things are changing, and share with you some of the tools that we use. I think I’m going around in circles a bit here.
The 1:1 consulting session will continue in next week’s episode.
