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 in ICU Shows Notable Progress But Why Is The ICU Team Denying It?
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 continues to improve in ICU and she goes on to fight for her dad’s life whilst ICU doctors are looking to give up on his case.
My Dad is Improving in ICU But Why Does the ICU Team Aims for Withdrawal of Treatment?
“You can also check out previous 1:1 consulting and advocacy(7) sessions with me and Anna here.”
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.
Patrik: They’re painting you all these doom and gloom pictures. I want to know from them, how many patients have you followed up in the community, who survived ICU? I bet the number is very, very minimal. You know what I’m saying there? Nobody’s following up with what’s happening after ICU. Nobody. They’re painting a doom and gloom picture for something they don’t know enough about. Did you follow the Alfie Evans case a couple of months back?
Anna: I did, yeah.
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Patrik: Yeah, so from my perspective, this is one of the prime examples in how the health system views disability or views long term care, whatever you want to call it. The whole argument, and look, we’ve worked with the family. I know way more than has been in the media. We worked with the family at the time. We’ve had access to medical records and whatnot, so I know a lot about the case. This has been the prime example for me, that there was a government on one end, or the NHS, who have huge concerns that if Alfie was to survive, that they’d end up paying for him for the rest of his life. That was 50% of the equation.
Patrik: For your dad, it’s very similar. Your dad is in a situation where he can’t leave ICU yet. They’re thinking about okay, if he was to survive ICU, what might his life look like? We don’t know, but he’s alive. He’s alive. That’s what matters at the moment and with another three, four weeks in there with stimulating him, with giving him the nurturing, he might come a long way. He’s already come a long way.
Patrik: I remember when we first spoke on Friday, or on Saturday, I do remember, and also reading through your email. When I read the first four weeks, I just think oh my goodness, where’s this going? Then all of the sudden your email changes, and then he opens his eyes. Bang. Your story or your Dad’s situation really changed from really knocking at death’s door and then against all the odds, he’s opening his eyes.
Patrik: If your dad’s time was up, he would have had every opportunity to go. Every opportunity. I don’t think I can recall in nearly 20 years ICU, I don’t think I can recall seven cardiac arrests of someone in ICU. I’ve seen a lot of things. I don’t think I can recall seven cardiac arrests for someone and surviving.
Anna: Oh my gosh. Okay.
Patrik: He had every opportunity to leave this planet. I don’t want to be going into the whole spiritual, potential religious, but there is an aspect of that, too. The way I look at death in ICU, and I’ve seen so many, the way I look at death in ICU, is if your time is up, your time is up. There’s not much people can do, but your Dad’s time, the way I look at it, and with the information that I have, it’s not up. There’s a reason why he’s here.
Anna: Okay, yeah. Yeah, that’s what we feel.
Patrik: Now looking at more practical steps, I do believe a neurologist will be important. I’ll tell you why I believe the neurologist will be important. Number one, the ICU is negative, and there’s a chance the neurologist might be negative too, but there’s also a chance the neurologist might say, “Yeah, I’ve seen this before. This is where we need to go from here.”
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Anna: Okay.
Patrik: Most of the time, when there are different specialties involved, whether it’s a neurologist, or I think we mentioned briefly the cardiologist, that’s all important. Most of the time they’re working together, and they often have the same point of view, but not always.
Anna: No.
Patrik: I do believe a neurologist is absolutely inevitable. It’s not optional. The question that I’m asking here is, what do you have to hide in there? Why are you not getting a, why are you making it difficult for you, or for the family, to get the neurologist in?
Anna: Absolutely, yeah.
Patrik: What do you have to hide? How big is this hospital? Is it a big hospital?
Anna: I would say it’s a, for example, I know Patrik you said you’re actually in Manchester. It wouldn’t be on a scale like that. It does cover a large portion of the county. It is a teaching hospital.
Patrik: It is a teaching hospital?
Anna: Yes, it does.
Patrik: Okay.
Anna: Medical School is attached to the hospital. I would say it’s not on a scale of Manchester, London, not that. It’s a step down.
Patrik: Right, right. The reason I’m asking is, if it’s as teaching hospital, there must be number one, there must be a neurologist in the hospital.
Anna: Yeah.
Patrik: Right, so there is no reason for them not to have a neurologist on their team if they need to. Clearly, have they mentioned multi organ failure? Is that a term you have heard?
Anna: Yes, they did originally when they said, when he had the cardiac arrest. They said they think he’s in massive organ failure now, given that his lungs are failing, his kidneys are failing, and now his heart’s failed.
Patrik: They were right, but at the moment, he’s okay. His heart is fine. His kidneys seem to be fine. His brain is not fine, and his lungs are not fine. Well, one could argue, well it’s still double organ failure, with the brain and with the lungs. One might argue it’s double organ failure, but they can’t be saying it’s multi organ failure. He’s gone from four organs failing, kidneys, heart, brain, and lungs, now down to two organs. Often, the term multi organ failure has often been used to justify a withdraw of treatment.
Patrik: At the moment, your Dad is not in multi organ failure. You could argue he’s in double organ failure. Do you know where he’s at in terms of ventilation? Do you know whether he’s being weaned?
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Anna: Sorry, my brother’s just joined us.
Patrik: Yeah, sure. Yeah, hi.
Corey: Yeah, I saw my dad yesterday, and they are trying to have a go at weaning him off the ventilator yesterday.
Patrik: Sorry, I can’t hear you. Sorry.
Corey: Sorry. They had a go at weaning him off the ventilator yesterday without much success. But he’s on quite a low setting, I think, in terms of pressure support. The staff they tried to see how he would react.
Patrik: Do you know the settings by any chance?
Corey: Not precisely, no I’m afraid.
Patrik: That’s all right. Do you know whether he’s making every effort by himself? Do you know whether he’s in a ventilation mode that’s called CPAP or pressure support?
Corey: No. I do know that he’s initiating a breath himself.
Patrik: Right.
Corey: Yeah.
Patrik: Go on, go on.
Corey: No I’m finished there.
Patrik: The reason I’m asking is, if he was to breathe in a mode, in a ventilation mode where he’s doing most of the work himself, again, I would argue that if they want to stop treatment that would be euthanasia.
Anna: Okay.
Patrik: If he’s breathing by himself on the ventilator, all it means is he has to trigger every single breath, and then he gets support from the ventilator, but if he’s doing that, he’s probably fairly close of coming off the ventilator, or let’s put it that way, there is a chance he will come off the ventilator, and again, it’s a sign to me that number one, he has a chance of recovery. Number two, if they keep talking about withdrawing treatment, it’s another sign to me that they simply don’t want to give him the time.
Anna: No, absolutely.
Patrik: It would be very helpful to know what ventilation mode he’s in, because they I can tell you, is he on a lot of support or is he on minimal support, which again would be another reason why they can’t just stop treatment.
Anna: Yeah, okay. We will find that out.
Patrik: Just send me a picture of the ventilator. Just take a picture of the ventilator and send it to me.
Anna: We can do that.
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Patrik: Absolutely. Coming back to the coma, it’s easier said than done. Be patient. Be patient with your dad and just keep telling them number one, you want the neurologist. Number two, you want to give him time. Your biggest argument there, is you mentioned to me that he would want to live. He would want to fight. That’s one thing. It sounds like he has lots of things to live, lots of things to go for, and that a diminished quality of life with his family, would be acceptable for him.
Patrik: Those are your lines of argument. It doesn’t really matter what they think is acceptable, because they keep coming back and they keep saying, “Oh yeah, it’s not in his best interest Blah, blah, blah.” Well, it’s not for them to decide what’s acceptable for your dad or for you as a family. It’s not for them to decide.
Anna: Okay. I think that’s helpful Patrik, because it’s always been put to us that they will make it as a medical decision. They’d look it’s explicit to us, but they will make it a medical decision, and that they will try to take our feelings into account, but if necessary, they will always make a medical decision irrespective of what we think.
Patrik: That will always be their standing. That will always be their line of argument. You keep coming back to, and I don’t want to dwell on this, but especially if you look at the Alfie Evans case. That was always their line of argument. Their line of argument was always, oh we are the ones acting in the best interest of Alfie. That was always their line of argument, which I believe was totally and utter nonsense. That’s their fallback position.
Anna: Yeah, absolutely.
Patrik: Your fallback position needs to be, we’ve discussed this with our dad in the past, that if a situation like that comes up, these are my Dad’s wishes. That is your position. You look at somebody like Alfie Evans, a toddler, he couldn’t be asked of course, but your dad is an adult. It sounds to me like you have brought this up with him in the past, but also, you could also argue now that he’s slowly, slowly improving. You could also say to them, hang on a sec. We want to get our dad more awake, and then ask him what he wants. Let him make the decision.
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Anna: Yeah.
Patrik: That could be another line of argument for you. Let him make the decision and not anybody else. Here is another important thing for you to understand where what I believe people need to know, and where even ICU’s are very limited. Besides the consulting side of things that I’m doing here, I also own and operate a home care service, home care nursing service, intensive care at home and we actually look after long term ventilated or otherwise medically complex patients at home, that we take out of ICU.
Patrik: This is a very different setting. It’s happening in Germany, for example. It’s happening here in Australia. It’s not happening in the UK yet. I have a very different perspective on what’s happening outside of ICU, because I actually know what’s happening to many ICU patients outside of ICU. They don’t have that view, and I also argue, let’s just say God forbid your dad might approaches end of life. Even if he was to approach his end of life, why should he approach his end of life in ICU? Is there a better environment for him? I’d argue there is.
Anna: Yeah.
Patrik: It’s all about perspective. They’re trying to sell you a one size fits all approach.
Anna: Yeah.
Patrik: By not getting a neurologist in, for example, they will continue with that one size fits all.
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Anna: Absolutely. Yes. One of the things that we strongly, continually ask for, is the neurologist to come in. We get the impression that the consensus among the ICU consultants is that, we find the neurologist a bit of a pain.
Patrik: Yeah, absolutely.
Anna: Or, they come in, they then say we need to do this test, we need to do that test. They said, they’ll say straight away you should have done an MRI at the beginning, and they said obviously now we can’t, so that’s just that. The consultants that we met with the day before yesterday, he made it very clear that they didn’t have any plans, obviously as I’ve explained to you, they’ve done a pacemaker. They started to think maybe they could remove all together, because the data’s showing, it doesn’t appear that dad really seems to use it. They said we can’t remove it, and that’s why we can’t do the MRI. He said the only other plan would be to actually effectively do the surgical procedure, and put an internal pacemaker. He said that would obviously take weeks, and he said something about, it would then, they would need to do a six week delay before they could do that MRI.
Patrik: Yeah, it does make sense that there certain, the MRI, definitely even if you remove a pacemaker, there is a delay. It’s probably accurate what they’re telling you there. I think the MRI’s not going to make or break your dad’s situation. It probably would be helpful to have one, but it’s not going to make or break your dad’s situation. What you see, his response, is way more important than an MRI for example. It would be helpful for sure, but it’s not going to make or break. You’ve got the CT. When was the last CT again?
Anna: The CT scan was probably about two weeks ago?
Patrik: Two weeks ago. Okay.
Anna: Yeah.
Anna: Twelfth of June. Yeah, about two weeks ago.
Patrik: About two weeks ago?
Anna: Yeah.
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Patrik: Okay. All right. Do you remember, I think I sent you an image? Have I sent you an image with the Glasgow Coma Scale? Have I done that?
Anna: Yeah, you did, thank you. Yeah.
Patrik: Have you looked at that?
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.
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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- How to ask the doctors and the nurses the right questions
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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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