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
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 Rosie, as part of my 1:1 consulting and advocacy service! Rosie’s dad is with a tracheostomy and is on a ventilator in the ICU. Rosie asks how she can keep her dad in ICU if they will push him out to LTAC.
How Can We Keep Our Dad with Tracheostomy in ICU if They Push Him Out to LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Rosie here.”
Patrik: Yeah it depends. Because he can’t move it will be challenging for him to be weaned off the ventilator, right? So you got to picture this, there’s sort of three ways how people leave ICU and let’s just quickly look at those three ways so you understand what that might look like. The first way for someone to leave ICU is you get them off the ventilator and you move onto a hospital floor, that’s the best case scenario. The second way is for people to die, that’s another way to leave ICU and the third way is for people to have a trach and especially where you are patients often end up in LTAC have you heard of LTAC?
Patrik: Right. So patients end up in LTAC. If they end up in LTAC, there can be many weeks sometimes months of weaning off the ventilator right? So that’s why a timeline is very hard to say, I would argue your dad can only come off the ventilator, once he can start moving again, right? So the physical therapy, almost needs to be first. Needs to go hand in hand. But you know the physical therapy first, starting again with arm movement leg movement then starting with breathing exercises. Starting with simple things like sitting on the edge of the bed will be a massive challenge going forward.
Patrik: So, that’s why putting a timeline on this is very difficult. I’m always saying to families like as much as you would like to look into the future, ICU is take one day at a time. It’s a difficult situation and you’ve already been very patient and I believe your patience will be stretched to the limit.
Linda: Yeah so in terms of some things we can discuss with his doctor and his team, so you talked about nitric oxide, Epoprostenol.
Linda: Epoprostenol so definitely a no, so we’ll talk about this. The Viagra like you said, it’s a tablet that’s not going to work.
June: Well they can still try it. Put it in the-
Patrik: They can still try. If he comes off the Nimbex his digestion should improve.
Linda: Yeah so these are … What other things could we be asking or looking out for that we haven’t done?
Patrik: I’m sure he’s been on steroids.
June: Yeah he was yeah.
Linda: He was.
Patrik: Yeah I’m sure he’s been on steroids so you can tick that box. There’s probably not much more that I’ve come across for ARDS besides, prone position now the Remdesivir for COVID ARDS, nitric oxide, epoprostenol, Sildenafil and then ECMO. The other thing again probably not an option but again I do believe you should know that for younger patients in particular that it’s sometimes maybe considered as an option is a lung transplant. But for a lung transplant, again usually the cut off is sort of 60 years of age, 65 years of age. You would have to go, again you would ECMO to bridge that time right? So just for transparency, I do believe my job is to educate families because I do believe ICUs are not telling everything that is available to them.
June: Okay. So, if we were looking into the future, one year, two years, what does life look like for him?
Patrik: Yeah. Okay, I can tell you that ICU professionals including myself, are not good in telling you what life outside of ICU looks like. I can give you a couple of examples though where I do have experience what life looks like outside of ICU. But that’s not a scenario that I believe is the best for your dad. So, part of the businesses that we are running here, is we are running a service Intensive Care At Home, right? We are looking after ventilated patients at home. Some of what we’re doing there is palliative care, end of life care.
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Patrik: So that is what life might look like, but before you even go down that track, you can only really go down the track of intensive care at home, if it has been proven beyond the shadow of a doubt that your dad can’t be weaned off the ventilator and that’s in the future, right? For anybody else that does come off the ventilator, I am not the expert on what life looks like 6 months, 12 months, 2 years down the line, I’m not the expert on that.
Patrik: What I will tell you is this, pre COVID, the research in ICU shows about 90% of ICU patients survive and leave intensive care alive that’s 9 out of 10 patients. So, the odds are in a patient’s favor generally speaking, okay? Now when someone leaves intensive care alive, that doesn’t talk about quality of life, we’re just looking at pure survival. We’re not talking about what does life look like three months down the line, six months down the line, two years down the line, so that’s not part of the statistic, right?
Patrik: With COVID, I do believe the research is yet to come. I do believe from what I’m gathering, the COVID survival rate in ICU for ARDS in particular is less than 90%, that is what I’m gathering. I’ve read some research now talking about a survival rate of probably 50% for COVID ARDS.
June: Survival rate of 50%?
Patrik: Roughly from what I read. But the numbers keep changing because even though COVID has been around now for a year, it’s still new.
Rosie: So in your experience that you have in the ICU from the beginning of the situation to now, what do you think that outlook would look like considering everything else they’re trying to do, and so on?
Patrik: Yeah, let me ask you this as a family and this is a question for you as a family really. Let’s just say your dad can’t come off the ventilator but he’s alert, he could potentially spend some quality time with you as a family but inevitably he wouldn’t come off the ventilator, is quality time for you and your dad important even though it might be end of life at home? It might be end of life in a different environment? What’s important for you? Is it important for you that your dad is around? What would he want? It’s not a simple question to answer.
Patrik: Would you want him to get out of this coma, spend some quality time with you, could be days, could be weeks, it could be months, but he will inevitable not be able to come off a ventilator? Those are scenarios that could unfold and then the question is what is important for you, for your dad, as a family? That is a question only you can answer.
June: So Patrik it’s a difficult question to answer for us too because we don’t … So no one can say, okay well there’s a 90% chance he’ll be on the ventilator forever, right? No one knows right?
Patrik: No one knows.
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June: So how can we make that decision? If it’s 50, 50 then we say, well you know there’s a 50% chance he’ll be without a ventilator so we just don’t know. It will take a year to be right?
Patrik: Absolutely very difficult to figure out. That’s why I’m saying, you know as much as we all want to predict the future at the moment my advice is, take one day at a time.
June: Yeah, that’s what most of the doctors have been saying.
Patrik: Yeah that’s a terrible thing to even say but you know recovery in ICU is or can be a marathon not a sprint.
Patrik: Recovery also could mean there will be set backs, there are uncertain … We don’t know what that picture will look like in the end. There are no quick fixes, no quick answers, it’s just about really trying to educate you on okay what might the future hold? Unfortunately all they need to do for now, is they need to stop the Nimbex.
Patrik: When I look at your situation or at your dad’s situation the first thing and as you all know, they need to get rid of that Nimbex.
Patrik: Because only then can he make progress.
Rosie: Then I got another question for you. So we talk about LTAC sub-acute, acute facilities, if he does get out, he needs to go to a recovery center. What do you recommend? Because I know LTACs are not too good, sub-acutes are not good, acutes are not really good. What needs to happen after that?
Patrik: Now, I’ll tell you what needs to happen ideally. If he wakes up, if he can get off the Nimbex, he can get out of the coma, can wake up have some neurological function, the ideal scenario from my experience is leave a patient in ICU until they can get off the ventilator. That is the ideal, well the best case scenario I believe. Once he goes to LTAC … So at the moment in ICU as you might have seen, he’s got one nurse for one patient or one nurse for two patients at the most. The minute he’s going to LTAC-
Linda: That’s one to four.
June: It’s one to four right now.
Linda: One to four.
June: It’s one to four right now.
Patrik: That’s probably because of COVID.
Linda: They’re so overwhelmed they don’t have nurses enough to cover.
Patrik: Oh my goodness.
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Rosie: They have only 10 beds.
Patrik: Right so reasonably small, okay.
June: They’re bringing in doctors from the other hospitals.
Linda: Yeah they probably … Because even our dad is in a makeshift ICU right now. So they may have 10 in the regular ICU who knows how many they have.
Patrik: Yeah how many makeshift beds yeah sure. But the other challenge that you might have as your dad based on my understanding is, he can only be having treatment from this facility where he’s in, would I be accurate to say that?
Patrik: That’s all great if it’s something straightforward but your dad he’s no longer straightforward.
Rosie: Yeah because they recommended, a couple of sub-acute facilities, LTACs they didn’t really come into play. So if you look at sub-acute and an LTAC, he’d probably rather go to an LTAC versus a sub-acute. But I mean pretty much the options that we had after the fact were sub-acute facilities.
Patrik: Right. Then you need to be very mindful there with sub-acute facilities as well, that they might send you to a facility in other location, sometimes they don’t even have the sub-acute or an LTAC In that particular location where you are in and then patients will be sent to other facilities, it’s horrible.
Rosie: So, I mean what is your recommendation on the aspect of the LTAC and acute and sub-acute, where does he need to go after that fact? Because I know ICU maybe I mean once he’s stable, a week, two weeks, and then they’re going to end up moving him down right? So, it’s either going to be moving him to another floor for a couple of days or they’re going to want to move him. So, once we get into that situation, what do we do?
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Patrik: Yeah. My advice generally speaking is stay clear of LTAC stay clear of sub-acute, I give you the reasons why? So at the moment he’s got ICU doctors, ICU nurses, respiratory therapists, so he’s got expertise that he needs. The minute he goes to LTAC, the expertise will go out of the window literally right? The patients that go from ICU to LTAC are still sort of critically ill and a lot of them bounce back to ICU because they’re not well enough. They don’t the expertise at LTAC.
Patrik: If you look up LTAC reviews, if you pick individual LTACS and you look up their reviews online they’re pretty bad. LTACs from my experience as designed to save money they’re not designed for clinical need. It’s a money saving exercise.
Rosie: Can you suggest a tactic where we can force their hand?
Patrik: Yeah. The tactic is to, and we’ve done that for clients, my biggest argument is continuity of care. In my mind, it’s irresponsible to disrupt a care episode for critically ill patients, that is irresponsible in my mind.
Rosie: I agree with you but-
Patrik: If he goes to LTAC, you’re interrupting a care episode.
June: We’re all in agreement but what is the tactic we can use to them?
Patrik: Yeah that would be one, you got to list lines of argument. The continuity of care is one argument.
Patrik: What often happens is you got to weigh what they’re suggesting to you, in terms of where would they like him to go? If they were telling you, we’ve got a bed for him, you’d probably go like no way. You got to weigh also what options you are presented with, okay.
June: So, you have other risk of staying. There are risks of staying in ICU as well right?
Patrik: For sure.
June: Secondary infections. So, I mean there’s no perfect answer right? That is an acute facility, they are constantly bringing in sick people, right? Sicker than him at that point right? So, it may not be the best place, maybe a floor on the hospital might be better right?
Patrik: Look at a step down unit in the hospital I believe is probably the best of two worlds right? I’m very opposed to LTAC because we’re dealing with clients in LTAC all the time and they’re just horrible places. The LTAC from my experience, is the better version of a nursing home, that’s what it is. ICU yes you have the risk of getting a secondary infection, but even in LTAC you have the risk of secondary infections. Maybe not quite as high but it’s still there.
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Patrik: The reality is you don’t want to be in ICU, you don’t want to be LTAC. I guess at the moment the biggest challenge for your dad is to get off that Nimbex.
June: One day at a time.
Patrik: One day at a time.
Sarah: How long can someone be weaned off Nimbex? In his situation he brought it back to 2.6 or 2.8 in two days.
Patrik: Yeah and what was it before?
Linda: Three, four.
June: One. So they started at three, the previous doctor weaned it to one and then I think they did something without even telling us actually. I guess they tried to see if he’d take it all off all at once. So they probably tried it from one to zero and it didn’t work out. So, then they had to heavily sedate him one more time but they had to give him a lot more. So, it’s back to 2.8 or something in that ballpark.
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Patrik: Right, so basically you are asking how long that process can take. I don’t know to be honest with you. They have to keep trying. As I said I have not. Look I could … The longest I would argue I have seen someone on Nimbex is maybe 10 days at the very most, very most. So they have to keep trying, that’s all I can say.
Rosie: Let me ask you a question. So you know when you’re on fentanyl and you’re on it for so long you have withdrawals is that the same thing for Nimbex?
Patrik: No there’s no withdrawals from Nimbex but there is withdrawals from fentanyl and from versed.
Rosie: So what would be the issues with him weaning off that medication?
Patrik: Yeah, the issue is that when he … So Nimbex basically paralysis a patient completely. They can’t breathe they can’t move they can’t do anything.
Patrik: So, the minute they wean him off he can do at least something and even if it’s only … He then has the strength to breathe against the ventilator and that is what’s probably forcing them to use the Nimbex because he can’t tolerate the ventilator. That is-
June: So, should they at that point just give him the airflow and volume he’s wanting or is that going to do more harm for him?
Patrik: Yeah okay, mostly likely he wouldn’t be in a volume control ventilation mode, he would most likely be in a pressure control ventilation mode. If they were giving 400 just for argument’s sake, if they were giving 400 mls per breath the risk of him sustaining a pneumothorax, you know what I mean with pneumothorax?
Patrik: A hole in his lungs.
Patrik: If they were giving 400, 500 mls per breath, the risk of punching a hole in his lungs because of pressure, is real.
Patrik: They would be ventilating him with pressure control, they would be controlling the pressure but they can’t control the volume. But by using pressure instead of volume they are risking, they’re minimizing the risk of a hole in his lung.
Patrik: But also they’re minimizing the volume they can give him. He then might get air. So it’s a fine line they’re walking there, very fine line. The line between how can we ventilate him adequately and how can we not cause any more damage? Which again comes back to ECMO. If you’re using ECMO you give the lungs a rest. The lungs can just rest and heal. The ECMO whilst it’s not a miracle machine, but the ECMO buys people time because it takes over the function of the lungs 100%. That’s why it should have come in early.
June: We’ll ask but it’s a low probability.
Patrik: You should ask.
June: Yeah. It’s a low probability.
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
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to Eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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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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