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 episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Joyce as part of my 1:1 consulting and advocacy service! Joyce’s sister is in ICU on a ventilator and sedated. Joyce is asking if it is true that tracheostomy gives her sister a chance to survive.
Is it True that Tracheostomy Gives Our Sister in ICU a Chance to Survive?
Patrik: With a trach?
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Patrik: In the best case scenario they can take her off the ventilator and start using a speaking valve, but even with the speaking valve, that takes training. It’s not as simple as they put on a speaking valve and then she starts talking. It takes training. The vocal cords have been paralyzed now for 18 days and continue to be paralyzed. So it’s not as simple.
Jojo: What about communication with like a wink?
Joyce: A wink he’s saying.
Patrik: You mean like moving with her hands?
Jojo: Moving with her hand or moving with eyes asking her a question, “Okay one…
Jane: To communicate-
Patrik: Sure. She might even be able to write things down if she’s strong enough, she might be able to point to a letter board.
Joyce: Let me just ask you logistically. Let’s say we move on with the trach. Let’s say she’s not sedated, now she’s awake. Let’s say she’s still struggling a month and she’s still technically can communicate, but we say, “You know what? This now seems a little bit too much for her and us.” We basically bought time. I need a couple weeks to see if they can get this under control because they have not been… What you’re telling me is that because they kept her so sedated, the chances of her actually being weaned off is slim to none, and the trach gives an ability to actually let her actually fight.
Joyce: If we get to a point that she is not able to fight, but she’s still awake, do we still have that choice or do you get into the gray area thing, “Well, this woman is still alive and thinking and whatever,” do we lose that… . Because you don’t want to make a permanent chance to where you just keep in this state and we lose that opportunity to let her go in peace. I know it’s a very difficult thing to say, but it’s something I want to make sure that we still have control, saying, “All right, she had enough. Let’s go.” My goal is to buy a couple more months or a month to say, “Hey, let’s get this woman a fight,” because we never gave her a fighting chance by getting her sedated. So if I fight for the trach and I decide, “Hey, enough,” do we have that choice if she’s awake?
Patrik: It’s a very tricky one because you could argue that at the moment the situation is almost, you could argue, it’s a little bit black and white. I would argue that if you do proceed with the trach, it’s probably getting more gray. It’s not probably black and white if your sister is sort of awake, but it’s difficult for her to communicate, which it will be with a trach. There’s no doubt about that, communication with the trach is difficult, and yes, she might improve, but she’s sort of in a state of limbo, if you will and the decision making in that situation of limbo is not getting easier. That’s your question, isn’t it? Her decision making-
Joyce: My question is legally do you have a grant to stand on to make that decision and yes, it would be probably be a harder decision because now she’s communicating.
Patrik: Correct. Legally, that’s why I asked earlier advanced care directive and that’s why I asked earlier who is the medical power of attorney.
Patrik: At the moment you could argue your sister is on induced coma, she can’t make decisions at all, you could just say, “I don’t want her to suffer anymore. Let’s just limit treatment,” and nature might take its course. Then you’ve got the other side of the coin where, “Let’s do a trach, give her a fighting chance. Let’s see what happens.” It’s one of the hardest decisions any family can make.
Joyce: Do you know statistics behind… I know you’ve been in the business for a long time and I know COVID is fairly new. I know it’s a loaded question because you have not seen any of the chart, but can you give us a little bit of a picture of what we’re up against? Is this really impossible? Are we really trying to climb a really magical mountain that doesn’t exist? What are the odds of us coming through this?
Patrik: I think the odds of her coming through it and being able to live are there, which is why I said 90% of ICU patients survive roughly. The next question is that’s pure survival. Now we need to look at quality of life, and that is very hard to quantify at this particular point in time. Let’s just say she gets to a trach, even then the question is what is she able to tolerate? What does she want to tolerate?
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Joyce: When she was in the lower unit, when the bypass, she was not able… My sister is a very army girl, strong willed, does not want to be told what to do, does not want to be treated like a child, so in the bypass she was even trying to rip it off. So personality wise, she would want quality of life, but we don’t want to steal that away because we want her, but not at any cost.
Patrik: Yep. Here’s where it’s probably getting even more nuanced, if you will. You could argue, let’s do a trach, maybe quality of life is really poor, maybe she can’t come off the ventilator, but does that buy you as a family in time for her as well, to spend time as a family and come to terms with what’s happening. Again-
Joyce: The problem with time is if she’s in this facility we won’t see her anyway because COVID ICU, you can’t go into the hospital, even LTAC, which we never want, but they won’t let us in in there, so the question is we’re not buying quality time because we can’t be with her.
Patrik: Yes, you can’t be with her.
Joyce: I can’t hold her hand, I can’t… these are unprecedented times.
Patrik: Very unprecedented times.
Jane: Australia doesn’t have any cases, right?
Patrik: Not at the moment, but-
Jane: Yeah, they don’t have any cases.
Patrik: Not at the moment, but there’s a minor outbreak over the weekend in Sydney. We’ve been in Sydney a lockdown here in Melbourne for almost nine months, but we’ve come out of that. Bear in mind, it’s summer for us.
Jane: Oh, it’s summer, wow.
Patrik: Right, so it’s summer for us. Winter we’ll probably look different again. Even if a vaccine is coming, it takes time to roll out, but it wasn’t.
Jane: You guys got the mask thing down right away. It’s like, “Let’s mask it,” I heard everything about those.
Patrik: It wasn’t as bad here as probably in the Northern Hemisphere, but it was still bad enough. Look, coming back to another solution that may be available for you, again, talking about the quality time. As I mentioned to you, Joyce, yesterday, we are running a service here in Melbourne, Intensive Care at Home and we’re looking after ventilated patients at home, but I would never argue and say let’s do a trach and let’s take patients home. I would never argue that. There is a need for that, but it should be a last resort.
Patrik: Let’s just take the worst case scenario again. Let’s just say your sister gets a trach, can’t be weaned, is going home with a service like ours that may be available where you are. Is that an option to spend quality time? Again, I’m talking about the worst case scenario here, that she can’t wean off.
Joyce: For now we’re just like… It’s such a difficult decision because right now she’s so unstable and she’s such in a hard position. How do we know her body is even… You know what I’m saying? It’s such a weird situation because we love our sister more than anything. She’s everything to us and we want to fight and do our due diligence.
Patrik: Yeah, absolutely. Another thing, Joyce, is… So 17 or 18 days in ICU with ARDS it’s probably like an eternity for you, but the reality is when I’ve seen patients with ARDS pre COVID in ICU, four weeks, six weeks…
Joyce: Wait a minute, but with the tube going down?
Patrik: No, with a trach eventually, but bear in mind, if FiO2 has been what we talked about, PEEP above 8, FiO2 above 50%, you couldn’t do a trach then either, it’s just too risky.
Joyce: Right, and right now-
Patrik: So it had nothing to do with COVID. At the moment you’ve got the combination of higher FiO2, high PEEP, and COVID, right?
Patrik: But I also know in the last few months I do know that some ICUs have done trachs with COVID when PEEP was down and FiO2 was down. So they’ve taken the risk, but we have seen across the board it takes longer.
Joyce: Well and also what really pissed me off is when the doctor said, “If we can even find someone to do it.” So what I’m really confused is we don’t have any rights, we don’t have any advocacy? So it’s just… I’m not there to knock at somebody’s door, so I’m not there to see and that doesn’t make sense.
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Patrik: Right. So two things to that. Who’s doing the tracheostomy? Two things. So 20 years ago it would have been done in the operating room by a surgeon. In the last 10-15 years it’s moved more and more into ICU, the intensivists are doing it. It’s a percutaneous procedure, takes 30-40 minutes, it’s very quick, very efficient. Again, with COVID at the moment we have seen that’s moving back to the operating room to keep the risk in ICU lower to spread COVID. Not that it can’t spread in the operating room, but the operating room, generally speaking, is a more sterile environment.
Patrik: So pre COVID, let’s do the trach in ICU, 30-40 minutes, no big deal. At the moment it is a big deal because of infection risk and also because of COVID patients going into ARDS, having higher PEEP requirements, higher FiO2, so it’s a vicious cycle again.
Joyce: So basically, here’s what I understand. Right now, if we don’t advocate for the trach, the odds of her coming out of being is slim to none, because there’s miracle that will happen if she can’t tolerate for two weeks and she’s now having additional issues. So if we do not decide on the trach, if we even have that option, I don’t see this ending up with the possibility of her doing it on her own, correct?
Patrik: I’d say that’s what it looks like at the moment. What are they saying in terms of therapy? We talked about the Remdesivir earlier, we talked about the dexamethasone, we talked-
Jane: They maxed out. They said, “We’ve maxed-
Joyce: Well, what do you mean by therapy? Hold on, what do you meant by therapy?
Patrik: So for ARDS or for COVID, you do what we talked about, the Remdesivir, you do the steroids, which is the dexamethasone, you do the proning. You talked about plasma earlier. I would want to find out have they done nitric oxide, have they done Flolan nebulizer. That’s what I would want to know. Is there anything else they’ve missed, is there anything else they’re potentially withholding?
Joyce: That’s what I’ve been asking. I said, “What else can you do? What else can you throw? What else?” And they have told me numerous of times is, “We threw everything. You have to trust us that we’ve done everything.” Now I’m not going to discredit them. I think they have the morality of doing what they can, but I don’t know those words… So you’ll email those and I’ll make sure that I’ll ask for those two medications.
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
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
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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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