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
Is it True that Tracheostomy Gives Our Sister in ICU a Chance to Survive?
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 on a ventilator and is unstable in ICU. Joyce is asking what her sister’s quality of life will be after being on a ventilator for quite some time.
What Would Be My Sister’s Quality of Life After Being on a Ventilator in ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Joyce here.”
Patrik: So for ARDS or for COVID, you do what we talked about, the Remdesivir, you do the steroids, which is the dexamethasone, and 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.
Patrik: Yes.
Joyce: But other than that, they said they have.
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Jane: Also, I have another thing I remember she said this morning. She said the thing in the lung could happen from the steroids they’ve been giving her also, not only just for the ventilation, it could be from the steroids. And another question that we asked, I don’t know how much it takes, but they were saying sometimes when they give them the vaccination of the COVID, they saw that it did help to some patients. Is that something that we can ask?
Joyce: Joey told you no. Joey told you she’s unstable to do it.
Jane: Joey did, but maybe he has different info.
Joyce: Joey told you they’re not going to give it to her. No matter what Patrik say, they’re not going to give it to her because her immune system is so weak, why would you add a dead virus? They would never do that.
Jane: Okay.
Joyce: They would never do that.
Patrik: They wouldn’t do that, I agree. So those are the questions. Have they maximized therapy? Is there anything else that they can do? When was the last time she was proned?
Joyce: I would say maybe four or five days. They stopped proning after she became… and I was advocated to let her be proned, but they’re saying, “She’s unstable. It won’t benefit her,” because she was doing 40 on her own at one point in time. So they’re like, “Well, she’s able to do it, so we’re not going to prone. She’s not tolerating it as much,” so that stopped placing her in prone position like four days ago.
Patrik: Okay. Have you heard of ECMO?
Joyce: Yes, and this hospital does not have it, and I don’t know what my rights are to get one.
Patrik: What do you know about ECMO? Has it been a point of discussion with the doctors?
Jane: Yes.
Joyce: I have been and they said, “This hospital does not have an ECMO machine,” and they were just trying to say, “By the way, odds are very low, don’t get your hopes up.” So basically they shut that down the minute I even brought that up. I wanted to get her that. What are my rights? What can I do? Who can I go to? Where can I get to get her that machine?
Patrik: Okay. So let’s just quickly talk about ECMO. ARDS or lung failure, pre COVID or now even with COVID proning fails, you can go on ECMO. ECMO machines are in rare supply. It’s not only that machines are in rare supply, it’s also staff that can operate that machine are in rare supply, whether it’s doctors, nurses and so forth. Whereabouts are you?
Jane: Mm-hmm (affirmative).
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Joyce: We are in a hospital without ECMO. We know other hospitals have it.
Patrik: Definitely, but they..
Joyce: …but the odds of transferring her is slim to none.
Patrik: Look, how to get ECMO is as simple as, number one, is there availability of the equipment and staff. It would be as simple as your hospital referring to the ECMO center and they being willing to accept. That’s the short version.
Joyce: So is that something I can advocate for?
Patrik: Definitely. They will probably tell you, “Chances are slim to none at the moment because all ECMOs are in use,” and they would give preference to their own patients first, but that’s not to say it can’t happen.
Patrik: I would say ECMO beds are in high demand again. Outside of COVID at the moment there would be… the demand for ECMO would be through the roof.
Joyce: I know, so I’m going to try to ask, but I know I’ll be shut down because it’s like-
Jane: Yeah, you asked already about it in the beginning.
Joyce: I asked actually three times and they said, “No, we don’t have it and it has low statistics in words anyway.” But I kept asking and asking and they say, “We do not have it.” So that’s pissing me off because if this machine can help her, God darn it I will turn whatever I can to get her on this damn machine, but here’s the problem. I don’t know what… Do I bring a lawyer? What the problem is from what I understand is we’re at their mercy and we’re just another number. It pisses me off.
Patrik: Yep. Look, the first thing for ECMO for you would be to find out in another hospital is it a possibility, would they have a bed? Once you know there is a bed then you can start to turn the wheels in motion. You probably don’t even need a lawyer, you probably need to have the goodwill from the hospital and say, “Yep, we are going to refer to this other place.” It sounds simple, doable in practice, but it takes work, no doubt about that, but that’s..
Joyce: I will definitely advocate for that.
Patrik: But even with ECMO they will probably get the pressures down, right and the risk then to do a trach would be much lower. Again, ECMO has a lot of advantages, but it also has a lot of risks attached to it. It’s sort of an invasive, your sister will be on another machine for days or weeks. There are certainly risks that come with that as well.
Joyce: Let me tell you, what is our hard stop where the cord through the ventilator? We’re at day 18, what’s like the absolute dead hard stop on when they have to take this cord out.
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Patrik: That’s a great question. I have seen, especially now with COVID, I have seen day 45.
Joyce: Wow, okay. And then the only thing we risk damaging is the vocal cords, permanently?
Patrik: Vocal cords and the structure of the trachea. The structure of the windpipe.
Joyce: Can that be healed or is that permanent damage that the quality of life will be..
Patrik: Definitely. You risk the structure of the windpipe, but again, you take it out at the moment…
Joyce: And, right..
Jane: And you know they told us that our sister will never be the same. Like thinking, “Okay, if she’ll be on the tracheostomy thing and she’ll be there for, let’s say, two months, three months, she’ll be fine.” They said, “Your sister will never be the same. There’s been damage, they’ve been damaged.” I know you can’t tell me, but what’s the duration?
Patrik: I think I can. There is a blog out there, it’s called ICU Steps. It’s a blog in the UK. It’s a blog for ex ICU patients, and you read the stories there and many patients will actually confirm that after prolonged ICU admission they have never been the same. That’s an unfortunate reality. I’m sure there are others that will contradict that, but you read that blog and a lot of ex ICU patients that have been in for a prolonged time talk about post-traumatic stress, they talk about depression, certainly.
Joyce: It’s called ICUSteps.com?
Patrik: ICUSteps.org.
Joyce: Org, okay.
Patrik: Yep.
Joyce: So is she right to say that she will come out of this completely not the person when she came in? Obviously we know it’s not a percent… Well, I guess you can’t speak on that, but we look at these miracle stories in these newspapers and we said, “Okay, well if they can have a miracle, why can’t we?”
Jane: Mm-hmm (affirmative).
Patrik: Absolutely, and you got to look at what do you want for now. Do you want survival for now without knowing what’s-
Jojo: Quality of life.
Patrik: Pardon?
Jojo: We’re looking for the quality of life, her being at least 80% the woman she was.
Joyce: Right.
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Jojo: To see that, the reality wishing or are we just-
Joyce: So is that a reality?
Patrik: I don’t know. I really don’t know because a process like this is a process. It’s not an event, it’s not as simple as we put in the trach and then we go back to 80% quality of life. It’s not as simple as… There will be many obstacles in the way to achieve that.
Joyce: And then someone in her age, even though she did act 22 years old, with diabetes, that’s something we have to weigh on as well, because the spring back is that much harder, correct? Even though she acted quite young, she acted healthy as can be, but because her age takes a number on this toll?
Patrik: Definitely, age is a big one, but then at the same time we have all seen in ICU older people recover too. Like we said, the odd miracle is out there and again, irrespective of age the survival numbers are quite good, but again, it doesn’t talk about quality of life, it just talks about pure survival.
Joyce: And we’re here to know the quality of life and is that something we’re willing to risk her because if she’s not sedated and now has this, not being able to talk and have a feeding tube down his stomach, would she want that? And we all know that that’s not… Maybe a week… I don’t know, I don’t think she’d want that.
Jane: Now when she first was there and she just had the mask on her face, she called us crying that she doesn’t want to live anymore. So thinking about… she’s such a very… she’s a strong lady, but she’s very weak if it has to come with any… I think that’s every girl, nobody wants to feel pain, but her especially, “There’s no way that somebody would treat me like a baby or have to take care of me.
Jane: …feed me.” Her ego was so… she was in the Army for 30 years, so she’s like this really honorable lady, so that’s why the conversation is. Do we want to keep her on a trach and change her diapers? I don’t know what else. I don’t know if they’re going to come tell us, “Okay, listen, the expiration date is here. What do you want to do?” I don’t know. I don’t know what we’re going to say.
Joyce: And then the other question to you is let’s say we don’t do the trach and we’re saying the odds of her really not waking up from the sedation then should the conversation turn into do we want to make comfortable and what does that look like?
Patrik: Yeah. Look that is where the conversation needs to turn to. I tell you what that might look like if you decide to go down that track. It would look like lowering life support, it could be they wean down oxygen, they wean down PEEP to the point where they probably would remove the breathing tube and make her comfortable with even more sedation with medication such as versed, midazolam, morphine, Fentanyl. Bear in mind though there could be an ethical debate around that in terms of where you stand, if you do that. If you take out the breathing tube and you give him morphine, midazolam, versed is that potentially perceived as euthanasia?
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Jane: I don’t even know if we’re allowed to even do that.
Patrik: So that’s why I bring it up. Now I can tell you this is common practice in ICU. This happens every day and I’ve seen it and as I was getting on in my career I just realized, “Hang on a sec, this is just not right here.” You do it when you’re young and stupid and then you realize, “Hang on a sec. This is actually euthanasia what we’re doing here and I don’t want to participate in it.”
Jane: So as a choice, we can put her under ventilator any longer, so what would be our choices?
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Patrik: The choice you could, you remove the ventilator, not do anything, not give any medication, but that could mean suffering, could be a quick death, might not be a quick death, nobody knows.
Jane: But you can’t even say later because they said like 25, 23 that’s it. Like they’re saying this woman was on the ventilator for 21 days and she passed away from cardiac arrest, which was a really bad death, you couldn’t even see it, it was horrible. So that’s the question. I don’t want my sister to go in pain. I don’t.
The 1:1 consulting session will continue in next week’s episode.
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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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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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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