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
Why Am I Getting Harassed By The ICU Team To Unplug My Mom Off The Ventilator?
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 Mon, as part of my 1:1 consulting and advocacy service! Mon’s mother is in ICU
intubated and on a ventilator. Mon is asking, how can they tell if their mom is ready for a tracheostomy.
How Do We Know if our Mom is Ready for A Tracheostomy in ICU?
Patrik: Yeah. Good. Keep doing that. Okay. Have they asked you to sign a DNR? Do you know what I mean by a DNR?
Paul: Yes. No, but we already stressed to them and I sent her an email saying that we didn’t want to be in a DNR. I told them, because I’ve read online, it said that right now in a pandemic, they’re not supposed… Because I went under the CDC or something. And in the bottom it said that basically, the patient’s family or whoever was in charge, had to directly tell them that they didn’t want to be in that list. Or a CCA, comfort care arrest, or
something like that. Because right now, the way things are, they’re not asking you and they’re not doing it. They’re not trying to revive anybody.
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Patrik: Okay. Okay. Right, right. Paul, you mentioned to me earlier today, when you first contacted me, you mentioned about the tracheostomy. What have been the discussions around tracheostomy, if any?
Paul: Okay. So when that happened, they told us when she was first going to be intubated, said if it takes longer, we can’t have more than 14 days on this. Then we’re going to do the tracheostomy, in the throat and everything. So 14 days came around and I started asking them, “Hey, when are we going to…”
“Oh, well we can’t do it, she’s too critical. She’s too critical, we can’t do it.” And that’s how they have it, until… Basically she’s been on the tube in the mouth for 30 days now.
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Patrik: Okay. Okay. Okay. So to give you the short version with the tracheostomy, normally the 14-day time window is correct. What we’re certainly seeing at the moment with COVID, that 14-day time window has been pushed back to 30, 45 days. Main reason for that is
probably overwhelm of ICU, but also because of the infection risk for staff. When you do a trache, the infection risk for staff is pretty high. So that is part of all of that. That’s not to say traches don’t happen for COVID patients. They do happen, but it’s certainly getting longer and longer.
Paul: The chances are less and less.
Patrik: And less and less. And I guess with ICU beds, ICU bed demand going through the roof at the moment with COVID, it’s getting more and more difficult. However, that shouldn’t stop you from standing your ground. Now, are you able to have face time with your mom?
Paul: Yes. Right now we’ve been on 24-hour face time. Well, yeah, it’s one of those because they… The way I saw it at first is I told her, “We need to be watching her.” One of the deals is, I just don’t trust them. I mean, funny things have been going on, but we’ll get into that later. But I told them, “You know what, we would like to just face time all the time and you know what, I’m going to have my sister take an extension cord.” Because
they said, “Oh, we don’t have an extension cord. The phone doesn’t charge. And once it charges, it takes two, three hours for them.” So we took an extension cord over there. They got it going. And the lady said, “Okay, well, you know, if your mom has a heart attack, you guys are going to see everything.” And I
said, “its okay, we’re going to see you guys resuscitate her.” I said, “So that’s what we’ll be at.”
Paul: So other than that, I mean, that’s how it happened. But we had to fight for that iPad. Now we just took her own iPhone. And that’s how we do it.
Patrik: Okay. With ARDS, you mentioned ARDS, she was diagnosed with ARDS as part of the COVID. What have they done? Have they put her in prone position? Do you know what I mean by that?
Paul: Yeah. They, they put them in prone for, I believe it was two weeks on. And then they stopped.
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Patrik: And then they stopped? Why?
Paul: Yes. Because they said it wasn’t working. And I told them to keep going. I even told them, I stressed this about a couple of days ago when I said, “You know what, how do we not know that she’s struggling because she doesn’t have fluid?” And they said, “Oh, well, you know, we’re sucking it out.” That’s what they told us. And then they said that they started doing proning, but it was a couple hours only, because she couldn’t take it. Her
oxygen will drop too low.
Patrik: Sure. How big is the ICU? How many beds?
Paul: You know what? I’m not sure to be honest, but the last time I heard, the nurse said they were 300. She said we have 300 patients in there.
Patrik: What?
Paul: Yeah.
Patrik: Okay. The reason I’m asking is generally speaking, the bigger the ICU, the more expertise there is. You could argue the smaller, the ICU, the less expertise. That’s sort of my experience. I would add-
Paul: What they did do is open another floor.
Patrik: Yeah. They probably run on a hundred beds normally, but at the moment it would probably be 300 because of the demand, unfortunately. That’s not necessarily a bad sign because what’s that all overwhelmed at the moment. The more beds, generally speaking, the more expertise there is available. Look, quite frankly, if you don’t do anything as a next step, nothing happens without your consent. What I am unaware of at the moment is the
healthcare rationing laws. I have not found any evidence for that. I have seen there was talk about it, but I haven’t seen anything online where it says, “Yep. This law has been put in place on such and such date. And now all of a sudden hospitals can do whatever they like.” That would be new to me. And it hasn’t been verified. Right?
Paul: I’m pretty sure it’d be big news.
Patrik: It would be in the news, wouldn’t it?
Paul: Yeah. Because I mean, that’s…
Patrik: Would be significant, would be significant. Look, under normal circumstances, your mom should have a trache by now and she should be weaned off the ventilator. Under normal, under outside of COVID times. What I’m very happy to do as a next step is to talk with the doctors, with you. We get on a call with the doctors. I do believe they’re only telling you half of the story. What do I mean by that? You know, they’re telling you that
she’s dying, your mom is dying. It’s all negative. Okay. If you and I were to talk to the doctors, I do believe I can put that in perspective, because I’ve seen it thousands of times. Right? And I can put in perspective that 90 percent of ICU patients survive, not the other way round. So I want to hear from them. Why should your mom be one out of ten? Why is she not nine out of ten? That’s what I would want. The other thing is when someone is in a situation like this, there are dozens of things
happening simultaneously. Dozens. And unless you really break down those things and you understand those little things, it’s very difficult for you to get the bigger picture, right?
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Patrik: If the only form of life support at the moment is ventilation and potentially dialysis, I would say there’s absolutely no reason why your mom can’t survive. If there are
other mechanisms of life support that we need to find out, right? ECMO, I’m sure she’s not, but, inotropes… You know, if there’s any other forms of life support
happening, yes, I’d say maybe the chances are limited. But even if that is the case, I hear from you, you still don’t want to give up. That’s what I hear from you.
Paul: Yeah. We’re not giving up.
Patrik: No, I understand you. I understand it completely. So that’s where I believe I can help you. It’s also good for them to know that they understand you are talking to someone who understands intensive care, because at the moment they just think they can tell you anything they like, and you just take it for face value, which they probably know you’re not taking it for face value. But to have someone that can make an argument on a clinical
level. I believe that will help you…
Paul: Been there, done that, basically.
Patrik: Will help you to keep advocating for your mom.
Paul: Well, let’s do it. And you just let us know what we have to do on our end. Because I mean, we saw your videos and it was just, it’s inspiring, you know? Because that’s exactly how we felt. But you just put it into words. And you knew what you were talking about and we felt like that the whole time. I mean, when I saw your video, I just sent it to all my brothers and sisters. And I said, “This is what I’m talking about. This is it right
here.” I mean, that’s how we went into this place. I was scared to death because I said, “Oh man, I don’t know how nasty it’s going to get. So I know one thing for sure, we got to be on top of it. We got to be on top of it and let them know that people care about her and they’re here for them. And we just got to let them know.” And it’s just…
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Melissa: We have to do everything, everything. We have to do everything that we can. Everything.
Paul: What they do is, they don’t call us for updates. I mean, it’s been up to five days that we don’t get any updates. We have to be calling and calling and calling and calling to get updates.
Patrik: That was my next question. How do you get updates?
Paul: I understand… Yeah. All they tell us is this. Every time they update, it ends up in a conversation where you should unplug her. She should die with dignity. All the time, I’m so tired of it, dying with dignity.
Melissa: Quality of life, yes.
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Paul: As a quality of life, that’s all they know how to say. And they just say, “She’s brain dead. She’s this and that.” They said, “You don’t want to put them in one of those senior citizen homes.” I said, “You know what? My culture doesn’t do that. So we will never do that.” So I don’t know…
Patrik: Good. Because that’s part of the issue, you know, ICUs are very good at saving lives, but ICUs are not good at looking at what’s going to happen after ICU. You know, they can’t look beyond, they just can’t. And there’s no guarantee that if your mom’s life is saved, there’s absolutely no guarantee that the quality of life, that will be good. But you know that already. They don’t need to tell you that, you know, there’s no guarantees.
But you want your mom to live.
Paul: But at least we will be content with the effort, with the full effort in our part. That’s what we’re trying to do. I mean, we understand the severity of it, but we just want to, you know, don’t stop until we tried everything. And that’s what the lady was trying to tell me today, she was like, “Well, it’s okay. You didn’t fail. You tried everything.” I said, “I haven’t tried everything, what are you talking about?” She’s like, “It’s
okay. You know, it’s okay. Your mom’s going to be in a better place.” I said, “Oh, here we go with this again. I haven’t tried everything.” I said, “You know, who are you to tell me what I’ve done and haven’t?” Right now we’re having… We’re trying to get that… What is it called? I just can’t say it.
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Melissa: The tube on the throat.
Patrik: Tracheostomy.
Paul: Tracheostomy, yeah. Tracheostomy. We got a doctor that’s willing to do it. But the only thing is that she never met her physician that she was assigned to. So basically her physician can’t sign off on her. So the only ones that can sign off on her are the people in the hospital, and they don’t want to help us.
Patrik: What’s their response to your request for a tracheostomy? What’s their response to that?
Paul: At first they said, “Oh, she’s too weak. The surgeon is not going to want to do it.” So then after that, after we kind of got into it the next day, she says, “You know what, we’re going to have to unplug her, yada, yada, yada.” And I said, “Okay, well, no, that’s not going to happen.” And she said, “Okay, you know what? I’m going to see if I can do you a favor and see if I can talk to the surgeon and see if she wants to do it.” She’s
like, “But she’s going to come and evaluate your mom again, and there’s no promises.” Well, nobody came and evaluated her. We’ve been in face time, 24/7. And she has the nerve to say, “Oh yeah, they evaluated her and says no. She can’t do it because the anesthetic.” I’m like, “Well, they’re not putting her down.”
Paul: And she said, “Nope, she can’t do it because of the ventilator is on 100.” And I said, “Okay, but I’m sure that there have been times and cases where they’ve done it where they’re on a ventilator that’s on 100.” I said, “Okay.” So basically that’s what she told me. And then right now, earlier today she said, “Hey, well, you know, if you could get somebody that wants to do the surgery for your mom, give her this number and we’ll go ahead
and start the process.” So then I found somebody, I called her up and she’s like, “Well, you know, who’s going to transfer her? She’s too weak,” and started with her BS. And basically telling me they’re not going to do it.
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Patrik: Yeah, sure. Okay. Let’s… Okay. So the next steps really are evaluate, if you don’t mind, I’ll email you the consulting options. Right? And then there are several options. Probably the best, the easiest way, is just to start with the hour option. The hour option gives us enough time to talk to the doctors. And then we’ll go from there. There are other options, but often it’s enough just to start with that. And then you can always
upgrade if you need to. But hopefully we can get an outcome within that hour and then go from there.
Paul: Yeah. Well, I mean, whatever it takes. And the good thing is I have a direct number now. Because they weren’t giving me her direct number. And they didn’t want to give us it, because they knew we’d be calling. So then after that, I just got it today.
Patrik: Yep. Look, I need to go. I need to go for now. What I’ll do is I will email you the consulting options and then you can discuss it amongst yourself, and then we’ll go from there.
Melissa: But do you think there is possibilities that you might be able to do it, to help us?
Patrik: Always, always. They need to be reminded that, they can’t just make decisions to end people’s lives. Again, that is murder.
Melissa: Yes it is.
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Patrik: But they are very good at pretending that they can. And the only thing that I will say is that I am not aware with what I’ve researched this week, that there are any healthcare rationing laws in place as of today…
Paul: I’ll send you a link to where I got my information. So you tell me if it’s viable, but it’s stated that basically, they have a procedure that they do. Its few steps. It said that they have to stress to us, they basically have to try to convince us. If they can’t convince us, then they have to bring in all their specialists, assess them to the quality of life. If everybody says the quality of life is not worth it, then they make a
decision and they can go ahead and make a decision based on the resources that they’re wasting on them. And people that they say… It’s a whole… But it made perfect sense.
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Patrik: But that’s the process they have to go through. It’s not just, “Well, I’m telling you what we do tomorrow.” There’s a process.
Paul: But they started this process about two weeks ago. You know, that’s when they started, that’s when the guy.. A guy called me from the bio committee something or, and she says, “Well, you know what, I’m sorry, but we made our minds up. And this is what we do when… When we don’t agree, we make the final assessment because we’re the ones that know the quality of life…” I said, “The quality of life depends on how you see it. You see
it different than I do.” So it doesn’t matter.
Patrik: Exactly. Exactly. It’s subjective. Not objective, quality of life. Okay, all right, look guys, I need to go. I’ll send you the email in the next 15 minutes or so. Thank you, thank you for your time.
Melissa: Thank you very much.
Paul: Thank you.
Patrik: Thank you, bye.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
