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
How long does it take to die after a breathing tube is removed? Live stream!
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 Tara, as part of my 1:1 consulting and advocacy service! Tara’s brother-in-law is with a breathing tube and ventilated in ICU due to ARDS. Tara is asking if the ICU team is preparing them for their agenda to stop treatment for his brother-in-law when they say that his lungs won’t heal.
Is the ICU Team Preparing Us for their Agenda to Stop Treatment for our Brother-In-Law When they
Say His Lungs Won’t Heal? Help!
Tara: This is Tara.
Patrik: Hi Tara. It’s Patrik here from Intensive Care Hotline. How are you?
Tara: Good. How are you?
Patrik: Very well, thank you.
Tara: Glad you’re calling. We’re getting more and more concerned here.
Patrik: Right. Okay.
Tara: If you don’t mind, I’m going to hook up my sister.
Patrik: Of course.
Tara: Then we wanted to talk to you for a couple minutes before we hook up the nurse and tell you our concerns.
Patrik: Yes, absolutely.
Tara: We even had something else come up today. Just one minute, and I’m going to get her on the line.
Patrik: Please.
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Tara: Her name is Sandy.
Patrik: Sandy?
Tara: Okay. One minute.
Patrik: Thank you.
Tara: Yeah, Sandy.
Patrik: Thank you.
Tara: Okay. One minute.
Tara: Okay, do I have you both on?
Sandy: Yes.
Patrik: Yeah.
Sandy: Hello.
Patrik: Hi, Sandy.
Tara: Patrik, are you there?
Sandy: Oh hi, Patrik.
Patrik: Hi, Sandy.
Sandy: Hi.
Patrik: Right. Okay. Tell me, tell me what your concerns are and then we can see what the next steps are.
Tara: Okay. These are some of the concerns that we want answers to as far as what is going on.
Patrik: Yeah.
Tara: From the beginning, I’m just going to go back really quickly to 4 weeks ago. Right before they put him on the ECMO or extracorporeal membrane
oxygenation, they were giving us positive news that he was doing well and they didn’t think they were going to even need to do the ECMO.
Patrik: Yeah.
Tara: Then he tried to pull out his ventilator tubes at one point. They started sedating him more. Then very shortly after that, I don’t know what’s changed, but they just all of a sudden said they decided it would be better to put him on the ECMO.
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Patrik: Right.
Tara: He’s been on that for over 14 days now.
Patrik: 14 days.
Tara: They had told us after the first week of him being on that, they were concerned about him moving and stuff, so they had him tied to the bed and they wouldn’t really let him wake up. Then they told us, one of the doctors said, “They were going to let him start waking up a little bit and reduce his
sedation”.
Sandy: They said it was good for healing.
Tara: They said it was good for healing, yeah.
Patrik: Yes, of course. Yup, that makes sense.
Tara: Okay. They’ve really not done that much. They did a few times. I think last week they let him wake up a little bit, right?
Sandy: Yeah. And then after he’ll like cross and stuff, so they’ll say he’s getting irritated. We’re going to.
Tara: Getting agitated or irritated. We’re going to put the sedation back up.
Sandy: Yeah and they’re putting sedation back up.
Patrik: Yeah. Was he paralyzed? Do you know whether they’ve used paralyzing agents? Do you know what I mean by that?
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Sandy: Yeah. Not to my knowledge, but I’m not a 100% sure.
Tara: But he doesn’t move when he’s on it. Like if they reduce the sedation. Last week he squeezed your hand, shook his head yes and no. Moved his feet on command and that sort of stuff. But as soon as they up the sedation, he doesn’t do anything.
Patrik: Okay. But he does follow commands if they reduce sedation.
Tara: Yeah.
Sandy: Yeah.
Tara: As of last week.
Patrik: Good, that’s good.
Tara: A few days, probably 5 days ago.
Patrik: That’s good.
Tara: 5 days ago.
Sandy: Well, they have hardly been reducing it because they say he gets too agitated and talks.
Patrik: Sure, sure.
Tara: They said if he talks too much, that will make his oxygen level drop.
Patrik: Yeah. They’re probably right there.
Tara: Anyway.
Patrik: Yeah. Okay. A couple of..
Tara: Anyway.
Patrik: Couple of other questions.
Tara: A couple of more quick things.
Patrik: When he went on ECMO, how long was he intubated before he went on ECMO?
Tara: I think he was with a 6-day, Sandy, because they first ventilated him on Sunday, I believe, and then the following Saturday, they put him on ECMO.
Patrik: Between..
Tara: 6 days.
Patrik: Right. Between intubation and ECMO, was he proned? Do you know what I mean with proning?
Tara: Yes.
Sandy: Yes. He was.
Patrik: He was proned?
Sandy: Yes.
Patrik: Okay. And did that work?
Tara: As long as he was prone, they said his oxygen levels were good, right, Sandy?
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Sandy: If he was on his belly, they said he would do much better. And then when they put him on his back, he would do worse.
Patrik: Right. Normally what happens is if proning doesn’t work right, ECMO is the next step. Now what I see in my practice is that patients don’t get on ECMO quick enough for all sorts of reasons. To a degree, putting him on ECMO after 6 days of intubation and proning makes sense to me, but I would need to
know more.
Sandy: Right, and they said it would be better to get him on it sooner than later.
Patrik: Agreed, agreed.
Tara: And yes, just for his organs and all that.
Patrik: Absolutely.
Tara: The other thing that we want some answers to is what they’re giving him for painkillers, because she said to her knowledge they were giving him Tylenol. And she noticed… When did you notice Sandy, that they put..
Sandy: I noticed the first probably five days to a week, he was just on, it said Tylenol. It was an automatic drip thing. And then I started noticing they kept coming in and saying they were giving him Oxy.. They grind up oxy..
Patrik: Probably oxycodone.
Sandy: And they put tubes down his throat.
Patrik: Yeah. It would be-
Sandy: And they are saying..
Patrik: I would almost guarantee-
Patrik: I would almost guarantee that he’s on oxycodone, fentanyl or morphine, something like that.
Sandy: Yes.
Tara: That is normal? That is normal.
Patrik: When someone is intubated, its 9 patients out of 10 have morphine, fentanyl, sometimes and oxycodone on top of that…
Sandy: Okay.
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Patrik: On top of that, they often have either Propofol or Versed, also known as Midazolam sedatives. They’re not painkillers. So the morphine, fentanyl are painkillers. And then the sedatives are, most of the time it’s Propofol or Versed. Have you heard of them?
Tara: Okay. But the new development today that, I guess a doctor called Sandy and told her that the reason that..
Sandy: There was a guy that chose not to do the tracheostomy in his throat.
Tara: Oh, the tracheostomy, yeah. He told her the reason that they were not going to do the tracheostomy was because his lungs are not going to heal anymore. It basically just would’ve been pointless to do it, I guess.
Patrik: Right.
Tara: It’s because they said his lungs aren’t going to heal anymore. They’re damaged. And they also want to talk because they think keeping him on the ECMO any longer could be abuse.
Patrik: Sure.
Tara: And Sandy has not told them, which I told her, we need to have this conversation right away with the doctors that you did not sign… I mean, she has no recollection. They’re telling her she signed a form saying that they could end treatment any time and they’re acting like they have their right
to-
Sandy: The only thing I have gave consent to, is to put him on ECMO, over the phone.
Patrik: Right.
Sandy: While they signed for me.
Patrik: You have never signed anything, have you?
Tara: Not that I know of. I mean, other than giving them consent over the phone to put him on ECMO.
Patrik: Yeah.
Tara: I don’t know why they’re saying that and it’s concerning me just a little bit of stress on what they’re talking about.
Patrik: Well, if they’re claiming that you’ve signed something, well, you need to see that. If you can’t..
Tara: Yeah.
Patrik: If you can’t recall signing something it’s sort of trust, but verify. And I mean if they claim that well they need to show you that piece of paper, if you have no recollection of it. But even let’s just say worst case scenario, even if you did sign it, you have every right to revoke it. In a nutshell,
every hospital has end-of-life care policies, every hospital. ICUs in particular have end-of-life care policies. Those end-of-life care policies say something along the lines of that treatment cannot be withdrawn without next of keynote medical power of attorney consent.
Patrik: Or if a patient is awake, patients can make their own decisions. Of course, that ties in if you look at state laws, national laws there is no state law that says ICUs can just arbitrarily withdraw treatment because they feel like it. You know? I think you’re in a fairly safe place there. What I will say
is this. And I mentioned this to Tara yesterday, ICUs are very good pretending they can do whatever they like and, and most families buy it. Most families believe that.
Tara: Okay.
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Patrik: They’re very good at pretending they’re operating in a vacuum. You’re not operating in a vacuum if you are making life or death decisions that is guided by right policies by law. Take a hospital, for example, everything in a hospital from cleaning the windows to mopping the floors has a policy.
Everything.
Patrik: So basically what they are telling you is they can pretty much do whatever they like without the policy and the policies would allow them to just arbitrarily remove treatment. Think about that. That’s just that, that’s what they’re telling you. I’m not disputing. That’s what they’re. We know that we
know that. But you threaten them the next step there, if there is more pressure from them, the next step is for you to ask for the hospital policy for withdrawal of treatment. And by you just saying that you will seek legal advice or by you getting lawyer, that’s often enough to get them off your back. What they are with is for you to give into the pressure. That’s the ultimate goal.
Sandy: That’s what it seems like.
Patrik: With coming to… let me just ask you, what is the official diagnosis?
What is the official diagnosis? Is it ARDS?
Sandy: Yeah. That’s what they say.
Patrik: Right.
Tara: ARDS.
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Patrik: Yes.
Tara: Know what they called you, Sandy.
Sandy: It’s what?
Tara: ARDS.
Sandy: What is that?
Tara: Oh, you don’t know. ARDS is basically acute respiratory distress syndrome you’re from, I mean, this would be due to COVID,
but..
Patrik: Correct.
Tara: They haven’t told you that, or they haven’t even given you a diagnosis like that.
Sandy: I don’t… Not, I mean.
Patrik: Would be..
Sandy: The guy today that was going to do the trach just acted like.. and we’re ridiculous for thinking otherwise that’s how he acted.
Patrik: Right.
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Tara: Yeah. Because she was asking him we’ve read so many stories of people who have been on the ECMO for 4 or 5, 6, even up to 8weeks.
Patrik: Yeah.
Tara: Or more, and make a full recovery. And so how can you say that his lungs can improve anymore after just over 2 weeks?
Patrik: Yeah.
Tara: Especially when they initially said at least 2 weeks before the ECMO.
Sandy: I said that he said, you need to be very careful what you listen to..
Patrik: Sure. He’s giving… Yeah, absolutely. He’s trying to prepare you for their agenda and their agenda is to stop treatment and…
Sandy: Yeah.
Patrik: Is trying to plant that seed over and over again. Now I think that’s we need, we need to get down to the more nitty gritty when he says “The lungs are no longer working or something to that extent”. He’s probably referring to that he might develop lung fibrosis. Did he say something like
that?
Tara: Yes. He said his lung are fibrous.
The 1:1 consulting session will continue in next week’s episode.
