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
10 Things the Intensive Care Team is Deliberately Withholding from You – 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 Isaac, as part of my 1:1 consulting and advocacy service! Isaac’s dad is with Stage 4 lung cancer and is ventilated in ICU. Isaac is asking how long will his dad stay on a ventilator.
My Dad has Stage 4 Lung Cancer in ICU. How Long Will My Dad Stay on a Ventilator?
Patrik: Intensive Care Hotline, Patrik speaking. How can I help?
Isaac: Hello, Patrik, this is Isaac. I’m calling regarding my dad’s condition.
Patrik: Hi, Isaac. Can you tell me more about your dad’s condition now?
Isaac: Okay. So we received the result of the CT scan three months ago when me and my dad had talked to the doctor before he got to the hospital. He was panicked. He thought he was going to be back on stage one or two because some of the nodules lit up and some of them didn’t. So, taking one, taking another. But that passed. But then he caught pneumonia, now he’s in the hospital, and when he was on the fourth floor weeks ago, I had time, two Thursdays ago, for him to get his fluid drained out of his lungs because they said it was too much… They didn’t do it that Thursday, and that Tuesday, and his heart stopped because he drowned in his fluid.
Patrik: Oh my goodness.
Isaac: Yeah, so his heart stopped. They resuscitated him, and now he’s on the ventilator. Then he was getting better, and they were trying to wean him off, and he was doing good, but his carbon dioxide level was at like 100, so I guess that’s why they couldn’t get him off.
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Patrik: Just give me some timelines, Isaac. How long has your dad been ventilated for now?
Isaac: For almost two weeks.
Patrik: And prior to that… So, when he got on the ventilator, that was when the heart stopped. That was leading up to it.
Isaac: Yeah.
Patrik: Yeah. And I see. And it sounds like if the oncologist had drained the extra fluids around the heart, it may not have happened in the first place.
Isaac: Yeah.
Patrik: Okay.
Isaac: And that’s what I tried to explain to them, and they said, “Well, he has stage 4 cancer,” because in his fluid, the cancer, it couldn’t get it… But, I said when he was on the fourth floor with pneumonia, he wasn’t even on regular oxygen, and now he’s unable to get off the ventilator.
Patrik: Yeah.
Isaac: And now, should the breathing trial… They tried it last night, and he barely lasted 10 minutes, and there was too much straining.
Patrik: Okay. And you have spoken to the oncologist today, is that what you’re saying?
Isaac: Just right now, yeah.
Patrik: Yeah.
Isaac: I was waiting for them all weekend.
Patrik: Right. And what is the oncologist saying? What’s his or her point of view of the situation?
Isaac: She said that… Well, she’s just coming from the oncologist outside of the hospital… on his last CT scan four months ago. And she’s saying that it is stage four. Some small nodules came back on the right-hand side. If they’re on the right and left, that’s considered stage four, and systems will be affected. But I’m kind of like, okay, so what do you want to do in this situation? I said, well, my dad believes to resuscitate, and he wants to die at his house, and if he’s at his end-stage, I don’t mind putting him in hospice, but I’m trying to get him home, and I can’t get him home, he’s on a ventilator, because nobody will take him.
Patrik: Yep. And what’s-
Isaac: Only a nursing home.
Patrik: Are the oncologist and the ICU team, are they talking?
Isaac: Yeah. And they just say he’s too fragile, because he’s like 96 pounds, and he’s real skinny. He’s been skinny for a lot of years, because he lost his false teeth, then he was on a liquid diet, then he caught pneumonia, got bronchitis, back and forth getting sick. So, there’s a big factor of why he’s been skinny, but I think they think it’s just all because of cancer. I’m sure it’s part of it as well, but not the main problem.
Patrik: Sure. And where is the main cancer? Where is it?
Isaac: In his lungs.
Patrik: In his lungs.
Isaac: So that’s the problem. Yeah. Everywhere else, all the other scans… his brain came out negative, his liver, his kidneys. Everything else is perfect. But, I know that lungs matter.
Patrik: Of course. And prior to him being intubated, what have they done with the lung cancer? How has he been treated for that?
Isaac: Spot radiation treatment, and four years ago, it went completely away just like that and also with the use of Cannabidiol (CBD). And they were amazed that he didn’t have the cancer anymore. And then from a couple of months ago, she wasn’t sure if there were new nodules or not, or if there was just inflammation from the radiation. And then, we’re in the situation now.
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Patrik: Okay. So, I still don’t understand. How have they treated the cancer before intubation? Did you say radiation, or was there surgery as well?
Isaac: Yeah. Just radiation. Spot radiation treatment. No chemo or nothing because he’s too skinny and fragile, they felt like chemotherapy and all that was not an option. And they said now there’s no other option. His body is not going to withstand chemo, surgery, or spot radiation. There’s no point in this… At this time, they told us there’s no point. I’m kind of like, “Okay, so what do I do from here?”
Patrik: Yeah. Okay. Have you seen a chest X-ray of his lungs or a CT scan of his lungs? Have you seen any of that?
Isaac: I’ve seen the chest X-ray the second week, and there was a lot of fluid, and then they drained it. They were showing me where it was all white, and they drained it. They did mess up because… So, they messed up first by not draining his lungs, and then his heart stopped. So, then he got on a ventilator… and I told them, “This is what got him here in the ICU. Let’s go through the procedure to drain his lungs because he needs the… this is a problem here.” So, then they said, “Oh, tomorrow.” I said, “You guys have been saying that since Thursday, and his heart stopped.” So, then, Monday they did it between 5:00 and 7:00. Then I got there, and I said, “Oh, you guys did it.” They said, “Well, we did the procedure but we never drained the lungs.” I said, “Well, what are you guys waiting for?”
Isaac: So then, one of the nurses tried to drain his lungs with a pleural catheter, but it wasn’t placed correctly. And then, so I sat there for three hours watching it, and it was only doing a little bit of drops, and the doctor said, “He was supposed to get out 1,000 mL.” So, I said, “I’m not a doctor or a nurse, but this doesn’t look right.” So, I told the nurse, “Hey, I don’t think it’s draining,” and he said, “Oh, maybe it’s the way he’s positioned.” So, I waited a little bit longer, and then I Googled it, and it said it takes 10 to 15 minutes. So, I called the other nurse, and it was almost 9:00 at night now, and visiting’s almost over, and they’re telling… I told him, “Hey, you need to either redo this tubing or put a new bottle or something because it says it takes 10 to 15 minutes.”
Isaac: So, within 10 minutes, he drains 1,000 mL, and then he connects another bottle, and I said, “No, the doctor only said 1,000 mL because you don’t want to create air in the lungs.” He did 500 mL more. The tube started shaking. You could see the air bubbles. And I told him, “I think you need to turn that off. I’m telling you, she only said 1,000.” He created an air pocket in my dad’s lungs, and now my dad’s lungs don’t want to fully expand as well.
Patrik: How long ago was that?
Isaac: About a little over a week ago.
Patrik: Right. Okay. And does he still have a drain in?
Isaac: Yeah, then they put another drain, a different drain connected with the water to try to get that air out along with the fluid. And then I noticed that tube wasn’t working because it wasn’t going all the way through. So, I told the doctor and the nurse, and the doctor kinked it and made it go. “Of course, it’s working. You see the bubbles stopped?” And I said, “I don’t think it’s working.” I told the nurses. They all said I was wrong. Four days later, the doctor comes in, she’s messing with the tube, and said it wasn’t working. I said, “I told you guys this four days ago. Now we have another problem?” So, I guess it’s a valve that goes one way, or one nurse took something off, a part off, so it wasn’t suctioning correctly. It wasn’t suctioning at all. So, they had to fix that, and they had to get the part from a whole in another hospital.
Patrik: Oh my goodness.
Isaac: And then when they finally got that, they started draining his lungs again, which took another five days, and then they were trying to get the air out, and then we’ve just been from there from now on. I just catch problems after problems. My dad kept pointing down, and then he can’t talk because of the ventilator. I said, “What’s wrong, dad?” And I said, “You need the bedpan?” “Yeah.” So, we put the bedpan.
Patrik: Right.
Isaac: And then they come in… Do you know what I’ve noticed since I’ve been here day and night? I always come in the mornings, afternoon, and nighttime. And I says, “I never noticed he had a problem with that. Can you check?” He says, “You know what? I didn’t notice that either.” He says, “Nobody notated his chart.” I said, “Isn’t that normal what you guys check for?” So, I said, “You know what? I think another problem is that he’s constipated.” So, of course, he was constipated. I found it out. They prescribed him something, and now he’s going regularly, but I’m like, wow. I told them, “I’m not a nurse or a doctor, but just being here, and I’m the one catching these…” and then I said, “How does his urine look?” Because I’m Googling different things. And then he said, “I’m glad you bring that up. His urine is a little cloudy. I’m going to tell the doctor I think we need to get him on more antibiotics, and we need to run it.” And then he had a staphylococcus infection, and then the pneumonia’s now gone.
Isaac: So, he’s still on antibiotics. So, I said, “Well, maybe isn’t that affecting maybe why he can’t wean off the ventilator?” And they said, “Well, your dad’s very weak and fragile. He doesn’t have enough muscle mass and his energy, and he has cancer, so I don’t think he’s going to be strong enough to… I think he’s going to be on a ventilator for the rest of his life. If you want him home, we can make the decision on what to do,” and I’m kind of like, “Well, I’ve been crying a lot because it’s heartbreaking, because I want my dad home with hospice.” I don’t want him in a nursing home, and they said he has to have a tracheostomy with a ventilator. Nobody’s going to take him home with a tracheostomy with a ventilator. And then, they were telling me right now if I agree to do the gastrostomy tube (G-tube) in his stomach… and I told them that if this is too soon to make a decision on this, because I wanted to talk to you first.
Isaac: And I told them I’m hoping he continues to try to wean off the ventilator and a miracle comes in, his lungs get better. Maybe it’s been the pneumonia, and that’s why his lungs aren’t strong enough. But they think that’s not the factor. I’m not a doctor or a nurse. I’m just hoping for a miracle.
Patrik: Yeah. Okay. Isaac, let’s look at a couple of things. Can you send me a picture of the ventilator? You think you can do that?
Isaac: Yeah.
Patrik: Can you send me a picture of the bedside monitor?
Isaac: Yeah.
Patrik: Do you have access to the medical records?
Isaac: No.
Patrik: You are the power of attorney.
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Isaac: I never got one. Before he went under, because he gives me all authorization to make any changes on him… I don’t have the correct power of attorney. But I did have a legal form that I was getting ready, and I was thinking if he’d be able just to scratch on it, it might be good, right?
Patrik: Absolutely. So, if they need any authorization for any procedures or for anything, who do they ask? Do they ask you?
Isaac: Me.
Patrik: Yeah, okay.
Isaac: Yeah.
Patrik: So, you have at least then what’s temporary power of attorney.
Isaac: Yeah.
Patrik: So, a couple of things. We need some transparency. Ask for access to the medical records. And in this day and age, depending on the hospital, they might just… hopefully they can just send you a link to a website with a username and a password. That’s all. Okay?
Isaac: Okay. And they might be able to-
Patrik: Pardon?
Isaac: They might be able to give me that?
Patrik: Well, they have to. If you ask them for it, they have to.
Isaac: Okay.
Patrik: They have to. Every state, wherever country you are, it’s part of the law. What do they have to hide?
Isaac: Yeah.
Patrik: What is it that you can’t see about your dad’s medical records?
Isaac: Yeah.
Patrik: So, that’s number one. Ask for access to the medical records. Number two, send me some pictures of the ventilator and the monitor. What we can also do is we can get on the phone to the doctors if you’d like, or to the nurses.
Isaac: Yeah.
Patrik: Right? And, we can do that now. If you want to dial them in, if you can dial them in, we can do it right now.
Isaac: Yeah. Then, what would we do from there?
Patrik: Ask some questions. So, for example, what I would want to know… So, basically, they want to do a tracheostomy. Is that correct?
Isaac: Well, she says I have two options: a BiPAP machine to go home with, but she doesn’t know when we take him off the BiPAP if he’s going to be able to breathe good on his own or even be able to eat. That’s why she’s suggesting before he goes on the BiPAP or the tracheostomy that he does a gastrostomy tube (G-tube).
Patrik: Nah. I’ll explain the gastrostomy tube (G-tube) tube to you in a second. I’ll explain it. Just one more thing. Is he on sedation at the moment? Do you know?
Isaac: Not at all.
Patrik: None at all.
Isaac: Not at all.
Patrik: Right.
Isaac: He was in the beginning.
Patrik: Right. Okay. Can he tolerate the breathing tube?
Isaac: Yeah.
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Patrik: Okay. So, well, that’s good to know that he’s not on any sedation, because if he’s not on any sedation, then the next question is, what ventilator settings is he on? And I’ll tell you why this is so important.
Isaac: 25.
Patrik: Nah. What?
Isaac: He’s on 25-
Patrik: Just stop. Just stop. Just stop. A lot of clients always tell me, “Yeah, he’s on 25.” There are 10 other numbers you need to look at when someone is on a ventilator. So, 25 doesn’t mean anything.
Isaac: Oh, okay.
Patrik: It needs to be in context. Okay?
Isaac: Okay.
Patrik: It needs to be in context. That’s why I’m saying, send me a picture of the ventilator, or we call the nurse now and find out what ventilator settings he’s on. The reason this is important, if he’s off sedation, he might be closer to coming off the ventilator than you think. The reason-
Isaac: Yeah.
Patrik: The reason they probably want to do a tracheostomy and a gastrostomy tube (G-tube) is they want to send him to LTAC. Have you heard of LTAC?
Isaac: No.
Patrik: Right. LTAC stands for long-term acute care. A lot of ICUs want to do a tracheostomy as quickly as possible to send patients to LTAC. Again, LTAC stands for long-term acute care. What it basically is, it’s a long-term rehabilitation, which is stupid in and of itself because if people can be extubated and avoid the tracheostomy, why would you do a tracheostomy and send them to another facility? But a lot of ICUs have become complacent and they just do a tracheostomy rather than focusing on getting patients extubated.
Isaac: Yeah.
Patrik: Right? So, that, and because they’re probably planning to send him to LTAC, they also want to do a percutaneous endoscopic gastrostomy (PEG) tube. Do not consent to a percutaneous endoscopic gastrostomy (PEG) tube. Do not.
Isaac: Okay.
Patrik: The reason for that is, patients… Does he have a nasogastric tube?
Isaac: What’s that?
Patrik: Does he have a feeding tube in his nose?
Isaac: Yeah.
Patrik: Okay. That’s more than sufficient.
Isaac: Okay.
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Patrik: That’s more than sufficient for nutrition. Once someone has a percutaneous endoscopic gastrostomy (PEG) tube, it’s almost like a permanency… There’s almost like a permanency to it, and it makes people very complacent. A percutaneous endoscopic gastrostomy (PEG) tube, similar to a tracheostomy, has its time and its place, but…
Isaac: Yeah.
Patrik: … it’s too early after two weeks. Too early. They’re trying to de-condition your dad.
Isaac: Yeah. That’s why I told them, I think we just need to wait on all this. They said, “Well, we could schedule this tomorrow.” I go, “No, no, I don’t want to schedule it. I want to talk to my family, speak to a couple of other people, and then we-
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Patrik: No.
Isaac: Yeah.
Patrik: You don’t give consent. You don’t give consent to a percutaneous endoscopic gastrostomy (PEG) tube. So, the next step really is we need to find out what ventilator settings he’s on. We need to find out what medications is he on. Those would be the most important information to get to find out is it realistic for your dad that he can come off the ventilator without a tracheostomy or does he needs a tracheostomy.
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
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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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