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
What Are the Right Questions to Ask So My Mom Can Get the Best Care & Treatment in ICU?
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 Lloyd, as part of my 1:1 consulting and advocacy service! Lloyd’s mom is in ICU, ventilated, and he is asking why the doctors are rushing to do the tracheostomy and PEG for his mom.
Why Are the Doctors in a Hurry to Do a Tracheostomy & PEG (Percutaneous Endoscopic Gastrostomy) for My Mom in ICU? Help!
“You can also check out previous 1:1 consulting and advocacy sessions with me and Lloyd here.”
Patrik: Hi Lloyd! How’s your mom?
Lloyd: Hi Patrik! We wanted to give you a status of what was going on in terms of, they’re going to try to extubate my mom again tomorrow. So that would be the second time.
Patrik: The second attempt.
Lloyd: Yeah, the second attempt. If it doesn’t work, then they’re going to go to-
Patrik: Tracheostomy.
Lloyd: Tracheostomy. Yeah, tracheostomy . They’re still pushing for, I guess, a plug, I guess, even if-
Patrik: A plug? What do you mean?
Lloyd: Because they said she’s not… Oh, I mean like the tube in the stomach, I guess.
Patrik: Oh, okay. Okay. I would strongly recommend under no circumstances do not give consent to a PEG (Percutaneous Endoscopic Gastrostomy), tracheostomy, depending on what you’re telling me, I would say possibly yes but do not give consent to a PEG tube.
Lloyd: How do I tell them no? I mean, I can-
Patrik: You tell them no.
Lloyd: No. Okay. We just say that we want to continue with it, because today I was talking to them and they were basically saying that it’s going to cause damage in the mucosa and-
Patrik: Yeah, I’ll give you my take on that. So the Percutaneous Endoscopic Gastrostomy tube. This is probably very unique in your country that a lot of patients that end up with a tracheostomy in ICU, they want to send them out to Long Term Acute Care (LTAC) or to subacute or to a skilled nursing facility as quickly as possible. Those facilities can only take a patient with a trache if they have a PEG tube, right?
Lloyd: Uh-huh.
Patrik: In other countries, patients stay in ICU until they get weaned off of ventilator and they stay in ICU with a nasogastric tube. No issues. So the PEG is a vehicle to get your dad out of ICU. That’s what it is.
Lloyd: Oh, I got you.
Patrik: They’re not just telling you.
Lloyd: But in our location, as far as you know, if I say no, they have to adhere to it.
Patrik : 100%. I mean, if you don’t give consent to a PEG tube or to a tracheostomy and they do it, that’s bodily harm as far as I’m concerned.
Lloyd: Okay.
Patrik: Because she got the nasogastric tube. The only concern, is she pulling at the tube? Is she at risk of pulling it out?
Lloyd: No, she can’t even move her hands. She withdraws, but she can’t move her hands.
Patrik: So, she’s not making any deliberate attempts to pull it out.
Lloyd: Right.
Patrik: That is the only reason, if she’s non-compliant, pulling out the tube, that would be different. As long as she can tolerate it, there’s absolutely no reason why she can’t keep it. The only thing is because it’s in the nose, they do need to look after the tube every day, putting some cream around it so it’s not causing any pressure sores. Sure. But the same, they need to do with a PEG tube. They need to change the dressing every day on a PEG tube so it’s not causing any sores. A PEG tube is a surgical procedure. A nasogastric tube is not a surgical procedure.
Lloyd: Okay. The nasal gastric tube, how often can they put it in and out? How long?
Patrik: Look, the ideal scenario is obviously for the tube to stay in for as long as she needs it. Let’s just say, God forbid, she develops a pressure sore in her nostril and it’s going to be painful for her, they could put it in the other nostril. Okay. It can stay in, I’d say, for up to six months, again, assuming it’s not causing any pain, not causing any pressure sores, and assuming she’s not going to pull it out.
Lloyd: Yeah. Okay.
Patrik: Right.
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Lloyd: So, can they… Oh, go ahead. Sorry.
Patrik: Yeah. Just to illustrate that, again, if you were in another country, that question wouldn’t even come up at this stage.
Lloyd: Okay.
Belle: So, this is Belle. Can I interrupt for one second?
Patrik: Please.
Belle: I don’t know if you covered this in the beginning, but the doctor was saying that the reason for the feeding tube is that the type of stroke that she had, the pontine stroke has impacted her swallowing and she doesn’t suspect it’s going to recover very quickly so she is going ultimately to need this anyway. So that’s his argument. So it’s hard, we can say that.
Patrik: Yeah. And she might. I’m not saying that she never needs a PEG at the moment. If she was six months down the track and no improvement has been made, I would probably agree with that, but at the moment you’re talking about less than two weeks?
Lloyd: Right now, yeah. On Sunday, it’s going to be two weeks since she was trached. I mean not trached, vented.
Patrik: Vented. Yeah. Yeah.
Lloyd: Vented.
Patrik: Yeah. From my experience, here is when someone needs a PEG tube, when people can’t come off ventilators when people can’t come off tracheostomies, when people can’t swallow, can’t eat. In the long term, yes, absolutely, they need a PEG tube. I argue they haven’t even done a swallow test yet.
Lloyd: Yeah. Can they do the swallow test with the nasal tube?
Patrik: They should be able to. She probably needs a speech therapy assessment.
Lloyd: Okay.
Belle: Yeah, they did mention that they were going to need that and do that assessment, but the doctor was making it sound like if they ultimately had to do a trache, ideally, they’d even like to do both surgeries at once, even though he admitted they can’t do that.
Patrik: Of course.
Belle: So, I pushed them on that and I said, “Why can’t we wait? If we had to do a trache, and then wait and see how she bounces back after that before we did the other surgery for the stomach.” He’s” making it sound like it’s almost cruel to not do the stomach surgery.
Patrik: As I said, it’s a ploy to… Okay. Let me illustrate. Let me explain this differently. By you not giving consent to a PEG tube, they won’t be able to send her to an LTAC. If you do give consent to a PEG tube and she has a tracheostomy, they will try and send her out the next day. They just haven’t told you yet.
Lloyd: Yeah.
Belle: But actually, He did tell us that she would be better suited for rehab (rehabilitation) and as a positive thing, that if we’ll get her to rehab and they can do a better job than they can in the hospital.
Patrik: Yep.
Lloyd: Yeah, they said that they’re not equipped here to do the intensive therapy. They have some sort of rehab, but very limited rehab here.
Patrik: Yeah. I urge you as a next step to start with looking up the reviews of those rehab facilities online. I would recommend you to do that as a next step. Another step that I would recommend you to do, and I’m sure you’re just as time-poor as everybody else, have a look at those facilities. Go there and look at what you see. So, the rehab facilities, from my experience, are a better version of a nursing home, right? Your mom currently is probably in the most vulnerable position she’s ever been in her lifetime. Is that fair to say?
Lloyd: Yes, absolutely.
Patrik: Right. So sending someone in such a critical condition to what I believe is a better version of a nursing home is madness. Of course, that’s what they’re telling you, that they’re much better equipped to do the rehabilitation than they are. My experience is that’s a good sales pitch, not happening in reality. Have a look at their online reviews.
Lloyd: Okay. I’ll do that. I’ll ask him the three facilities.
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Patrik: Lloyd, I just texted you an article about the main difference between PEG versus nasogastric tube. When I still worked in ICU, we looked after patients in ICU with the nasogastric tube for months on end. No issue.
Lloyd: Okay.
Patrik: Here is another thing, a PEG tube, there is a perception of permanency around it. So what do I mean by that? A nasogastric tube is temporary, right? I believe irrespective of the diagnosis for your mom at the moment, I do believe that in the long run your mom should not have a PEG tube and they should make every attempt to get her back to eat again. There is the perception in the medical field and probably also in the nursing field that once someone has a PEG tube, they will never, ever eat again. There’s also a perception issue, right? Whilst I hear what they’re saying in terms of swallowing, she hasn’t even had a swallow assessment.
Lloyd: Right. Yeah. And that’s what they’re worried about, not that they’re worried about. They’re saying that they don’t think that she would be able to swallow. I pushed him on that. I was like, “How do you know she won’t be able to swallow?”
Patrik: Once she has a PEG, they won’t even try.
Lloyd: Yeah. Okay. And so-
Belle: But he’s also saying she’s not even swallowing saliva. He’s going to the extreme and saying she may not even be able to swallow saliva, which seems to me if she couldn’t do that, they couldn’t even take her off the breathing tube. Why would they be taking her off her breathing tube if that were the case?
Patrik: If she can’t swallow, let’s just take the worst-case scenario, what they’re predicting. She can’t swallow and she can’t swallow her own saliva. Let’s just say that’s the case. She will most likely then need a tracheostomy in the long run, not necessarily ventilation. Not necessarily, but she will probably need a tracheostomy to protect her airway because if she can’t swallow, that means saliva would go down the lungs, which would cause an aspiration pneumonia. If she can’t swallow, yes, she would need a PEG tube in the long run, I agree with that, but it’s not even been two weeks. I know for you two weeks sounds like an eternity. It’s nothing in the biggest scheme of things.
Belle: Yeah, it seems.
Patrik: It’s nothing.
Lloyd: I mean, she’s yawning and she’s coughing. Even-
Patrik: Oh, good.
Lloyd: … with the vent, she’s trying to cough stuff up. When they try to pull out those mucus, she coughs when they do that. So, she has a strong cough and that to me, I think, is promising, but I don’t know. I’m not an expert. I don’t know if by the mere of yawning, she’s moving her tongue, but I don’t know if it’s intentional or if it’s just a reflex.
Patrik: Right. It’s probably could be a bit of both. I mean, it’s good to hear that she’s coughing. That’s really important because that means she can, to a degree, protect her airway.
Lloyd: Okay. Okay. That’s good. Okay. That’s good to hear. Her eyes are opening as we speak.
Patrik: Great.
Lloyd: So she is looking at me. She was opening her eyes, a number of times today. But the only thing is that they’re giving her antibiotics. She still has a little bit of pneumonia, they say a little bit of pneumonia in her chest and that she’s been very tired because of the pneumonia. I mean, not pneumonia. I don’t know if it’s like… Does antibiotics cause tiredness?
Patrik: Yeah, antibiotics can cause tiredness. I guess when someone is in a situation like your mom, it’s probably a combination of everything that’s happening.
Lloyd: Okay.
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Patrik: But would you say-
Belle: Do you think it’s pretty much true? Sorry. Go ahead.
Patrik: Would you say there has been progress overall?
Lloyd: Between yesterday and today, yes, definitely, because yesterday, she’s trying to fight an infection and I guess she’s been sleeping a lot. She didn’t even wake up at all yesterday for the most part, but today there, I would say, maybe a total of 20 or 30 minutes throughout the day. I know it’s not much, but given that she’s been sleeping and fighting this whatever… She’s been spiking fevers throughout the last week or so. And then today they just changed. They had an infectious doctor come, and they’re tweaking the antibiotics because they weren’t able to grow the culture for that. They did a sputum test, I guess, they took-
Patrik: Yeah. Yeah. Yeah.
Lloyd: They were trying to grow the culture, but they couldn’t. It wasn’t growing. The X-rays show that the lungs have cleared a lot. The three chest X-rays ago, it was worse. Yesterday was better and today is even better. And so, it’s mostly clear. It’s just that at the bottom lobes that you can see in the whole space opacity.
Patrik: Right. Okay. That’s good. With the trache and they want to do it… Have they given you a date?
Lloyd: Tomorrow. Well, they won’t. They’re going to try to do-
Belle: The trache tube.
Lloyd: Because we were pushing for the extubation and so they’re going to do it tomorrow, but they said they can’t do it straight. If she fails, they can’t do it straight to trache. They’re going to have to intubate her again and then do the trache.
Patrik: Yes. No, I agree.
Belle: Does it sound premature that they’re going to try tomorrow? Should they wait another day, do you think? I mean, the doctor seemed yesterday to be not optimistic. And then today he said, “She’s better today. Let’s try it tomorrow, if she’s even better tomorrow.” So, I’m surprised that the doctor came around in 24 hours from, “No way we’re going to try this,” to “Let’s give it a try to extubate her.”
Patrik: Right. Do you know what ventilator settings she’s on?
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Lloyd: I can go look at the back.
Patrik: Can you send me a picture?
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!
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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