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
The ICU Doctor Says that My Wife Won’t Ever Speak Again After Tracheostomy Removal! Is that true? Help!
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 Walter, as part of my 1:1 consulting and advocacy service! Walter’s wife had a stroke in the ICU and has a
tracheostomy. Walter asks how he can have control & power in making decisions for his wife with a tracheostomy in ICU.
How Can I Have Control & Power in Making Decisions for My Wife with a Tracheostomy in ICU?
Patrik: Can she give consent?
Walter: Well, I have the power of attorney.
Patrik: Yes, but do-
Walter: But I guess it doesn’t-
Patrik: Do you believe that she’s cognitively intact so she can give consent and make the right decisions?
Walter: No.
Patrik: Right. Okay.
Walter: No.
Patrik: If that is the case, then you are the one needing to give consent, and that means, if you are not consenting to a tracheostomy removal, they shouldn’t do it. Now, here is what I would recommend as a next step. I do believe that you and I should get on a call with whoever is making medical decisions there.
Walter: Okay. A three way call?
Patrik: Absolutely.
Walter: Why are they going to regard you as somebody that I… Just because I said it?
Patrik: Well, I would-
Walter: I said, “I want you to talk to this person,” and they’re going to say, “Well, this is between you and…” I mean, these people are… I don’t know how to explain it, but they are right and you are nothing.
Patrik: Oh no, no. Okay. So here is how to approach this Walter.
Walter: Thank you.
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Patrik: The best way to approach this is, we set up a call for a certain time, ideally, and then all you say to them is, “Look, I’ve got Patrik here. He’s a family friend or he’s my nephew or my cousin, whatever. Just approach it in a very friendly manner, and just say something like, “You know, he’s just trying to help me to make decisions.” And then we can ask questions. So don’t over-complicate. Don’t be threatened by-
Walter: Don’t say you’re somebody you’re not.
Patrik: Correct. It’s not about who is who. It’s about getting information in a friendly way, so that you can make decisions, you know?
Walter: Yeah. So, you think it’s possible or am I correct in thinking that you think it’s possible for her having that tracheostomy out and still surviving and speaking?
Patrik: Very much so, unless they’ve damaged the vocal chords throughout this process.
Walter: Okay. The vocal cords are supposed to be… They keep telling me they’re severely… That she is severely… What is the word? Paralyzed.
Patrik: Paralyzed?
Walter: But she talks.
Patrik: Yeah. So they can’t be severely paralyzed if she’s talking.
Walter: I know.
Patrik: But they are paralyzed because the tracheostomy is paralyzing them. However-
Walter: Yes.
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Patrik: …Once the tracheostomy is out, she should be back… It might take a little bit, but most people talk again.
Walter: Of course it would take a little bit. Of course it would. Oh my God. So after that, after we speak with the three-way call, that would be the first thing, and then what are we going to do? There won’t be anything else to do?
Patrik: Well, let’s gather information. Who do you normally talk to when it comes to these? Who’s telling you that they need to do surgery to remove the tracheostomy? Who’s telling you that?
Walter: No one has told me that. Precy told me yesterday that she was going to have an operation, and I said, “You’re going to have an operation? And then I tried everybody to find out… Everybody on the floor to find out what that meant, because she… At this time, they hadn’t even admitted her to the hospital, and she’s been there a week and a half. They told me that they were going to send her back to the nursing home, and then I said,
“Don’t touch her. Don’t dare send her back to that nursing home.” Then they’ve done things there that I think have helped her. I mean, other than they are keeping the thing down her throat, but they’re housing her as though it’s a very, very good nursing home.
Patrik: Right.
Walter: But now, without ever talking to me, they called up a specialist and had her come over, and she gave Precy two options. “You can keep the trach in and go home that way, if you want. But we want you to go to a long-term care place, or you can have it out and you will never speak again.” So you can imagine how devastated she was, and they never even… And they did it at 9:00 yesterday morning, on Saturday.
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Patrik: Right. That’s no good. Here is my take with going home. I mean, if she… Did they elaborate on going home with a trach, or did they just…?
Walter: No.
Patrik: No? Okay.
Walter: No. They don’t want her to go home. They’re trying to stop me from taking her.
Patrik: Right. You see, here are my sort of… I’m all for going home, but, if I was you, going home without a trach would be so much easier.
Walter: Definitely.
Patrik: You know that already.
Walter: I would definitely do that if I thought that she could even say syllables to me, one syllable. Yes. No. Whatever. So she could express herself somewhat, but they say she would never be able to speak. Now that, as I’m talking to you, I’m thinking, “Oh my God, this is really worse, in terms of the motivation, than you can possibly imagine.”
Patrik: Absolutely.
Walter: Because if it’s not true that she won’t speak… If that is not true, that just proves right there that it’s just a conveyor belt to cemetery, and along the way, a lot of money is going to be taken out of the government’s coffers.
Patrik: That’s terrible. As I said, there probably is… There would have been some cases in the past, where when a trach is removed, that people can’t talk, but from my experience, it’s far and few in between.
Walter: Can you tell me again what your experience is?
Patrik: Yeah, so-
Walter: Because I need to understand what people are experiencing.
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Patrik: Yeah. I can tell you a little bit about or can give you my sort of history. I started out in intensive care nursing in ’99, over 20 years ago, and I worked in different countries and also set up… And also have experience with Intensive Care at Home, where we’re looking after ventilated and tracheostomy patients at home. So I’ve done the whole facet, tracheostomy in hospitals, tracheostomy at home. I’ve done the whole facet. Whilst most patients that I worked with over the decades have their tracheostomy in, I’ve also seen enough decannulations to tell you that A) there’s no surgery needed and B) people can talk.
Walter: I looked at the diagrams of how it’s done. In fact, I put a cannula for the first time into Precy, and I did it fine the other day, with a nurse, was standing there. She said, “Why don’t you do it?” And I did it.
Patrik: Yep. Sure.
Walter: So what is the problem?
Patrik: The problem with a trach is that things can go wrong. Things can go wrong. I argue from my experience that if your wife was going home with a trach, you need an ICU nurse there 24 hours, but you know, that’s a bridge you could cross down the line. Your goal at the moment should be to have that trach removed.
Walter: I’m writing it down, remove trach. What’s my reason for wanting the trach out that I would say to them, because I think such and such?
Patrik: I think it’s quite simple if she… That’s why I asked you the question earlier, is your wife coughing? Is she following commands? If she’s coughing, swallowing, and following commands, there shouldn’t be a reason why she needs the trach in.
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Walter: Oh my God.
Patrik: Can she swallow?
Walter: So you said… She swallows poorly at this time, so this is how I’m working with her. When I feed her, I put a small amount on the spoon. She tells me what she… Which food she wants next. Then I say, “Okay,” and then I give her the spoon. So she puts it in her mouth, and then she… Then I say to her, “No, let your tongue go up on the roof of your mouth, so you swish it around before you swallow.” Then we have to rest. Then this is my
protocol. This has nothing to do with those nurses. Yeah. They’d have just leave the food in front of her and let her eat, and then the next day, when I come in there, she can barely talk.
Patrik: Right. Does-
Walter: Then I say, “Now we’ll have a little bit of water,” and do the same thing again and then rest. Then what’s next, she chooses what’s next. I put it on the spoon. I hand it to her. She takes it. She swishes it around, and she comes out at the end. She doesn’t want to take that much. She’s like 7, 8, maybe even… The most is 9 spoonful of food, because this is new now. Then she says, “Oh, I don’t want any more, and I say, “Okay,
you did a great job.” She still has the port in her belly for the bags of Ensure.
Patrik: That was my next question, so she does have a PEG tube?
Walter: Yes.
Patrik: Right. Any talk about, if they do remove the trach that the PEG tube would be removed as well? Any talk about that?
Walter: No talk whatsoever. No talk to me about anything.
Patrik: How often do you see your wife?
Walter: Every day for about 7-8 hours.
Patrik: Right. Who’s giving you the updates? Who do you talk to?
Walter: I have to beg them to tell me something. Then they go to the computer, and they look it up. They don’t know what’s going on. I’m telling you, they don’t know. It’s all… It’s a factory that doesn’t have its act together.
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Patrik: Right. Who’s making decisions? Is it a doctor? Is it the senior nurse?
Walter: Some doctor is, and then there’s a head nurse. And then the young people who are the CNAs, the techs that help you. I did see the doctor a couple of days ago, and she said that she was giving me a new person. This new person is the one that wants her to leave and go to a nursing home, this new doctor. Now, these doctors are all from different countries.
Patrik: Sure.
Walter: This is a very good, supposedly, used to be, a wonderful hospital, and we’ve stocked it with people from all over the world who are getting there. They’ve got an MD, but they don’t have… They don’t… I don’t mean to be prejudiced. Please don’t think I’m trying to be prejudiced. It’s just that they also don’t have the skills of interaction.
Patrik: No, but-
Walter: …And they’re very proud of themselves because they’re doctors.
Patrik: Sure.
Walter: They’re very proud of themselves.
Patrik: No bedside manners.
Walter: Yes.
Patrik: Right. Okay.
Walter: And that PEG tube has to be cleaned, which I can do. I can do that. Then that means a hospitalization, doesn’t it? I think.
Patrik: I’m not worried about the PEG tube.
Patrik: I’m not worried about the PEG tube. You can go home with a PEG tube. I would be worried, you going home with a trach and not having ICU nurses. I would be worried about that. But yeah, that’s… I think the trach, it sounds to me like, is close to hopefully coming out, and that’s what you should be aiming for, I believe.
Walter: And stop thinking that it’s going to be a no? What could possibly be the motivation of someone that was going to take a trach out and they say, “You’ll never speak again”?
Patrik: Hospitals, doctors are negative by default. It’s always about managing expectations. You got to read between the lines. I’m sure… What did they tell you when your wife went into ICU? They probably told you she’s not going to make it. Would that be accurate?
Walter: They never told me anything.
Patrik: Right. That’s interesting. Okay.
Walter: I was not allowed to see her for more than two weeks.
Patrik: Because of COVID?
Walter: Yeah.
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Patrik: Right. Okay. That’s interesting. Okay. But it’s about managing expectations. If they tell you they take the trach out and your wife will talk, and then she doesn’t, they could be in all sorts of trouble. By them telling you they take out the trach and your wife won’t talk, they’re managing expectations.
Walter: Then they’re heroes.
Patrik: Yeah, they’re heroes. It’s probably something completely different. It’s not about them being heroes. It’s about you not having the ability to sue them, if they promise you something they can’t keep.
Walter: Exactly. Oh, I know that’s true. That is true.
Patrik: Right. So it’s-
Walter: The whole thing is about not suing them-
Patrik: Correct.
Walter: …And them not getting in trouble, and not caring about the family. Not caring about the person.
Patrik: Correct. It’s not the-
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Walter: Not even being able to see that this one… Hey, this one is really smart. And she’s been all over the world, helping people with feeding programs all over these countries. She can tell you all about it right now if you would just listen to her, and then you can see that she’s worth a little extra energy. No, she’s just a lady laying there. Well, is there anything more to talk? Do I have another half an hour or have we used up the
whole hour?
Patrik: Yes. No. We’ve used half an hour. I would suggest, to make the best use of your time, Walter, let’s talk to someone who is in charge of taking out that trach.
Walter: Yeah.
Patrik: Right. Well, we can set up a phone call.
Walter: Okay. I’d rather call you to get the phone call, because I just don’t know what I’m doing. Is that okay with you?
Patrik: That’s absolutely fine.
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Walter: Okay. From far away, what you’ve done for me, is you have concretized exactly the way I feel about this whole thing. I still don’t know what I’m going to do about it, but I… That woman just called, and I’m going to talk to her. She’s probably the new social worker, because she said to me, “I hear you have some concerns.” So that means to me, she’s a social worker.
Patrik: Right. Okay. Look, you’ve got more insights, which is good. You’ve got more insights now. I’d say, let’s talk to someone who’s in charge of taking out the trach, and we’ll go from there.
Walter: Okay. All right. I so appreciate this, Patrik, and I’ll be calling you in the next 48 hours.
Patrik: Pleasure. Pleasure, Walter.
Walter: All right?
Patrik: Take care for now.
Walter: Later than that. Okay. Goodbye.
Patrik: Goodbye.
Walter: Thank you.
Patrik: Pleasure. You’re welcome. Bye.
The 1:1 consulting session will continue in next week’s episode.
