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
My Dad Can’t Come Off the Ventilator in ICU. Is Tracheostomy the Right Thing to Do For My Dad?
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 Tony, as part of my 1:1 consulting and advocacy service! Tony’s dad is on a ventilator in the ICU after an open- heart surgery and Tony asks why the ICU team says that his dad will get worse if he stays longer in the ICU.
The ICU Team Says that if My Dad Stays Longer in ICU, He Can Get Worse! Help!
Mark: But how can we schedule a time where you’re going to be there and then what’s your fees, and how do we go about stuff like that?
Patrik: Tony, how have you been getting updates so far? What does that look like?
Tony: Okay. For the most part, the nurse that’s in charge, will answer me most of the questions. But most of the times, if I just call the number, the extension for ICU, that person that’s there will transfer me to whoever’s my dad’s nurse. But when there is a case where they did do a CAT scan, the person that calls me is the one that can interpret the CAT scan.
Tony: I never did write what was that person’s position. From what I’m looking at here, I just write that, that’s this person that called me and their name and who they are from the hospital. The only person I know I spoke to that was a specialist was actually the cardiologist when he was down, and 10 days later, when he was awake.
Tony: He went and put the iPad video so we could see him. But in between, I called the extension they told me to call. I asked for vitals, I asked for different things and I have the doctor’s name I speak to, not what’s their position, who they are or anything like that. So I’m not sure if I spoke to a specialist.
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Patrik: All right. Okay. Well, let me ask you this. Do you think you can set up a phone call with a doctor for a specific time? Do you think you can do that?
Tony: For me to speak to the neurologist or cardiologist?
Patrik: Well, ideally I feel neurologist and cardiologist, ideally, because they’re the three specialists that are probably involved.
Tony: Right, because what I have sometimes is the nurse that’s in charge because they have a nurse for each of these patients. There’s about six of them and six nurses. So what I talk to is the nurse that’s there. So I would have to ask for his doctor? Is that what I’m asking for?
Patrik: Pretty much, pretty much. When was the last time you have spoken to all of the doctors?
Tony: Today, the person I spoke to, Mark, who do think he was? Just the nurse I speak to downstairs?
Mark: That was a nurse.
Tony: Yeah, I spoke to the nurse or the doctor.
Mark: And then the poor nurse was stressed because he could not answer the questions and all he wanted to know is to write down that he got a consent. So, I mean, what I see from there is just that whoever you think about what time, I mean, if you tell us what’s your availability and fees and things are.
Mark: And then I don’t know if you have a strict time or if he could reach you when he gets to the doctor, when he gets a chance to actually get the doctor on the phone, if it’s possible to reach you then? I don’t know how flexible you are.
Patrik: Look, it has to be when you call the nurse or the nurse in charge, you get a fair bit of information. I have no concerns that we will get more information from the nurse in charge because I am a nurse by background, I am a critical care nurse. I have no concerns that no matter when I’m going to talk to the doctor or to the nurse, that I will get all the information.
Tony: Okay.
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Patrik: So, yes. Look, we can start with a phone call to the nurse that’s looking after your dad. We can start with a phone call to the nurse in charge, we could do both. I have no concerns that no matter who I’m going to talk to, that I will get all the information that will lead to you making a decision that is right for your dad.
Patrik: And then hopefully we can work our way up to the doctors. But I don’t think it’s unreasonable for you as a family to go back to the hospital and say, “Hey, I want a meeting with the doctors tomorrow,” or whatever it is. I don’t think that’s unreasonable at all, given that they want to make a decision as well.
Mark: Okay.
Patrik: That’s not unreasonable, is it?
Mark: It’s not.
Mark: Right. It’s not. I can just ask them and they can tell me what time they’ll be available. And then I can-
Patrik: Exactly.
Tony: … I can plan out exactly-
Patrik: And then just schedule a time with me. I can be flexible. You’ll tell me what time is convenient for them. And I assume they are very busy. I would imagine there’s probably in the ICU, there’s COVID and all sorts of things. They are very busy at the moment, I get that. But nevertheless, you need to make an informed decision.
Tony: Right. They did say if he stays in there much longer, because he’s actually not moving, he could get worse, like other things start shutting down. And they also said yesterday, he had a lot of fluid in his body, so they didn’t even speak about the PEG. They gave him a treatment for fluid. And today, they said they actually revealed less water.
Tony: So today, then they’re like, “Okay, can I have a consent?” So maybe yesterday it’s because of the water why they didn’t even bother finding out if we weren’t okay with the consent. So if I try to get them to at least set up an appointment for tomorrow. Today I asked them to call me at noon because that’s when I had lunchtime and they did call me at noon, but that was to get the consent so I can try and see what they can set up between tomorrow and Friday.
Patrik: Consent for what?
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Tony: I can try and see what appointment they can set up between tomorrow, Thursday and Friday.
Mark: Get their consent for what? Consent for the PEG or?
Tony: Oh, they were trying to get consent for the PEG.
Patrik: Have you given consent for the PEG?
Mark: No.
Tony: No, not yet.
Patrik: Good. That’s good. Good move. You got to get more information.
Tony: We were waiting to find out. Yeah, we were trying to gather information, see what it is. But they said, “He’s not being fed properly. We don’t want him to die. He’s not eating properly,” so that’s why they keep pushing it.
Patrik: Yes. Does he have a nasal gastric tube or a tube in his mouth for feeding?
Tony: NG, yes. They say NG.
Patrik: So they can feed him through the nasal gastric tube for weeks, so that’s why I’m saying, they’re only telling you half of the story.
Mark: Yeah exactly, because you know what? The other day, was that last week Tony, when we were on the phone?
Tony: They were rushing it.
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Mark: And they wanted us to give consent on the phone right there. I said, “No, no, ma’am. We’re not giving any consent on the phone.” That was last week. And so they’re still rushing it. I agree with you, Tony, what you’re doing is the right thing to do. So let’s see. I don’t know how much time you have. I mean, if it’s something that it can even be today that you call the nurse, at least to just get… Wouldn’t the nurse be able to read the chart off to you?
Patrik: Oh yeah, absolutely. I believe I will get all information from the nurse that you will need to make a decision. Just bear in mind, it’s better to talk to a doctor, but the nurse-
Mark: No, I mean you could get some today and then I don’t know if you want to do some today, some tomorrow, so you know what you’re dealing with or if you were to wait to just talk directly to the doctor. You know what I’m saying?
Patrik: Absolutely. But again, I don’t think it’s unreasonable for you as a family, to request a meeting with the doctor. That’s not unreasonable at all.
Mark: Okay. Thank you.
Tony: Okay.
Mark: That’s at least some hope that we know we’re doing the right thing. I mean, waiting out a decision because even with the heart surgery, we feel like it just went too fast. It went just so quickly. I mean, they said he wouldn’t get another stroke and die, but I mean, personally, I don’t really go for surgery. I haven’t had any. Just like you see, my dad’s 79, have not had any surgery.
Mark: I’m just like natural, natural, kale and all this craziness. But anyway, so after my brother had a little surgery that wasn’t a big deal, just a removal of something real small, we all become lax about it. So we didn’t really… Because I mean, I was really worried about it, but I didn’t know there was so much to it.
Mark: They told us the good side. They said, “He has a 60% chance of living if we fix this issue here,” but they didn’t tell us that, “While we’re fixing it, this might happen,” this is what we could expect. When we heard that he would not get up and they’re telling us almost like to prepare a funeral-
Tony: We were crying. Devastating.
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Mark: … it was mind blowing. It was just all of a sudden. And then less than a week later, he woke up. And but they made it sound like he was never going to wake up.
Patrik: Do not get pressured by them. And you can already see, there is no issue with nutrition. They can feed him through the nasal gastric tube for many weeks to come. So you can tell them that straight away, that there is no urgency to consent to a PEG, that they can feed him through the nasal gastric tube for many weeks to come. They can take that pressure off your plate straight away.
Mark: Okay.
Patrik: Tell them that.
Mark: Are you saying that is four weeks? Is that what you’re saying?
Patrik: Oh, for many weeks. The nasal gastric tubes can be fed for months. Look, there is no urgency with that decision. Absolutely not. With the tracheostomy, maybe there is a little bit more urgency there, but we’ll find out once we speak to the doctors or the nurses.
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Mark: Thank you. That’s helpful to know.
Patrik: I need to go now, but I’ll tell you what I’ll do. I’ll send you the consulting and advocacy options. You can have a look what works best for you. We can just start with an hour. That is the most cost effective.
Patrik: I do believe we could do a lot in an hour, but if you want to have another solution, although there are options where you have access to me for many days. You have a look and then you can make a decision from there.
Mark: Okay.
Tony: Okay.
Patrik: So I think it might take me a little while, a couple of hours before I say, “Do the options,” but you’ll get that soon and then you can reach out to me.
Tony: Okay. All right. No problem. Thank you.
Patrik: No, thank you. Pleasure.
Tony: Patrik..
Patrik: Pardon?
Tony: Let me just ask you, I get off work 03:30 and so does my sister. So if we were to ask them for an appointment, let’s say four o’clock, is that a time that would be good for you if they can do it? Four o’clock?
Patrik: Yeah, four o’clock.
Tony: Yes.
Patrik: Yeah, that’s fine.
Tony: Okay. So I’m going to try to see, can they do it around that time and then see what we can do.
Patrik: Perfect, perfect.
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Tony: Okay.
Patrik: I’ve got to go. I’ll end the call now. Thank you so much for your time. Look out for the email.
Patrik: Thank you, bye.
Mark: Okay, all right. Take care.
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 to stop being intimidated by the Intensive Care team and how you will be seen as equals
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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!