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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
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 Julie as part of my 1:1 consulting and advocacy service! Julie’s mother is critically ill in the ICU and she is asking regarding the importance of a written agenda during family meetings with the doctors.
My Mom Has Sepsis in the ICU. Why is it a Must to Have a Written Agenda For My Mom During Family Meetings With the Doctors?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Julie here.”
Patrik: Okay, and again-
Julie: She said, “But I feel as though everything that was said in the meeting yesterday, nothing more needs to be said.” And that she feels comfortable with it. I said, well, we don’t feel comfortable with it, and I think that’s what matters.
Patrik: Yeah. Your response to that really needs to be, and what do you have to hide? Why can’t you talk to another health professional? That’s not employed. That would be my response to that. The next thing you could do is, you estimated the power of attorney. You have every right to bring somebody in. You could even go to another doctor, and you could say, “Hey, I want a second opinion.” You could do that too. The question really is what do they have to hide? That’s the question.
Julie: Okay, so I will see his willingness on it, and what she has to say about that.
Patrik: Yes, exactly.
Julie: Then I will text you on that. Because I haven’t gotten a chance to ask her what Dr. Smith said about speaking with you, so I don’t know.
Patrik: Right, right. He might actually be okay with it.
Julie: Yes.
Patrik: Right. I see. I see. Here is another thing that I haven’t mentioned yesterday, went through my mind after we came off the phone yesterday. The current statistics in ICU suggests that about 90% of patients in ICU survive. Okay, that’s the overwhelming majority. Okay. So the question in a situation like that should always be why would my mom not survive this? Because the odds are in her favour. Don’t get me wrong. People die in ICU. It’s part of what happens in ICU. But not the majority of people. It’s the minority of people.
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Julie: Okay.
Patrik: Okay.
Julie: Alright.
Patrik: The other thing that’s important. On Friday, when you have the family meeting, did you know about this in advance?
Julie: The night before we were told that there should be a family meeting held the next day to talk about going further, and what was going on with her currently.
Patrik: The reason I’m asking is if you had come to me on Thursday, and you would have said, “Hey, they asked us for a family meeting,” I would have said to you, “Don’t go down unless you have the agenda in writing.” And the same applies. They ask you for a family meeting, I would not go. Family meetings are designed to deliver bad news. The only reason for an ICU to hold a family meeting is to deliver bad news.
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Julie: Okay.
Patrik: Right? If they ask for another family meeting, your response needs to be, give me the meeting agenda in writing, and then we’ll see whether we’ll come or not or whether we’ll have any questions before the meeting. You need to give a very calculated response.
Julie: Okay, I will. Okay. They need to give me the agenda.
Patrik: In writing. In writing. If they say, “Look, we need to have a family meeting tomorrow at one o’clock,” tell them, “Okay, well, give me a meeting agenda in the next couple of hours, and then we’ll consider.”
Julie: Okay. Perfect. Thank you very much.
Patrik: Your communication with them is very important. You don’t need to go overboard. You want to have everything done. No meetings without an agenda. You don’t need to go overboard communicating with them, but need to be very concise. You have to.
Julie: Okay. Okay. I think they’re coming in to do an x-ray right now.
Patrik: Okay, all right.
Julie: So I’m going to talk to the nurse, and go back and see what they say about the doctor coming.
Patrik: I will craft the email in the meantime.
Julie: Okay, thank you so much.
Patrik: You’re very welcome. All the best for now.
Julie: Thank you.
Patrik: Thank you, bye. Bye.
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Patrik: Speaking.
Julie: Hi Patrik. It’s Julie. We are at the hospital and the pulmonologist, Dr. Smith is coming in the room any second now and so you can ask the questions directly to him.
Patrik: Okay.
Julie: Let me update you a little bit. I haven’t got a chance to get a whole lot about the gastrointestinal system but she did have a bowel movement and she was having quite a bit this morning.
Patrik: Okay.
Julie: And they of course have a tube to assess in getting that out of there.
Patrik: So they put in a tube.
Julie: She has a tube.
Patrik: I’m sorry, so they put in a tube, and she had some bowel movement, is that what you’re saying?
Julie: And she’s continuing to have a bowel movement and she is also off of the blood pressure medication completely today.
Patrik: Wow. That’s massive. That’s massive improvement. What happened? Do you know what happened?
Julie: I don’t know a whole lot because that’s the most that I’ve gotten so far. But I think Dr. Smith is going to give us an update, where we are and then any questions that you have for him to… you know how you wanted to talk to him for five minutes. If you could ask him all those questions too. And then also about this. So I’m so excited.
Patrik: Yeah, no, absolutely. That is massive improvement. So maybe she had bowel movement, and is that because she had an enema, or why, do you know what?
Julie: It just started this morning. They said she just had a bowel movement this morning and then they put some sort of a bag attached to her to continue to have the bowel movement and they said it’s continuing to come.
Patrik: Wow. And they’re still sedating her. She’s still sedated, that hasn’t changed?
Julie: They’re taking her off the Precedex slowly, because she was at what yesterday?
Daniel (Nurse): She was at 1 mcg, and now she’s down to 0.6 mcg.
Julie: She’s down at 0.6 mcg. today. And she was at 1 mcg. yesterday. And now she’s at 0.6 mcg., and they also dropped the Propofol down just a little bit and she’s kind of got her eyes open and I can tell that she kind of wants to talk a little bit and I was like, “Just relax.”
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Patrik: Yeah.
Julie: But overall she seems fine. She did kind of furrow her brow at me a little bit and I said, “It’s okay, just relax.” And she seemed to do a little bit better.
Patrik: Wow. That’s massive improvement within like 24 hours, less than 24 hours. I mean, if she’s-
Julie: So this is… Go ahead.
Patrik: If she’s off the vasopressors, I mean it looks like the infection is sort of getting under control. That’s what it sounds to me.
Julie: Okay.
Patrik: Because if they’re taking off slowly sedation, I mean again, as far as I can see, they’re doing all the right. That is really, really amazing news.
Julie: I know. We think so too.
Patrik: Especially within such a short period of time.
Julie: Yeah, yeah. So if you have a bowel movement, does that mean your… Oh, here comes the doctor right now.
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Dr. Smith: Hey there.
Julie: Hi.
Dr. Smith: Hello!
Julie: Good news today. With that bowel movement, that’s great.
Dr. Smith: Yeah, that is good news. That was very good news.
Julie: Okay.
Dr. Smith: Yeah.
Julie: Patrik’s on the phone, too. Can you hear Dr. Smith?
Patrik: I can-
Julie: Patrik?
Patrik: Yes, I can.
Julie: Okay, okay.
Dr. Smith: Sure. So, yeah, she had a bowel movement. It seems that her belly is softer, less distended, so that’s good news.
Julie: Yeah.
Dr. Smith: Yeah, it seems like she got really sick and then all of a sudden, now the GI part of it is better.
Julie: Okay.
Dr. Smith: She was having persistent fever, and so we did get cultures and they grew back an organism and… she has very resistant, to drug resistant organisms, antibiotic-resistant organisms, from the start.
Julie: Okay.
Dr. Smith: And so we called the infectious disease doctor on this occasion and she’s adjusting the antibiotics as needed. I think her fevers are a little bit better.
Julie: Much better.
Daniel (Nurse): Yeah, she hasn’t had a fever, we were able to take her off the cooling blanket.
Julie: Oh, good, okay. Okay.
Dr. Smith: Yeah, so like I said before, this is a situation where… and this is what we’ve been looking into years that, you know, a couple steps forward, then several steps backwards. And now, we’re a couple of steps forward again. And so it’s kind of this going back and forth. Hopefully she continues to move forward.
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Julie: Okay. Okay. And Patrik, did you have any other questions? I know you were wanting to talk to Dr. Smith.
Patrik: Yes. Look, just a couple of issues. It sounds to me like she’s really improving a lot in the last 24 hours. I mean, yesterday she was on the vasopressors. She was on the norepinephrine and the epinephrine and it sounds to me like that’s come off now. Which is almost like a miracle to me. I mean, yesterday she was on 40 of norepinephrine or whatever it was. I mean, that’s massive, massive improvement. Do you think it’s just the antibiotics working?
Dr. Smith: Yeah. The antibiotics, I’m sure are helping. She definitely had issues with her GI system where, it was thought that for a while she wasn’t receiving good blood flow to her intestines, and we did the test for that. And certainly it looks like that’s getting better as well. So I’m glad she’s doing better, but I guess I’m a little more guarded about overall improvement. This is one step at a time.
Patrik: Sure.
Dr. Smith: And she still has the respiratory failure, which we also have to overcome. So this is a situation where we give the right medicines, hopefully, and we do the right tests. And that helps us to titrate the medicines to get her better. And so we’ve been successful in doing that the last two to three days, and now we’re starting to see some improvements in her blood pressure, in her GI. And so that’s encouraging. But certainly she’s still very, very sick.
Patrik: No doubt.
Dr. Smith: But we’re at a far better place than when we were a couple of days ago. On Friday, I thought she was going to just… a lot of people thought that she was just going to fight.
Patrik: Yeah.
Dr. Smith: And she did. So that part is encouraging. But what I said before is, the longer she stays here, the weaker she gets, the more this becomes a problem. And so the clock to a certain degree, is ticking on her to get better. And so it’s not all… If she makes an amazing recovery, and she just gets better from here on out, that would be great. But there’s still a lot of things that we have to get through here.
Patrik: Yes. For sure. And can you rule out, I mean, there was talk about bowel perforation a couple of days ago. Can you rule that out? I mean, it sounds to me like she’s opening her bowels now.
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Dr. Smith: The CT scan didn’t indicate that there was bowel perforation actually. That was a concern at some point, but yeah, we’ve gotten two CT scans now. And that seems to be not the case. There’s no indications for surgery. She would be a very poor surgical candidate, having come from a pneumonia, and the sepsis and all these things. So thankfully, there’s no indications for a surgery or bowel perforation in the diagnosis.
Patrik: Yeah, that’s really wonderful. And we understand she’s very sick. I mean, we get that. And when you saying sort of from a respiratory point of view, what do you think is happening next? Obviously she needs to come off the ventilator. Is she far away from getting off the ventilator, what do you think?
Dr. Smith: Because she’s just kind of coming out of this sepsis on top of her original sepsis.
Patrik: Yeah.
Dr. Smith: I don’t know if we’re yet to the point where we can start weaning the ventilator. But I think soon, we can start to turn down the support of the ventilator. She’s still on quite a bit of oxygen. And the pressures that we have her on to keep her lungs open are high, are peak.
Patrik: Yeah, yeah.
Dr. Smith: So we have to wean things down. And so we have to do that slowly, carefully. And so that’s the hope that we can start doing that, because she’s still on a lot of support from the breathing machine.
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Patrik: Yes, absolutely. And her blood results sort of, they support that the infection is under control? Like white cell count and lactate
Dr. Smith: The white cell count is kind of improving. Yesterday they were down, so that’s encouraging.
Patrik: Yes. That’s amazing.
Dr. Smith: Yeah. Yeah. Like I said, on Friday she was ultra sick and so she seems to be turning around the corner here, but like I said, still very guarded prognosis.
Patrik: Yes, I understand.
Dr. Smith: And the respiratory failure is going to be a difficult one to overcome. In fact, I think it may be… I mean if she continues to improve like this and we continue to have more good days, where we can wean the ventilator and her organ failures continue to improve, then we’ll have to see how things go with getting her off the ventilator. But one option that might be beneficial for her, would be a tracheostomy.
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Patrik: Yeah.
Dr. Smith: Because she’s chronically ill, because she’s from chronically weak, that may be a better option for her. The issue becomes clear but it would be a little bit risky for her and we’d have to talk to the surgeons about that.
Patrik: Yup. No sure, for sure. And when you’re talking about organ failure, kidneys are fine. There’s no indication that the kidneys are failing. Her heart seems to be strong, if she’s come off the vasopressors. Heart and kidneys?
Dr. Smith: Correct.
Patrik: Right, right.
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Dr. Smith: That is correct. Yeah, her kidneys have been okay throughout. It’s been more her circulation, her respiratory system. Her liver, her neurologic status has also been difficult to assess on the sedation, obviously. But you know, that’s going to be an issue as well.
Patrik: Yeah, But I mean that’s really, compared to the last couple of days… I mean yesterday when the family told me that she’s on high doses of the vasopressors, I just felt, “Hmm.” You know, she’s incredibly sick. And now it’s a completely different picture which is really, very good. But at the same time, we understand she’s very sick. I mean, she needs to come off the ventilator, which could be a long road ahead.
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?
You get to that all important feeling of making informed decisions, get PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below!
In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!
Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- 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
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- 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!
Also, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!