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 for more than four (4) weeks but was not improving. Julie is asking how to guarantee that the ICU team will continue treating her mom despite their plans to transfer her to another hospital.
My Mom’s in ICU but is Not Improving. How to Guarantee that the ICU Team Will Continue Treating My Mom Despite Our Plans to Transfer Her to Another Hospital?
Patrik: Correct, correct. So, you know, keep asking. Don’t be afraid to ask for things. The other thing is, if they ask you again for a meeting, okay, it’s so important that you will get a meeting agenda in writing prior to that. Do not go to a meeting without having the meeting agenda in writing.
Julie: Okay, okay.
Patrik: If you essentially give them option, you know, quite literally, to walk all over you if you’re not prepared. You know, it’s important, if you had a meeting agenda, and you would have seen, oh, they want to talk about your mother’s condition. They want to talk about not continuing to treat. Or the fact, you would have said, “Well, I’m not even entertaining that.” You know, you could have refused to go to the meeting, and you could have pushed this back to them and say, “Well, at this point in time, I expect you to do everything.” And, that would have been the end of that.
Julie: So, but then, I felt … I agree that I do feel, though, that they are going to continue to keep her purposefully and unethically on vasopressors. And it is clear to me today by looking at my mom. My mom has never looked as weak as she has right now.
Patrik: Sure, sure. There is no question about that your mom is critical. Nobody argues that. But, what is important, as well, is things like, she’s been on and off sedation now for weeks. Right?
Patrik: She’s been on and off sedation for weeks. And, induced coma is weakening people, right? And, that’s why the tracheostomy would be so important to get her off the sedatives. Now, what I can’t say from here is, is it really too risky to do the tracheostomy? I can’t say that from here. Okay, I can’t say from here, do the surgeons have a valid point not to do the tracheostomy? I don’t know.
Julie: Well, their only valid point is, it’s not going to treat her respiratory failure. This is all they have. We asked them four times. It’s not going to treat her respiratory failure, and we can’t do it while she’s on blood pressure medication. That’s all we’re getting. Nothing more. There’s no other hidden … You know what I mean?
Patrik: Yes, yes.
Julie: They said it’s going to be difficult because of her obesity and her anatomy.
Patrik: Yeah, yeah.
Julie: But, nonetheless, the ENT did say he thinks he could do it, as long as she’s off the vasopressors. So, clearly, the vasopressors are our only issue, except for now, the teams have agreed that she’s in respiratory failure, and she is not getting better.
Julie: But, how can you say that when someone fought through sepsis. Someone … You know?
Patrik: So, here …
Julie: She’s not on a hundred percent from the ventilator.
Patrik: Yeah, yeah, and that’s why I said earlier, we need to look for evidence where the diagnosis of end stage respiratory failure is accurate or not. You know, they’re saying she’s in end stage respiratory failure. Okay, well, show me the evidence.
Patrik: You know, the evidence would be a chest X-Ray. Evidence would be, like you said, she’s not on a hundred percent of oxygen. How much oxygen is she on?
Julie: She just recently had to go to 50%. But, for the last week, she’s only been on 40%.
Patrik: Okay, right, right.
Patrik: Not a lot. You know 50% of oxygen.
Julie: I’m trying to get … What’d you say?
Patrik: You know, 50 percent of oxygen, yeah, that’s a fair amount. But, it’s not … You know, a lot of people in ICU are on 50 percent of oxygen temporarily. You know? I’m looking for the evidence of, okay, well she might be in respiratory failure. Show me the evidence. You know, and when you send pictures, can you please also send the picture of the infusion pumps? I want to see how much vasopressors she’s on. And, you know, if you can send that as well, if she’s on over 20 mcg of NORAD, or norepinephrine, she’s very sick. There’s no question about that. And, if they keep going up, there is a very good chance that your mom may not survive.
Patrik: But again, it’s been back and forth for the last few weeks in regards to that.
Julie: Yep, now, she’s off of the … So, conveniently for this morning, she needed them. But then, we went back in there just now, and she’s off of the vasopressors again.
Julie: And, her heart rate and blood pressure are perfect.
Patrik: Okay. So, what’s her oxygen level on the monitor?
Julie: I took a picture. Let me see. Let me look at the pictures.
Patrik: Okay, that’s just about okay. Just about. So, what’s going to be important … Let’s just say, let’s just look at the worst case scenario. Let’s just say they started comfort care, okay? It’s a very good chance your mom would die fairly quickly if they move to comfort care, okay?
Patrik: That’s number one. Number two, if they continue treating her, look, there’s no guarantees, of course. But you know, it’s this old thing, as long as there’s life, there’s hope, right? And, while they continue treating her, look for alternatives which could be another hospital. The other thing is, you know, there is a small chance that she will keep improving while they keep treating her. And also, do you think your mom is suffering?
Julie: A little bit, yes. I think she’s uncomfortable sometimes. But, I don’t necessarily think she’s suffering. I would definitely say uncomfortable. Her brow furrowed all the time.
Patrik: Okay, because, if your mom was going to continue treatment, and she would suffer a lot, you know, with potentially with a negative outcome, then I do believe the question needs to be asked, is it worth the fight? Okay, the question needs to be asked. I’m very much pro life, and I’m very much pro keep trying. But the questions still need to be asked.
Julie: No, no. Okay, so, you said, okay, so you said there’s a chance that she could start getting better in their care right now?
Patrik: Well, as long as she’s alive, she’s off the vasopressors now. Here’s another thing, Julie, so, at the moment, as far as I understand, your mother is in single organ failure.
Patrik: Right? Have they mentioned that?
Julie: Respiratory, yes.
Patrik: Yeah, right, right. But, there is no talk about multi organ failure.
Julie: Well, they keep trying to say the vasopressors are.
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Patrik: Yeah, sure. The vasopressors are another form of life support. But, they can’t really tell you why she’s on the vasopressors. I’m still waiting to hear why she’s on the vasopressors. I have not found a reason from here, why she’s on the vasopressors. So at the moment, your mom is in single organ failure. The lungs are failing, okay? The heart’s not failing. The kidneys aren’t failing. The liver isn’t failing. The brain isn’t failing, as far as we know. So, she’s in single organ failure. So, if your mom was in multi organ failure, I do believe the discussion would be very different. Okay, they would have another sort of element to say, “Yep, it’s of no purpose to continue treating your mom, because she’s in multi organ failure.”
Patrik: Of course …
Julie: Well, they believe that her brain is in failure, because they don’t know her baseline. So, they think her prognosis of the Progressive Multifocal Leukoencephalopathy (PML) or whatever, whatever have you, they don’t, that’s not their normal. They’re not … You know, what do you call that? Desensitized to that, which, we know her baseline. And so they are looking at her, “Oh, she needs vasopressors. Oh, her mental stability, oh, the fact that she is bedridden.” They are looking at all of those things instead of the main issue, which is the respiratory failure, which is not even proven at this point.
Patrik: Yep, yep. And, again, with the brain, as long as there’s no evidence. As long as they haven’t done a CT Scan of the brain, or … It’s all talk. It’s all talk. Now, let’s just keep going back to the respiratory failure for now. One way to buy time for the respiratory failure is to do a tracheostomy. There’s no question about that. It would buy a lot of time, but you know, they’re not prepared to do that at this point in time.
Julie: Because, they said that buying time is not going to help her. Ultimately, it’s going to be the same. That’s what they’re trying to say.
Patrik: Of course, that’s what they’re saying. Of course, I understand that. I understand that. So, for now, I think for now, I think the goal is, they need to continue treating her. They need to start looking into transferring her to another hospital. If I was you, I would reach out again to this other hospital because, you know, somebody might remember your mom. Or you just … I don’t know, do you have a contact of, you know … I know you contacted them already. But, do you have somebody else that you can contact there? Maybe you haven’t contacted the right person there yet.
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Julie: Maybe, like, the neurologist or something there. But, I don’t even know if they’ll let me talk to the neurologist. I don’t know. When I called, they said, they shut that down really quickly, saying that they only talk from hospital to hospital, case manager to case manager. That they don’t do anything in between.
Patrik: Yeah, sure. And, that would be their …
Julie: They did said, she did say if she felt, if we felt, though, if there was any unethical concerns, that you could go above and beyond those heads. If there was something ethically going on.
Patrik: Say that again, please.
Julie: She said that if we felt like something unethical was going on, that we could go above their heads. And, there was, like, a whole team at the hospital that deals with unethical stuff.
Patrik: And, that is … Are you talking about the hospital that is in at the moment? Or, are you talking about the other hospital?
Julie: The one she’s in. The other hospital told her that there was a way to go above their heads, if there was something that wasn’t ethical happening.
Patrik: At the present hospital.
Julie: And then, she said… because, I had told her that there was no … She told me to contact the case manager at the hospital my mom’s currently at. And, I said, “Well, that’s not going to go very forward.” And, I said, “And at this point, I feel like it’s going to be doctor to doctor. They’re going to be pushing to not treat Mom.”
Julie: And, she said, “Well, there is an entire unethical team that works for that, if you feel like that is truly going on, that will work with you at the hospital.”
Patrik: Okay, I’m so glad you mentioned that. I’m very glad you mentioned that. I do believe that’s the way to go. Because, there is an ethical dilemma. There is an ethical dilemma, right? The ethical dilemma is …
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Patrik: … are you going to continue treating your mom? Or are you not? That’s an ethical dilemma. It’s the grey area. It’s not black and white. There’s pros and cons. It is an ethical dilemma, and I’m glad we’re having this conversation. Because, I believe that’s probably the way to go. There is a door opening for you, potentially.
Julie: Okay, so maybe get those people involved right away.
Patrik: Absolutely. You know, I mean, there’s pros and cons for both. And, that in my mind, it’s an ethical dilemma. And, I think a lot of people would agree with that.
Julie: Okay, so, when we are talking about this ethical dilemma when we reach this ethical team, or whatever the surgeon says it is, what are we saying? We’re saying, the fact that they’re not doing the tracheostomy, and my mom’s getting weaker every day. Are those the ethical things we’re listing here?
Patrik: Very much so. And, it’s also an ethical dilemma to potentially ignore your wishes.
Julie: Okay, which, our wishes are to have the tracheostomy done.
Patrik: Correct. Or, transfer to another hospital. Make that referral, either/or.
Julie: They’re saying another doctor has to accept her. So …
Patrik: That’s right.
Julie: Okay, how do we get proof that they’re contacting another hospital?
Patrik: That’s what I think. I think you need… Don’t be afraid to ask for evidence. Ask for a recording of the calls.
Patrik: Don’t be afraid to ask for things. You know, don’t be intimidated.
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Julie: Okay, and asking to speak to that doctor, as well, or something?
Patrik: Very happy to do that. Very happy to do that.
Patrik: The other thing, Julie, is the more you know… You mentioned something earlier. I believe you mentioned something that in this hospital at the moment, there’s no consistency from the nursing staff. Is that what you said?
Patrik: Right. I tell you what I can see, Julie, from my experience. If that’s the case, the place is probably a mess. If there’s 10 patients in a unit, and they can’t keep sending the same nursing staff to your mom, have some consistency, the place is a mess. Which means they have a high staff turnover, probably. Which means the place is badly, badly run. And, I believe the place is badly run. If he can’t do an arterial line, the place is incredibly, badly run. And, it probably shows through all … It goes from the top, to down to the nursing staff.
Patrik: You know, if somebody’s been a patient for four weeks, you’d think that somebody within the nursing team, at least, would make a connection with you. Has that happened at all, or …
Julie: It happened with two nurses, but they haven’t been with her since one of them, his name is Randolf and he is amazing.
Patrik: Right, okay. But, it looks like …
Julie: But the one he talked … He’s the one, I think we talked to him, and he also was the one that was able to get Mom off all the vasopressors when supposedly, everybody couldn’t. And, she stayed off the vasopressors for …
Patrik: Oh, okay, yep, I remember him now.
Julie: He’s amazing, yeah.
Patrik: But you know, it’s a 10-bed … It’s a 10-bed unit. If it was 25 beds, fair enough, there would be a high staff turnover. There would be a high rotation. But it’s 10 beds. It’s small, 10 beds is a small ICU. You know, they shouldn’t be having the different staff every day.
Julie: It’s not. It’s every two to three days.
Julie: So, the same girl will be with her. A new one comes in for two days, and a new one, and a new one, and a new one. And, they never return, it’s back to the same … Yeah, So, like, after two or three weeks goes by, then the same nurse comes back.
Patrik: Okay. So, the other thing …
Julie: What is it?
Patrik: The other thing is, this guy, Dr Smith. Look, I could be wrong here. But, I’m just trying to get as much information as I can. Is he running this place like … Is he a little bit of a dictator?
Julie: You know, it seems like it’s really more or less being run by the charge nurse and the nurses.
Julie: And then, I think he comes in every now and then, and kind of says something. And, I don’t know. You don’t really see a doctor. You never see the on-scene doctor. That one lady, I’ve only seen her in the meetings. I’ve never seen her face in that ICU.
Marvin: Oh yeah, me either.
Patrik: That’s worrying. That’s very worrying. That’s very worrying.
Julie: So, we just need to get to this ethical meeting ASAP, I feel like.
Patrik: I think so.
Julie: I feel like we’re …
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
- 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
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- 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)
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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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