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 Mom is 14 days Ventilated in ICU and is Not Waking Up. Would Tracheostomy Be Safe for my Mom?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Cathy as part of my 1:1 consulting and advocacy service! Cathy is concerned that the ICU team is not giving her enough options and information about the management of her critically ill mom in ICU and she is asking how to deal with the situation to get the best treatment for her mom.
The ICU Team Is Negative and Not Transparent with My Mom’s Prognosis. How Do I Deal With It? Help!
Patrik: Hello. This is Patrik of intensive care hotline.
Cathy: Hi Patrik. This is Cathy.
Patrik: Hi Cathy.
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Cathy: So, we’ve gotten to the point where I think we’re day 11 of her being on ventilator, still no response, but all of the vitals, for the most part, are stable. Like today, she was running a fever. They’re giving here this blood thinner, so she’s been bleeding sometimes. There’s been some blood in her bowels, so they’ve had to stop. They’re giving her Heparin, I think.
Patrik: It’s just about drug. What are they giving her?
Cathy: The Heparin because they’re saying that they want to prevent her from getting new clots.
Patrik: Sure. And what were they giving before? Do you know? Before the Heparin.
Cathy: That’s the only thing that they’ve given her.
Patrik: And they stopped it now because she’s bleeding?
Cathy: Yeah, but that happened the first night too when they were doing the therapy and that time, she was bleeding everywhere, so they stopped then. So then, they wait to see if there’s blood in the bowels and she will go for a couple of days and it’s fine, and then it’ll happen again.
Patrik: Right, and they did restart the Heparin? Do you know?
Cathy: They have not restarted it as of yet.
Patrik: Okay. Is she getting any other blood thinners? Like have you heard of Clexane or Enoxaparin?
Cathy: No, just the Heparin is the only thing.
Patrik: All right.
Cathy: So, they came in today and they’re like, “Okay, we have to do the tracheostomy and we have to do the feeding tube.” So, my question really is what determine? Because I asked them how invasive is it because can she handle it now or is it just not optional? Is this something that we have to do right now? And his response was kind of, “It’s a minimally invasive procedure. I’ve had this done on other people in her state. As with any surgery, there’s going to be a risk, but it’s not like she’s having open-heart surgery.”
Patrik: No.
Cathy: That was kind of his response.
Patrik: Okay. For clarification purposes, what is he referring to? To the tracheostomy surgery or to the PEG tube surgery, or to both?
Cathy: Both, because they are going to do them at the same time.
Patrik: Okay. And are they planning to do it in ICU or are they planning to go to the operating room for that?
Cathy: Good question. I did not ask that.
Patrik: Okay. The difference there is most tracheostomies nowadays should be done in ICU at the bedside, done by an intensive care specialist, by an ICU consultant. It should be done within 30 to 45 minutes and don’t get me wrong, patients need more sedation, but there’s a difference. When they do the tracheostomy in ICU, it’s called a percutaneous tracheostomy. Has he mentioned, has he specified that?
Cathy: No, he has not because the actual surgeon, because I was talking to the intensivist today and the surgeon, I’m supposed to talk with tomorrow, because they were trying to get me to fill out the forms and I’m like, “I’ve got to talk to my brother and I don’t even know what I need to ask you because you’re not being forthcoming, telling me anything at all.”
Patrik: Okay. If the ICU doctor wants you to talk to the surgeon, that means they’re planning the surgical tracheostomy instead of a percutaneous tracheostomy, because the surgeon won’t do it in ICU most of the time. They will take her to the operating room and do it surgically there, and they probably want to do the PEG at the same time. Is that your impression?
Cathy: Yes.
Patrik: And one surgeon doing both?
Cathy: Yes, one surgeon.
Patrik: Okay, okay. I tell you where and just going one step back, her neurology hasn’t changed since we last spoke. She’s still a Glasgow Coma Scale of 3?
Cathy: Right, correct.
Patrik: Okay. And I’ll come back to the tracheostomy and the PEG. Any more talk about them planning to wake her up? Any plans for them to do something about the neurology? Do you feel like they have a plan with that?
Cathy: No. Because I took your advice, I asked them about, “Can you start doing some therapy now?” And they’re basically like, “Well, that’s something you do at LTAC. It’s not necessarily we do here.”
Patrik: Yep, okay. That’s where ICUs are very complacent in this day and age. I’m very frustrated when I hear that. I’m more old school. As soon as you can mobilize the patient, you mobilize them, but there’s a different generation at work now, especially on a nursing level, I believe. But let’s not get side-tracked.
Patrik: Coming back to the tracheostomy, if she’s not waking up, if she’s got a Glasgow Coma Scale of 3 still, a tracheostomy is most likely the next step. Do you know whether her pupils are reacting to light?
Cathy: They’re not reacting.
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Patrik: Right. And they still haven’t. Have they brought up brain-dead again?
Cathy: They haven’t brought it up again. Part of my research in going back to them today was having them go back over it, because I’ve never had anyone come in and say, “Okay, this is what it looked like on the CT scan. This is what it looked like on the EEG.” I, again, had to pull that out of them. And for the CT scan, they just said cerebral edema, diffuse focal effacement. And then for the EEG, no seizures, encephalopathy, global cerebral dysfunction, and that there was no bleeding in the brain.
Cathy: Because that was my other question to them, it’s like she got there probably to the emergency room at one o’clock and no one came in to give me any options about what to do until 7:00. And this is the guy who was just very, “She had no quality of life,” and without saying anything about what are we going to try to do. If you’re saying that there was swelling on the brain, how do we deal with that?
Cathy: And today, they’re like, “Well, that’s why we did the therapeutic hypothermia because we didn’t think there is anything else that you need to do because there is no, she wasn’t hemorrhaging in the brain and we didn’t see any bleeding in the brain.”
Patrik: Okay. And have you spoken to neurologist since we last spoke on Friday?
Cathy: No, no. And they said they usually don’t come back unless there’s some type of change.
Patrik: All right. Okay, and she’s breathing some? She’s taking some spontaneous breaths as far as from the ventilator?
Cathy: Yes.
Patrik: Yeah, okay.
Cathy: Yeah. She’s on the spontaneous mode. She’s triggering every breath. It was not like that on Friday when they switched the mode, but you sit there and there’d be that prolonged time where she wouldn’t breathe and then she would. But so far, she’s triggering it with every breath.
Patrik: Okay, So, that is why they haven’t brought up the brain-dead because if she’s breathing, she’s not brain-dead.
Cathy: Okay.
Patrik: Okay. Now, good. Okay, that’s out of the way. Coming back to the trach and then the PEG, so most ICUs that I work in, a PEG doesn’t necessarily follow a tracheostomy. Now, most ICUs, however nowadays, a PEG does follow a trach.
Patrik: Now, I am in two minds about this. Given that your mother is a Glasgow Coma Scale of 3 at the moment and there hasn’t been a lot of improvement on a neurological level, I’d say, it’s very likely that your mum will need a PEG in the long run. However, where I do have a problem with the PEG is because if the patient has a PEG, you’re almost neglecting to have them learn to eat again, right?
Patrik: And again, that’s where complacency comes in, I believe. It’s all good and well that you have all these wonderful devices to keep people alive, but what is actually the best course of action to improve a patient’s situation. For example, if you don’t do a PEG and they continue with a nasogastric tube. Do you know what I mean with the nasogastric tube?
Cathy: Yes. Well, right now, the tube is going in down her throat, I guess, into her stomach.
Patrik: Okay, okay. So, it’s not going through the nose. It’s going through the mouth, is it?
Cathy: No. Exactly, going through the mouth.
Patrik: All right, fair enough, fair enough. Okay, same principle. As long as it goes in the stomach, they can feed her. However, if they do a tracheostomy, they would have to take the orogastric tube out and they would have to put it in through the nose instead of the PEG.
Patrik: So, look, again from a logistical point of view, yes, they want to do both at the same time. It would save them time, but let’s just say best-case scenario, your mum improves and then she has a PEG. Then nobody will be working on trying to getting her to swallow. That’s the problem that I personally have with the PEG. For the right patient, the PEG is wonderful; but in my mind, it’s too early to determine that.
Patrik: And that’s why I’m asking have you had another chat with the neurologist, because I believe the neurologist will be one of the best people to tell you what he thinks the outcome is going to be like. If she stays in this sort of unconscious state, she will definitely need a PEG.
Cathy: But that’s the thing. It’s like pulling teeth with these people. It’s like I’m, “Why do we do all these tests and you just think that you don’t have to come in and explain anything to me? I don’t understand that.” So, I was talking to my aunt and it turns out that my uncle actually had brain surgery. And when he has his episode, she was there with him and the doctor came in the room and pulled up the scans and explained it.
Cathy: I’ve had to ask the nurses and then they’re like, “Oh, you can always request the medical records.” I’m like, “But why would I need to do that if you’re here to explain that to me?”
Patrik: Exactly.
Cathy: And no one has done that. So, it’s like the way that they’re thinking is that if they don’t see any activity in three days and then they look at what she’s doing physically and then if she’s not reacting, then they just determine that the outlook is not going to be good.
Patrik: Correct, and this is they are operating on their self-imposed timelines. And those timelines are determined by how urgently they need the ICU bed, how much money are they making if they keep your mother in there for longer than they think she should be there. Unfortunately, it’s a cutthroat business or it can be a cutthroat business and also, in their head, “Okay, well, she won’t have any quality of life.” In their mind, “Let’s just go right to the PEG.” Again, what they don’t know is that if your mother gets out of ICU alive, they have no idea what goes on from that point forwards.
Cathy: Right, and that’s the point that I’ve tried to make to them because they’ve had this idea in their mind about what her life is worth from the beginning without talking to me, without determining that. You just don’t make decisions based on what you think, and I had I guess it was, I think she’s the palliative nurse or nurse practitioner or something, and I was just very clear with her. I was like, “I’m going to try to help you understand my thinking here. If you pull life support from her, I consider it to be killing her if she’s breathing on her own.”
Cathy: I was shocked when her organs kept working because listening to that emergency room doctor, he’s just like, “There’s no hope, no hope.” And then I come in and all of her organs are working and I’m like, “I know I’ve heard of something called organ failure and she’s not doing that.” I mean, her kidneys are better than what they were before when she was dealing with high blood pressure and all that kind of stuff.
Cathy: But I was like, “So, that’s what I’m going on. And again, I have told you that she can come home. And it’s not for you to determine, ‘Well, how is that going to affect your life?’ It doesn’t have anything to do with it. This is what the family has decided, so help me get to that point.” And they just cannot operate on that level.
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Patrik: They can’t. They can’t. Can I ask have they mentioned multi organ failure? Is that a term they’ve used?
Cathy: No.
Patrik: Okay. No, and I’ll come to that in a moment. Do you know if she’s still on inotropes or vasopressors such as epinephrine, norepinephrine?
Cathy: None of that.
Patrik: None of that, okay.
Cathy: They didn’t even have to give her any sedatives when they were doing the hypothermia.
Patrik: No, I remember that. I remember that. So, with that said, you could argue she’s in double-organ failure, which means she’s not breathing. So, the lungs are more or less failing, or she’s breathing but with the help of a ventilator. You could argue the lungs are not at capacity and the brain is failing. So, she’s in double-organ failure because often what I’ve seen…
Patrik: Let’s just say, God forbid, the kidneys would be failing. They would come to you and would say, “Oh, she’s in multi organ failure.” Right? I’m glad they haven’t brought it up, because they’re often trying to use that term or that terminology and the things that go along with it to again, more or less, force families to agree to withdrawing treatment.
Cathy: Okay. Nope, they haven’t.
Patrik: That’s good.
Cathy: They haven’t mentioned that at all. I don’t know if that’s because I came to them and I’m like, “I’m having an issue here with all of the organs still working and she’s gotten better on the ventilator. She’s triggering all of the breaths. And again, I can’t get any of you to sit down and talk to me about brain activity other than to say it was really bad, it was really bad, and walk off.”
Patrik: Absolutely.
Cathy: So, I am going to continue to move forward and just think it might take a long time for her to recover and as far as insurance and everyone else is concerned, because she has really good insurance. This particular insurance company that she has, Humana, sometimes you can call them and be like, “Look, I’m not trying to keep her in facility long term, but I need this amount of help. As far as nursing is concerned, what will you all be able to do?” And sometimes they say yes and sometimes they say no.
Patrik: Of course.
Cathy: But it’s an option. And the only reason I would consider LTAC initially is because of rehab and then being able to show me what I need to do once she gets back home.
Patrik: LTAC, yep. Have they brought up LTAC?
Cathy: Yes. The person called me and just gave me the different options going to the LTAC because again, it’s like when I mentioned, “Look, her ultimate destination is to come back to her house,” they just get thrown by that. And I said, “I would consider doing LTAC or a nursing home if there’s therapy involved and just so that I get up to speed on what I need to do, because then that helps me to determine do I ask for Humana to pay for nurses? Do I put her on the state health plan because they’ll pay for 24-hour nurse? I have options, but that transitional stage, we need to work on.”
Cathy: And that was kind of her task and then she’s going to follow-up with me on Tuesday. Because I think a lot of these places, they won’t consider you if you don’t have, that’s what she was saying about nursing homes, is if you haven’t been on the tracheostomy for like 30 days or something like that, that they won’t consider having you.
Patrik: Yep, sure, sure. You see, my experience with that is, whether you’re going to a nursing home after 30 days and all these artificial timelines, is often actually depending on the insurance, what’s the word, the insurance entitlements.
Cathy: Right. Exactly.
Patrik: The other thing that I would be worried about is if your mother stays in this situation, if she stays in this particular situation, an LTAC may not necessarily want to take her. So, you may want to look at home care straightaway. Have they alluded to that, that an LTAC potentially may not take her?
Cathy: Yes, yes. They’ve mentioned that and that’s why she was saying if you do take her home straight from the hospital, that you won’t have any support. It will all be on you, on me, to figure out that someone would come in for a little bit to show me how to operate the ventilator, but I wouldn’t have any support.
Patrik: I don’t agree with that, but that would be for another conversation. I’m sure there is, like I mentioned to you, like an intensive care at home or with Bayada. There will be support for you. It will take some time to organize it, but it can be organized. What’s the palliative care team or did you say palliative care nurse?
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Cathy: Yes. She’s a nurse practitioner.
Patrik: What were this person’s comments about the situation?
Cathy: She just had comments about my reasoning. Because again I tell them, I’m like, “This is how I think about it. This is how everybody in my family thinks about it. We’ve talked about this. We believe in life, so we’re all in one accord about this.” And that kind of blows her mind.
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Cathy: And so, the only thing that she said was, “Has your family considered that if you take them off the ventilator, that you wait to see if God has them breathe.” And I’m like, “Yes, we’ve considered it and we’ve considered that God has blessed someone to create a ventilator to maintain life and if that breath is still coming in and maintaining the organs, we consider taking them off the ventilator to be killing them. And again, the plan here is not to sit up here with you-all all the time. It is how can we get her to a place where she is back at home, and we’ll go from there.”
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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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
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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!
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