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 and developed respiratory failure. Julie is asking why the ICU team refused to treat her mom any further.
My Mom is in the ICU with Respiratory Failure. Why Does the ICU Team Refuse to Treat Her Any Further? Is This Fair?
Patrik: Hi, Julie. How are you?
Julie: Good, how are you?
Patrik: I’m very good, thank you.
Julie: Are you busy right now?
Patrik: I can talk for now.
Julie: I just came out of a meeting, and basically, they told us that they’re refusing to treat her any further.
Patrik: Okay, and on what grounds?
Julie: They said that they believe in as a team, involving the regular general surgeon, the pulmonologist, the team of doctors and all of the nurses, that a tracheostomy and a PEG in the stomach right now is not a treatment. It is a means of giving to a patient that is going to go somewhere and get better in another facility. And, it is not a means of doing something that could possibly worsen a patient who is not going to get better. And, they feel at this time it is a hundred percent that she is not going to improve, and that she is in respiratory failure.
Julie: Oh, and by the way, coincidentally, she’s been off her blood pressure medication for over 48 hours now. And coincidentally, just this morning prior to the meeting, she had to be put back on 200 mcg, the max.
Patrik: Oh, wow, sure. What a coincidence.
Julie: Isn’t that a coincidence?
Patrik: Absolutely, absolutely. Okay, a couple of things there. Because I know, this is why it’s so important, and I should have potentially mentioned that last week. Whenever you go to a meeting, you always need to ask for the meeting agenda in writing prior to that. Always, always, always, because you knew it was coming. But, it would have been … Your gut feeling was telling you it was coming, but it would have been … If you had this in writing, we would have approached this very differently, right?
Patrik: And, that’s why I’m always saying, you need to get an agenda, a meeting agenda, in writing so you know what’s to come. Well, we knew what was to come. But, you had no time to prepare. Okay, so let’s move on from there, though. What are they proposing? What are the next steps?
Julie: To go to comfort care.
Julie: Or basically, keep riding it out until her blood pressure and things stabilize.
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Patrik: Okay, Can you as the next step … So, they’re saying she’s in respiratory failure. Can you, as a next step, send me a picture of the ventilator? That’s number one.
Patrik: Can you send also the chest x-ray results?
Patrik: And, most importantly, and it all comes back to this odd line, you know, we can talk about respiratory failure all day. If he doesn’t give me an arterial line, an arterial gas, I’d just say it’s crazy.
Julie: Okay, so should we try to get the most recent … Should I get the most recent blood gas, too?
Patrik: Yes, the most recent the blood gas and picture of the ventilator.
Julie: Okay, so, most recent? Okay, and picture. Okay, I’m here, so I’m going to get all of this, and a CT scan.
Patrik: No, no, no, no, no. Picture of the ventilator. Picture of the blood gas, or results of the blood gas. Picture of the monitor. And, a chest x-ray result. I don’t need the film, but I will at least see the report. You know, if you have the film, great. But, just the report would be sufficient to begin with.
Patrik: So, here is the other thing, you know, what’s important to know. They might agree as a team, you know. That’s all fine. That’s what they say, of course. But, you have rights. Okay, I mean basically, what they’re telling you is, you know, “We have decided this. And, we’re going to do this one way or another, right, because we as a team have decided.”
Patrik: Well, that’s crazy, because you have rights. Okay, so, what do I mean by that? So, there will be a state law in South Carolina and, there will be a hospital policy that most likely will say that a withdrawal of life support cannot happen without the medical power of attorney consent. Okay?
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Patrik: So, yes, they might all agree. And, you know, they’re just trying to rally their troops in terms of trying to get what they want. But, you have rights. They’re not operating in a vacuum. Okay?
Julie: I asked for a transfer, then, to somebody who will treat. And, they said that they will go ahead and call around, and that they can’t guarantee that they will find a doctor that will treat.
Patrik: Yes. I would argue the following. Before they do that, you need to ensure that they will continue treating her for now. Because, you know, they might call around and they might say, “Oh, we decided this, that, and the other.” And the other hospitals might say, “No, no, we don’t want that.” You know, “We don’t want the patient where other people, where other hospitals have refused to continue treating.” So, I do believe your first step is to make sure they are continuing to treat her. That’s number one.
Patrik: And then, it needs to be presented differently to the hospital. You know, to a new hospital.
Patrik: It needs to present differently to a new hospital. So, you know…
Julie: How do we get that?
Patrik: Yeah, so the statement that … Look, at the moment, they’ve made a statement, “We recommend a comfort care.” Okay, your answer to that is, “Hang on a sec. You can’t proceed to comfort care without our consent.” Okay, so your response to this needs to be, “Well, you know, we heard what you said. But, you can’t do this without our consent, and we want A, a transfer to another hospital, or B, a tracheostomy and then transfer to another hospital.”
Patrik: Either, or, it doesn’t matter. One way or another. Now, the thing that I will do is, I’ve recorded a couple of interviews just in the last two weeks of clients. One is on the blog already, and the other one is coming out next week, where people have been in desperate, desperate situations. And now, six months down the line, they’re sharing their story in terms of how patients went from really knocking at death’s door, and now they’re recovering.
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Patrik: Okay, and I think it would be so valuable for you.
Patrik: I’ll send you some links to those interviews. One will come, we haven’t published it yet. One has gone on the blog last week, and the other one will come out next week. But, I think it’s going to be important for you to get some perspective. Right, and I think it’s important for you to get an even deeper understanding of … I feel they’re trying to manage their beds. That’s the elephant in the room.
Patrik: The elephant in the room, we are …
Julie: Okay, and I did say, just so you know, I did say, “We’re not doing comfort care.” And she said, “Okay, we’ll plant the seed that could be harvested in the future.” That’s what she said.
Patrik: You’ve given the right words.
Julie: So, the other elephant is that the … Okay, and so, the other elephant in the room is what?
Patrik: Yeah, it’s managing their beds, right? That’s one elephant in the room. And, it’s cost, right? And, it’s also … It takes a lot of emotion investment from their end, as well, to keep going with your mom. It takes some emotional investment. It takes some financial resources, of course. But, it also takes an emotional investment. And, most doctors are not prepared to do that. They’re desensitized. They are … For them, your mom is just a number, unfortunately.
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Julie: I know. I know. And, I can see that.
Patrik: Of course, and it’s very sad. You know, and that’s why it’s important to have those strategies to get the outcomes that you want, going forward. Now, Julie, you need to give me about 20 to 30 minutes, and I will call you back, if that’s okay. Then, I’ll have time. At the moment, I’m a bit pressed.
Patrik: You need to give me 20, 30 minutes, and I’ll call you right back. Okay?
Julie: Okay, thank you so much.
Patrik: But, you’ve got enough for now. Are you still in the hospital?
Julie: Thank you. Yes, and I’m going to go get what you told me.
Patrik: Okay, I’ll call you back. Thanks, thanks, bye.
Julie: Thank you, bye bye.
Patrik: Hi, Julie, it’s Patrik here. Can you hear me?
Julie: Hi, yes.
Patrik: Okay, now that’s … It was a bit choppy earlier. But now, it’s much better. So, you are still in hospital, are you?
Julie: I am. And, I got the picture of the ventilator machine. I got the picture of the monitor.
Julie: Now, I’m just waiting for the nurse to come back in, and she’s going to give me the chest x-ray interpretation and the latest date that that was taken, and then the arterial gas and the latest date that that was taken, and the results.
Patrik: Great, great. Do you know when the last blood gas was taken? Have you got the date?
Julie: She hasn’t come in yet, but when she comes in, we’ll be able to see.
Patrik: Okay, okay. When you were in the meeting, they didn’t say they would refuse to treat your mom. They just said they would recommend to do comfort care, is that correct? Or, did they say they would refuse?
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Julie: They said that they, as a team, had decided to not go forward with the tracheostomy and the PEG in the stomach, because they don’t believe that she is stable enough for that.
Patrik: Okay, yeah.
Julie: And as a team, they have reached agreement that she is not going to get better.
Patrik: Okay, all right. But, they did not say that they … You know, yes, they’ve come to that conclusion, but they didn’t say words to the effect of, “And because of that, we decided to stop treating and move towards comfort care.” They have not said that they would … That imminent that’s what they were going to do. They’re just putting out their recommendation.
Julie: Well, yes, but they wouldn’t … They’re not going to do the tracheostomy, or the … As a team, they decided they are not going to do those things.
Patrik: Okay, okay. So, with not doing the tracheostomy, it wasn’t so much a matter of a short neck. It was a matter of, she wouldn’t benefit from it in the long run.
Patrik: Okay, so nobody said, “Oh, we’re not doing the tracheostomy because she’s got a short neck.” Nobody said that.
Julie: No. They did say that because of my mom’s size, that they have to blow up her abdomen, and then cut through the wall.
Julie: And, that also would add to the stuff. And, he said, “At this time, your mom is not strong enough for any of that.”
Patrik: Right, right. And, I mean, if they had to do that, it certainly would add on another element of risk. There’s no doubt about that. It would add onto the risk.
Julie: Well, so is sitting here and not doing anything, right?
Patrik: Say again?
Julie: So is sitting here and not doing anything, right?
Patrik: Pretty much. That’s what it sounds to me like. But, I think what needs to happen next … I mean, sort of, what was the next course of action after the meeting in terms of what will be their next course of action? Where did you leave that?
Julie: We left it as, we want a transfer, then, for somebody that will do the surgery. And they said, “Okay, we will try to find a doctor that will accept it. We have sister hospitals.” And we said, “We don’t want to go to your sister hospital. We want to go to one that is closer to home, St. Mary’s hospital, and get a second opinion.”
Julie: And, the general surgeon here said that he is not insulted by that whatsoever at all. And that he always believes a fresh pair of eyes on a situation are fine. And he said, “But, we have to be able to find a doctor that will agree that there is something more to be done for your mother, or else they won’t even accept a transfer from the get go. And, we are not going to do the surgery because we do not see your mom ever getting better.” So, if they’re never going to do the surgery, to me … I even asked again. I said, “So, if my mom starts to get better in the next couple of days,” I said, “are you going to do the surgery?” And the doctor, the overseeing doctor, kind of over spoke the general surgeon and said, “No, no. We agree as a team that your mom is not going to get better. And, the tracheotomy surgery is not going to … ”
Patrik: Benefit your mom.
Julie: “The tracheostomy surgery is not going to help her whatsoever at all.”
Patrik: Yeah, okay, okay. So, okay. So, the first thing is, you know, you have to make the statement you want them to continue treating. You want them to look for another hospital. So, that’s good. You’ve got to be watching for those actions. You got to make sure that this is actually, that they’re following through on their words.
Julie: Okay. And, how do you make sure that’s happening. Because, how can they just … What if they just say that they called?
Patrik: That’s right, that’s right. Well, ask them for some evidence. You know, you can ask them for some evidence. You can potentially ask them to record a call. Don’t be afraid to do those things. You know, don’t be afraid to ask for things, and don’t be afraid of that. Just make sure that you do from your end that it’s happening. And again, you could ask for a call recording, potentially. Or you could ask, “Hey, can I call this other hospital to verify that you’ve done that?” You know, do things like that. Don’t be afraid to do that, because as you know, they can tell you all sorts of things.
Julie: Yeah, because they could tell us, essentially, that they talked to somebody, and they didn’t.
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 pressures. And it is clear to me today by looking at my mom. My mom has never looked as weak as she has right now.
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
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- 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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