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
How to Be an Effective Advocate For my Mom So She Can Get the Best Care & Treatment in ICU?
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, Emma, as part of my 1:1 consulting and advocacy service! Julius and Emma’s mom is critically ill in ICU & she is asking why would the ICU team advise giving up on treatment for their mom.
Why Would the ICU Team Advise Giving Up on Treatment for Our Mom? Help!
“You can also check out previous 1:1 consulting and advocacy sessions with me and Emma here.”
Patrik: So, if she wasn’t on the pressors before she was on dialysis, that’s actually a good sign.
Julius: I think she was on blood pressure medicines, but not those pressors. I don’t think that-
Patrik: When they talk about blood pressure medicine, they probably do mean the pressors. Probably.
Julius: You think they do? Okay. Okay. I’m going to ask.
Emma: No, she was actually on blood pressure medicine prior to … Right? Mom was on blood pressure medicines.
Ron: Well, maintenance for blood pressure.
Emma: Yeah, regular, like before going into the hospital.
Patrik: Oh, I see. I see what you mean.
Emma: Sorry. I should know.
Patrik: Okay, I see. Do you know what she was on?
Emma: Do you know what it was, Ron?
Ron: Let me look. I’m here at the house.
Emma: Maybe we can find that out.
Patrik: That’s all right. It’s probably not a make or break. I think what’s happening at the moment could be make or break.
Emma: Okay.
Ron: What are the main medicines for that? Do you know the main?
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Emma: Main blood pressure medicines?
Julius: I mean, the blood pressure meds.
Patrik: There could be 10, probably something. A, it depends on whether she was suffering from high or from low blood pressure. Do you know?
Julius: High blood pressure.
Ron: Hight blood pressure.
Patrik: High blood pressure. So, it might have been on things like amlodipine.
Julius: I think it was. That’s it. It was an A.
Patrik: Metoprolol. Hydralazine. Amlodipine is a fairly common one in the community, but that’s not a make or break for what’s happened at the moment.
Julius: Okay. Yeah. It definitely was a high blood pressure. So, I believe she had pressure-
Emma: Yeah. We just wanted some advice for all-
Julius: She did have blood pressure medicines, but not these particular blood pressure medicines.
Emma: Well, I wish I would’ve found you before.
Julius: Oh, my gosh. Yes.
Emma: I mean, I found you because of this, what’s going on. I wish I would’ve found you before, when we first got in there.
Patrik: Look, we still have time. I think you should definitely suggest what I mentioned – nitric oxide, epoprostenol, and see what their reaction is to that. How big is the ICU? How many beds?
Emma: Oh, I don’t think it’s very big. Is it?
Ron: I think maybe just five or six.
Julius: No, there’s more than that.
Ron: No. More than that?
Emma: No, there’s another isle.
Julius: I want to say about 20.
Ron: Where? Oh, the-
Patrik: 20. Okay. Are you in a major metropolitan area?
Julius: Well-
Emma: Well, it’s a suburb.
Patrik: Suburb, okay. The reason I’m asking, is sometimes people are stuck in the countryside somewhere and they just don’t have the same access to resources and sometimes also knowledge and expertise to get sort of the latest treatment.
Julius: It’s not what-
Emma: It’s a metropolitan area, let’s just say.
Patrik: Okay. Okay, that’s good.
Patrik: Right, I see.
Emma: It’s not in the country. It’s a fairly metropolitan area.
Julius: That’s best, yeah.
Patrik: Okay, good. No, that’s good to know. So, they should have definitely come across nitric oxide and epoprostenol then.
Julius: Oh, God, yeah. I would hope that this will do something.
Emma: Yeah, they would know what we’re talking about. Yeah.
Patrik: Yeah. Okay.
Julius: They may not admit they know about it because they were like, “What are you talking about?”
Patrik: Sure.
Julius: But-
Emma: Like they don’t admit that they know it’s our right to get the medical records.
Patrik: Exactly. Okay. And those would be my immediate action steps if I was you.
Julius: Okay.
Emma: Okay.
Patrik: What are they proposing? Will they keep proning her? What are they saying?
Julius: They keep proning her right now, but I’m getting ready for the fact that they are probably-
Emma: Oh, they’re just saying, “Give up.”
Julius: They can’t.
Emma: Yeah, they’re saying, “Give up. There’s nothing we can do.”
Julius: I’m getting ready.
Emma: “It’s all over.” That’s kind of what they’ve been saying since we came through the door.
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Patrik: Right. Have they asked you to sign DNR?
Emma: What’s a DNR?
Patrik: Okay. DNR stands for do not-
Julius: No. No. Do Not Resuscitate. No. We told them not to do that.
Emma: Yes.
Patrik: Okay. You’ve been asked and you-
Emma: In case we weren’t there and something happened and we weren’t able to be notified quick enough, we just wanted that there just in case. Well, it’s only two of us. We can’t sit there 24/7 and we’re-
Patrik: Of course.
Emma: … not a big family. If we had a bigger family, I would suggest that actually, so they can realize-
Patrik: Yeah.
Emma: Absolutely.
Patrik: No, look if I was you, I would not sign a DNR.
Julius: No, we made sure that was very clear that we want-
Patrik: Good. Okay. And-
Julius: Many times, now, in the last few days we said we do want every measure.
Patrik: Yeah, no, that’s good. I would be very clear there if I was you, in case they keep-
Julius: Because she’s fragile…
Patrik: In case they keep pushing you. Once people sign a DNR, it’s almost like saying, “Oh, yeah, we don’t want everything done.”
Emma: Right.
Julius: Right.
Emma: Exactly. Yes, yes, yes. Yeah. We were on top of that.
Julius: We were on top of that.
Patrik: Good. Okay, great. That’s pretty much what sort of as immediate action steps, what I would do if-
Julius: Now, with those action steps, I think I want to call … I need to get patient relations. They call it their department for patient rights. And I’ve had a really good communication constantly with them and I kind of want to get them on board because the meetings to where I can ask for things will happen if I get patient rights involved. If that makes sense.
Patrik: So how have you been getting information from them so far?
Julius: Until the last … like it’s because we’re calling them.
Emma: He calls patient rights every single time in order to have us pretty much get an update on what’s going on.
Julius: A real update.
Emma: So, it looks like you got to call patient rights every time you even want to update.
Julius: Because they used it in COVID. That’s the only way … They’re still in the COVID place.
Emma: Yeah. They’re still fully embraced in COVID mode, basically, now.
Julius: Except they’re letting us in and they’re letting all three of us go in.
Emma: Yeah, that’s right.
Julius: We have access.
Emma: Except we didn’t have one at a time. Yeah. We were able to go two and three at a time.
Julius: So, I feel like asking these questions, that question, use the nitric oxide, for me to ask that I need to have patient rights pushing them doctors to talk to me.
Patrik: Are you limited in visiting your mom because of COVID?
Ron: No.
Julius: No.
Patrik: Okay. Good. Good. So when you-
Emma: No. They’re not limiting us that way.
Patrik: Right. Okay. So, when you go there, no doctor is talking to you, no nurse is talking to you?
Julius: Oh, yeah, the nurse. Well, it’s because we’re there and then we’re calling.
Emma: They can only say so much. They’re always like, they’ll tell us a couple things. But if I ask a question or if he asks a question that’s a little too deep, they won’t answer it.
Julius: And they’ll say-
Emma: And I have the feeling that they can answer it, but they can’t answer it. If you get my drift?
Julius: They get really nervous with anything above their report.
Patrik: Outside of the narrative, they’re getting nervous.
Julius: Yes, yes, yes.
Emma: Yes.
Julius: Oh, very, very shaky.
Emma: Oh, they’re shaking. Shaking. When I ask questions, they shake.
Julius: So, I let her be the bad one and be, “Oh, I just wanted-
Emma: And that makes me rather suspicious, because someone is shaking and I’m just asking a couple questions. I’m like, “Why is that?”
Patrik: It’s kind of unusual because especially most ICUs, if anything, they drag people in and say, “Look, we got to give you an update. We got to rub the doom and gloom into your face.”
Julius: Oh, no, no, no.
Patrik: That’s not-
Emma: They do that. They’re good at that. That part they got, the doom and gloom part, I mean.
Julius: The doom and gloom.
Patrik: Okay.
Julius: But we’re actually calling them and telling … I’m always giving them a praise all the time so that I can get to the next level of getting them to give me a little more information.
Patrik: When are the doctors doing their rounds? Do you know?
Julius: We’ve been there, like I said, if I request-
Emma: Morning, at least 10 o’clock, maximum, I would say.
Julius: 10 o’clock in the morning.
Patrik: Okay. So, when they do the rounds, so you’ve been there for the rounds?
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Julius: Yeah, just one time, because … And it was actually kind of orchestrated at the time we were going to be there because of patient rights, really.
Patrik: Right. And they let-
Emma: Was it 9:00 or … Maybe it’s early. Maybe it’s just before 10:00 because 10:00 is visiting hours. So maybe it’s 9:00.
Patrik: Okay.
Emma: Was it early that day? I think it was early that day. Yeah. It could be just before visiting. We’re not a hundred percent sure, but that’s the only time we’ve seen that going on.
Patrik: Right. And they let you stay for the round?
Julius: They did.
Emma: That particular time.
Julius: Because of patient relations, I would say.
Emma: Yeah.
Patrik: Right. Okay.
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
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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!