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 episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Megan, as part of my 1:1 consulting and advocacy service! Megan’s brother is ventilated in ICU and Megan is asking why they issued a Do Not Resuscitate (DNR) order in front of her brother.
My Brother is Ventilated in ICU with Pneumonia. Why Did they Issue a “Do Not Resuscitate” (DNR) Order in Front of my Brother?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Megan here.”
Megan: This was directly after. He literally sat down and he just looked me straight in the eyes and he said, and he said it in a most unpleasant way. He said, “Ryan’s not going to make it.”
Patrik: And that was in front of Ryan?
Megan: Ryan.
Patrik: That is so inappropriate. And Ryan was awake at that point in time?
Megan: Well, Ryan had the radio. I’ve got Ryan a radio to try and give him some comfort and ground him a bit. That there is life outside this terrible place. I cannot tell you whether he heard or not, but if I say, Ryan, he’ll open his eyes and look at me. So I think he may very well have heard.
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Patrik: That is so inappropriate. Did you ask, did you say anything at the time? Did you say to him, “Look, can we have this discussion not in front of Ryan?” Is that something you thought of?
Megan: I think I was so completely taken … I didn’t have a chance to, because I don’t know. Ryan was sleeping, so he may not have heard, but he may have heard.
Patrik: That’s right.
Megan: He just, he sat down and he just immediately said it to me. It was like he just wanted to say it and go.
Patrik: Sure. Matter of fact, he didn’t give you time to respond to that.
Megan: Yes. It was like an ambush, he ambushed me. They ambushed me.
Patrik: Was anybody else there with him? Like a junior doctor or just a nurse?
Megan: No, no, they’d all gone. It was just him and me.
Patrik: Right, okay. I think it’s timely now because they’re pulling in one direction, then you’re pulling in the other direction. Because now you need to start challenging the DNR, and you go about it in a professional way. You just ask them for the DNR policy, and if they ask you why, well you just tell them, “Look, I don’t agree with Ryan’s dying. I don’t agree with DNR.” If you were to ask Ryan, you would get a very different response. Right?
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Megan: Yeah.
Patrik: And also, you can also, something in the DNR policy will say something along the lines of, that either a patient or a medical power of attorney needs to be consulted on this. Now here is where it gets really important, right?
Megan: Difficult.
Patrik: And that you need to be consulted. Now, you haven’t been consulted on this, you haven’t been told.
Megan: Yes, I’ve been told.
Patrik: Yeah, you’ve been told and Ryan hasn’t even been told.
Megan: No, Ryan had no idea.
Patrik: That’s right. So basically he’s lying there for the last six weeks. He has no idea that the doctor’s potentially made a life or death decision over him.
Megan: On his behalf.
Patrik: On his behalf, right? And that is something that needs to match the policy, and he’s 99% involved. Right. And that’s, and we’ve done that successfully with other clients where we revoked DNRs or NFRs because of that, because of the hospitals basically telling families, “Yeah, we’ve issued a DNR. It’s ‘in the patient’s best interest.’ We know what’s best.” And saying to families, “We don’t need to ask you.” Well, they do.
Megan: They do. Because I remember when my mother was in the hospital, not when she was in intensive care, but before that she had, she got very constipated, rather like Ryan, and she had a very nasty rectal bleed just like Ryan. And there’s rather, and this very nice girl in the next bed called me on the phone. She said, “You better get here quick.” Luckily I was five minutes away. I turned up, and this doctor was, the space was very sweaty and he said, “We want to put, we must put DNR, we must put DNR.”
Megan: And my mother would look up at me and I said, “You are doing nothing of the sort.” I said, and my mother was awake as well. So he said, “Well, it would mean breaking her ribs, if she has a heart attack, we would have to break her ribs.” I said, “Well then, go ahead and do it. You get no permission from me.” And that was it. And he went away, and they gave her a couple of units of blood and the bleeding stopped. And that was that. But they were dead set to put DNR on her as well.
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Megan: And that was the same. It was a bit more hysterical. It was a bit more urgent, in this with my mother. But I just stood my ground and I just said no. Why would you do that? Because she’s bleeding from her bottom, you don’t have to put DNR on her. Ridiculous.
Patrik: That is ridiculous. And also with Ryan, the whole situation also seems to coincide with, now they stopped mobilizing him and as you would have seen in my email yesterday, I-
Megan: Crucial.
Patrik: … so important. So important.
Megan: Patrik, it seems to me they’re trying to make him run before he can walk. In other words, they’ve dragged him out of bed. I left him in bed for all these weeks, and they’ve got him up and making him sit up on his own. To me, it should be the chair really, first. Wouldn’t that be kinder?
Patrik: Absolutely. And then you’re absolutely right that they might try to make him run before he could crawl. At the same time, you do want in situations like that, you certainly do want also to sort of find out, how fast can he go? But then they’re not mobilizing him out of the blue at all is not, that’s not appropriate, because have you seen … From what I understand, you have seen some progress.
Megan: Yes. Yes. And he was in the, the progress was all around. You see, very quickly, I will tell you, they have two chairs. One of the chairs is broken. Oh, it’s a real, I don’t know what to say really. I mean, to me it’s so important. So basically what they said is Ryan cannot go in the chair every day. He has to share with somebody else.
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Patrik: That’s just … again, I’m giggling, it’s so bad-
Megan: I know, because I mean, I would literally buy a chair, and I don’t know how much they cost. But I mean, it’s crazy.
Patrik: … It is crazy.
Megan: Yeah, because it’s, his recovery really more or less depends on it, doesn’t it? It really-
Patrik: Very much so.
Megan: … Yeah.
Patrik: How many beds are in this ICU?
Megan: 13.
Patrik: 13, and are you saying they have one chair? Is that what you’re saying?
Megan: Yes.
Patrik: Oh my goodness. Oh my goodness. I still do a couple of shifts in ICU every month myself. I can tell you there is the ICU that I work at, there is half of the unit has chairs. I mean, you don’t need more than half usually, because people are sick. But we have chairs for all patients that need a chair.
Megan: Yes.
Patrik: Right.
Megan: And they’ve got a second one and it hasn’t got the right parts, they’re waiting on the parts.
Patrik: What a state of affairs.
Megan: What a state of affairs, and it seems to be directly impacting Ryan because he went in the chair, he’s only been in once, in the chair once, but he went in the chair and his breathing was improving, and he was alert, and the blood gases had been good anyway, but she said they were particularly good and his saturation was fantastic, and his mood was good. And this is when I wrote you the email that he’s doing really well.
Patrik: Yes.
Megan: Then the next day they said, “Sorry, the other fellow just had the stroke. He’s got to have the chair.” And then yesterday they said, “Oh, he was too tired. We’d prefer to wean him than put him in the chair. So we put him on the side of the bed and he’s so tired now that we think he’s going to die.” They basically, that’s what the doctor said.
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Patrik: So I’ll give you a quick example. I’m currently working with another client in Germany.
Megan: Yes.
Patrik: Now, so it’s a lady who’s got a 75 year old dad in ICU. I’ll give you a very brief version. Been in ICU since May, has just left ICU last week. Cutting a long story short, had seven cardiac arrests during this time, has really survived against the odds.
Megan: All the odds.
Patrik: Against all the odds, and we’ve really pushed hard and there were the whole discussions, like NFR, DNR, the whole, very similar-
Megan: Right.
Patrik: … very similar situation. And very, as soon as there was any sign that he would deteriorate, or it was all doom and gloom and, you know what I’m talking about.
Megan: Yes I do.
Patrik: So the client is out of ICU. So far he’s holding his own, that’s really positive. But it was certainly, always, they pushed back saying, “Look, he’s not going to make it.” And we pushed back and said, “Look, stop, wait. He survived seven cardiac arrests. Why would he not survive now?”
Megan: Another, yeah. Why would he not survive now?
Patrik: Right. Why would he not survive now? And it’s similar with Ryan. Just because he has cancer, that doesn’t mean people don’t leave ICU. That’s the way they are trying to frame this.
Megan: That’s the way they’re framing it, it’s exactly what they’re doing it. That’s exactly what they’re doing. “Because he’s got cancer, he’s finished.”
Patrik: That’s right. So then we sat, is the oncologist involved?
Megan: Sorry Patrik?
Patrik: Is an oncologist involved? You know what-
Megan: Well, yes, I do.
Patrik: … Right.
Megan: Yes, yes. Well, I’ll tell you very briefly, this ghastly woman doctor Ann, she said that they’d had a group, a big meeting, another one of their ghastly meetings, with various different disciplines or whatever, including oncology. And they decided that they couldn’t do anything at the moment, but what they would offer him if they offer him anything, is hormone treatment.
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Patrik: Right. Have you yourself spoken to the oncologist or do you hear, did you hear that secondhand?
Megan: That was what Dr. Ann told me.
Patrik: Okay. If I was you, I would get it from the horse’s mouth, so to speak.
Megan: Yes.
Patrik: Right, because, it may or may not be accurate, what she’s telling you. And then, for example, do you know have they any other specialists involved? For example, have they got a respiratory physician involved?
Megan: I don’t know.
Patrik: You don’t know.
Megan: I know that they’ve had the general surgeons involved with the rectal bleed, and I’m pretty sure they’ve had the renal people because of Ryan’s … by the way, his kidneys seem to be very fragile. If, I tried to tell him, I told him a hundred times. He’s under the care of your renal unit, he’s been coming here for eight years. His kidneys aren’t stable, they’re not great. But this stable they are, in eight years, not got anywhere.
Patrik: Right.
Megan: And they keep saying, “Oh but this …” but they’ve stopped going on about his kidneys now because he’s been urinating a lot. He seems to have gone along. That doesn’t seem to be one of the reasons why he’s dying. The reason he’s dying according to them is that he’s too weak because of cancer.
Patrik: What is your gut feeling telling you about your brother? Is he dying?
Megan: No, I don’t think so.
Patrik: No, and I’ll tell you why he’s not.
Megan: No, I think he’s weak because they’ve left him in the bed and he’s dry, dry, very dry. Not enough fluids and depressed and living in that awful place. He’s giving up, I think.
Patrik: Right. So, I’ll tell you why your brother is not dying. I mean, he’s managing eight hours off the ventilator every day, right? I mean, that could potentially be better if they were getting him out of bed every day, and all of that. But he’s clearly not dying if he’s managing to wean off the ventilator. Right.
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Megan: That’s what I thought. To get the other thing, all the things, all the, like he’s 99 saturation, his blood pressure is like 120 over 70 or something. And all of the indicators and his CO2 is about three and a half to four, and all those things that blood got have come back good. It doesn’t sound like dying to me.
Patrik: No, no. And I’ll tell you what would happen, let’s just say, they would take him off the ventilator. He wouldn’t die. Or if he was to die, he would die a slow, horrible death. You know what I’m saying?
Megan: Yes.
Patrik: So, he can’t, what they’re saying is just really hypothetical, right? What’s happening is he’s not recovering at a pace that’s convenient for them. That’s all it is.
Megan: Yes. That is all it is. They’re fed up he’s not, it’s very, very slow, and they’re fed up with the whole thing. That’s what it is.
Patrik: That’s right. That’s right. And if you looked around, I don’t know, would there be many other, or do you know whether there are any other families in there or any other patients that would have been in there as long as Ryan is? Probably not.
Megan: Yes. There’s one family that I talk to. There, his blood and they had a stroke. They said he had, that he was brain dead and that it was all hopeless. Well, it turned out that wasn’t the case at all. Excuse me. And the brother is making a bit of a comeback, and he is been in there another month more than Ryan.
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Patrik: Okay. So then, this is important information. So you’re talking 13 beds in there?
Megan: Yes.
Patrik: Okay. So, why is this important? So you’ve got two out of 13 beds occupied long-term.
Megan: Yeah.
Patrik: Okay. That is more than 10% of their capacity. That’s massive.
Megan: Yes.
Patrik: That’s massive. So those two, what the hospital would refer to as bed blocks, those two-bed blocks have a huge impact on their ICU.
Megan: Yes.
Patrik: Right? And sometimes, and again, I probably would put that obviously, for now, you may have to call them out on that when the time is right.
Megan: Yes.
Patrik: Right?
Megan: Yes. Just because they are basically this fellow and Ryan is kind of bed blocking, aren’t they?
Patrik: Very much so. Very much. So what’s happening on a bigger picture level is, I don’t know this hospital in particular, but what could happen is they potentially have to cancel surgery because they have no ICU beds.
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Megan: Yes.
Patrik: Right? So somebody was in the hospital, whether it’s the general manager, or the CEO, or the director of nursing or, would have to manage potentially some very unhappy surgeons in the background. Or, what could be even worse, some of their patients have come through the emergency room, have to go somewhere else because there are no ICU beds. Right? So, it is really important knowledge to have, because somebody within that hospital will be jumping up and down. Especially if you know that there’s a second one. It’s all, it’s more than 10% of their capacity.
Megan: There’s a third one as well who’s been in there quite a while. In fact, there’s a fourth, a third and a fourth. Not quite as long as Ryan, but both very elderly. One is the end of life, I think. From what I could gather, and the other is an elderly, very elderly gentleman opposite Ryan actually.
Patrik: Right.
Megan: But not quite, both of those two have been in there a few weeks, but not quite to the degree of this other fellow who’s been in longer than Ryan. But Ryan is definitely one of the longer term, second-longest term.
Patrik: You have a much better feel by now what you’re dealing with. And it’s good that you know that there are potentially other patients who are in a similar situation because yeah, it’s definitely playing on their mind in terms of, how are we going with our ICU if there’s potentially three, four patients going to stay here for much longer? It’ll impact the whole hospital. Through the whole hospital.
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Megan: I understand, it goes right the way back to people who are having heart surgery perhaps or-
Patrik: Yeah, very much so.
Megan: … complicated, yeah. They would go straight in there, wouldn’t they?
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
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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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