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 Can I Prevent the ICU Doctor to Sabotage Me with Bad News that My Brother Won’t Make It?
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 in ICU with
tracheostomy and Megan is asking why they keep her brother on DNR (“Do Not Resuscitate”) status when he is doing well.
Why They Keep My Brother in ICU on DNR (“Do Not Resuscitate”) Status When He Is Doing Well?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Megan here.”
Part 1
Part 2
Megan: One day we’ll try and get him out, next day he’s not going to make it. Next day they’re mailing a plan. I wonder if it’s deliberate to keep you off balance.
Patrik: Look, it’s difficult to predict intensive care for anyone, it’s very difficult to predict what’s going to happen. It’s hard. To a degree, yes, it’s deliberate. For them, it’s always to keep the worst case scenario in mind, and always to manage your expectations.
Megan: Yes.
Patrik: And, if I have to say one thing in fairness, they can’t tell you that Ryan is definitely going to survive, they can’t tell you that, because nobody knows.
Megan: Nobody knows.
Patrik: Right. What they have to tell you though, is that they will try everything that they can, and that really hasn’t happened.
Megan: No, absolutely. And the consultant that I spoke to before, Dr. Alden, who said, look, I can’t say he’ll come out of here, but if he can turn the corner, I think there is a reasonable chance. Now that’s fair enough. I can’t tell you, he said, and it will take months of rehabilitation if he gets out of here. Nothing much has changed, but we will keep trying. You can ask more than that. That was so fair, and he said, I haven’t really got any
more to add and off he went. And I thought that’s very fair, and it didn’t raise my expectations, I just thought that was fair. He’s saying, we haven’t given up, we can’t give you any guarantees, but we’ll keep going.
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Patrik: That’s right, that’s all you want. And that’s all right, but yeah, you got to keep watching them. But as I said, I didn’t sense sort of any negativity, in terms of that he would have a bad day today.
Megan: No. Did you feel Patrik that she was more positive than the staff, who was saying, Ryan is very weak, Ryan is very weak. Did you feel she was more positive?
Patrik: Yes, definitely. However, to a degree I’m sensing, she doesn’t know Ryan. That’s what I’m sensing to a degree.
Megan: Yes, yes. I don’t think she does either, I’ve never seen her before. I tell you what, Patrik, they’ve got a board, and I like to stand in the corridor rather than sit in the relatives room, because the relatives tend to be very kind of, like it’s a bit of a party, and I don’t feel that it is, I am very serious. You know what they can be like a bit. And there’s a group in there that seem to know each other, I don’t know, and they chatter
away, and it makes me feel uncomfortable. So I just stand in the hall, and I think standing is also good, don’t want to sit around too much. But there is a board and it’s got all the nurses on it and all their pictures and names, I’ll look and see if she’s on that.
Patrik: Yeah, and if she’s not on there, I’ll tell you what, if she’s not on there, you can be 99% certain that she’s either an agency nurse, or that she’s very new and they haven’t got her name on the board yet, or that she’s a potentially a bank staff member. But even so a bank staff member should be on the board, you know?
Megan: Yes. The bank staff are there, because one of the bank nurses is somebody actually by just sheer coincidence, I think I mentioned to you, Ryan’s previous communities psychiatric nurse, her name is there on the bank. Because I noticed the name and I picked up on it, and they said, yes, it was her. So there’s four bank nurses of which Rose is one, and they’re in a separate section. And then you’ve got the domestic staff, and then you’ve got
the senior staff, but the one thing you don’t have is the doctors, just the nurses.
Patrik: Yeah, that is a bit of a concern. We want to know the doctor’s names as well.
Megan: Yes. What I’m going to do from now on every time there’s a change, I’m going to write it down in my diary.
Patrik: Yes, you definitely should. Yeah, because I’ve looked up Dr. Gie, and Dr. Gie is actually an anesthetist, that is her specialty. Yeah, they’re often intensivists and anesthetists, they often are. So there’s nothing new there. Next week, once you’ve gauged sort of what’s happening over the weekend, I mean, you can mention the DNR as soon as you want.
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Megan: Yes. I was thinking to mention it to one of the nurses that know him. I wouldn’t mention it to Dr. Gie, so I don’t think there’d be much point in that, one of the regular seniors, I was thinking.
Patrik: I think you should mention it to the doctors.
Megan: Or the doctors, okay.
Patrik: The nurses, no, no, probably a good idea to start with the nurses.
Megan: That’s what I thought.
Patrik: Yeah, it’s a good idea to start with the nurses to sort of almost like asking, simply, what’s with this DNR, and then get a feel for what they are thinking.
Megan: Yes, yes. Soften them up, not soften them up, but soften the discussion up a bit, so to make it a very general inquiry. I was thinking to say this Patrik, very quickly, do you think this sounds like a good approach? I could say, and I think depending how he gets on this weekend and assuming he continues to make progress, could I not say, now that things are looking a little brighter, do you think it would be appropriate to remove? Because
all this month, weeks and weeks of nursing you’ve put in, and all the time, to have DNR on there when he’s doing so well, seems very inappropriate. That’s what I was going to say.
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Patrik: Yeah, it’s probably the best approach. It’s probably the best approach to approach it like that. And also, you’ve seen the email that I sent you earlier, and I’ll give you a little bit of background there. This was actually a lady who had a stroke in June or July, and she had the stroke on the background of cancer as well. I had an email actually yesterday, and her daughter told me that she’s on her way home.
Megan: Oh, how wonderful.
Patrik: After many months in hospital, she left ICU, many months, like couple of months ago now, but she’s now in rehab and it looks like she can go home in the next few weeks. So cancer, in this day and age, is not a death sentence. It can be, but often it’s not, there’s people living with cancer for years.
Megan: Yes. So, to use that as the overriding reason that he’s not going to make it, you think is ridiculous really?
Patrik: It’s also ridiculous to use for a DNR. And I’ll tell you why, I would really bring it back. It’s probably another way to approach this with the nurses is, has anybody asked Ryan, you know what I mean? He’s in his bed and they’re making decisions that are absolutely ridiculous.
Megan: Yes. Has anybody asked him? Because yesterday I was asking him questions, as I say, he tries to then speak and then the breathing goes up. So I have to go easy, I don’t want to put him under stress at all, that’s not my purpose being there. But I was asking him about various things about his flat, that would he want we to do. And he was totally understanding what I was saying. There was the question, do you want a blue carpet? Yeah. Do you
want me to save the bedside table? Yep. Look, I’m going to get you a new bed, it’s got to be just as comfy as the old one, and he’s nodding and smiling. He knows what I’m saying, but they don’t seem to appreciate that. I don’t know why, but he totally understands what you’re saying.
Patrik: Good, good. I think you should keep doing that, because again, it’s another sign to them that you’re not even going, you’re talking about the future.
Megan: Yes. This is partly why I do it, Patrik.
Patrik: No, no, keep doing that.
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Megan: Because they said to me, oh, are you reorganizing his flat? I said, yes. We’re getting some new bits and pieces for when he comes home.
Patrik: Good, no, no, keep doing that.
Megan: Yes. There’s this very nice John, very, very nice. He says, oh, he says to Ryan, don’t you let that sister of yours in your house. You won’t recognize it when you get home. He said, oh no, don’t let her, she got a key. But even if they think he may not be going home, I want them to think that I am sure he is going home.
Patrik: Correct. Correct. You are doing, I always say, it applies to every situation in life, don’t worry about the things that you can’t control, just worry about the things that you can control. You can’t control what they’re doing, but you are 100% in control number one, how you respond and what actions you take, you are in control of that.
Megan: They cannot affect that, they can have no effect on that. They have no control.
Patrik: So definitely keep doing that, because nobody else is talking about the future with him in there, and you need to keep doing that. The other thing that I was wondering when I called is, if I was to call more regularly, would they potentially say to Ryan, oh Patrik called?
Megan: Yes, there is a danger of this, and although I have tried to tell him, I’m not sure. I’m just not sure he quite gets the whole thing, because he sort of looks at me in a bit of a quizzical way, because like uh? You see, of course I have to be careful, because I can’t say too much, because they’re behind me. So it’s very difficult to get that moment alone, but I’ll have another try today if it’s quiet. The time to do it is when the nurse
comes on her break, and then she says to the other one on the other side, keep an eye on Ryan, and they’re usually quite a distance away.
Megan: So while I can’t take pictures necessarily, but really, I will do it today, I can certainly talk to him. And that’s when I do my talking, is when they go on their break. Good opportunity.
Patrik: Okay. And would there be something like, when they talk on the phone, is this a portable phone? They wouldn’t even go to take the phone to Ryan and say, here’s Patrik or whatever. They wouldn’t do that, would they?
Megan: Yes, it’s portable. I don’t ask very often, because I think poor Ryan probably finds it a bit, because he can’t speak. But sometimes someone would take the phone and you speak to him, and I say, hello, blah, blah, whatever. And so yes, they do take the phone.
Patrik: Okay. Let’s just say they did that, they said to him, oh, Patrik called, and he might roll his eyes or whatever. You could always say, he’s confused. To a degree, you could then use that.
Megan: Yes. The other thing I can say, because remember the story is that you met once in London before you got married. So I could say, after all that’s happened, he doesn’t really remember. He knows many of us in London, but he doesn’t remember Patrik very well.
Patrik: No, no, that’s good. That’s good. No, no, use that.
Megan: Yes. Oh Patrik, did you like the pictures of my parents?
Patrik: Yes, wonderful.
Megan: Well, I thought if I’m going to give you all the background, I’ll just add a few photos in.
Patrik: Put a picture to a name.
Megan: Yes, I thought so. I was just going to send it off and I thought, I’ve got some pictures on my computer.
Patrik: Thank you.
Megan: Good, good. And also I think that’s what we’d say, we’d say you only met once.
Patrik: That’s right. Look, I don’t see any sort of immediate sign for that, but the more experienced nurses might sort of try and put a bit of a spanner in the works every now and then, you never know.
Megan: You never know, because they’re not daft.
Patrik: No, no, they’re not daft. But then at the same time, it is what it is, you have every right to let people ask questions if you want them to.
Megan: Indeed. And the other thing is, the more that you speak with them, the less it’s going to be a strange thing that happens, and so therefore it becomes the norm
.
Patrik: That’s right. So, you know, there’s a lot of that, let’s go with the flow. And again, I always bring it back to well, if Megan wants me to call, what’s your problem?
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Megan: Yes, what’s your problem? Yeah, exactly. You see of course, Ryan is not obviously going to be speaking for a while, so it’s only facial expressions that could give us away, and I don’t think Ryan will do that anyway. I’ll speak to him again today.
Patrik: No, that’s good.
Megan: But there were so many of us in London, it’s absolutely, it’s from a family of eight, I mean it’s huge, and you’ve only been here once. I mean, Ryan wouldn’t remember, well he would remember this person, but he wouldn’t remember the other one, he wouldn’t remember these people, especially now. So I think we will be all right.
Patrik: Yeah, it’s fine. And you know, one thing that I say in those situations is always, don’t over complicate, and we certainly haven’t overcomplicated. We haven’t over complicated at all.
Megan: No, no, not at all. And if they do start this taking the phone to Ryan, hopefully by then I will have got him totally aware of what’s going on. The only thing is, I’m not quite sure at the moment, how much he remembers, that’s the only thing. He certainly knows what you’re saying.
Patrik: Probably not much.
Megan: Not much, no, that’s what I think.
Patrik: Most people, when they come out of ICU, they don’t remember much. In fact, the research shows that people leave ICU and obviously most of the time they’re conscious. But when you ask them six months later, they say, the first thing that I remember is when I was back on the ward, I heard that many, many times.
Megan: Yes, so it’s not really surprising. And the other thing Patrik, just to ask you, it seems to me that Ryan was more or less anesthetized for a good few weeks. If you have an operation like with my perforated appendix, I remember feeling lousy, obviously with infection as well. But if you’ve been anesthetized for weeks, that’s going to leave you feeling a bit strange, I would think, a bit kind of disorientated.
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Patrik: I think you put that very mildly, it’s much worse than that. You put this very mildly.
Megan: Yes, because just three hours or two hours under an anesthetic, leaves you feeling pretty bad, and months to recover. And Ryan’s had weeks, and weeks, and weeks, of this.
Patrik: Yes, and keep in mind some of the stuff he was having there, if he had midazolam or morphine, they are addictive. He’s probably been through the withdrawal already, but he would have gone through some withdrawal.
Megan: I was wondering that, I was going to ask him, is he going to be going through a withdrawal.
Patrik: He’s probably over it now, hopefully, but he would’ve gone through some of it.
Megan: Do you think that’s another reason why he was sleeping?
Patrik: Oh, absolutely. This is definitely another reason why he potentially was sleeping. And that’s what I said, if it’s a one off, that’s just fine, but if it’s every day, that’s a concern.
Megan: Yes. Yesterday he was much, much, much more alert. And the nurses, they’re very sweet with him, when they go off their duty, they go and say goodbye to him. These are not the ones that are looking after him, they’re very sweet. Bye, bye Ryan, they say, we’re going now. And he looks up at them and smiles, he knows them.
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Patrik: That’s good, that’s good. Keep them on your side, because again, when it comes to really difficult decisions, you want to have people on your side within them. And that’s really good, no, no, that’s really good. That gives me a much better understanding of the dynamics. And as I said, when I talk to the nurses, I get no sort of negativity, a little bit, but nothing too sinister.
Megan: Nope.
Patrik: So keep the nurses on your side, and the nurses will be on your side. You know what I mean? The nurses are way more patient oriented than any other professional group in ICU, because we are so close to it.
Megan: Yes, and I think some of them really have developed quite a bond with him.
Patrik: Good. Yeah, they would have.
Megan: Yeah, they would. They ask to look after him, they ask for him. So this is good.
Patrik: Absolutely. From experience, when I was still full time in ICU, the long-term patients that I looked after, I do remember them. I do.
Megan: You do remember them.
Patrik: I do remember, particularly the ones that we looked after and not being there, I do remember the ones that we looked after sometimes for weeks or for months and that they did die. I do remember them very vividly because you do form such a bond, and you do try to get them out.
Megan: Your best.
Patrik: Right. I do remember some of them very, very vividly.
Megan: You do. Yes, I get the feeling with these nurses, the way they are with him, the way they talk with him and the way they’re “I’m back with Ryan!” They put the thumbs up and all this.
Patrik: He’s popular. That’s good.
Megan: Popular, yes.
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Patrik: That’s good. No, use that for your advantage, for his advantage.
Megan: That’s why I took a picture in of him and me and they say, “Oh, isn’t he handsome!” And “Look at his eyes.”
Megan: And I just go, “Oh, yes.”
Megan: But the truth is, he’s the sweetest, most gentle person. And they’ve picked up on this. That he’s got a very sweet temperament and the nurses seem to have really honed in on that.
Patrik: Good.
Megan: Which is great, and he’s very compliant.
Patrik: That’s good.
The 1:1 consulting session will continue in next week’s episode.
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