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 one of my clients and the question from Natasha an in last week’s episode was
You can check out last week’s question by clicking on the link here.
Bob’s father was admitted in the ICU due to deteriorating condition. Prior to the event, his father was in and out of the hospital and was on the ventilator many times, he also had a liver transplant due to taking medications for his kidneys. Lastly, his father was diagnosed with a chest mass.
The ICU is telling me that my father’s condition is hopeless. Should I stop his medical treatment?
Patrik: Hi. It’s Patrik speaking here, from IntensiveCareHotline.com. How are you?
Bob: Oh, hi Patrik. I’m fine.
Patrik: Are you Bob?
Bob: Yeah, Bob is fine, B-O-B is fine.
Patrik: No, that’s fine, that’s fine. Can you hear me okay?
Bob: Yes, I can. Loud and clear. Thank you.
Patrik: Wonderful, so you have a family member in intensive care?
Bob: Yes. It’s my father. 18 years ago, he had a liver transplant. He had some kidney medication that, unfortunately, didn’t quite work for him, went through his liver. Had a liver transplant 18 years ago.
That’s all fine, but last year he had a bout of pneumonia. He was in hospital for about three weeks. It eventually cleared up and he was discharged but at the time, they said that his lungs had become quite weak. He was given a respirator to use from time to time.
He went to India earlier this year in about March. He was feeling much better and in good spirits as well. He went to India. After about three weeks, due to the choky kind of air that they have there … I don’t know if you’ve ever been, but it’s fairly choky, bit of hard work. Past two weeks, he again developed breathing problems. He was admitted to hospital A. Hospital A put him on a ventilator. He’s been there for the last three days, but unfortunately, he contracted a hospital acquired pneumonia.
They said they couldn’t really do a great deal, so they transferred him to hospital B. Hospital B gave him the ICU treatment there, put him on a ventilator, and he deteriorated. After about three days, they managed to get him back on his feet. They put him on a normal room. He stayed there for approximately seven-ish days during which time, they gave him antibiotics, etcetera. He was drinking tea, talking, relatively lucid, but he was slightly confused and obviously worse for wear. They discharged him after about seven days.
He then came back to England. He was well enough, he seemed reasonably well, not perfect obviously but went to his general physician. The general physician could see that he was not getting better, took him to hospital on the third of May. On the third of May, he went to a regular hospital. They took a scan, they found a mass there inside of his chest. They kept him in for the third, fourth, fifth, sixth, seventh. On the seventh, unfortunately, all of his vitals dropped and when they did a scan, they could see the pneumonia.
He was put into the ICU Department at the regular hospital. He’s been there, on a ventilator since then. They’re saying one issue is the lungs, the lungs are fairly weak. They have put him on this C-P-A-P now. He’s sort of improved for the last, perhaps, a week.
Patrik: They put him on what? Say that again please. They put him on what?
Bob: They put him on C-P-A-P.
Patrik: Oh, CPAP. Sure, yeah.
Patrik: Yeah, that’s okay.
Bob: He varies between 13 and 14, in terms of oxygen levels. They tried keep on lowering it yesterday, for short periods. They’ve also given him the medication for low blood pressure. It’s twice the normal amount, although it’s been erratic.
Patrik: You’re probably referring to Noradrenaline there?
Bob: Noradrenaline, absolutely, yeah.
Bob: Lastly, he’s developed some sort of kidney issues as well, with the sepsis and other things. He was on dialysis and they put him on and off dialysis, but now he’s off dialysis. What they’re saying is that they don’t have much expectation for him. This is a man who’s 78 years old. He was obviously drained before he got there, and he’s obviously had considerable medications subsequently. I think they’re doing a bit of a bed count as well, unfortunately.
Patrik: Oh, absolutely.
- “Why your critically ill loved one might need Dialysis (Kidney machine) or Haemofiltration for Kidney Failure (Renal Failure) and is having a Dialysis machine attached to them!”
Bob: He wouldn’t be having treatment just for … He wouldn’t be restored to the level they’re looking at any time soon simply because he’s so emaciated, in terms of his health and just generally very weak. But that said, he has improved. I think he’s improved more than they perhaps thought he would, simply because he’s on the CPAP.
He is coming back. I asked him the other day, well, I told him the other day that he’s been there for 18 days, and he kind of rolled his eyes. I asked him again, just to make sure that he was understanding what I was saying, and he gave me those rolled eyes in kind of … Exasperation and surprise. But for some reason, they’re not seeing any of this. I know there may be a language barrier, but equally, he is responding. Albeit, he does drift in and out.
Patrik: Well, and you don’t have that language barrier. You speak the language of your dad.
Bob: Absolutely, that’s absolutely right. But the point is they’re saying that they’re not going to put him back on dialysis, because they think it’s futile. The way we see it, when he is on dialysis, obviously it will help his overall well-being. It will help his lungs; it will help him getting the toxins out. His kidneys aren’t functioning well although he’s never had a kidney issue before, but equally they’re not working very well. It’s the toxins and I think they’re trying to kill him. I think I know that they’re trying to switch off the ventilator, because it may cause a cardiac arrest or something.
Patrik: Has there been any talk about a DNR? Do you know what I mean by DNR?
Bob: DNR? I’m not sure.
Patrik: You mentioned they’re “slowly” trying to kill him off. You mentioned they’re doing the bed count. You’ve spotted the right signs already. What often goes hand in hand with that is a DNR. DNR stands for Do Not Resuscitate.
Bob: DNR yeah. They did expect that when we first went to the ICU.
Patrik: Right. You can confidently say he doesn’t have a DNR.
Bob: I can’t at the moment. I will certainly ask them. They haven’t mentioned it.
Patrik: Are you the medical power of attorney for your dad?
Bob: My mother is.
Patrik: Your mother is, but you could say you or your mother have not agreed to a DNR. You could say that.
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Patrik: That’s important to know. With the liver transplant 18 years ago, you mentioned the pneumonia, you mentioned the ventilation, you mentioned the inotropes, you mentioned the kidney failure. You have never mentioned the liver, so I must assume that the liver in spite of the transplant 18 years ago seems to work well.
Bob: Yeah, actually it’s working. Obviously, he’s on the anti-
Bob: The anti-rejection, yes. The liver itself has managed to despite all the trauma.
Patrik: Sure. It’s been since the seventh of May, this admission.
Bob: Yes, the admission.
Patrik: Any talk about a tracheostomy? Any talk about that? Do you know what I mean by a tracheostomy?
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Bob: That’s a hole in the neck.
Bob: No, they haven’t mentioned anything. I think to be quite blunt, they’re saying that we’re not going to do one. They’re not going to do anything beyond.
Patrik: Have you asked, for example, for a tracheostomy? Have you brought it up yourself or your mother or anybody else?
Bob: We haven’t. I may sound naïve which obviously I am, but up until yesterday we saw a progression. Sometimes, we’re told that nothing is going to come of it but yesterday was the eighth time. That was really devastating, simply because … From our perspective, he was progressing. They didn’t obviously see that but they put the cat among the pigeons. Are you saying that we should perhaps ask for a tracheostomy?
Patrik: Look, there is no question that you shouldn’t ask. Let me ask you a few other things. Number one, have you had any formal meetings with them? How do you get updates? Is that in a formal way, is it in an informal … How do you get updates? How do you know what they are proposing?
Bob: Every now and again, they’ll have something called a family meeting. But generally, it’s along the lines of “We’ve done this, we’ve done that,” not the response we would have expected, a response by now. There hasn’t been a response, therefore we are not going anywhere. They say at about 30 percent, much less than 30 percent. They didn’t give a percentage. Even if they said 30 percent, it’s because my father has been 30 percent the liver transplant he was much less than that.
Recommended and additional information about family meetings:
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Patrik: Sure. Has he been off sedation at all? Do you know what I mean by sedation?
Bob: Yes, he has. They’ve reduced it to the bare minimum now. He was becoming quite lucid. When I was mentioning about how long he’s been rolling his eyes.
Patrik: Do you know what he’s on?
Bob: He’s had an…
Patrik: Do you know what he’s getting?
Bob: What part?
Patrik: For sedation.
Bob: In terms of quantity?
Patrik: No, the medication itself.
Bob: I’m not sure but I…
Patrik: Have you heard of Propofol?
Bob: I’ve heard it mentioned but maybe on YouTube, I’m not sure.
Patrik: Right, Midazolam?
Bob: It could be either. I’m not sure which one he’s on at the moment.
Patrik: That’s okay. At the moment, what is your biggest stumbling block at the moment? You want one thing but they can’t give it to you. Where’s your biggest stumbling block at the moment?
Bob: I think our major stumbling block is they can’t appreciate that he is a weakened man although obviously… They can’t see that he’s fighting.
Patrik: You’re dropping out a bit. You’re dropping out a bit, sorry.
Patrik: That’s much better.
Bob: Sorry. They cannot acknowledge that he’s a person and he needs to get more time than perhaps… They’re just pushing and pushing him. As I said, I think it’s a bed count in the back.
Patrik: Right, very much so. You feel like you’re being pushed towards end of life. Is that how you feel?
Bob: Absolutely yes.
Patrik: You feel like you are being pushed towards end of life and you feel like you’re not given a say. You feel like there is more they could do, and you feel like they think they’re running out of time. Would that describe it accurately?
Bob: Yes. They’re not giving him enough time. We’re not prepared for this.
Patrik: Have you asked for more time?
Bob: Yes, we always ask for more time.
Patrik: What is the response?
Bob: Their response is “Well.” They don’t really formally say very much. They try to put you into a corner, so that you give them a time. Honestly, that’s a difficult question to answer.
Patrik: Okay. Here is how I can help. I would never say to a client, “But I can save the life.” That would be foolish of me to make that claim. What I can help you with is I can help you buy time. That’s where I can definitely help you with, and often that’s all that’s needed. If your dad gets time and also basic care and treatment, then he has the time he will need to either recover or not. We don’t know what the future holds but your dad will need time.
You’re absolutely right, they’re doing the bed count. They know they’ve got 10 other patients knocking at that bed. We know all of that. There is also the perception of what quality of life should be looking like for some people, in the future. I’m sure they would have mentioned terms like quality of life.
Find information about an advocate for the patient and demands in the ICU:
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Patrik: There’s all of that. We know the positioning of the ICUs. I’ve seen it over and over again.
The other things, you have an understanding about treatment and so forth. For example, what I would want to know just by what you’ve described to me, one thing that I can see, yes he’s not coming round yet but you’re telling me on the other hand, he might still be sedated. He won’t be coming round if he’s still sedated, so I would really like to talk to a doctor and ask them. No surprise, he’s not coming round because he’s still sedated. Right? And also asking questions like “Why is he not having a tracheostomy? Just because you think he may not recover or is it because you think he may not recover in a timeframe that’s convenient for you?”
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Bob: A tracheostomy is a fairly major operation?
Patrik: No, that’s what they might tell you but it’s not. In this day and age, they can do a tracheostomy in half an hour in ICU. He doesn’t need to go to surgery. Nine times out of ten in this day and age, they can do it in ICU, at the bedside, quick and easy. One out of ten probably has to go to because, it could be a risky tracheostomy, but nine times out of ten it’s done in ICU, quick and easy.
From my perspective, what we offer in situations like that, how I can help really is number one, getting more information either from yourself or from the doctors directly, what they are exactly doing. The devil is in the detail. You don’t know what you don’t know, and you’ve realised that already that that’s the biggest challenge for families in intensive care. You don’t know what you don’t know, and it’s never what you’ve been told. It’s how you react that matters. They can tell you anything, but what’s important in a situation like that is how you react.
Now, the missing link as far as I can see is you haven’t … No disrespect to your efforts. You haven’t asked the right questions yet. What do I mean by that? I really want to know, have they done all the testing why he’s not waking up? What medications is he on? Are some of those medications potentially holding him down from waking up? Why are they not dialyzing him? Even asking questions like “What’s your bed status like?” You’ve got to spell it out with them.
I tell you what I believe needs to happen next. Number one, I can set you up with a series of questions and you can go back to them and ask them the series of questions. Then number one, they will know that you’re talking to somebody who understands ICU inside out, or number two, we can spend half an hour and we’ll go through some questions, and then we spend half an hour talking to the doctors directly. We set up a phone meeting with them and then we’ll get to the bottom of things. That’s how I can help.
Patrik: At this point in time, there are so many unknowns for you. Because I know the industry so well, I can lay it all out for you and say “This is what’s happening there. Have they done this, have they done that” and really make sure he will get the best that they can give him in there.
Bob: That sounds good. What would you want me to do?
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
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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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