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 shared a free webinar live recording where I answered your questions
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer the next question from one of my clients Veronica, which are excerpts from phone and email counselling and consulting sessions with me and the question this week is
My Dad (71) is in ICU with stage 4 lung cancer & stroke, he’s on the ventilator now and in an induced coma, what are his chances of survival? (PART 8)
You can also find previous counselling and consulting sessions with Veronica here
In today’s 1:1 phone counselling and consulting session Veronica and I talk more about whether a tracheostomy would be the right thing to do for her Dad or not and if it could prolong her Dad’s life or not.
We also talk about how a tracheostomy is actually being done and how long it takes.
I also educate Veronica on her rights on not agreeing to an NFR/DNR or to a withdrawal of treatment if she doesn’t want to.
Patrik: So, a tracheostomy has a lot of advantages. The question really is as well, that if they are correct in their assessment that nature will take its course if your dad comes off the ventilator, right? The question comes up, well what would your dad want? Would your dad want a tracheostomy and maybe go home? Or, would your dad rather take out that breathing tube and let nature take it’s course. And, we even don’t know whether that’s going to be correct or not. It’s just an assumption they’re making.
Veronica: And, that’s exactly what the doctor said himself. He said, “Don’t know. He could breathe.” He doesn’t think he’ll improve at all because of the damage in the lungs, but he said he’s not worried about anything else. Definitely just the lungs and yeah.
Patrik: Yeah, and look this is another thing, which is why I’ve asked about the heart and the kidneys. We are dealing, at the moment, your dad is dealing with single organ failure. Alright? So, it’s a single organ that’s failing at the moment, which are the lungs. Now, there’s a lot of patients in ICU have more than one organ failing, right? And, that’s why I keep asking about the heart and I keep asking about the lungs. You know, if there’s more than one organ failing, a lot cases are being presented as oh, your family member is now dealing with multi-organ failure, and that leaves a pretty grim outlook. And, you know, that’s debatable still.
But, at the same time in your dad’s case we’re talking about single organ failure.
Patrik: Right? So, the question then is okay well the heart, okay there has been issues last week, but nobody seems to talk about that or seems to be worried about that anymore at this point in time.
Patrik: You keep asking about the kidneys. The kidneys seem to work. There’s no talk about the liver, you know. He has a minor stroke last week, but he’s responding. You know, so the brain is an organ too, but it’s not failing.
Patrik: Right? So, we are dealing with single organ failure and not with multi-organ failure. So, then the question is, okay, well treatment options are limited for that single organ, for the lungs. Well, you know, again it’s probably a question you should also put forward to the ICU consultant tomorrow then about the Flolan (Epoprostenol), the nitric oxide, and the things that I mentioned and get his view.
Veronica: Yes, yes.
Patrik: Okay, get his view and then really have a plan of what you and your family want if taking out the breathing tube is going to fail, whether you want that breathing tube back in or not. And, it also depends, and why I think you should be clear on that, it will probably also depend on how well your dad will be going after the breathing tube comes out.
Veronica: That’s right, exactly. And, that’s what nobody knows right now.
Patrik: That’s right. But, I still think you should be relatively clear tomorrow what you want, because otherwise nobody brought up the NFR(=Not for resuscitation), have they?
Veronica: Not at all.
Patrik: Okay, okay. Because, I’ll tell you, we have discussed this last week, haven’t we, the NFR?
Veronica: Yes, we did.
Patrik: Yes, because I think … So, basically what they’re saying is when they take the breathing tube out and they don’t want to put it back in, in essence, that’s an NFR. It means Not For Resuscitation, because putting a breathing tube back in is basically a form of resuscitation.
Patrik: Right? So, if you decide that’s what going to happen, or not happen, then in essence you’re authorising them to “NFR”(=Not for resuscitation) your dad, which might be okay as long as you feel supportive of that.
- THE 5 THINGS YOU NEED TO KNOW IF THE MEDICAL TEAM IN INTENSIVE CARE WANTS TO“LIMIT TREATMENT”, WANTS TO “WITHDRAW TREATMENT”, “WITHDRAW LIFE SUPPORT” OR WANTS TO ISSUE A “DNR” (DO NOT RESUSCITATE) OR “NFR” (NOT FOR RESUSCITATION) ORDER FOR YOUR CRITICALLY ILL LOVED ONE!
Veronica: Yes. We need to know what would be done as the next step if he can’t breathe without it.
Patrik: That’s right. That’s exactly right. And, a lot of it will be dependent on how your dad will respond once they take the breathing tube out.
Veronica: Exactly, I’m worried that he’s gonna be distressed because I can see already when they have to clear some of the-
Veronica: … the secretions, or when they have to change over one of the little sutures on the end, he gets very distressed, yeah. When they have to clear the fluids in his mouth and stuff…
Veronica: Oh, definitely.
Patrik: Terrible, right? So, a tracheostomy is just so much easier to tolerate. Right? But then, you got to be-
Veronica: How do they put the tracheostomy in?
Patrik: Yup, so what they would probably do is in most ICUs nowadays, they do the tracheostomy in the unit. Not, no surgery, it’s usually done by the ICU consultant. For an experienced consultant it takes 30 to 45 minutes to put a tracheostomy in. For some patients, I’d say nine out of ten tracheostomies nowadays get done in ICU by the ICU consultant, and one out of ten tracheostomies probably still require surgery. And, that is mainly if patients have a short neck, right, or there’s something else going on maybe with the neck where they think it’s unsafe to do a tracheostomy in the unit. But, if, you know, your dad is 60 kilos or 70 kilos let’s just say, there’s a pretty high chance he doesn’t have a short neck.
Veronica: No, he doesn’t. He’s a thin man.
Patrik: Right, yeah. So, you know, it’s mainly for patients who are overweight really, you know?
Patrik: So, if that’s an experienced ICU consultant, he can do it in the unit and as I said it’ll be done in less than an hour.
Patrik: Basically what they do is they poke in a hole in the neck, that’s what it is. They will put your Dad asleep with some sedation like Propofol(Diprivan) and some Fentanyl for pain, they will give him some muscle relaxants like Rocuronium and then they’ll do a percutaneous tracheostomy.
Veronica: Yeah, that’s right, in the trachea.
Patrik: That’s right.
Veronica: Okay, and the suction and everything would also require a nurse to always do that for him like they’re doing now?
Patrik: But, the good news about a tracheostomy, you know, so unlike on the breathing tube they can take off the sedation pretty much as soon as they’ve done the tracheostomy, because a tracheotomy’s not painful.
Veronica: No. It’d be really good if I could convince them to do that.
Patrik: But again, you’ve also got to keep in mind that, and again it also depends in the next few days how awake your dad’s going to be and whether he’s going to be in a position to make those decisions if he can. I don’t know whether he can or he can’t, but that’s why I think you need to know as much about it as possible. You know, and just the ICU consultant saying he’s not a candidate, has he given you any reasons why?
Veronica: Well, he said he needs to wait until the oncologist and the other doctors look at the new scan, but he said it doesn’t look good enough to do it because it’s deteriorated that much. He believes we’re just prolonging the inevitable, basically.
Patrik: Okay, but at the same time, isn’t he saying that it could be the inflammation, it could be the infection, or it could be the cancer. So, he doesn’t know. So, let’s just say in the best case scenario this is an infection, and they can treat the infection with antibiotics. That’s the best case scenario. You know, let’s just say that we’re dealing with the best case scenario. Well, taking the breathing tube out and letting nature take its course with the potentially treatable cause, we don’t know that at this stage. And, he’s admitting that himself.
Veronica: And, because he’s already had the antibiotics the whole time, and because they’re testing the mucus every time they do the suction, and he’s not responding to anything, it’s making it really hard.
Patrik: Yeah, it’s making it hard. And, that is, given that they’re doing that, that he’s not responding, there is a relatively high chance that there is a much bigger thing going on, which could either be the cancer growth or it could be the inflammation. But again, you can’t point a finger to it.
Veronica: Well, he said the whole lower left side, the whole lower left lobe of his lung is-
Veronica: Yeah, he said it’s congested with the clot.
Patrik: Yeah, sure.
Veronica: And, that in itself is gonna make it really difficult for him to breathe.
Patrik: With the clot, have they considered putting a chest drain in? Do you know if that was a point of discussion?
Veronica: No, he didn’t say anything cause he’s only just, he just said that they’ve increased the blood thinner.
Patrik: Yup, nothing. Because you know, sometimes what happens, if he has a blood clot sitting underneath his left lobe, depending on how much blood is sitting there. You know, sometimes they might even be able to drain that with a chest drain, but I don’t have enough information to say that they definitely could do that. But, the question is, is it just a small blood clot that’s blocking areas of his lungs, fine. Or, is it an accumulation of more blood that’s being clotted, I don’t know. And, that’s often when it’s an accumulation of maybe a few hundred mills of blood that has been clotted, and they can often evacuate that with a chest drain. But, I don’t know-
Veronica: He didn’t even give us any options for it. He was just very concerned that it’s taking up so much space.
Patrik: Taking up much space, okay. Well, if that’s the case, if it’s taking up much space there’s a good chance that there’s a blood formation like that they potentially could drain out. I don’t know.
Veronica: I guess, he didn’t know enough as yet, because they only just got the results back, you see. Because, they scanned him around 2:30, 3:00, and I got there about 4:00.
Patrik: And, you’ve spoken to him in person?
Patrik: Right, and do you think he’s genuine? Do you think he’s got a good attitude?
Veronica: Yes, I do. He seemed the most caring, knowledgeable, and he has, I sort of inquired about how long he’s been there, and he’s the most longest standing intensivist that they’ve had there. And, he’s been there the longest out of all of them, and all the staff said he is so good. He is just so, so good. They all like him and yeah. They really respect what he has to say.
- “PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE!”
Patrik: Okay, no that’s good. And, you know, if he’s sort of caring then-
Veronica: Very caring.
Patrik: Then, I also believe that, I mean I’m a big believer that everything in life is negotiable, you know. And, depending on what you might come up with, again, he might be saying he’s not a candidate just for tracheostomy, but on the other hand he hasn’t really educated you about what a tracheostomy could potentially do.
Veronica: No, he didn’t. He didn’t at all. But, it doesn’t mean that can’t be discussed tomorrow.
Patrik: That’s right. Of course not.
Veronica: So, that’s good.
Veronica: And, I’m very happy that I spoke to you, because I do need to know what the next steps will be if he can’t breathe without the tube, what will happen. Because, I don’t want to take that chance away for him to be resuscitated.
Patrik: Yeah. Yes, and again resuscitation, you know, a lot of people think it’s only when the heart stops. But, the reality is that if they take the breathing tube out and your dad can’t breathe, putting a breathing tube back in is a form or resuscitation too.
Veronica: And, that’s why they had to do it last time, because he was so distressed.
Patrik: And, he has talked about taking the breathing tube out and potentially sending him to a ward. Well, what ward would they have for him? Do they have a respiratory ward?
Veronica: He said first thing’s first, let’s get the tube out, let’s start getting him sitting up, getting him to breathe on his own, getting him to cough, getting him to be able to get the stuff out himself and sitting in a chair next to the bed. And then from there, we’ll look at moving him up into a ward and then from there he said I’ve got special masks and things he could in home, because we don’t know how long he’s got.
Patrik: That’s right, that’s right. Okay, well how would you feel about that? That’s probably the best-case scenario at this point in time. How do you feel about that?
Veronica: I was very happy with that, because I think even if dad’s voice box, like he said, will be affected for a little while. Dad will be able to write. Dad will be able to communicate and let us know what he wants, as well.
Patrik: Yeah, absolutely.
Veronica: And, he’ll have a bit more control and he will be able to accept hopefully what’s been going on and yeah. I think it’s good.
Patrik: And, you see this is the thing, while a tracheostomy can prolong life, I’m not saying indefinitely but for much longer, a lot of patients with a tracheostomy don’t feel in control. That’s a disadvantage. You know, because they can’t talk.
Patrik: Right? So, you got to be aware of advantages and disadvantages, right?
Patrik: But, what I will do, once we come off this call, we have a number of articles on our website when you should do a tracheostomy, when you shouldn’t do a tracheostomy. So, I will send you some articles so you get a bit of a feel, what are the advantages, what are the disadvantages, you know? The other thing that I can see, especially what we’re doing in home care as well, from my perspective is taking your dad home on a mask, for example, you need some ventilation with the mask. That can all be done, but the same can be done with a tracheostomy at home. But, the question is how does your dad feel about either of those options?
Veronica: Exactly. So, he will need to be informed.
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)
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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