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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 another question in this series of questions from my client Veronica and the question last week was PART 10 of
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 Steven, which are excerpts from 1:1 phone and email counselling and consulting sessions with me and the question this week is
CASE STUDY: MY DAD’S BEEN IN ICU FOR SEVERAL WEEKS WITH ARDS, CARDIAC ARREST AND DIALYSIS! HE’S GOT A TRACHEOSTOMY, DOES HE HAVE A REALISTIC CHANCE OF SURVIVAL? (PART 3)
You can also find previous counselling and consulting sessions with Steven here
Steven’s father has been in ICU for several weeks now after he suffered from severe ARDS(lung failure), had a cardiac arrest during his time in ICU and now he’s in multiple organ failure with the lungs failing, the heart failing and the kidneys failing. Steven is obviously extremely concerned and he wants to know what decision he should be making about continuing life support for his Dad.
We discuss his Dad’s future quality of life if he survives his stay in ICU and we also look at what’s best for his Dad by looking at the level of suffering his Dad is currently going through.
Steven’s Dad remains in ICU and is very critical. In this week’s 1:1 counselling and consulting session, we discuss the outcomes of a meeting we’ve had with one of the ICU consultants.
We look at ECMO and lung transplant and if both are options for Steven’s Dad.
Overall it doesn’t look good for Steven’s Dad and we discuss in detail if and how he should prepare for an end of life situation.
Steven: Hi Patrick it’s Steven.
Patrik: Hi Steven how are you.
Steven: OK. OK what are your thoughts?
Patrik: What are your thoughts on the call? Yeah look I was pleasantly surprised by their attitude. Look I think they are genuine in what’s happening. I don’t feel like they are putting you under pressure in terms of making a quick decision right now. OK.
So I was pleasantly surprised that you know that they’re telling you about the situation they are sharing their concerns. And you know I don’t feel like you know that they’re not telling you “OK well we need to make a decision by tomorrow morning or by tomorrow evening or 5:00pm.” You know they haven’t put a time frame on it. I keep coming back to the Fentanyl. I do believe 300 micrograms an hour. It’s massive. And I really don’t know why they keep continuing with that much Fentanyl. I mean keeping him comfortable is important.
Steven: But they said it’s because the primary reason is because he’s overbreathing the ventilator and he’s desaturating.
Patrik: Yeah I understand that. I understand that. So just to give you just some numbers to compare for example a patient after cardiac surgery.
Patrik: Right after a Patient had open heart surgery they might have about repaired a valve or they might have a bypass grafts. You know Patients come back after surgery and they have their chest cracked open which is really painful.
They often come back on let’s say up to 50 micrograms an hour out of Fentanyl and that’s often for less than 48 hours. And that is really painful. Right. And I just go like 300 micrograms of Fentanyl. That’s just not right anyway. And especially, especially since the end of January. I’m sure he hasn’t been on 300 micrograms an hour for one for the last three weeks but it looks like it’s gradually gone up.
Steven: It’s done. It is. Yeah it was 200 to 300 300 micrograms per hour.
Patrik: You know how do they want to assess your Dad’s neurological condition. If he’s on all that Fentanyl?
Steven: It’s almost impossible?
Patrik: You know that that would be one concern in terms of that management. Now what I did like as I said I mean I’ve been participating in many many of those family meetings. And I did I really did get a good feel about their general attitude. They seemed to be you know that they are concerned. I mean what was your feeling? They didn’t seem to be overtly negative people. They’re not they’re not positive but I wouldn’t say I mean what what’s your feeling. Would you say they are overtly negative?
Steven: No they are realistic, very realistic. They are very real.
Patrik: Yeah, yeah the odds probably are against your Dad by everything that you know that you’ve described. And even what’s been discussed in the meeting. The question really is how much how much do you want to put him through and how much you know do you think your Dad would be prepared to put up with you know and again it comes down to do you think he’s suffering?
Steven: I don’t know. Hard to tell the we have the ability to communicate with him whether to blink or even to ask him. It is suffering the doctor you heard what the doctor said. All right.
Patrik: Yeah. Yeah. And it would be very hard for anyone to find out where they are suffering or not. On 300 mcg of Fentanyl. Now again I keep coming back to that you know. And even if they took Fentanyl off tomorrow or today. You know he would probably go through withdrawal which is why probably his breathing rate goes up when they stop the Fentanyl because there’s probably a component of withdrawal off the Fentanyl, which is a strong opiate or pain killer.
Steven: Right.
Patrik: Withdrawal from Fentanyl. The neurologist have they spoken to you in person?
Steven: We spoke to them once in person a while back when he when they did the MRI and it revealed a few strokes. This was before the cardiac arrest. And so we spoke to him then and then we’re going to speak to him again right. OK.
Patrik: OK. But what you wanted you wanted to say something before I asked about the Neurologist.
Steven: Yeah let. Maybe you and me do a call with the Intensivist that we can talk to him about the Fentanyl and the other aspect. Yeah. That’s a good idea. I think he is a very nice doctor and if you and I could be attending another call with him that would be great.
Patrik: Yeah. Look I said to you I really liked his attitude. I mean I get a good feeling of you know where they’re at. You know they sounded really reasonable. I was expecting for them to put you under pressure in terms of withdrawal of treatment and I didn’t, I didn’t feel that at all.
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Steven: I didn’t feel that either.
Patrik: No. No. Did you come to a conclusion what your dad would want if he was able to make a decision for himself if he wasn’t in an induced coma and sedated?
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Steven: No. It’s a very tough, tough answer.
Patrik: And if I may ask.
Steven: Do you think you know, based on what you heard, do you think there’s any hope for my Dad to… you know kind of get out of this ICU putting aside quality of life. What do you think from what you have heard?
Patrik: I mean what he has said is you know what I’ve heard is what he has said and you know maybe he can move out of ICU while still on the ventilator. Now what I would like to know though is what options do they have to move him out of ICU on a ventilator. You know have they given you some options out outside of ICU yet?
Steven: No because his ventilator setting are too high right now. Right. He won’t be able to survive outside of ICU. They want him to slowly get better with his lungs and then they would be able to do something.
Patrik: I don’t think the odds are in your Dad’s favour from all the information the ICU consultant shared. I certainly don’t want to be negative by any means… But I do think your Dad is in a “real” and not in a “perceived” end of life situation.
I don’t think there is much more they can do. They could have looked at ECMO and the potential of a lung transplant earlier on, but I think it’s too late now, your Dad is too weak as far as I can tell.
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I do believe preparing for the worst in the next few days is probably the best thing to do. Another thing you can do is to look at taking your Dad home with a service like INTENSIVE CARE AT HOME where he could have palliative care at home. It makes sense to me and it’s probably something your Dad and your family want, rather than have home pass away in a sterile ICU.
Patrik: Yeah. Here is another thing that I can see. I mean we’ve asked about it more you’ve asked about the potential for a lung transplant. I was expecting those answers but you know it’s still good to ask you know to get a feel for OK what’s their response? You know where do they sit with all of that. Look one thing given that he’s still off Vasopressors/Inotropes is a sign that his heart again is coping with whatever that’s happening. I would still like to get a better idea of the MRI results. You know in terms of how bad is the stroke or how bad have the strokes been. I mean they’re talking about plural. I mean they’re talking about multiple strokes. That’s my understanding anyway.
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Steven: Yeah. There were four strokes.
Patrik: Right. Right. So given that he can’t come off the ventilator at this point in time. My question to you and probably to the rest of your family and if I may ask Who are the decision makers in your family? Is that your mother for example?
Steven: Yeah. My mother my brother younger brother and younger sister.
Patrik: OK. Was that your younger sister who was in the meeting earlier?
Steven: Yes yes.
Patrik: Right. Right. You know what’s their… And even though you and the rest of your family are not clinical. It doesn’t matter but the question really comes back to again what do you think your dad would decide given current circumstances?
Steven: It’s hard to say if he is in pain or maybe if he needs something else.
Patrik: Yeah. Have you and your dad or your mother and your dad or one of your siblings and your dad, have you ever discussed a worst case scenario?
Steven: He has a medical directive. I have to believe. So I have to read that. But I believe it says something where it’s an incurable disease. He then wants maximum pain medication and comfort and he doesn’t want to be resuscitated if it is truly truly an incurable situation. The problem here is this is not stage 4 cancer.
Patrik: Yeah absolutely right. It’s not stage 4 cancer. I tell you what. I think it’s really working against your dad in this situation. If your if your dad was in this situation with all the things that are happening at the moment and he had been in ICU for less than a week. OK. I would say “hey, you know, we know his age”. But you know he’s only been in ICU for a week maybe we should try ECMO. So maybe we should be looking at a lung transplant. However the case for ECMO and for a lung transplant is very much against him given the time he already spent in ICU. That is definitely working against him you know. Anybody who has been in ICU… So in your dad’s case now since the end of January and looking at any advanced treatment options and advanced treatment options would include ECMO and a lung transplant. You know he would be too weak for all of that.
Steven: Yeah.
Patrik: You know he’s been… he’s been through too much.
Steven: Yeah. Let’s do this Patrik… Let me see if he’s available for a phone call either later today… either today or sometime tomorrow. And you know we we’ll take it from there.
Patrik: Absolutely!
Steven: And then we could talk to him but we could talk to him at 10am tomorrow.
Patrik: Yes. Yeah absolutely. I can tell you today I think I mentioned that to you this week at some stage I’m doing one shift a week in ICU still and that is Tuesday Saturday for me. But you know that that’s a time when it’s night time in in New York so I’ll be probably unavailable from what is that. Hang on I’ll tell you from 10:00 p.m. your time until 6:00 a.m. the next day so you know that that wouldn’t be a time where you would have a meeting probably anyway you know about any other time any of the time I sort of that I’ll be I’ll be available.
Let me find availability. And that a good thing. Yes. OK. You get back to me. OK. OK. OK. Thank you.
Steven: Great, talk to you then, thank you! Bye bye!
Patrik: Bye for now!
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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!