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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 answered another question from one of my clients and the question last week was
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 Emma, which are excerpts from 1:1 phone and email counselling and consulting sessions with me and the question this week is
My sister is in ICU on a balloon pump and ventilated after cardiac surgery! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART 8)
You can also access PART1, PART2, PART 3, PART 4, PART 5, PART 6 and PART 7 by clicking on the links
In this series of 1:1 phone and email consulting and advocacy sessions with my client Emma you’ll get real in-depth knowledge about cardiac failure in Intensive Care, how it works, the treatment and therapy options, how to wean somebody off the ventilator and most importantly, you’ll discover how to not take “no” for an answer.
You’ll witness how I can lead Emma in going from the Intensive Care team trying to coerce her and her family to agree to a “withdrawal of treatment” as being “in the best interest” for her sister to challenge that and the Intensive Care team having to do everything within their power to safe her sister’s life and turning the dynamics upside down in Emma’s favour.
That’s what happens when you have the right advice from a professional who knows Intensive Care inside out and who knows how to manage the dynamics and who can take the fear away of being intimidated by the Intensive Care team!
Enjoy this consulting and advocacy session!
Patrik: Hi Emma, how are you?
Emma: Hi. Good. How are you?
Patrik: I’m really good, thank you. Do you want me to call you back? I can call you back. I’ll take this call, okay? Just give me one sec.
Emma: Okay.
Patrik: Thanks. Just give me one sec.
Emma: Okay.
Patrik: Hi Emma, it’s Patrik again. How are you?
Emma: I’m good. How are you?
Patrik: I’m really good, thank you. How was your day?
Emma: My sister had a good day. It looks like the whole week. They didn’t call us for a family meeting.
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Patrik: Did they?
Emma: The nurses are saying that … no, they didn’t call.
Patrik: They didn’t, okay.
Emma: The nurses were saying that her blood pressure’s better than they have seen it. Respiratory came in and said today something about one of the numbers need to be between 8 and 10 instead of 12. She’s all spontaneous. She’s breathing on her own. If she stays like that for 24 hours, then they’re going to try and extubate her tomorrow.
Patrik: Right. I do believe that the 8 or 10 they’re talking about is the pressure support on the ventilator. I’m pretty certain that’s what they’re talking about. That’s okay. That’s good. I’ve got your email just a few minutes ago. You can confirm? You think she’s definitely making slow but steady progress?
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Emma: I really think so. To me, I’m not an expert but it looks like she’s getting better. It looks like to me.
Patrik: I know they’ve been talking about extubation for a few days now and it hasn’t happened yet but I can tell you it often is that way. You have this goal. You want to take somebody off the ventilator but it often doesn’t happen on the day you wanted it to because there’s a few things that need to align before you can actually do it.
The worse thing that could happen is that they take your sister off the ventilator and then need to put it back on her within 24 or 48 hours. That would be worse than actually waiting for the right time.
Emma: Okay.
Patrik: Right. If you take somebody off the ventilator too early and you have to put them back on within 24 or 48 hours, it could often be a bigger setback rather than waiting for another day and maybe sometimes even a few days to make sure patients are really ready to come off the ventilator.
Emma: Okay.
Patrik: Yes, I want her off the ventilator just like you do but the right time is going to be important.
Emma: Okay.
Patrik: Are they still using the dexmedetomidine? Do you know whether they are still using that?
Emma: No, she’s completely off that. She doesn’t have any sedation at all now.
Patrik: Would you say she’s more alert?
Emma: A lot more. She’s interacting and she’s even trying to talk.
Patrik: That’s good.
Emma: Of course, she’s got a tracheostomy.
Patrik: Is she trying to pull out her breathing tube?
Emma: She hasn’t tried. I asked her what she’s going to do it then she said no.
Patrik: Okay.
Emma: She wouldn’t do it. They haven’t tried it.
Patrik: Is that because she’s too weak? Or do you think she doesn’t try because she knows it could be dangerous for her?
Emma: I know that she’s weak. She’s able to actually move her hands and she got them under her chin. I thought she was pulling. I said, “Are going to try and pull that out?” She said no. I explained to her, “You’ve been going through this a long time and we’re here to support you. Please don’t do that to the family.”
I know she’s weak. I don’t know if she has the strength to pull but she puts her hand under her chin all the time but she said she wasn’t going to pull it.
Patrik: That’s good. That’s good. You got to take her word on that for now. That’s all you can do. The nurses will watch her. They don’t want her to self extubate. They don’t want that. Any more talk about the surgery? Any more talk about that?
Emma: No, the doctors haven’t said anything. We just framed that they changed their mind because it looks like she’s getting better. The nurses are saying that she’s making progress. I asked them about doing another echo and the doctor told me she would but they haven’t done it yet. I don’t know what they’re waiting on to do that.
Patrik: They might wait for the breathing tube to come out. The reality is when the breathing tube comes out, some of the numbers will probably change including the norepinephrine and the vasopressin.
I really hope that once she comes off the ventilator that the vasopressin requirements will go down because the pressure in her lungs will change when the ventilator comes off. That will also change some of the dynamics in her heart.
Hopefully, they can take her off the ventilator tomorrow and then, hopefully, the norepinephrine and the vasopressin comes down. Hopefully, the dobutamine will come down as well.
Again, we’re back to take one day at a time. The next goal is to get her off the ventilator. That’s the next goal.
Emma: Okay.
Patrik: With tomorrow being Sunday, have noticed that on a Monday the team is changing? Some of the doctors are changing on a Monday.
Emma: They are. It looks like on Mondays they do change out.
Patrik: There will be new people to deal with on Monday, are there?
Emma: Yes. It’s the same people but it looks like every week. Maybe they work different weeks or something.
Patrik: Yes, they would. It’s the same people probably you have come across before. They just have some time off and now they’re back on schedule, that sort of thing.
Because some people will be more easy and others will be more difficult to deal with, depending on their personalities and what not. Just something to keep in mind with. Just something to keep in mind as this goes on.
Hopefully, she will be off the ventilator tomorrow and that would take care of one problem.
Emma: Okay.
Patrik: Let’s wait. The longer this goes on, it’ll be good for you to have an idea who’s who, when are they working, what’s their point of view of the situation, all of that.
I think she’s a lot closer to coming of the ventilator. I’m pretty sure you have to refer to this number. It needs to come down to 8 or 10. As I said, I’m pretty sure that’s the pressure support.
I do remember when you sent the picture of the ventilator, the pressure support was actually 12. It wouldn’t surprise me that they want to bring it down to eight before they think they can take her off the ventilator. That’s okay.
Anything else? Has there been anything else happening, you think?
Emma: No, the only thing is with the drugs that they’ve been changing is like the vasopressin. Not the vasopressin, the norepinephrine. She went up to eight then down to five. She was at three. They intubated, she was at four. That’s been changing.
Patrik: I’m not surprised.
Emma: That’s it.
Patrik: I’m not surprised and also not too worried about it at this stage because that number changes quite quickly. If you would, an example. As you’ve seen in my email yesterday, I still try and do one shift a week in ICU. I was doing a shift this afternoon. Next to the patient that I looked after was a patient on 50 of norepinephrine, 50, 5-0.
Emma: Can you go that high? Can they get that high?
Patrik: Probably I’ve seen it up to 100 at times, but not very often.
Emma: Whoa.
Patrik: Yeah. What I’m saying is this patient was on up to 50 of norepinephrine. By the time I left on my shift yesterday, the patient was down to 10. The norepinephrine going up and down by a huge amount is nothing. I’ve seen it for many years.
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If she goes from four to eight and then to five and back to eight, in fact, that’s nothing that I haven’t seen. I’m not worried about the norepinephrine.
I’m worried about the vasopressin. That needs to come off. That would be number one. That will come off before the norepinephrine. The vasopressin needs to come off and eventually, the dobutamine needs to be weaned down. I’m way more worried about the vasopressin and the dobutamine. Let’s wait.
I really do believe once she’s off the ventilator that will, sort of, give everybody a good idea how well she’s coping and whether she is … let’s just say in the best case scenario, let’s just say they do want to do a surgery. It’ll still be dependent on whether they think, after all of these, she can cope with the surgery.
Emma: Okay.
Patrik: They may well change their mind. They might say, “Yup, we’ll do surgery in a few days time.” They may well do that but it also depends whether they think that your sister has the strength to go through this. It is high risk surgery.
Again, Emma, we’re back to we need to take one day at a time. We’re back to that. There’s no point in looking too far into the future at the moment. They also will not make a decision about surgery on the weekend. They won’t make a decision about that on the weekend.
Emma: Okay.
Patrik: I do remember when we spoke last, I think I did mention the goal is to get her one day at a time now. I think you contacted me last Sunday for the first time, so we’re nearly a week in.
She’s gone a long way from them wanting to stop treatment and potentially let her die up to now, hopefully, being off the ventilator in the next 24 hours. That’s a lot of progress there.
Okay. They’ve changed their attitude. They’ve changed their tone. Do you still think they are more positive? Is that your impression?
Emma: Yes, they are. They are a lot more cooperative. Now, my niece, she’s kind of loose and I don’t have any say so but she’s been calling them and bugging them about doing the surgery. They told us that they weren’t going to do it. I have no control over her actions. I don’t know how that’s going to be.
Patrik: Just remind me. She’s got aortic stenosis, doesn’t she?
Emma: Yes.
Patrik: What else? She has a chronic kidney failure. Is there anything else? Does she have COPD?
Emma: No COPD.
Patrik: Anything else that she has besides the aortic stenosis and the chronic kidney failure? Is there anything else?
Emma: With the doctors, I don’t know if they are being honest enough because the first time, they said the only reason why they weren’t going to do the surgery is because she has a kidney failure and then she has CAP.
The second time the doctor said in the meeting … after we had the meeting, I come and stood up to them, he said something about her mitral valve and three vessels. I told them, I said nobody ever said that. Initially they said that her mitral valve was okay.
The third time we met, the doctor said that because of the quality of her life, that’s why they’ve made that decision. I don’t know which one. That’s why I wanted to get the chart so I can look at what’s going on with that.
The only thing that she’s had, she has CHF(=Chronic heart failure). She’s had chronic kidney failure. She’s a diabetic but not on insulin, dependent diabetic. I would say borderline because she wasn’t taking any insulin or taking any medication. The biggest issue she had was heart failure and the dialysis.
Patrik: Just remind me. Didn’t you say she had a mitral valve replacement or repair in the past? Isn’t that what you said?
Emma: She had that in ’09. That’s when she lost her kidney function.
Patrik: Really?
Emma: They said that was okay. Initially, they said it was working well.
Patrik: She would’ve lost her kidney function probably while she was in the ICU then?
Emma: Yes, back in ’09.
Patrik: Back in ’09, okay. How long ago was that when he talked about not wanting to do the aortic valve replacement because of her quality of life? How long ago was that? That was last week, wasn’t it?
Emma: That was last week.
Patrik: Is this the same surgeon who did the mitral valve replacement? Do you know?
Emma: Yes, he wanted to do the surgery. He was willing to take the chance and do the surgery on her. He wanted to do it but then the person over him said no. That’s who accepted her to the hospital.
Patrik: Are they the same doctors from 2009? Do you know?
Emma: Yes, the one who did her surgery here. I don’t know about this hooligan, I’m not sure about the big guy. I know the surgeon who accepted her is the same one.
Patrik: I see, I see. Look, every step she can make towards getting off the ventilator will help. Obviously, as you said, you have no control what your niece is doing. Let’s see how things are unfolding.
As I’ve said, it’s good to have a strategy when talking to them, that you and probably your niece all speak with the same voice so that you’re not contradicting yourself. That would help. Let’s wait until she is off the ventilator and then we can take this next step.
As I’ve said to you before, if your niece, for example, wants to talk to me – if you, your niece and myself want to get on a phone call, we can do that. It’s no problem.
Emma: Okay.
Patrik: Let’s keep looking at the positive. She’s coming a lot closer to getting off the ventilator. According to what they’re telling you, they need to wean the 12 down to eight, to 10 or 8. Again, I think that’s the pressure support.
The next thing is she’s off the sedation. That’s good as well. You think she’s more awake. Those are all positive. They are signs that she is coming closer to getting off the ventilator. They’re all signs for that.
Emma: Okay.
Patrik: Anything else they mentioned?
Emma: That’s it. They say she’s doing good. The nurses are the ones who said it.
Patrik: It’s coming from the nurses, isn’t it? It’s not coming from the doctors.
Emma: No, it was the nurses that said that. They’re just saying what they saw.
Patrik: Sure. Have you spoken to a doctor at all in the last 48 hours?
Emma: No, no doctor because on Friday, I didn’t see a doctor. They came but they didn’t rounds or didn’t come in and approach. Of course today, I didn’t see a doctor.
Patrik: That’s okay. That’s okay. Look, I think for now, all you can do is wait, wait, wait for the next 24 hours to come. Again, for whatever reason she’s not getting off the ventilator tomorrow, I still don’t believe there’s any need to panic. If it’s going to be delayed by another 24 hours, that’s fine as long as the only thing, the only issue they are having according to what they’re saying is they need to bring the number down from 12 to eight. If that’s the only thing they are waiting for, then that’s good because it means she’s not far away.
Emma: Okay.
Patrik: Just wait. I’ll just quickly bring up the pictures again that you sent me from the ventilator a few days back. Just give me one sec. Just give me one sec.
Emma: It may be big for it because that one was ASV and now it says SP, spontaneous.
Patrik: Even better. Even better. They’ve changed the mode. That’s even better. Pressure support on the picture you sent me was 12. If she’s now in spontaneous, that’s a better mode than the ASV. That’s a mode where she’s doing more work herself. That’s positive. The only missing link is the pressure support going from 12 to eight. Hopefully, she can achieve it. If for whatever reason she can’t tomorrow, send me a picture of the ventilator again.
Emma: Okay.Patrik: Let’s wait for that tomorrow. Did you have anything else at this stage?
Emma: I’m grateful to you. I’m just taking it one day at a time. I really feel good about this week because it seems like she’s progressing. I feel really good about this week. I think I’ve learned to keep taking it one day at a time because I want to get ahead and it’s stressful. It’s stressful to think ahead.
Patrik: That’s right, it is. You got to look at the last week, number one was to make sure they are not stopping treatment. That was the first goal. We achieved that. The next step now is to get her off the ventilator. Again, this all has taken nearly a week but there’s definitely been some progress. The next goal is to get her off the ventilator and then see what they suggest next. That’s all we can do for now.
Emma: Okay.
Patrik: I’ll wait to hear from you when you need me next.
Emma: Okay. Thank you so much. I’m grateful.
Patrik: You’re very welcome. Have a good night and have a good rest.
Emma: Okay, thank you.
Patrik: You’re welcome.
Emma: Bye.
Patrik: Bye.
Look out for PART 9 of the 1:1 counselling, consulting and advocacy session with Emma in the next few days!
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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In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!
Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- 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
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- 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!