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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 3)
In the last counselling and consulting session with Emma we were discussing how Emma can keep her sister alive on life support even though the ICU doctors were adamant to stop treatment, remove life support and let her sister die.
In today’s 1:1 phone consulting and advocacy session with me look into how Emma can further change the dynamics into her and her family’s favour, without feeling intimidated by the Intensive Care team. I’m going to share many gold nuggets in how to use simple strategies in order to get things her sister’s way.
Patrik: Your three points are: Keeping your sister alive on life support; Referring to the law about withdrawal of treatment and Investigate why they’re not doing the surgery because I still haven’t had a medical reason for that and investigate ECMO. That’s all you’ve got to do for now.
Emma: Okay. Okay.
Patrik: Does that-
Emma: Like tomorrow, huh?
Patrik: Does that make sense so far?
Emma: It does and I’m glad that we getting it a little bit at a time because we … So that’s what I’ll focus on with them. But like tomorrow, they make rounds like with the nurses and the patients at 10 and they involve the family, so what should I do at that time of the meeting with the family? With the rounds.
Patrik: Ah, the round, just listen what they’ve got to say-
Emma: Uh-huh (affirmative).
Patrik: … and you know, maybe even, how would you feel if you weren’t there for the round? How would you feel?
Emma: I’m going to take your advice. If you tell me, don’t be there for the rounds then I won’t go there.
Patrik: Well, tell me, have you been there for the rounds in the last few days?
Emma: I have. I’ve went and the only thing the nurse does is like, just tell them what she’s done and they don’t really, she just tells them the medications, the vital signs, and they don’t go in depth with it. They don’t … I don’t get anything out of it other than what I’ve already got from the nurse for looking and seeing.
Patrik: Yeah, yeah. Yeah. Okay, okay. In essence, you’re not getting many news.
Emma: Right.
Patrik: Okay, so from that perspective, if you’re not getting anything that you don’t know already that the nurse is telling you, I wouldn’t go there. Because you’re exposing yourself to them trying to get you into a room. You know your agenda. Your agenda for now is crystal clear. You have three or four points that you have to stick with.
From that perspective, you going to the rounds or not, is not making any difference because you’ve got your agenda for now mapped out.
Emma: Okay.
Patrik: Right? That’s why I would minimise contact with them for now, with the doctors, in particular, because they’ve got their agenda, you’ve got yours. You made it very clear what you want and keep asking for the withdrawal of treatment policy, keep the pressure on to them. Keep the pressure on to them.
Emma: Right. Okay.
Patrik: Right? And do not budge from that. And do not go into a meet … If they are asking for a meeting, you ask for the meeting agenda.
Emma: Okay. Okay.
Patrik: You’ve got to turn it all upside down.
Emma: Okay. Okay. Okay, I will do that. So with my sister, like with the life support and stuff, how does that work from her clinically with the life support? How do it work since they took that pump out and she’s on the life support, how, I mean, I don’t understand the mechanics of that. How does that work? What do I expect from her clinically?
Patrik: Yeah. So your sister, at the moment, she’s still on the ventilator, isn’t she?
Emma: Yeah, and they said … We asked them … I did what you said and asked them not to remove the life support so they said something about waking her up tomorrow…
Patrik: That’s good. That’s good. That’s a good sign. I wasn’t expecting for them to wake her up. That’s a good sign. That’s a good sign.
Emma: Okay.
Patrik: So, in terms of life support, so your sister’s on the ventilator. That’s considered life support, okay. And your sister is on the vasopressors/inotropes, okay. That’s considered life support as well, okay.
Emma: Okay.
Patrik: Remind me, has your sister been on dialysis since she’s been there?
Emma: Yes she is. She do dialysis. And they have her doing, they called it CRT or CRRT-
Patrik: Yeah, CRRT. Yeah, CRRT. Yeah
That’s okay, your sister was a dialysis patient at home as well, wasn’t she?
Emma: Yes, yes, she is.
Patrik: That’s fine. Okay, so have they referred to organ failure?
Emma: No they haven’t said anything, I just know that her kidneys wasn’t working-
Patrik: Yeah, that’s okay.
Related article/video:
Emma: … They haven’t said anything else about organ failure.
Patrik: Okay, so at the moment, at the moment, she basically has three organs failing. Number one is the lungs, because she’s on the ventilator. Number two is the heart, because she’s on or she was on the balloon pump/IABP and she’s now on the vasopressor/inotropes, that’s a sign that the heart is compromised.
Emma: Uh-huh.
Patrik: And number three, the kidneys, but the kidneys are long standing. The kidneys, you knew about this before.
Emma: The kidneys, yes we did.
Patrik: Right, so you can take the kidneys almost out of the equation. The main issue at the moment is the heart and the lungs. The lungs is mainly caused by the heart so that’s why it’s so important to look at the vasopressors/inotropes, can they wean that down. You know, if they can’t wean it down, is ECMO another option? Is a heart transplant another option? You know, those are the questions that they need to answer and I still … When you’re at the bedside next time, Emma, can you give me a call and I will have a talk to the nurse so I can find out more?
Emma: Okay.
Patrik: Do you think that’s possible?
Emma: Oh, yes it is. I will.
Patrik: Yeah, yeah, I think that’s the best because I can ask a series of questions and within five minutes I’ll find out what’s exactly happening. You have a good understanding. You’ve given me a lot of information already, but I would like to know more … I would like to know a few more details.
Specifically why they are refusing to operate. I haven’t figured that out yet.
Emma: Okay, well yesterday, that doctor said because she has severe aortic stenosis.
Patrik: Severe?
Emma: Uh-huh.
Patrik: Severe aortic stenosis is that what they said?
Emma: That’s what they said.
Patrik: Right, right. Okay. Hmm. Okay. I still, yeah, okay. I can’t see why … Have they talked about calcification?
Emma: No they haven’t.
Patrik: They haven’t.
Emma: They haven’t talked about calcification.
Patrik: Okay. That’s alright. Okay, well, I think the next step is when you’re at the bedside, you know, you put me on to the nurse. I think that would help.
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Emma: Okay, I will do that.
Patrik: And also, if for whatever reason, there is a family meeting where you think you do want to go and they give you the agenda and whatnot, just give me a call and if there is a family meeting, I’m very happy to call in over the phone. Right. There’s no problem around that.
Emma: Oh, good. Okay.
Patrik: There’s no drama around that.
Emma: Okay.
Patrik: And also with the seven day option that you’ve purchased, you can use that at your own pace. It’s not seven consecutive days. You can use that at your own pace when you need it.
Emma: Okay, I will do that.
Patrik: Okay, so you are in full control there, you know, when you need me.
Emma: Okay, okay. And I appreciate you for helping me. At least I thank God that she’s made it to today, because I take it a step at a time.
Emma: Correct. It’s too frustrating to look too far into the future because we have not crystal ball. We have no crystal ball. But I see it as a very positive sign that they’re trying to wean down the vasopressors/inotropes and that they are trying to wake her up from the induced coma tomorrow. I see that as a very positive sign.
Related articles/videos:
Emma: Okay. Okay. I was like … I was kinda, you know, nervous about them weaning her down and stuff because I hope they’re not weaning her down to allow her to die.
Patrik: No, no, no, no. I can tell you that if she’s waking up there’s a very good chance … If she’s waking up appropriately, there’s a very good chance they can wean the vasopressors/inotropes off even more, if she can tolerate the waking up. That’s-
Emma: Okay, and then when they …
Patrik: Yeah, go on.
Emma: They need to do it, you said?
Patrik: Yeah, they need to do it to find out how she’s coping. They need to find out how she’s coping.
Emma: And then like … And in a case like that, they, they told us they’re not going to do the surgery. They’re not going to do anything so she would just be stuck there?
Patrik: Well on the one hand, I would try to avoid a meeting. On the other hand, once we know she can wake up then you might have to ask for a meeting, but let’s … I think that’s much better you asking for meeting than them asking for a meeting. Because you want to know, number one why they are refusing to do surgery? Who is saying that? Is it the ICU or the cardiac surgeon? Who’s saying that?
Emma: It’s the cardiac surgeon and the ICU. Both. The doctors are sticking together, you know. And I see some discrepancies in what they’re saying because at times they told us that if my sister would work with physical therapy and start walking, then they would do the surgery and then the same doctor, he said that no, he never intended on doing the surgery at all because the ICU doctor, the head of the department came in and he … I explained to him. He was like, well they wasn’t going to that. They admit as team with her quality of life. So I’m like why would they move that … Because they purposely moved the pump from her groin area to her chest area so she could get up and start working this physical therapy so she can build up for the surgery.
But now they’re saying none of that is appropriate.
Patrik: Right. You know, as I said, just wait for now. Just give it another 24 hours.
Emma: Okay.
Patrik: And tomorrow, you know, when you’re at the bedside, give me a call. I will try and talk to the nurse and get more information and the more information we have then we can ask for a meeting on your terms. Not on their terms.
Emma: Okay.
Look out for PART 4 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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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
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- 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!