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 frequently asked question from our readers and the question in the last episode was
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 15)
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 continue answering 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 16)
You can also access previous episodes in this series of questions here PART1, PART2, PART 3, PART 4, PART 5, PART 6, PART 7, PART 8, PART 9, PART 10, PART 11, PART 12, PART 13, PART 14 and PART 15 by clicking on the relevant 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 and get strong advocacy.
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 and use it to your advantage when you have a family member in Intensive Care!
Emma: Hello.
Patrik: Hi Emma, it’s Patrik.
Emma: Hi.
Patrik: How are things?
Emma: Hello.
Patrik: Yeah, can you hear me?
Emma: I can hear you now.
Patrik: How have things been? I mean, the last email that I had from you was pretty positive, I think, overall.
Emma: Oh, good.
Patrik: Is that how you feel as well?
Emma: Well, I’m pretty much depending on you because I don’t
know…
Patrik: What it means, yeah.
Emma: She looks good. She looks good.
Patrik: That’s good. You know it’s one thing to look at the numbers and it’s one thing to look the monitor but I mean the most important thing to me is, really what you say about your sister because
you know her.
Emma: Okay.
Patrik: Right. So, the numbers are important but the other thing that’s really important is, she’s obviously off the ventilator.
Emma: Okay.
Patrik: She’s talking?
Emma: Yes.
Patrik: She’s talking to you. Right, and she’s making sense?
Emma: Yes, she’s making sense but she knows who she is, her birthday, she knows she’s in the hospital but she can get that mixed up with… she thinks she’s at UTMB one day and the next day she says she’s at Methodist, which she’s at Methodist.
Patrik: Okay that’s fine. That’s nothing unusual, right. The main….
Emma: Right.
Patrik: Because after you induce a coma, patients are very confused, okay and when I say
very confused I mean… that’s minor. What you’re describing is minor confusion.
Emma: Okay.
Related article/video:
Patrik: Would she, besides that, could she tell you what day of the week it is?
Could she tell you the date and the months and the year? Can she do that?
Emma: I didn’t ask her that. Two days ago the nurse said she thought that Ronald Reagan was president but she knew that she at Methodist. She knew her name and what her birthday. So, I’ll ask her today when I get off work and go up there.
Patrik: Yeah, I
mean, it’s not the end of the world if she mixes up the date and the president. It’s not the end of the world. The side effects from the medication, from the induced coma and the sedation, they do do that, sort of confusion and also keep in mind, she has a disturbed day and night rhythm because of noise, because of sleeping 24 hours a day in a induced coma. There’s no natural daylight in there I would imagine or minimal natural daylight. Is there natural daylight in there?
Emma: Well, she’s got… in her room there is a small window.
Patrik: Yeah, but…
Emma: So…
Patrik: so not much?
Emma: Not
much.
Related articles/videos:
Patrik: Okay, right but look the most important thing is she is off the ventilator, she’s talking and she’s breathing. That’s the most important thing for now.
Emma: Okay.
Patrik: I’m very pleased to hear that they managed the wean down the Dobutamine, I
mean, it’s not off but it’s down… because what’s important for you to understand about the Dobutamine… when the heart pumps, okay? The Dobutamine is increasing the pump function of the heart. That’s basically what the Dobutamine is doing, okay. The Norepinephrine is mainly increasing the blood pressure and is she still on the dialysis?
Emma: Yes, she’s on the continuous dialysis?
Recommended:
Patrik: Okay and do you know
how much fluid they are removing there?
Emma: They didn’t tell me. I’ll ask.
Patrik: Just ask because depending on how aggressive they’re still removing, her blood pressure would be down. She may not necessarily get off the Norepinephrine in the next few days and I think it really depends on how aggressive they will be with fluid removal. What are they saying in terms of surgery? The latest that you’ve sent through was, you said that they’re very vague. Have you spoken to them again? Any more news there?
Emma: They’re still saying that they want her off the vasopressors and they’re not telling us anything else.
Patrik: Yeah, and look, I agree to an extent that she needs to be off the pressers before she has surgery. Generally speaking, I’d say yes. What are they doing?
Are they doing physical therapy? Are they doing that now?
Emma: They were supposed to start physical therapy only yesterday. So, I’ll find out only today if they
actually started it.
Patrik: So, you see the issue with the surgery, it’s high risk surgery, there’s no doubt about that. Patients need to be in the best shape they can be, right and that’s why I believe physical therapy is so important. So, since she’s been off the ventilator she has not been out of bed yet, as far as you are aware?
Emma: She
has not been out bed yet.
Recommended:
Patrik: Right, okay. Is she starting to eat and drink?
Emma: They still have a tube in her nose and she’s getting this white liquid so…
Patrik: Okay, so, she’s not taking any… not even a sip of water? Nothing?
Emma: Well, they said that a couple of days ago she asked for ice and they gave her ice.
Patrik: Okay and have you seen that yourself? Have you seen them giving ice?
Emma: No, the nurse told that so…
Patrik: Look, even though she has the tube,
I can’t see why they can’t start feeding her. The sooner she can go back to what I would refer to as ‘normal’ the better
Emma: Okay.
Patrik: The more normality the better. Being critically ill in intensive care is a massive life event, right. No matter what the next steps are, the closer they can get her to normality the better it is. They need
to get her out of bed. They need to sit her in a chair, need to do all the breathing exercises. To a degree I’m very pleased that she’s off the ventilator without the physical therapy. That’s an achievement. To a degree that’s great because it means that she is strong but on the other hand, it’s like anything in life, if you don’t practise you’re not getting better at it. In a situation like this, the physical therapy is important. With the surgery, who are you talking to? Are you still talking
only to intensive care and not the cardiac surgeons?
Emma: Yeah, that’s the only one that I’ve been able to get a hold to. The doctor that was working in the ICU is the only doctor that has been there and they keep saying they’ll come in tomorrow, and they’re going to have a family meeting and talk about it. They’re hard to get a hold to.
Patrik:
I actually think, now is the time where you or your brother-in-law need to ask for a family meeting and see how they react. I’ll tell you why. Number one; you want to engage them, and number two; as you might have seen in the beginning stages of all of this, meetings… when they ask for a family meeting, in my experience, eight times out of ten it’s to deliver bad news, okay. I guess, you want to be, in this case now… I think you want to ask for a family meeting and find out the next steps and see how they react and also try and hold them accountable.
What do I mean by that? Try hold them accountable? Look, they… as you know, they have been telling you your sister will not
survive without the intra-aortic ballon pump (IABP), right?
Related:
Emma: Mm-hmm (affirmative)
Patrik: Well, she’s proven them
terribly wrong, which is great, okay. That’s number one. Number two; they have been trying to convince you to stop treatment, okay. Both of their predictions or both of their requests have been terribly wrong but could have potentially cost your sister’s life, okay. Your sister is here with you. She’s talking and she is now… she’s very close to becoming a candidate for potential life-saving surgery, okay. I wouldn’t… at this stage given that she’s come such a long way, I would really now on your
end ask for a meeting and see what they say.
Emma: Okay.
Patrik: I think now is the time. Also, keeping in mind that, no matter what they say, building her up for strength. Whether she is going for surgery or not, building her up for strength is going to be the next step no matter what they about surgery or not.
Emma: Okay.
Patrik: You really want to hear a plan from them. Do you think…
Emma: Okay.
Patrik: Do you think they have been… they have been strategic in terms of, getting her off the ventilator and they worked her up for that.
It pretty much was, so I thought of… Almost was predicting it and could see it happening. That’s good.
On the other hand, you really want to hear it from the horse’s mouth now and see what their strategy is.
Recommended:
Emma: Okay
Patrik:
How can she go? That’s the question you really want answered. How can she go from theocratically, not surviving without the intra-aortic ballon pump (IABP), now to becoming a candidate for open heart surgery within 10 days? How could that happen? How terribly… what’s the word… they’ve been terrible at reading the play.
Emma: Mm-hmm
(affirmative)
Patrik: Haven’t they? I mean, Seriously?
Emma: Yeah, They have. They have
Patrik: So you really wanna know number one; why have they been so bad at reading the play and number two; now that she’s proven everybody wrong, what are the next
steps?
Emma: Okay.
Patrik: Now is the time to do that because now you have way more bargaining power than you had before.
Emma: Okay.
Patrik: Look, I totally get how exhausted you must be. I get it and
I can’t stress how important it is to look after yourself. You’re back at work and you’re trying to steer your sister’s recovery but you and need to look after yourself.
Emma: Okay
Patrik: Because you at the end of the day, you have no idea how long this is going on for. Just remind me, you are travelling 40 minutes one way to the
hospital?
Emma: 40 minutes to an hour just depending on the traffic.
Patrik: Oh my goodness. So, given that you’re back at work, you’re basically going to the hospital after work.
Emma: My boss calls me in the office and then he told me, ‘I need to get my mind together,’
cause I’m kind of… yesterday I actually rested.
Patrik : Right, is your boss supportive?
Emma: Very supportive. Very supportive.
Patrik: Okay. Okay. What do you do for a living, if I may ask?
Emma: I don’t know how to describe it. I go check… and scheduling appointments and following up.
Patrik: So, admin work. Would that be fair to describe it?
Emma: Yes.
Patrik: Right, okay. I would imagine with your
scheduling, it’s a fairly stressful job too isn’t it?
Emma: Oh my God, it is like taking care of a baby…
Look out for the next consulting and advocacy session with Emma next week!
