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 16)
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 17)
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, PART 15 and PART 16 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!
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…
Patrik: Yeah, yeah, yeah. The part that you need to feel stronger,
that you need to feel sane to deal with this is very important. You sound very level headed. You steered the ship with regarding you but even that you’ve done a crash course in intensive care in the last week.
Emma: I have, I thank God for you. I thank God for you. You’re like wow!
Patrik: You’re very welcome. That’s what I’m here for but you’ve
done a crash course in all of this. You’ve absorbed all of this new information. They know by now that you’re talking to someone who knows the ins and outs of Intensive Care including how to manage the politics. It puts you in a very good position to negotiate with them on a different level but at the same time your sanity and your physical and your mental health is going to be very important going forward. How is your brother-in-law coping? Is he coping?
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Emma: He’s coping but he’s on… this week is the first week that I’ve seen that he looks like he’s actually coping with it in a good way.
Patrik: Yeah, yeah.
Emma: Yeah.
Patrik: Because he can see things are improving.
Emma: Yes.
Patrik: Right and he can see that again, they’re telling everybody she’s dying. She won’t be alive without the balloon pump (IABP), and they want to stop treatment. Going from that to now; she’s talking, she’s breathing, and she is potentially a candidate for the surgery. Those are two different worlds.
Emma: Wow yes, I can see it over his face and stuff. He gets anxious too because he wanna know about the
surgery. If they’re not gonna to do it, he wanna know would he find somebody who can do it. So, he’s really anxious.
Patrik: Yeah of course but also keep in mind depending on what they say ,now you might also have even more bargaining power to say the more she improves, and if they still don’t wanna do it then you’d be in a much better position to look elsewhere .Okay but I would really hope that given that she is
stronger that they give her this chance.
Emma: Yeah, hopefully they just go ahead and do it.
Patrik: Yes look, on the one hand she needs a second chance on the other hand… how can I describe this to you. Patients in intensive care who are waiting for open heart surgery… no, no let me… open heart surgery in general is relatively high risk surgery and patients who are in intensive care who are compromised already, waiting for open heart surgery are even more at risk. There’s no doubt about that. Right? I appreciate that they
don’t just say, ‘Your sister is improving and we’ll do open heart surgery tomorrow.’ I do appreciate that too. Right?
Emma: Oh okay.
Patrik: She needs to be in the best possible shape.
Emma: Okay.
Patrik: That’s why I keep coming back to the physical therapy. Look, if they told you today, ‘Oh, we’re doing open heart surgery tomorrow,’ I would say, ‘ Hang on second. Hang on…
Emma: Okay, good. Okay.
Patrik: I appreciate that they’re not rushing into it but I don’t appreciate that they don’t talk to
you.
Emma: Oh, okay.
Patrik: Look, for them, they can’t predict the next 48 hours either but what they need to do is they need to maximise her strength where I believe the physical therapy is so important and also the trying to get her to eat and drink. All of that.
Emma: Okay.
Patrik: Yeah, try and get a meeting. Try and engage them.
Emma: Okay
Patrik: And tell them, ‘ We want to know what the next steps are. We want to know your plans.’ And get it from the horse’s mouth. When I say meeting,
that could be in a formal way, that could be at the bedside in an informal way but you need to get something from them.
Emma: Okay.
Patrik: What I really want to hear from them is, ‘Yes, we’ll try and do the physical therapy in the next 5 days. We want her off the vasopressors/inotropes and she will be a candidate for surgery.’ We want to hear something.
Emma: Okay.
Patrik: We want to hear
something concrete and also you wanna hear, God forbid, if they say, ‘We’re not planning to do surgery,’ you want to know why.
Emma: Okay.
Patrik: Has there in the last few days… has there ever been a talk about cardiac rehab? Has that ever been mentioned?
Emma: They haven’t
mentioned that.
Patrik: So you’ve been talking to intensive care and what about… you know there’s a cardiac surgeon, what about a cardiologist?
Emma: I haven’t spoken with them but the ICU doctor said that they were the ones that were waiting to see what they would say and they were… I guess all the doctors… he said something about a committee.
They were meeting and we’ve been waiting on that since Tuesday.
Patrik: Yeah, yeah.
Emma: And the nurse told me yesterday… the nurse was the one who told me that they want her off the vasopressor (inotropes).
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Patrik: Yeah and again that
makes sense to a degree but as long as she stays on dialysis and there will be aggressively removing fluids, she will at least need Norepinephrine to a degree. Do you know whether she’s on a fluid restriction?
Emma: She was on a, I think, 1500 fluid restriction.
Patrik: How long ago was that?
Emma: That’s been probably about two weeks ago but I can ask them.
Patrik: I think you should because if she’s still on a fluid restriction, it
could be very difficult of getting the Norepinephrine off. Many patients on dialysis in heart
failure are on a fluid restriction. So, you may remember that from when we spoke earlier that I always kept saying they need to keep her dry.
Emma: Yes
Patrik: Alright, and the main reason for them is you don’t want to fluid overload a weak heart. Okay, so that’s one of the main reasons. What I can see; why they were doing it, you want to find
out whether she’s still on the fluid restriction and see what they say. If she’s still on the fluid restriction… that could well be still needed but it would also be one of the reasons why she probably would have issues of getting the Norepinephrine off.
Emma: Oh, okay.
Patrik: You’ve talked about, in your email, about the ejection fraction 40%.
44% according to the nurse and they’ve done another echo (ultrasound)?
Emma: Yes, she told me they did an echo on the 19th.
Patrik: On the 19th. So that would
have been on Tuesday… just remind me, on Tuesday was she off the ventilator then or not?
Emma: Yes, she had just got off the ventilator on Monday.
Patrik: Okay. So, okay how does that work? The goal … on Tuesday she would have still been on five of the Dobutamine on Tuesday. She would have been on the Norepinephrine and she would have been on the Vasopressin and the Norepinephrine. Her ejection fraction now would have probably changed again.
So, the… sorry just let me collect my thoughts for one sec… yes, so, the goal is to get the Dobutamine
off whilst not losing any ejection fraction. That is the goal.
Emma: Okay.
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Patrik: Okay, so, the Dobutamine is increasing the pump function (contractility) of the heart and the pump function of the heart determines the ejection fraction. Right?
Emma: Okay.
Patrik: The goal is to wean done the Dobutamine and maintain or even improve the ejection fraction. Right?
Emma: Okay.
Patrik: That’s the goal. Now given that they’ve weaned down the Dobutamine, it’s almost time to do the next echo.
Emma: Okay.
Patrik: Because now they’ve changed some of the medications and they need to see, ‘Okay, are we heading in the right direction. Can we safely wean done the
Dobutamine?’
Emma: Okay.
Patrik: Those are the next steps. The next steps are; ask them for their plan, ask them for surgery, ask them whether they can safely wean the Dobutamine and do an ultrasound and check her ejection fraction, focus on the physical therapy to get her strength back and that needs to happen whether they do surgery or not. It needs to happen. That’s the only way forward, strengthening her.
Emma: Okay.
Patrik: And nutrition. Nutrition means eating and drinking, taking water in
and don’t forget to ask about the fluid restriction.
Emma: Okay.
Patrik: Those are the next steps.
Emma: Okay.
Patrik: Your brother-in-law, is he there pretty much all
day?
Emma: Yes he is.
Patrik: Okay, that’s good. That’s good for her and are the family members still coming and going?
Emma: Yes.
Patrik: Good. Whilst I always advocate, the same for your
brother-in-law, he needs to look after himself but especially since she’s awake and especially since she’s sort of in limbo. And you’re talking about your brother-in-law being more positive and she needs to feel that.
Emma: Okay.
Patrik: She needs to feel that people are more positive and I’m sure she does. If you would see her, you would have had
a different expression on your face now than you had a week ago.
Emma: That’s true.
Patrik: Right?
Emma: Right.
Patrik: So, she will recognise that. Your fight has gone long way and your positive
nature has gone a long way and your level-headedness has gone a long way and I’m sure that’s all part of the recovery. Staying positive is just so important and you are. I can hear it but it’s going to be important going forward and it’s also going to be important in case there are any set-backs.
Emma: Okay.
Patrik: Right?
Emma: Right.
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Patrik: Not to have setbacks discourage you or your brother or your sister. Those setbacks may happen. She’s gone a long way but the ICU is a high-risk environment. That’s a given too.
Emma: Okay.
Patrik: How do you feel like about the doctors in general? Do you feel like they are still positive? What is your feeling about them and also the nursing staff?
Emma: The nursing staff… it’s like now when I ask them the questions you’re giving me, it’s like they get very nervous. Yesterday
she was trying to tell me she was doing good and that’s all she was going to tell me so I thought…
Patrik: Yeah, yeah, yeah.
Emma: They get really nervous. The doctors is kinda hard because they’re so invasive. They said that they would let us know more on Tuesday but its Friday now.
Patrik: Yeah.
Emma: And we still don’t know anything. Its like, they’re avoiding…
Patrik: Yeah, yeah, yeah.
Emma: Maybe they’re just busy. I don’t know.
Patrik: Look, it’s probably a combination of them being busy, them wanting to wait and see what happens… on the one hand, I’m not… I’ve sone that before that over and over again that your best plans… you might not be able to implement your best plans because the patient is not ready. Maybe they are busy, maybe they have other priorities for now, maybe other emergencies. I get that but at the same time they may be avoiding and they may wait and see.
Gently, push them and gently engage them if you can and if you feel like they’re not engaging, ask for a meeting.
Emma: Okay.
Look out for the next consulting and advocacy session with Emma next week!
