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 treagainst our wishes and let her die, what should we do? (PART 5)
In today’s 1:1 consulting and advocacy session Emma and I keep talking about how to get her sister through the week end. Emma’s sister remains critical, but at least the Intensive Care team has stopped talking about withdrawing treatment and basically letting her sister die. It shows that our strategies are working and today we dive deeper in what needs to happen to get her sister out of Intensive Care alive.
Patrik: Hi, Emma. It’s Patrik speaking here from Intensive Care Hotline. How are you?
Emma: I’m good. How are you?
Patrik: Very good, thank you. So, I just thought I’ll give you a quick call, rather than writing you back in the email. Have you got a minute?
Emma: Oh yes, I do.
Patrik: Right. So, what’s the deal with the ethics? I’m not … have you … have there been people present there from the ethics committee or what’s the deal there?
Emma: Well, we … I think I’ve told you about the meetings there with ethics present …
Emma: … a couple of days ago or three days ago, but I think they were just doing … looks like they were doing their rounds in or something.
Emma: And the lady from ethics has seen me there, one of the ladies from the ethics and the other one came over and they were talking and asking me, you know, how was things going, so …
Patrik: Right, right.
Emma: I think they just happened to see me.
Patrik: Okay. So you think they’re also looking after other families or patients, this is not isolated to your sister?
Emma: No, I think … No I don’t think it was just isolated to my sister.
Emma: I hope not.
Patrik: Got it. I mean have you seen them interacting with other patients and families too?
Emma: Well, it looked like maybe they were doing their rounds or something because…
Patrik: Okay, okay. Well, look, I don’t know their roles from what you’re describing, but I would just ignore for now, you know? I would just ignore. Because, like we discussed yesterday, just keep going back to what you want. Don’t worry about what they’re trying to do, just focus on what you want.
Patrik: Just keep focusing on what you want, no matter who they bring in, no matter what perceived pressure they put on you, don’t worry about it. Just keep focusing on what you want. Right?
Patrik: Because that’s going to be very important because they are used to walking all over people. I hate to say, but that’s what they … People don’t question. 99% of families in ICU do not question. So, you know, to a degree I like when you write that they are feeling uneasy about your presence here. That’s a compliment to you. That’s a compliment to you.
Patrik: If they feel uneasy about your presence, that means you are doing your job, you are questioning, and they are not used to it. That’s the reality.
Patrik: Right? So you need to take that as a compliment and not as a threat. You cannot be threatened by them. You have to stay strong and you have to be very clear and concise with what you want.
Patrik: And that’s going to be your strategy at this point going forward.
Emma: Okay, okay.
Patrik: I would still keep your interactions to a minimum. And if you do interact with them stay very clear on what you want and keep repeating that until it sinks in on their end. Because what they do at the moment is they apply this sort of psychological pressure that they apply to every other family that works, right? But you have so much insights already, it’s not going to work with you.
Patrik: So then you say in the email that they’re trying to strengthen your sister’s heart and they keep weaning down the blood pressure medications(inotropes/vasopressors), which is good. I like that you request the hospital records. So you’re saying that in order to release the records, she has to be present for you to view your sister’s record? Well, just ask for copies. You want to take those records away. Just ask for copies.
Patrik: You know? Don’t let them give access to the medical records while they are present and let you have a look at them in the hospital and then they close the records again, don’t do that. Just ask for copies or printout or whatever and again, if you are doing that ask for a deadline. Tell them, “Look, by whenever you choose, by tomorrow at 5pm, I want all the records of this hospital admission.” Just, you know, don’t negotiate with them, just tell them.
Patrik: Matter of fact, give me copies of the medical records by 5pm tomorrow, or whatever time frame you choose. Right?
Patrik: You really have to be very clear and concise with them, you know? Very brief and matter-of-fact, and that’s what I want and I’m not budging on that.
Patrik: You see, they are doing what they’ve been doing for years, for decades, some of those people. I can’t repeat that often enough. 99% of families in ICU get walked all over. They don’t question, they don’t know what to look for, you know? You have too many incites already right? So whatever they’re trying to do, it’s not going to work with you anyway. And the other thing on that is they’re trying to play their games. That’s why I say don’t interact with them. Only interact with them on what you want.
Patrik: Right? So clinically they are removing blood pressure medication(inotropes/vasopressors). I like that, cuz that seems to be the second day in a row that they’re weaning that. Now yesterday you mentioned they were trying to wake up your sister today. How did that go?
Emma: They didn’t, now they’re saying they’re gonna wait before they wake her up.
Patrik: Say again? Can you-
Emma: They didn’t wake her up. They just said they’d see about waking her up tomorrow.
Patrik: Okay. That’s fine, that’s fine. Have they given you a reason why there’s a delay?
Emma: They said they wanna go down on the blood pressure-
Emma: … medications a little more cuz sometimes when she … Okay, so that’s right?
Patrik: Okay, that makes sense, that makes sense. And you know the blood pressure medications(inotropes/vasopressors), as long as they keep weaning them even though they might still be high, that’s a valid reason to delay waking her up as long as the keep working towards that. So, you are also saying, just give me one sec … You asked why they keep saying they wanna strengthen your sister’s heart. Well, the reality is that your sister’s heart is weak. Now I can’t remember, and I might have asked you this before, have you heard of the term ‘ejection fraction’? Have you heard of that term?
Emma: Yes, they told me that it was like 20 to 25%.
Patrik: How long ago was that when the told you that?
Emma: They told me that like two days ago. Right after you talked to me about it-
Emma: I asked them.
Patrik: Okay, okay. So, the blood pressure medication is strengthening your sister’s heart, right? That’s the effect hat blood pressure medicine has to a degree. Now, you know, that can only go so hard. It’s best if the heart can recover on its own, and can get some strength back that’s intrinsic, basically from the heart itself. And that might take a few days sometimes even weeks. You know, that’s also where ECMO comes in. Because ECMO gives the heart the ability to recover, right? So do you know whether your sister had an ultrasound or an Echoe/Ultrasound of the heart in the last 48 hours?
Emma: No I didn’t eat that information.
Patrik: Okay. Do you know whether she had an ultrasound of the heart in the past few says?
Emma: I know when they were getting ready to take her pump out, they was doin an x-ray or something of her heart … is what they old.
Patrik: Right. Okay. That’s something you can ask very safely when you’re back in there, ask them whether she’s had an ultrasound of the heart. You can ask that very safely. And if she’s had one, what’s the result? Okay?
Emma: Okay so, ultrasound of the heart and what’s the result?
Patrik: Yep. And also ask what’s the ejection fraction … I will send you that in an email when we come off. I will send you that in an email when we come off the call.
Emma: Okay. Okay.
Patrik: And also ask them what blood pressure medication(inotropes/vasopressors) is she on? If you can tell me that, that would be very helpful.
Patrik: And I will send you a series of questions that would be very helpful to me to understand what’s happening. So blood pressure medications, what she’s on … and also what sedation she’s on. Again I will send you all of that so you can ask that.
Patrik: But I do like that they continue to wean down the blood pressure meds(inotropes/vasopressors). That’s very important.
Patrik: Would you say overall … They way I understand the situation at the moment … A few days back, they seemed to be very adamant in terminating life supports, even 48 hours ago. All you’ve heard from them is your sister’s basically dying and “we’re going to withdraw life support”. That was the message you got from them 48 hrs ago, wasn’t it?
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Patrik: Would you say that they have softened a little bit? Would you say that?
Emma: It seems like they have softened, especially when now they’re saying they’re trying to get the heart stronger. They still haven’t said anything, so …
Patrik: No, no. Of course not. A little bit difficult for anyone to know what’s happening long term. At this stage, we’re still at the point where the goal is to get your sister through the next 24 hours. That’s still the goal, hasn’t changed yet.
Emma: Okay. Okay.
Patrik: That’s the challenge in ICU, we always wanna speed up recovery but it’s a marathon not a sprint.
Patrik: At this stage we’re still trying to get your sister through the next 24 hours. You know at this stage I would say the goal is to get her through the weekend.
Patrik: Because nobody can look too far ahead.
Patrik: The goal at the moment is to make sure they stop talking about withdrawing treatment. That’s one goal.
Patrik: And it looks like for now, they have stopped talking about that, haven’t they?
Emma: Yeah it do look like that.
Patrik: Yeah, yeah. So that’s a good sign. They are talking about strengthening your sister’s heart. That’s a very different conversation to have compared to withdrawing treatment and in essence letting her die.
Patrik: So that’s a good sign.
Patrik: They’re baby steps, don’t get me wrong. They’re baby steps, but they’re steps.
Patrik: Right? So that’s all good. And at this stage still be very brief and concise with them. Don’t enter into any arguments. Just tell them what you want and what you expect and leave it there.
Patrik: Just remind me, how long has your sister been in the ICU there? How long has it been?
Emma: She’s been there for almost seven weeks.
Patrik: Seven weeks, okay. So what’s the schedule around doctors changing? You see different doctors every week? Or some different doctors every week?
Emma: It look like it’s every week there’s a different doctor.
Emma: They change, but they’re the same doctors but they change every week.
Patrik: Yeah. Same doctors, you see some of the doctors every few weeks basically.
Patrik: Right. Have you noticed any differences in their approaches? Are they all on the same page? What’s the sort of gist you’re getting there?
Emma: Well, initially the one that I met with that clearly told the truth, he seemed to be rooting for my sister to have the surgery but after that he changed his mind. He said that he never intended to do the surgery, so that puts him on the same idea with the doctors. This doctor today, he seemed like he was a little more open. He seems a little different. I can’t say if it’s good or bad, but at least he was talking about strengthening the heart so … that’s all the difference I see in him.
Patrik: Good. Good. So this doctor, has he been around all week or … When did he start? This week or …
Emma: It looked like this one here, I just seen him this week. I’ve seen him sitting in there, but I was in my sister’s room when they were coming around and this one here … This is the first time I’ve seen him. It was twice this week I’ve interacted with him.
Patrik: Okay. Okay. Do they change on a Monday do you know?
Emma: It appears they do change on Monday. Look like it’s a week routine.
Patrik: Okay. Okay. That’s okay. All right … So going forward, the goal is to get your sister through the weekend, and the goal is to take one day at a time. Continue to only tell them what you want, continue to ask them questions – and again, I will send you some questions when we come off this call.
Patrik: As soon as they mention withdrawal of treatment again, talk about the legislation that I’m sending you.
Patrik: Okay? And keep asking for the medical records with a deadline. And ask for copies. You don’t go there to access them with a nurse and then walk away. You want copies that you can take with you. And that is your right. That is your right. So even if they try to make this different for you, you have the right to access the copies and you want them with a deadline. Always work with deadlines, they’re not used to that.
Patrik: And you can see already by you asking for the withdrawal of treatment policy, they stopped talking about that.
Emma: They have.
Patrik: There you go. There you go. So, you know, I know how the think. I know how they think. They will keep trying to walk all over people. You just gotta ask all the right questions and they will respond to that, as you can see already.
Emma: Mm-hmm (affirmative). You’re right!
Patrik: So I will follow up with an email, just with some questions it would be good to find the answers to I’d have a good understanding of what’s happening, but the more details I have, the more I can guide you.
Emma: Okay. Okay. All right.
Patrik: Does that help?
Emma: It helps a lot. You’ve helped me tremendously. I’m grateful for your help.
Patrik: You’re very welcome. So I will send you an email in a moment.
Patrik: And, do you have any other questions at this stage?
Emma: That’s it. Get through every 24 hours like you said and get through the weekend.
Patrik: That needs to be the goal for now and as I said, a recovery in intensive care is not a sprint, it’s a marathon. But the good news is, she’s alive, they stopped talking about withdrawal of treatment, and they are weaning blood pressure medication(inotropes/vasopressors). That’s all positive. Again they’re baby steps, but they’re steps.
Emma: Okay. Okay.
Patrik: So I will send you email in a minute just with some more questions you can find the answer to and we’ll talk tomorrow.
Emma: Okay. All righty.
Patrik: Take care for now.
Emma: Thank you so much.
Patrik: You’re very welcome. Take care.
Emma: Okay. bye.
Look out for PART 6 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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- 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
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- 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!
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