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 our readers and the question was
My Tracheostomized Husband Was In ICU, Now On LTACH. What Are The Priorities For His Recovery?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“ I want to answer the succeeding questions from one of my clients Katie as part of my 1:1
consulting and advocacy service! who wants to transfer his dad to another ICU to prolong his life.
I Want my Dad to be Transferred to Another ICU to Prolong His Life. Would That Be Possible?
Katie: Hello?
Patrik: Hi. Is that Katie?
Katie: This is.
Patrik: Hi Katie. This is Patrik here from Intensive Care Hotline. How are you?
Katie: Ah, not too good.
Patrik: I’m so sorry. I only got your email now, and you should have called me straight away.
Katie: Oh.
Patrik: What’s, um, what’s been unfolding?
Katie: Um, so now the doctor’s are saying they will only care for him for three more days.
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Patrik: Mm-hmm..
Katie: And then they want first they call a “comfort care.”
Patrik: Okay.
Katie: Which they then will withdraw whatever that he is on, and so that he will pass away naturally. That’s what they want.
Patrik: Okay. Okay. Do you remember what we talked about yesterday? I remember asking you, do you know about your rights? And that’s what we need to go back to at this stage. We really need to go back to your rights as the medical power of attorney, okay? So, they can’t withdraw treatment without your consent. Right?
Katie: That’s what they just stated.
Patrik: Yeah, okay, yeah yeah.
Katie: I don’t approve of it.
Patrik: Yeah, I understand. Look, it’s never what people say. They can say whatever is convenient for them. Okay. So, at this stage it’s only words. Yes, they’re trying to back it up with action, right? Um, what we need to do, which state are you in? Which state?
Katie: Minnesota.
Patrik: You’re in Minnesota. Yeah yeah. Okay okay. So, there’s two things. Number one: There is a hospital policy around withdrawal of treatment, and that policy, 99% certain, says they can’t do that without your consent, okay? Number one: you will need to ask for that hospital policy. That’s number one. Okay?
Katie: Okay.
Patrik: Number two: I will look up about the laws in Minnesota. I will get back to you in that respect. So, how did that unfold? Did they ask you to come to a meeting?
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Katie: Yeah, they came to a meeting. All the doctors were there, and the Department of Ethics were there-
Patrik: Who was there?
Katie: -and they say that he has-the Department of Ethics?
Patrik: Okay, yeah yeah. And that’s from within the hospital?
Katie: Yes.
Patrik: Okay, yeah. Mm-hmm (affirmative)
Katie: And they said that at this time, that then, you know, they already did whatever that they can, and he doesn’t show improvement.
Patrik: Mm-hmm (affirmative)
Katie: And I keep telling them that I see improvement. He opened his eyes today, and then when his sister say you know, “Blink your eyes, blink your eyes”, he did blink his eyes. And they say that’s not him. That’s the seizure.
Patrik: Okay, yeah, yeah.
Katie: And you know-
Patrik: Okay.
Katie: -we as a family still want to hang on and you know-
Patrik: Absolutely.
Katie: -still want to continue care for him.
Patrik: Absolutely. Who was there in the meeting besides yourself? So you mentioned the doctors, the Ethics Committee. Anybody else from your family that was there?
Katie: Yes. My father-in-law,
Katie: Mm-hmm..
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Patrik: My sister, my sister-in-law,
Katie: Yup.
Patrik: My two sisters-in-law.
Katie: Okay.
Katie: So, there’s a total of four of us.
Patrik: Right. And you as a family all agree that you don’t want any of that to happen? You are all on the same-
Katie: Yeah.
Patrik: -page? Okay. Good. Good. That’s important. That’s important.
Katie: Yeah.
Patrik: But you are the ultimate decision-maker. You are the only Medical Power of Attorney on paper, is that correct?
Katie: Yes.
Patrik: Okay. Good. Good. Okay. So, you see, if you had mentioned to me yesterday that there was a meeting, I would have told you, Don’t go.
Katie: I didn’t know today.
Patrik: Right.
Katie: This morning they come in at like 10:30, and they told me that we’re calling a meeting at 12:30.
Patrik: Mm-hmm..
Katie: And I told them, my my family member might not all be here at this time. So, we might have to reschedule. They say, “No. I don’t care if your family is going to be there or not because we just need you there.”
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Patrik: Okay, I can tell you that if you had told me that I would have told you, “Don’t go.” You see, I will be confronting you with some things now that might sound absurd, but you know it’s really a matter of changing your mindset from this point forward.
Katie: Mm-hmm (affirmative)
Patrik: Some games in life you don’t play in order to win. Right?
Katie: Okay.
Patrik: I can tell you, they asked you for a meeting, so what? So what? You know, I mean, if they asked you to jump off a bridge, you wouldn’t jump off a bridge. Right?
Katie: Yeah.
Patrik: So they asked you for a meeting, well I don’t go to the meeting because I don’t have enough information.
Katie: Mm-hmm (affirmative)
Patrik: If you had told me yesterday there was a meeting, I would have told you straight away, “Don’t go.”
Katie: I didn’t know. I didn’t know.
Patrik: Of course. These are the tactics of hospitals. Like, you know, they tell you, “We’ve got to have a meeting.” You know, you see the pressure that you’re currently feeling is probably pretty high, I would imagine?
Katie: Mm-hmm (affirmative)
Patrik: So, you’ve really got to let go of that for now. And I know that’s easier said than done. But the hospital can’t force you to agree to anything. You are in a free country. You are in a free world. The hospital can’t force you to agree to anything. There is no law in the world that the hospital can force you to basically agree to kill your husband. There is no law in this world that can force you to do that.
Okay?
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Katie: Okay.
Patrik: So, you really need to take the pressure off from yourself because, you know, this is a high pressure situation. Probably one of the worst situations you can ever experience in your whole lifetime. So, you really got to let go from that pressure that the hospital is putting on you because what is it at the end of the day? It’s perceived pressure. It’s not real pressure. It’s just perceived. Right? They have their agenda-
Katie: Mm-hmm (affirmative),
Patrik: They have their agenda. Right? And their agenda is, quite frankly, to kill your husband. And they want to get your approval to do that. So, `you know, they have no legal ramification.
Katie: Mm-hmm (affirmative)
Patrik: Right? So, what we need to do as the next step is…Have they given you any time frames? What have they left you with after the meeting? Have they asked you to get back to them within certain time frames? What was the end of the meeting?
Katie: So they told me, three days. They’re going on three days to give us some time to find other hospitals, or some other places that would care for him.
Patrik: Okay. Is that something you would consider?
Katie: Yeah, I’m glad to move out of this hospital anyway-
Patrik: Okay.
Katie: -I don’t like the way that they treat.
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Patrik: Yeah, yeah, yeah, yeah. Absolutely. Absolutely. Okay. Well, that is definitely an option. Then you might have to consider that, but what’s important is, number one: You don’t want to work on their timeline because again, it might take you a week to find that other hospital, right?
So, you know, from that perspective, your first step, as far as I can see, is to put a stop to their plans. That is number one,
Katie: Okay.
Patrik: Right? And by that, I mean, you know, you’ve got to ask for the hospital or intensive care unit policy around withdrawal of treatment, and you want to find out if they are acting in conformity with that policy, and most likely they aren’t. And that’s their weak point.
Patrik: Mm-hmm (affirmative),
Okay. Then when you say you are in California, I mean, there’s no shortage of hospitals.
Katie: No it’s not. But they are saying there’s only two places that would care for my husband, and he would have to be stable. Right now they are saying he’s not stable to go there because he needs dialysis, and he needs to be on a ventilator.
Patrik: Mm-hmm..Okay. And so when you say you’re in California, are you in Connecticut? Or?
Katie: St. Mark.
Patrik: Okay, okay. You’re in St. Mark. So, there would be a number of intensive care units that could care for him. I have no doubt about it. But, as I said, you may need more than three days to find the right place where they can continue. And, therefore, in the meantime, it’s going to be really important that you put a stop to whatever they are doing in this hospital. Right?
Katie: How do I do that?
Patrik: How do you do that? Right. So, what’s really important there is, you’ve got to ask for the hospital policy about withdrawal of treatment. I send that to you in an email when you come off this call. So, you really can use some action steps there.
So, you’ve got to ask for the policy for withdrawal of treatment. That’s number one.
Katie: Policy of withdrawal of treatment?
Patrik: Yeah. I will send it to you in an email when we come off this call.
Katie: Okay.
Patrik: That’s number one. When you ask for anything going forward from this point, you always ask for the timeline. So, when you go in there next, you will ask for the policy of withdrawal of treatment. And you will say, “I want this policy before five o’clock today.” You know, put a ti-
Katie: Okay.
Patrik: Put a tight timeline on it.
Katie: Put a time.
Patrik: Absolutely. Okay. So, with that I would imagine, not that I know, but would it be fair to say you feel intimidated at this stage? Is that the way to describe this situation accurately? Do you feel intimidated?
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Katie: Mm-hmm (affirmative)
Patrik: Right. Okay.
Katie: So that’s what we’re doing back to them because you’re asking a person with a brain injury to recover in a three-day period. That’s not possible.
Patrik: No.
Katie: To show you hard evidence that he’s recovering. But he is opening his eyes, and he’s crying.
Patrik: Yeah.
Katie: And he’s responding to peoples’ touches and people come inside to say “Hi” to him, so…
Patrik: Absolutely. Absolutely. I can’t remember whether I said that to you yesterday, when we had our first consultation, but in case I haven’t, I will say to you again, the worst case scenario for, an intensive care unit, is to look after a patient indefinitely with an uncertain outcome.
I’ll repeat that because it might, you know, I’ll repeat that because it’s really important to understand. The worst case scenario for an intensive care unit is to look after a patient indefinitely with an uncertain outcome. And that’s exactly what’s happening in your husband’s situation. He’s in there indefinite, potentially, and he’s got an uncertain outcome.
So, they’re trying to prevent their worst case scenario. And their worst case scenario-
Katie: Mm-hmm (affirmative)
Patrik: -and their worst case scenario is that he’s going to be in there for weeks, or potentially for months to come. And they’re trying to prevent that by-
Katie: Mm-hmm (affirmative)
Patrik: -by, basically saying, “Yup, he’s not improving. You know, we need to stop treatment.” The reality is that the patient with a significant head injury needs time. And, as you correctly pointed out, it’s not three days. It’s not even three weeks. You know.
Katie: No, it’s months and years. It depends on the person, you know. On the ability.
Patrik: Very much so. Very much so, you know. And that’s what we’re up against. They’re trying to manage their worst case scenario, okay? And that’s what we’re up against.
But, the other thing that’s important from this point forward is really, you need to change your communication with them. And by that, I mean be clear and concise. And by that I mean, you make your wishes very clear, that you want to continue treatment and just keep repeating that. Just as much as they will be repeating, “Are we going to stop treatment?”
You need to be very clear in your message in saying, “Look. I will never agree to this.”
Katie: Mm-hmm (affirmative)
Patrik: Okay? “And I will take the next steps to stop you from doing that.”
Katie: Mm-hmm (affirmative)
Patrik: Okay? So, you need to change your communication with them. And I know that’s frightening, but I know that’s the only way forward at this point in time.
Also, if they want to go into another meeting, please do not go.
Katie: Okay.
Patrik: Do not go into any meetings unless, you can only go into meetings if, number one, you know the agenda.
Patrik: Mm-hmm (affirmative)
Patrik: So you can be prepared. So, if they had told you yesterday, “We’re going to have a meeting at 12:30” or whatever the case may be, your response should have been, “Well, please give me the agenda of the meeting, and I will think about whether I’m going to come to the meeting or not.”
That should have been your-
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Katie: Mm-hmm (affirmative)
Patrik: -response.
Katie: Okay.
Patrik: Nobody can force you to do anything. Do not respond to any perceived pressure. It’s not real pressure, it’s just perceived. It’s just your response to them. That’s all it is.
You know, if you told them yesterday, “I’m not going into any meeting without having and agenda” they would have changed their communication with you already. But because you went into the meeting, they could literally dump their agenda onto you. And you had no option to even be prepared, or, you know?
So, that’s the situation for now.
Are you in the hospital at the moment?
Katie: Yes.
Patrik: Yes. You are. Okay. What is your next step at the moment? You know, you’re in the hospital. Were you contacting any of the doctors again?
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Katie: I am still trying to find places that will continue to-
Patrik: Okay.
Katie: -care for my husband.
Patrik: Sure. Sure. Okay. And that’s a smart thing to do. That’s definitely a smart thing to do.
In the interim, given that they impose an artificial timeline of three days, you know, you may need more than three days to find a hospital.
Katie: Mm-hmm..
Patrik: And for now, you really need to change your communication with them. You really need to be firm with them, right?
Katie: Mm-hmm..
Patrik: And you really need to start to send the message as quickly as possible that you do not agree to a withdrawal of treatment. You really need to be very clear with them that no matter what they say, no matter what they decide, that you do not agree with that.
Katie: Okay.
Patrik: It’s okay. It’s okay. You are in a very difficult situation. It’s terrible what hospitals do. It’s absolutely shocking. You know, it’s appalling, and the pressure on you, you’ve got to take that away. You’re doing fine. You’re just learning about this. That’s all it is. You’re just learning about this.
Yes, it’s going to be a very steep learning curve. Okay? But please-take that pressure-
Katie: but I’m not going to give up.
Patrik: No. No. No. No. You don’t. You don’t. And there are ways, okay? So, just do not respond to any pressure. This is your husband.
Katie: I’m gonna go to the front desk and ask for the policy on withdrawal-
Patrik: Correct. Correct.
Katie: -of care from them.
Patrik: But when you do that, do that in the intensive care unit. You’ve got to keep, you’ve got to stay-
Katie: Yeah. I’m in the intensive care unit. Yeah. I’m right here.
Patrik: Great. Now, the other thing, are you having concerns at the moment that they are slowly reducing support already? Is that one of your concerns?
Katie: No, they were. They didn’t want to continue his dialysis, but I keep going on. I say, you know, he has patient rights.
Patrik: Great.
Katie: And I do not want you to stop it. And they got mad. They got mad at me.
Patrik: Good.
Katie: And they did have his dialysis treatment today.
Patrik: Okay. Fantastic. So, I’m glad you’re saying that because-
Katie: Yeah. Every night I go online. I Google. I try to learn.
Patrik: Yeah.
Katie: I try to learn and speak their language. Otherwise, they’re going bully me around.
Patrik: Correct. Correct.
I’m really glad you mentioned that because that’s also telling me, if you have done that already, and they have been responsive, well that means they are responsive. And that’s great.
Okay?
So you’re taking control already.
Katie: Okay. I’ve got to go back to the group and take care of him to because…
Patrik: Okay.
Katie: They stay in his room together, so…
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Patrik: Right. Right. But make sure you’re also looking after yourself. Make sure you’re not spending 24 hours there and you don’t get any sleep. You can’t run yourself into the ground either.
Katie: Yeah. I take turns with his family.
Patrik: Okay. Good. Good.
Katie: Thank you Patrik.
Patrik: You’re very welcome. I will send you some more information, okay?
Katie: Okay.
Patrik: Please change everything in there, your language. Be firm with them. Repeat what you want.
Katie: Mm-hmm (affirmative)
Patrik: Don’t back down
Katie: Mm-hmm (affirmative)
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Patrik: Also, change your body language, you know. You’re probably having your head down because you might feel intimidated. Change all of that. It will help you.
Katie: Okay.
Patrik: It will help you.
Katie: Okay.
Patrik: Okay? Let me know if you need anything else. We’ve got plenty of time still to talk.
Katie: Okay.
Patrik: Okay? I’ll touch base with you probably tomorrow. If you need anything else in the meantime, please give me a call any time.
Katie: Okay. Sounds good. Thank you.
Patrik: You’re very welcome. All the best for now.
Katie: Yup. Bye now.
Patrik: Bye bye.
