I Want My Mom to Recover in ICU But Why Are They Talking About Withdrawal of Treatment Now! Help!

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

Should You Go into a Family Meeting with the ICU Team when You have a Loved One in ICU? Live Stream!

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 questions from one of my clients Julia, as part of my 1:1 consulting and advocacy. Julia’s mother is critically ill in ICU and she wants her mom to recover but she is asking why the ICU team wants withdrawal of treatment now.

I Want My Mom to Recover in ICU But Why Are They Talking About Withdrawal of Treatment Now! Help!

“You can also check out previous 1:1 consulting and advocacy sessions with me and Julia here.”

Part 1

Part 2

Patrik: Not necessarily, and I’ll tell you why. Most of it would be online now. In this day and age, they should just send you a link to a website with a username and a password, and you should have access to the medical records.

Julia: I guess what I’m trying to say is if we ask for the … Yeah, okay, that’s fine.

Patrik: I don’t know what they’re doing there at the moment. Whether they have everything online or whether they still do paper based, I really don’t know. But most ICUs now, it’s all paperless. It’s all in the cloud. They should just send you a link to a website with the username and a password and it’s all there.

Julia: Okay.

Julia: Okay. All right. Okay. Look, you’ve been great. You’ve given me a wealth knowledge there to work with.

Patrik: You’re welcome. Just keep the letter simple.

Julia: Yeah. Should I include my mom’s name, my sister’s, or just my name?

Patrik: That’s a good note. I think you should put your mom’s name and your sister’s name in there. Here is one of the pitfalls in this, and your lawyer should help you with this. You might remember, in the beginning, I asked you about guardianship.

Julia: Yeah.

Patrik: I tell you the worst-case scenario here. If the hospital really wants to play hardball with this, they will try and seek guardianship over your mom. I believe that one of your first steps, if it comes to a dispute, one of your first steps is seeking guardianship over your mom. Again, a good lawyer will do that for you.

Julia: Okay.

Patrik: What could happen, the worst-case scenario, in a situation like this is that the hospital is seeking guardianship and saying, “Oh, you’re not acting in the best interest of your mom.” If they will have the guardianship, then you have no rights whatsoever. Nothing.

Julia: How do they get guardianship?

Patrik: What they will argue in a situation like this is that her condition is so poorly that prolonging her life might be perceived as suffering for her. They might be saying that by you wanting to prolong her life, you prolong her suffering. And whilst I completely disagree, that will be their argument to take to the court. I’ve seen it.

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Julia: Okay. If we went to the court, for example, got guardianship.

Patrik: That’s not much they can do, but you need to seek guardianship pretty quickly.

Patrik: I believe your lawyer, as the first step, should help you with guardianship.

Julia: What if they might get on front foot and try to seek guardianship first?

Patrik: I don’t think it’s there yet. They usually do that if the dispute can’t come to a resolution. If they realize, “Okay, you’re not giving up on this and you are exercising your rights.” They will try and seek an amicable resolution with you most of the time.

Julia: If I send that letter tonight, they wouldn’t be contacting their representative tomorrow morning trying to get damage?

Patrik: Look, I think it’s unlikely, because the hospital CEO wouldn’t necessarily instigate that. It would be one of the doctors instigating that. I don’t think they’ll be that quick. I have seen it when a resolution can’t be found, but you’re just in the early stages I believe of negotiating. I’ve seen it when this is sort of goes on and on, and the resolution can’t be found. That’s when I’ve seen it.

Julia: Basically, if a doctor gets guardianship before you do, they have the power basically.

Patrik: Yes. You can challenge that of course, but it’s going to be difficult. Most of the time, the hospitals are pushing the boundaries. They see whether they can get away with it. And once you start exercising your rights, usually they are happy to negotiate. There’s no guarantee for that, of course.

Julia: Look, we’ve been ringing around to find people that have this experience. We’ve got a couple of different lawyers that we’re speaking to, to find out who’s the best.

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Patrik: Just remind me, how many weeks has this been now?

Julia: She’s been in ICU for 32 days and I think 10 – 11 days off sedation.

Patrik: Okay. When was the first time you’ve heard about withdrawal of life support?

Julia: Just today.

Patrik: They’ve never talked about this before?

Julia: We had a family on meeting and they said that that’s what they’re considering, but they didn’t say anything official. They said, “Well, look, we’ve got another test we want to do.” But there was nothing official. Then they said, “well, look, we’ve got a couple more tests to run and then, yeah, we can see how that goes and then discuss.” It was just over the phone and he rang my sister, but it was nothing official. It was just a general chat.

Patrik: Right. Sure.

Julia: Yeah, he didn’t say, “We’re stopping your thing on Thursday.” They didn’t say anything like that. They just said, “We’re concern about future treatment.” But they haven’t given us the pain score. I think he said the nonverbal pain score as well.

Patrik: I was just curious. They didn’t give you a score?

Julia: Well, no. I haven’t asked the one yet, because I hadn’t spoken to him since I spoke to you. Because he said, “Well, she’s in pain, she’s suffering.” And I said, “Well, she’s not grimacing. What evidence can you show me that she’s actually in pain?” You know what I mean?

Patrik: Yeah.

Julia: Yeah. He said that it was kept in the brain that she can tell that there’s pain occurring. But it was very eerie theory. But she’s still not waking up. Is she experiencing pain physically?

Patrik: Do you think she’s experiencing pain physically?

Julia: No. My mom is a very heavy sleeper. She can even sleep at a rock concert. If she’s in pain, she’ll grimace. One of the doctors actually grabbed her hand really hard and then said, “Oh, yeah, she’s grimacing to pain.” He said. When he squeezes. Now, that was just a bit of test. Not for anything, but then he let go of the hand and she’s fine.

Patrik: Okay.

Julia: He’s got nothing else. Look, obviously, he’s lying. It’s a very tough time, but there’s no physical pain. She had no physical injuries. And I asked him, “Is she going through emotional pain?” He said no.

Patrik: Have they talked about the burden of decision-making about in a situation like that? Have they talked about that? Do you know what I mean by that?

Julia: Not exactly. No.

Patrik: Yeah. Sometimes the argument from an ICU perspective is, “Well, we don’t want you to make a decision here, because we think it’s too much of a burden for you as a family to make that decision, so we’ll take the burden away from you to make the decision.” They haven’t said that?

Julia: No.

Patrik: Okay, good. Sometimes they argue on that level saying, “It would be too traumatizing for you to make the wrong decision, because we know what decision to make and we’ll just take the burden of that decision-making process away from you.” But if they haven’t said that, that’s good.

Julia: And my sister questioned them and said, “Look, there’s other therapies that can help with people waking up. Have you tried any of these?” And the doctor said no.

I asked him, has there been changes in structural damage or loss in neurons or brain volume? Is there an opportunity for neuroplasty? I can actually understand neuroplasticity and the capabilities that we know that the brain keep evolving. I explained that I would go down that path and be able to give my mom regular meditation and deep meditation starting with the basics, which would be as simple as if you stay at a candle for a certain period of time, it starts to strengthen the mind, and silence the mind, and calm the mind. But it changes the grey matter, and it changes the stress levels and increases the other levels.

Patrik: That’s great.

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Julia: She’s never been sick. She’s never had an operation. She’s got her physical life. She did volunteering work for 10 years. She’s still young. She stopped because of COVID. All these things, they know, we’ve told them that. They know that she’s not sitting at home doing nothing.

Patrik: Yeah, absolutely.

Julia: She’s someone that doesn’t want to be lying on bed. She wants to fight.

Patrik: Yes, absolutely. Unfortunately for them, your mom is just another number.

Julia: That’s sad to know. Anyway, I would like to avail more of your consulting service Patrik. Are you free for another session tomorrow or Friday?

Patrik: I would absolutely be free tomorrow.

Julia: Well, I’d love to work around you and get valuable insights.

Patrik: Sure.

Julia: I guess so. Look, if the doctor calls me, you said about if you go down this path, this can be a form of murder and euthanasia. Should I say anything else to him, or no? Do you mind just say look … Or should I just not speak to him at all?

Patrik: No, I would talk to him if I was you. I would start using stronger language. I talk from my own experience, not only working with clients. There was a situation where I was still working in ICU where I was put in a very compromising position where I was being asked to withdraw life support, and I knew it was all wrong.

And I said to the doctor, “Well, if you want to withdraw life support, you do that. I’m not going to be a murderer.” And then he said to me, “So, you are refusing my orders.” And I said to him, “That’s exactly what I do. If you think it’s all right, why don’t you do it?” And he disappears.

Julia: Sorry.

Patrik: And he disappeared. That never happened, because as I said, I’ve done my research. I know about patient’s rights. I’m not a lawyer, but I’ve had so much experience either in those situations or as a bedside nurse where I challenge the system on all levels, and nothing ever happened in terms of if you put your foot down, they can’t do this.

Julia: Another thing, because of COVID, it’s been tough with visits.

Patrik: Right.

Julia: We’ve seen her probably five times in person for one hour.

Patrik: Five times in person. Oh, my goodness. When was the last time you’ve seen her?

Julia: My sister saw her yesterday.

Patrik: All right. For how long?

Julia: I think about an hour.

Patrik: An hour. My goodness.

Julia: We couldn’t even see her in the first two weeks.

Patrik: But that’s another argument for you because I understand the restrictions at the moment in ICU.

Julia: Yeah.

Patrik: From what I’m hearing on the ground, there’s hardly any COVID patients left. Thank God for that. The whole restrictions need to go out of the window.

Julia: Yeah. No, I agree. Okay.

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Patrik: Here is another line of argument there. Because you haven’t seen your mom, you believe that by you spending more time with her, that she will eventually respond to you and other family members being around because she hasn’t had that really.

Julia: Yeah. And we missed critical stages in those first couple of weeks when we weren’t allowed.

Patrik: Yeah, absolutely.

Julia: Yeah.

Patrik: I think that’s definitely another line of argument.

Julia: Okay. I’m having trouble getting the email address, but they should give it to me, shouldn’t they?

Patrik: They should give it to you.

Julia: Okay.

The 1:1 consulting session will continue in next week’s episode.

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