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
I Want My Mom to Recover in ICU But Why Are They Talking About Withdrawal of Treatment Now! Help!
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 in ICU, and she asking if Intensive Care at Home is the best option for her mom in ICU.
Is Intensive Care at Home the Best Option for My Mom in ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Julia here.”
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.
Patrik: I’ll send it to you.
Julia: Okay. I’ve got five things I’ll mention to the hospital CEO, policy withdrawal, treatment, tracheostomy . I would like to have that done. The different doctors, we’ve had over 10 doctors give us slightly different information. Plus, the doctor had told us that people wake up weeks and weeks later. Euthanasia and not spending enough time. I actually did find a journal also that shows that people were waking up later.
Patrik: Oh, great!
Julia: Would I send that too?
Patrik: I would gather as much information as possible, but the reality is this. Even if she wasn’t waking up and you wanted her to have more time because you haven’t spent any time with her, that is still well within your rights.
Julia: In terms of taking to other hospital, is that something I would include?
Patrik: You may. Because a lot of what they’re doing is driven by finances, which means what they want to do is they want to have that bed empty. That’s the bottom line for them. Now, one way for them to empty their bed is what they’re doing at the moment. Another way to empty their bed is sending her to private hospital. The hospital CEO will probably be amenable to that even more so than …
Julia: The doctor.
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Patrik: That’s right. Yep.
Julia: Okay. But I’ll just say, “Look, we’re happy to transfer her to a private hospital if you …” Yeah.
Patrik: If you’ll release her.
Julia: Yeah. And we’re happy to negotiate something.
Patrik: That’s right.
Julia: But see, their own main problem is only releasing her to another place because there’s full concern of the risk if something happens to her during transport.
Patrik: Look, yes, and that’s where …
Julia: We’re happy to take on that risk.
Patrik: Exactly.
Julia: Will I include that, just so that we’d be happy to discuss …
Patrik: Look, I think you should be saying that you’re happy to discuss.
Julia: Discuss in terms of negligence, liabilities? Or would I just say happy to discuss about transfer and what would be …
Patrik: I think you should keep it on that level.
Julia: Don’t mention anything about risk or anything?
Patrik: No, because they’re aware of the risk.
Julia: I guess what I’m trying to say is to make it easier for them to say, “Look, we’re happy to take on the risk that you won’t be liable if something happened during transport session.”
Patrik: Yes, you could say that, but then there are other players in the picture too. Let’s just say you were going to say that, at the end of the day it will be up to the transport company, and the receiving hospital as well. I would be cautious.
Julia: Maybe I shouldn’t mention that just yet.
Patrik: No.
Julia: Yeah.
Patrik: You can say that you are considering sending her privately. You can say that, but I wouldn’t talk about the logistics. They know about the logistics.
Julia: Yeah. Okay. All right. Look, you’ve been great. I can’t thank you enough. I’m happy to continue with availing consulting services with you.
Patrik: Yeah. Look. I’d be more than willing to provide that for you. Anyway, I don’t know how much research you’ve done, but I’d just like to throw it in quickly. Have you seen that we’re also providing service, Intensive Care at Home? Have you seen that?
Julia: Providing, sorry?
Patrik: As part of your research, have you seen that we are also providing a service in Melbourne Intensive Care at Home? Have you seen that?
Julia: Oh, you guys provide service Intensive Care at Home?
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Patrik: Yeah, we do. That’s part of what we do. Because I believe it should be part of your line of argument too. Now, I’m not saying that your mom will need Intensive Care at Home. However, what I will say is this. You could say, “Hey, I want to do a tracheostomy for my mom and take her home and let her wake up at home.” Because a service like ours exists. You don’t need to use our service, but it’s part of your research.
Julia: Look, I go with you because I trust you, and you understand where I’m coming from, so it’s something that I will very highly consider.
Patrik: Right. Look, it’s not there yet, but as part of your argument, it’s like, “Okay, well I’ve done my research, I know Intensive Care at Home is out there. They’re taking patients home with a tracheostomy.” We wouldn’t take someone home with a breathing tube, but we are taking people home with a tracheostomy because it’s a safe airway.
Julia: Would I mention that as well, or not?
Patrik: I would, because it’s all part of the argument. For them, it’s a one size fits all. Their one size fits all approach is … Well, Saturday, 4:00 with just of life support. Whereas you take a balanced approach, you’re saying, “Well, here are my rights, here are services.” It’s a very balanced approach. Their approach is not balanced.
Julia: No, it’s not. Sorry. There’s just one thing. Oh, yeah, but euthanasia. I’ll say, “Look, we’re also considering Intensive Care at Home.” Would I say that we would need the tracheostomy done? Would I say that?
Patrik: They would know that tracheostomy is needed for Intensive Care at Home. They would know that, but I think you can just say you want a tracheostomy, and you are considering Intensive Care at Home services there also.
Julia: We were told last Friday that, that will get done right then.
Patrik: Right.
Julia: Look, they’ve all been polite and friendly. The doctor seemed polite, and he just said, “Look, tracheostomy would be a great idea to help her and also to help start building some strength in her neck, and it will make it easier.” Because my mom was getting some sores around the mouth.
Patrik: Right. Yep.
Julia: We were concerned for maybe getting infection through there. Yeah. He suggested, “Look, it would be a good idea.” Also, it would be easier for mobilization.
Patrik: Absolutely. They’ve told you all of that. Why would they all of a sudden talk about mobilization and tracheostomy, and now they’re doing a U-turn?
Julia: The problem is we’ve had different doctors on a regular basis speak to us. That’s been the concern. We would have had probably 12 doctors speak to us that, that’s been the frustration thing. Look, I understand there’s different levels of doctors, but when you’ve got so many doctors … I will mention that also. Look, we’ve got 10 to 12 doctors speak to us at different times, and it’s been a bit confusing and slightly mixed messages. We were told by the doctor on Thursday that we’ll be getting a tracheostomy. Yet on Tuesday, we were told it’s not happening anymore, and we weren’t notified of this. The family thought it had already been done.
Patrik: Who do you think is pushing this? Who’s pushing this at the moment? Can you point someone out?
Julia: It’s the doctor we’ve been speaking to the last.
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Patrik: Yeah, that’s okay. I think you know what to do next.
Julia: Yeah. I’ll draft that letter. My sister is better at drafting letters.
Patrik: Yeah. Here is just one last hit. If you wanted me to talk to them, here is the approach to take to begin. My advice for families, if you wanted to bring me in, whether it’s in person or over the phone, you could bring me in for who I am, but my advice is to bring me in gently and say, “Hey, look, I’ve got Patrik here. He’s a family friend. He’s an ICU nurse. He’s just trying to help us making sense out of what’s happening.” Because if you tell them, “Oh, I’ve got an advocate and I’ve got a consultant here.” They might shut down. What you want them …
Julia: Shut down in terms of?
Patrik: They may not want to talk to me, or they may withhold information.
Julia: Okay. How would we bring it in gently then?
Patrik: If you were to have a call tomorrow with them, you just get me on the phone and say, “Oh, by the way, I’ve got Patrik on the phone. He’s a family friend, he’s an ICU nurse. He’s just trying to help us understand.” And that’s all.
Julia: But if they spoke to me, if they rang on my phone, I could still call you on my phone.
Patrik: You can call me in. Just keep it low key and say, “Hey, look, I’ve just got to dial someone in.” Keep it as low key as possible, because at the end of the day, what we want from them is to talk. We want information from them. Because one thing that I haven’t got at the moment is I don’t have enough clinical information to say to you, “Hey, hang on a second.” Even if they were to stop life support, maybe it’s not all that bad because here is happening clinically. I don’t have that information at the moment.
Julia: And the other option was if they had a meeting in person, which I would like to bring in a family friend, is that what we’re …
Patrik: Yes, you could either do that or then at some point I would have to expose myself, especially if you wanted to talk about Intensive Care at Home and some of the staff there, they would know me.
Julia: It wouldn’t be a good idea then to bring …
Patrik: It wouldn’t be over the phone. It’s sort of low risk if … No, I’m happy to come. That’s not the issue, but then I couldn’t sort of play the family friend role anymore.
Julia: Yeah. When they ring, I can just say, “Look, I would like to phone a friend.”
Patrik: Yeah, exactly. Just for support and do it that way.
Julia: Okay. All right. Look, if you’re free tomorrow at any stage for another chat later on this, you can just text me.
Patrik: Yes. Look, I might not be available between 5:00 and 9:30 tomorrow, but again, I don’t know that yet.
Julia: Yeah. No, that’s fine. How about Friday?
Patrik: Friday is much better.
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Julia: Yeah. Okay. Well, that’s great. I’ve got all those points. Yeah. Withdrawal, tracheostomy, the different doctors we had, euthanasia, spend time with her. Going into the private health or going at home.
Patrik: Yep. Going home. Yeah.
Julia: Yeah. Okay, great. All right. Yeah, I’ll get onto that now with my sister and we’ll send that through.
Patrik: Yeah. Okay. All right.
Julia: Thanks very much.
Patrik: It’s a pleasure. All the best for now.
Julia: Thanks.
Patrik: Thank you. Bye.
The 1:1 consulting session will continue in next week’s episode.
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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Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- 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
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- 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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!