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
You can check out last week’s question by clicking on the link here.
Melanie’s sister is in the ICU and her condition is improving but the ICU team is limiting treatment to her.
My sister’s Condition In The ICU Is Improving. Why Does The ICU Team Limit Treatment?
Melanie: Hi Patrik.
Patrik: Hi, Melanie. How are you?
Melanie: I’ve had better days.
Patrik: I’m sure you had. I’m sure you had.
Melanie: Yeah, it’s been really challenging. Yeah. I was just on the phone to a friend of mine who’s a doctor and he’s in another … He’s in Bath with his son which is not actually here.
Patrik: Is he in ICU?
Melanie: No, but he gave me a few little tips, ’cause I asked him about … Because I want to move her out of there now. That’s my aim. He gave me a few little tips on that and he recommended a really good private ICU Hospital or a private hospital with an ICU facility. He gave me a few tips, because he said it might be … that you might get resistance pulling him out of Houston.
Patrik: Yeah. If she goes to a private hospital, she would need a referral from one of the doctors there. I’m sure that’s where your friend I’m sure would have explained that to you.
Melanie: He said they would need to transfer from doctor to the doctor, so one of the intensivists would have to, from Houston, would have to do a transfer to the doctor, the doctor at the other end, but the thing is I need to figure out how I, how I can find a doctor at St. Houston Private that will accept him. So, I don’t know if you have any, if you have any tips on that.
Patrik: Yeah, I will, I will.
Melanie: I’m at the point where I don’t even want to speak. I don’t even think of any value in with any of these doctors.
Patrik: Yeah, yeah, yeah, yeah. I hear you. I hear you loud and clearly.
Melanie: Yeah and I don’t know what your perspective is on that, be happy..
Patrik: Yeah, yeah, yeah, no absolutely.
Melanie: And when I thought about it when I got home. I’m like, “we’re fighting a losing battle.” The public system they want their beds. Maybe it’s better to get my sister into a private, a private ICU facility.
Patrik: Look, I generally agree with that, and it’s something that I would have brought up, but I thought it was too early. If you have private health insurance or if you have the funds to pay for private healthcare, definitely, absolutely, yes. In terms of the public system, I’m still … so there’s two thoughts. The first thing that I thought when I saw your text earlier was would you say that this intensivist in particular has been the worst out of all, or would you say they have all been really bad?
Melanie: They’ve all been really bad but one ’cause we had one week where the doctor was reasonable.
Patrik: Mm-hmm (affirmative).
Melanie: The rest were atrocious.
Patrik: Okay, okay. So one strategy could be, especially now with the long weekend coming up, one strategy could be just to bide some time until Monday, until there’s a new intensivist. Sometimes it can make a difference.
Melanie: I know who the intensivist is, and he’s one that was very, very problematic.
Patrik: Okay, okay. So that’s not a strategy at this point in time then.
Patrik: Okay. That’s fine, that’s fine. So with the public system, yes if you can get her into private ICU, I’d say absolutely. If you could start that process and I will tell you how you can go about it and I can help you with that. The best way to go to a private ICU is to start making a call to a CEO or to a director of nursing level, and I’ll tell you why. In a private hospital, I’m just trying to think St. Houston Private is Darwin. Darwin is for profit, private hospital. They basically want patients in their beds, okay? So, a CEO or a director of nursing is incentivised to fill their beds.
Patrik: Right? So that’s why I would start on that level rather than on a doctor level because once the CEO or director of nursing goes down to a doctor level and says, “hey, I’ve got this patient who wants to occupy one of our ICU beds,” that is way more powerful than trying to get a public doctor to refer to a private hospital doctor, and they both might or might not have an interest in doing that in the first place, if that makes sense.
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Melanie: Oh, so I beg your pardon, I just clarify something. I would need, you’re saying talk to the director of nursing or CEO of the private hospital?
Patrik: Yeah, absolutely, absolutely.
Melanie: Can I make a call, can I look them up and just call them randomly? Do they take that?
Patrik: They will, they will. I will find out for you who you need to contact. I will make a couple of calls tomorrow. I will find out who you need to contact. Have you brought up with the doctor today that you might, that you’re thinking about this?
Melanie: No ’cause I came home, I was so, I was in despair basically. I was like, what am I gonna do?
Patrik: I’m so sorry.
Melanie: Yeah. Yeah. No I haven’t mentioned it.
Patrik: Okay. How is your sister?
Melanie: Well they started the weaning process, and she’s been doing well, so she’s gone from one hour off the ventilation to, she was up to an hour and a half.
Patrik: That’s great. That’s great.
Melanie: So yeah, I just don’t want her to take a step back though. I want her to go beyond that.
Patrik: Yeah, and I can tell you that she may take a step back. That can happen, but as long as they’re not overdoing it, you know an hour is great to begin with. That’s great, right? I mean last week you wouldn’t have probably even thought about this would you?
Melanie: No. Was not even an option.
Patrik: That’s right. So, you gotta look at the positives there. Also, what’s really important in this, you know, the more steps your sister can make forward, their argument is going to weaken about …
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Melanie: That’s right.
Patrik: Right? So, every step she’s taking with moving forward, their argument is going to weaken, and I know you’re feeling tired, and I know you’re sick of talking to them and pleading your case and what not, but I do believe whenever you get chance you’ve got to remind them of the positives.
Melanie: Yeah we did that today, and they just shoot it down and go, “well, you know it’s not really that, it’s still early days,” or, “her awareness still isn’t consistent enough,” or “she doesn’t wake up enough,” so they always go back to that.
Patrik: Okay. How is her awareness at the moment?
Melanie: I’m finding when they take off the ventilation she wakes up in a better way, like, she’s more aware, she’s using energy, she’s trying to lift her limbs at those times.
Patrik: Good. Good. And so what are they proposing as their next step? What would they do …
Melanie: Well, so, if she fails the ventilation, and they couldn’t put timeframes or anything on it, so if she has to go back onto ongoing ventilation, she goes backwards, they’re not gonna do it. They’re basically saying they won’t. So, if she goes up to a level of ten on support then that means she’s failed, and they won’t do it, but I don’t know over what timeframe they’re going to wean her.
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Patrik: Yeah, yeah, yeah, yeah, yeah. So, your argument would be that if your sister is more awake and is aware of what’s happening, so your argument needs to be if your sister is aware of what’s happening and they’re not supporting her with life support, they’re basically killing her while she’s awake. That needs to be your argument.
Melanie: But that’s what I tried to say today and he wouldn’t have a bar of it. Absolutely would not.
Patrik: What did he say?
Melanie: Well I said there’s absolutely no way we’re gonna switch off life support. We’re just not gonna do that. She’s aware, she’s whatever, and he said, “as a medical professional I have to do what’s in the best interest of the patient,” and I said, “well surely the family has a say in what’s in the best interest,” and he wouldn’t have a bar of that either. He said, “I’m not changing my plan. Everything I said, we will do. She’s going to stay in place, and if we can’t resolve this we need to get an external opinion, and that’s gonna take a while because there’s a process for them to be able to come in and do that.” He was basically saying, you can try it but you might run out of time anyway.
Patrik: Mm-hmm (affirmative). Is she still on inotropes/vasopressors?
Melanie: No. She hasn’t been on those …
Patrik: Good. Good, good, good, good. Fantastic.
Melanie: … a good week now.
Patrik: Good. That’s positive. It’s positive that she’s had time off the ventilator. Would you say that she’s still making eye contact?
Melanie: Yeah. Yeah, yeah.
Patrik: Trying to talk?
Melanie: To me she does, but she isn’t doing much for the doctors, and I told you I asked her and she …
Patrik: Yeah, yeah, yeah. Yeah, yeah, yeah. Okay. So here is definitely a glimmer of hope for you. I was working with a client in Brisbane. It was around Christmas, and I was working with them for about from probably late November up until almost end of January. Now they had a family member in ICU, a sixty-two year old gentleman, and he was in ICU for nearly two months. We’ve had a similar situation. They didn’t want to do X, Y, and Z, and we were quite successful with arguing around the policies, right? And I would say that this man was probably even a lot sicker than your dad. He was a lot younger as well, but he’s now at home where he’s off the ventilator, and he started with an hour off the ventilator, and even then …
Melanie: Over what?
Patrik: Over probably a couple of months.
Melanie: An hour over a couple of months?
Patrik: No, no. No, no. An hour a day probably for about a week, right? Then gradually probably within a couple of weeks he had significant time off the ventilator, like, twelve hours off during the day and then back on the ventilator over night to the point where probably after another week they had him off for twenty-four hours and then eventually took the trache out. Right? And he was on inotropes for weeks. He was on dialysis. So he was a lot sicker, and they were very much, “oh he’s dead.” Those were the terms they were using in front of the patient.
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Melanie: Same. Oh yeah, yeah.
Patrik: Terrible, terrible. Have you brought that up with them?
Melanie: I did at the meeting. I said I would appreciate if that terminology and that conversation could be taken away from the bedside, and the whole table, like, the whole representation from the hospital went like, “oh, oh, that shouldn’t be happening,” and we just sat there and went, “it’s happening a lot, a lot.”
Patrik: Good, good. Good that you brought that up. Very good that you brought that up. I do believe that as a next step, I really do believe, especially if he’s not budging, I do believe you need to either get the private hospital going or really escalate this to a CEO or a director of nursing level on the hospital level, or tomorrow speak to the office of the public advocate. They were really helpful, and I didn’t mention it as I was just bringing it forward as a …
Melanie: By the way just on that, I raised that, and he said, “no that’s not actually correct. We don’t take calls from any external people in ICU. That’s our policy.” And the nurse agreed with him.
Patrik: Of course.
Melanie: He had a nurse in there, yeah …
Patrik: Of course, and I can tell you I’ve heard all of that before. It’s a matter of being persistent. It’s a matter of, yeah, being persistent, but also I think the next step could be, depending on how you feel when you’re there at the bedside, maybe when you’re there pull out your mobile phone and let me talk to the bedside nurse if you want to, if you feel there’s any value in that.
Melanie: Yeah I don’t know what that’s going to achieve because the nurses are very cagey about what they say to me. They say you’ve gotta go talk to the doctor about that. Yeah, yeah, and they’re like, “why are you asking that for? Where did that question come from?”
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Patrik: Oh my goodness. That’s terrible. What would they have to hide?
Melanie: Yeah my gut is so strong. I want to put all my energy into getting her out of there, and even if you can help me with that …
Patrik: Yeah, I’m with you, I’m with you, I’m totally with you.
Patrik: Okay, so what we could do tomorrow is I can definitely find out tomorrow who you might have to contact at St. Houston Private, definitely. Is St. Houston Private, would that be your first and only option? Would you have others?
Melanie: Uh, that’s the only one that I know of. I don’t if know St. Ernest’s Private would be quick to take her …
Melanie: … but the thing that’s also with St. Houston Private is apparently there’s a really good high dependency unit there …
Patrik: They do. They do.
Melanie: … so if he gets through if he gets past this phase then it’s good to know that there’s a good unit there that can continue to work with rehab and that sort of thing.
Patrik: Yeah. Yeah. Yeah. Okay. I can tell you with private hospital, private ICUs, they definitely have an interest in filling their beds, right, there’s no doubt about that. What that’s happen on a private hospital level is most of the private ICUs are doing open heart surgery, and the reason I’m mentioning that is that’s their main business model, and they’re earning shit loads of money by doing that, so their primary goal is to fill their beds with patients who have open heart surgery. If they are busy doing that, you may run across a challenge. The reason I mention that is, St. Houston Private great, but if for whatever reason there is no bed you may have to look at other options.
Melanie: Right, but then look at St. Ernest’s. I’ve been look at St. Ernest’s or any, if you could recommend any others …
Patrik: Well, I used to work at Darwin Private ICU, right, and that’s also where I will make some inquiries tomorrow in whom to contact.
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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- 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 your 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)
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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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