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
What is Best for My Mom with Tracheostomy After ICU: Home Care or LTAC?
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 Lorietta, as part of my 1:1 consulting and
advocacy service! Lorietta’s mom had a cardiac arrest and currently on tracheostomy. She is asking why do they need to bring her mom back home on a ventilator if the ICU team can try hard enough to take it off?
My Mom is in ICU with Tracheostomy and Ventilated. Why Won’t the ICU Team Keep Her Off the Ventilator First Before Discharge?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Lorietta here.”
Part 1
Patrik: Then the next question to me is, can she get off the ventilator? Well, I don’t know that, but given that she came close last week, well that’s a good sign…
Right?
Lorietta: She did as she went to distress and she was just exhausted. By night, over night just struggling.
Patrik: So, that then the question is, yeah, that happens, right. That happens. But, try it again.
Lorietta: Try again. Okay.
Patrik: Just to give you some insights where I sit with all of this, I’ve worked in intensive care for nearly 20 years. I’m an intensive care nurse by background. I also now own and operate a company, intensive care at home, where we look after ventilated patients at home.
Patrik: Now, I can tell you, we can’t provide services where you are. That’s not where we operate. However, I’m very sorry, but because I’ve got so much experience with it, I can definitely guide you what to do and what skill level you need and that’s and so forth.
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Patrik: But at the same time, what we provide, for example, intensive care at home is a viable option. However, the aim is always to get the patient off the ventilator in the first place and I do believe they haven’t tried hard enough yet.
Lorietta: I can speak with the pulmonologist.
Patrik: You can speak with them, but the missing link for you will be, you won’t have enough clinical information and they will brush you off. What you will need is somebody guiding you with clinical questions so you can actually really put the pressure back on them.
Patrik: You can go back to the pulmonologist and he would say, “Oh yeah, we’ve tried everything.” Well, number one, I can talk to the pulmonologist myself with you.
We can set up a call or I can set you up with some clinical questions where you put the pressure back on them and say, “Hey, have you tried this? Have you tried this?
Have you tried this? Why not?”
Lorietta: Very good. Excellent. Okay. And I know that she would be eligible for home health but that’s not intensive home care. That’s what I’m looking for. It’s intensive home care.
Patrik: Imagine your mother comes off the ventilator. The transition home would be so much easier. I can guide you taking your mother home on a ventilator. I can definitely help you with that but why would you keep somebody on a ventilator in the first place if you can get them off?
Lorietta: That’s a good point. Well, they’ve tried and it’s been scary.
Patrik: No doubt about that. No doubt about that. I’m not questioning that at all. I’m not saying it’s easy to get somebody off the ventilator. I’m not suggesting that at all, but it’s doable. I keep coming back to just because you’re trying something once and it doesn’t, you don’t achieve what you want to achieve. Should you give up?
Probably not.
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Lorietta: Thank you. Right now I’m looking at the monitor and the bed monitor as well. And a red light is going off and they’re not coming in.
Patrik: Are you there at the moment?
Lorietta: I am. Yes. I’m here around the clock. Because we have to advocate for her. If we weren’t here then I don’t know what would happen. She would just die.
Excuse me. But she would. I think.
Patrik: I’m very sorry to hear that. That’s just so disappointing. I think what really needs to happen next then is you really need to have clinical insight. And I can give you that clinical insight.
Patrik: You really need to start advocating for your mother on a clinical level. It’s great that you want her home and I’m all for home care. I’m all for home care.
That’s one of the things we’re doing. But if somebody can’t come off the ventilator and they’ve proven that beyond the shadow of a doubt, yes, I’m all for taking them home. But see your mother hasn’t proven that she can’t come off the ventilator beyond the shadow of a doubt. She came closed once.
Lorietta: So true. And you don’t have any colleagues in the States?
Patrik: No. We don’t. There are agencies out there who can help you, but they’re usually not specialised. And again, from my perspective, yes, I can totally understand why you want her at home. You’re probably sick and tired of this place.
I totally get it. But imagine your mom would be off the ventilator. How much easier would it be to take her home? A lot easier.
Lorietta: A lot. It would be. Yes. Well, just counting down the days until she’s discharged as well. It could be extended because of the Atrial Fibrillation and the infection, but perhaps not.
Patrik: Well, again, it will come down to start asking clinical questions. And it will come down to asking them, “have you done this, this, this and this?”
Patrik: Why are you not trying again? Why are you so quick in sending your patients out? What about their success rate? Do they have any? Probably questions that should’ve been asked beforehand but, you see it’s very easy to give up in a situation like that and just go with what the system suggests to you. Very easy.
Lorietta: I agree. And even the Ambien, I had to make the suggestion, can we try amantadine? Can we try Ritalin to try to wake her up? And now I’m asking if we could try Ambien. Although it’s a sleep medicine, there’ve been some studies that it can help patients. They’re not offering any suggestions.
I’m doing all the work like I’m a doctor or a nurse or so.
Patrik: And it’s-
Lorietta: And also, I’m sorry.
Patrik: No, no. Must be very frustrating for you.
Lorietta: It is so frustrating. And the cooling, the process when they come in and, cardiac arrest and they cool the body or stuff. That option was never given to me. In fact, about a week after the event, I was researching and I have no idea if she wasn’t a candidate, they
still should have said, “Lorietta, this is an option but she’s not a candidate.” When she was in the emergency room.
Lorietta: I was never told anything about that procedure. I would have said, “let’s try it.”
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Patrik: Absolutely.
Lorietta: Try it. So they dropped the ball on that. And anytime I bring it up they try to change the subject. But, I have to work with what I have now and not look back, it’s just… Where am I.
Patrik: I’ll tell you what the options are. In some instances people ask me to work with them in person and I do a bit of travelling at times then I might charge a daily fee.
Patrik: In your situation, I believe I can help you over the phone and then I have several phone options. And again that includes talking to the doctors with you, talking to you of course.
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Lorietta: I see. Okay. And what about any other issues? Like let’s say you call, I put you on speaker phone and I say this is my friend and the doctors say, “Oh, we can’t talk to him because we don’t know him.”
Patrik: Good question. And I’m glad you bring it up. So, two answers to that.
Number one, I can hear you are intimidated by them. I can hear it. You need to stop. You need to change the way you talk to them and you need to change your expectations. That’s number one.
Patrik: You need to change completely how you talk to them because I can hear you are intimidated by them and this needs to stop. Because you’re doing what everybody else is doing and they know that’s how they get what they want. They try and intimidate people.
Patrik: You need to start thinking that you’re in charge and you need to act accordingly. And I will help you with that. But the minute you are intimidated, the minute you play their game, you’re gone. They will walk all over you. Some games in life you don’t play in order to win.
Lorietta: It makes sense. That makes sense. Yes. And what about with the scheduling? For example, I don’t know what time they’ll come. They can come in at nine or 10:30 or noon.
Patrik: Well, I’ll make a suggestion for that. You tell them when you are available. It comes back, to you changing your communication with them.
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Lorietta: Very good. Okay. I can step up and they say, “Oh, we have 30 other patients, we’ve got 15 other patients.”
Patrik: So what?
Lorietta: That’s true.
Patrik: Because the other 30 patients or the other 30 relatives are not demanding.
You need to start becoming demanding. And I’m not advocating to burn bridges or being rude to people. I’m not advocating for that at all. I don’t want to be misunderstood here but at the same time by being intimidated by, quote unquote playing their game. It’s not getting you anywhere.
Lorietta: Thank you. Well, okay, so tomorrow is Friday. They can’t discharge, we don’t have anything in place. We haven’t been trained so, and I will be out of town Monday through Wednesday, so, maybe to buy some time or so. I’m maybe chatting with the doctors tomorrow or Monday.
Patrik: Absolutely. But, I think you also need to be, we need to be clear on what we want to achieve. I think, because it always helps if we work towards a clear goal.
From my perspective, and I’m not trying to impose any goals on you. But from my perspective, again, they need to try to get your mom off the ventilator again. If that fails, God forbid, then you can start thinking about home care, then you can start thinking about “what do I need to do?” But you should always aim for the best case scenario. And the best case scenario is to get your mom off the ventilator.
Patrik: The other thing is if your mom gets off the ventilator, it will also increase chances to get her to, you mentioned about the neuro rehab place earlier. Yes.
Some neuro rehab places can look after tracheostomy and ventilation, but it’s not the norm. It’s the exception rather than the rule.
Lorietta: Okay. A neuro rehab.
Patrik: Everything gets easier once your mom is off the ventilator. Yes, as I said, I’m all for home care, including for patients on ventilation but if you can avoid that in the first place. Again, how much better is that?
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Lorietta: That would be.
Patrik: Home care is challenging without a ventilator.
Lorietta: True. I agree. And what about when I email, if I could just CC you on some of the emails or for general questions and things like that.
Patrik: Yeah. I can tell you what I also offer. I also offer email consulting only. I have that too. Or you can do a mixture of both. You can also sign up for the seven day option that gives you phone and email access to me.
Lorietta: Excellent. Well, I just appreciate all of your help and in speaking with me.
I’ll make a decision probably this evening or early tomorrow and try to figure something out. I just thank you so much.
Patrik: You’re very welcome. What I’ll do next is I will send you an email just with the consulting options that we discussed and then you can decide from there.
Lorietta: Thank you. I wish that you would branch out more in the States as well.
Patrik: We will eventually. We’re just not there yet, but I can tell you we’ve got loads of inquiries from the States, loads.
Lorietta: Oh my goodness. Well, my neighbour where I live, he is Australian. Well he was born in South Africa, but then he was raised pretty much in Australia and he’s a Weber. So I would love to visit Australia eventually. I have had the opportunity, but it didn’t work out last year and I just had a full plate as they say.
Patrik: Look, it’s a beautiful country. No doubt about that, so is the United States.
I’ve been over there.
Lorietta: It is. Yes. It’s lovely as well. But thank you. Please send me the information.
Patrik: I will.
Lorietta: I’m so glad we were able to communicate this evening and thank you for all of your help and your time, and we’ll get back in contact with you.
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Patrik: Okay. Thank you so much. All the best for now.
Lorietta: Thank you.
Patrik: Thank you. Bye bye.
The 1:1 consulting session will continue in next week’s episode.
