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
Where Do We Start from Weaning Our Sister Off the Ventilator?
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 Joyce, as part of my 1:1 consulting and advocacy service! Joyce’s sister is still on a
ventilator and now with a chest tube. Joyce is asking if it’s time to stop the life support for her sister on a ventilator.
How Will We Know If It’s Time To Stop Life Support For My Sister on a Ventilator?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Joyce here.”
Part 1
Part 2
Patrik: Unfortunately, what I could see across the board is it’d probably fall on deaf ears because they’re not doing it. But you got to keep doing what is right.
Joyce: I’m going to really get on the doctor and really fight for it. Because they keep canceling physical therapy because they said she’s not participating and the nurses are doing range of motion. They’re not doing it.
Patrik: All right. Who is in-charge medically? Who’s making the decisions medically? Pulmonologist?
Joyce: No, she has a main doctor and then, she has a pulmonologist, and then she has infectious disease. But the main person is the doctor or the pulmonologist.
Either one of those I believe can write an order for a physical therapy. So, I’ll stay on top of it tomorrow and get on top of it. I just feel like I’m not being listened to.
But when I’m going to be in their face tomorrow, I’ll get the doctor to come on the phone and order it like, right now.
Patrik: Right. Maybe just for you to illustrate why I sort of keep coming back to the mobilization, so because the system that I work in, there are no LTACs, so you had to get patients off ventilation and ICU. There was no other choice.
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Joyce: Right.
Patrik: Right? So, you had to be aggressive from day one. There was no LTAC to compensate for the failures of ICU.
Joyce: Right, right.
Patrik: The system there in that sense is flawed.
Joyce: I know.
Patrik: Completely flawed. There are people of course that falls through the cracks because you know, I talked about MND earlier, motor neuron disease. It takes spinal injuries. There are people that will never come off a ventilator, of course.
Joyce: I do. My sister, this is just COVID and they did say her lungs are scarred by my question is, if a lung scar can eventually heal. They said the scars never go away.
Patrik: Well, it’s a bit like when you take a scar on your body, the scar is there but the skin is healed.
Joyce: I like that. We can look at possibly get off still.
Patrik: Say that again?
Joyce: I was saying, because you’re like this, like it’s going to be really hard or …
Patrik: It’s going to be hard. There’s no question that it’s going to be hard without physical therapy, without somebody driving this. It sounds to me like nobody’s driving this.
Joyce: Well, they’re bringing it down but I don’t think they’re moving her body by doing it. Now, when we’re at this level, now I’m going to push. I’m going to push, push, and push because now, I see a little hope. Before, she was so high up in the ventilator and she was 100% support that was the point. But now that she’s on pressure support and we’re getting close to the finish line or whatever line we’re getting at, I’m going to push
tomorrow. If I have to move her hand myself, I will freaking take videos and I swear to God, I’ll do it myself, if it’s just a matter of moving her body. But I got it. This was helpful.
Joyce: The next thing I’ll follow up with you is I’m going to be there maybe you can … I’m going to set up a laptop. I’ll bring a laptop in the hospital and I’m going to prop it up, and we’re going to look at it. I’m going to try to get someone to listen to us and let’s see. As crazy as that sounds, that’s what we’re going to have to do.
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Patrik: No, it’s not crazy. It’s just what needs to happen.
Joyce: Okay. Then, that’s what we’ll do. I’ll just have to coordinate time with you. I have to coordinate your time and I’ll have to coordinate my time with the hospital.
Patrik: Yeah, you would want to see your sister during the day.
Joyce: It has to be during the day.
Patrik: Yeah, that’s fine. That’s fine.
Joyce: And I know how screwed up your time would be.
Patrik: That’s all right. We’ll work it out. We’ll work it out. Have you got a particular day in mind?
Joyce: No. Tomorrow, I’m going to go in there. I want to situate physical therapy.
I’m going to give it a couple of days to see where that goes. Then, I’m kind of ride the wave for this week, if something happens overnight. Today is Monday, so maybe towards the end of the week. That means tomorrow, I need to go in there and kind of smell and see what’s going on with my physical therapy. Then, I’ll talk to her about the propping her up as much as I can at the moment. Then, you and I will get in. I’ll see what my resistance is and who, what, where
I’m at. If I feel like they’re open to it, and I feel like I have a playing partner, because you and I could talk about it but if no one’s really going to do anything with her, what’s the point?
Patrik: Yeah, yeah.
Joyce: I need someone to play with me to actually listen to us.
Patrik: Absolutely.
Joyce: You know what I mean? I need all the doctors to, maybe the really sweet pulmonologist that’s really good with my sister. But then again, it’s like a very sensitive topic because I don’t want this person coming in telling her what to do.
Patrik: Very sensitive.
Joyce: I don’t know. I don’t want them to take off these visits with me, too. There’s only so much we can push the line because they can cut me out and shove me out.
Patrik: Yeah, yeah.
Joyce: It’s a very sensitive subject.
Patrik: They can dangle the carrot.
Joyce: Oh, yes they can. They sure can. That’s why I don’t want to rock the boat.
Patrik: Yeah, yeah.
Joyce: I try to, you know. It’s my sister. I’m going to get her out of this.
Patrik: Yup, no.
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Joyce: Listen, I can’t believe we’ve been in this so long. I’m just..
Patrik: This could go on for a long time, Joyce, especially with..
Joyce: Stop saying that. I get so nervous when somebody says that. I don’t know what that means.
Patrik: And neither do I know what it means. But we’ve had a client, I was dealing with a client a few weeks ago. It was the client’s son. He was in his 20’s. It looked like he couldn’t come off the ventilator for a long time and then, all of a sudden, he turned the corner but bear in mind, and he was young at her 20’s.
Joyce: I do know the odds are really bad if I’m four months into it.
Patrik: No, no. I don’t think
Patrik: Listen to this interview that I sent you. Please listen. Once you’ve listened to it, maybe share it with your family as well.
Joyce: Yeah.
Patrik: This person is unbelievable.
Joyce: Let’s just hope my sister has the strength. I mean, one thing I want her off the ventilator but what about her hands and her feet? I wanted her to be able to move those like, I know on that part, I’m very wrong. Right now, I want her off the vent because I want to hear her voice. I feel like if I could hear her voice, it will change the game plan. She could communicate with us, she can do … I know we have a long way to go. I’m sure we
even have years. I just want her off the vent. If I can get her on a talking tracheostomy and eating Gerber or eating whatever, wherever it goes, I just got to hear her voice. I want the vent removed. That’s my goal. I know that the long way, I know that it’s going to be very long. But the ventilator better not be that long. I don’t know what long is. I
don’t know if it’s a couple of weeks is fine. A couple of months..
Patrik: With everything that you’ve shared so far, I would argue it’s going to be a little bit longer than a couple of weeks. I can’t see that it would be a quick fix.
Picture this. She’s been lying in bed for long or whatever you said. She has no upper body strength. She can’t breathe. She needs that upper body strength to begin with.
Joyce: Okay.
Patrik: Physical therapy also includes not only the range of motion, it also includes a physical therapist to do breathing exercises with her.
Joyce: What breathing exercises?
Patrik: Take a deep breath in, breathe out slowly.
Joyce: But I don’t think she’ll be able to do that because she was on 100% support.
Patrik: Yeah, I thought that. But then again, this is where the skill comes in where you change the ventilator settings for a short period and you let them do a little bit of more work. You can see, it’s very specialized skill.
Joyce: I know. But it’s like, you’re telling me this often and I want it done, and I’m like in jail, I want to rip my hair off because I don’t know who’s going to do it for her.
Patrik: Yeah.
Joyce: I’ll figure it out.
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Patrik: There must be people there that have done this.
Joyce: I’m going to get them. Whoever it is, I’m going to find them. I’m going to find them and then figure it out. I just have to know what I’m talking about. I just don’t want to be shut down that I don’t know what I’m talking about, because they can shut me down in two seconds.
Patrik: For sure.
Joyce: I need an explanation why and how, and what.
Patrik: For sure.
Joyce: Okay, listen, Patrik. This is not a one-time thing. You and I are on this journey together and we’ll figure this out. That’s why I love that you’re in my corner and I feel like every time I talk to you, you know, I always feel like I’ve much to talk to you about today, you gave me a lot. You know what I’m saying? I was like, okay.
It’s a cute, little update. But you gave me enough meat on the bone to figure out what to do.
Patrik: There’s so much I can … As you can see, there’s so much I could talk about. There’s so many nuances. It’s fine tuning. Fine tuning.
Joyce: I know, but you’re still there. Okay, last question is this. Do you think my sister is fighting or do you think we’re just kind of keeping her hostage? Do you think there is a component of fight … I just want to ask you that because you’ve seen a lot with seeing these things.
Patrik: Oh, yeah. Look, there’s two components to answer your questions from my perspective. Number one, if she’s alive, she’s fighting.
Joyce: Right.
Patrik: The other question is this, and it keeps coming back to potentially keep having that uncomfortable or moving even to that uncomfortable part and saying, “Hey, sister. How much more do you want to take?”
Joyce: Yeah.
Patrik: And that’s need to be done in a gentle way. Like you said before, I mean, I was very undiplomatic when I said, just ask her. I know it’s not the simplest to just ask her. It’s a matter of slowly maybe-
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Joyce: But the problem is, if my parents are not going to do it, what’s the point of asking if you want dessert if you can’t have it? I can’t ask her how much you want to take when I’m not going to do it, when I’m not going to relieve her suffering.
Patrik: Let me ask you this. Let me ask you this. Do you think she’s suffering to a point where she can’t or doesn’t want to tolerate it anymore?
Joyce: I think two weeks ago, that’s exactly where she was, when she was gasping for air like a fish. And she would look at me saying, “Call the front desk. I cannot breathe.” She would know how to communicate with her eyes. She goes like this, and they could not figure it out. She just was so uncomfortable. She wanted to die. Honestly, I even prayed that she did. I was like, I can’t see her this way. But now that this week, she’s more
relaxed and she’s not breathing like a fish, I feel like she’s more relaxed. Two weeks ago, I prayed to God that something would’ve happened. She was breathing like a fish and I think that had to do with something with the chest, something with the air, and something with whatever.
When the chest tube was placed, she’s more relaxed. It would not make sense, right?
Patrik: Yeah, absolutely. Absolutely.
Joyce: She was literally gasping for her last breath and nobody could figure out why. So, two weeks ago if she had that mental strength, she would’ve pulled things out and it would’ve been done.
Patrik: Yeah.
Joyce: But this week, better. That’s why it’s an everyday thing.
Patrik: It’s terrible. It’s terrible. I mean-
Joyce: Normal people, wholesome, never had big problem in my life, to get this card out of any card, I wish she would’ve given me something smaller. This is the holy grail of cards.
Patrik: Huge. But keep in mind, this is what I’ve been seeing for the better part of 20 years.
Joyce: I can’t believe you deal with this. You have to have thick … I just can’t believe it. I got to be honest with you. I watch your videos and like, “This guy’s a little crazy.”
Patrik: Probably.
Joyce: She’s talking about things that you’re like, “Oh, my God. She’s so … “I’m just saying like-
Patrik: Yeah.
Joyce: Right. When you’re not exposed to any of this, and all this crap you’re like..
“What is she … ” and you made it so normal. Now I am 102 days into it, my language has changed. My view has changed. I’m completely different because I didn’t even … She wasn’t even in the trach. Remember we were like considering, do we trach, do we not? It’s become normal. But what I’m scared is that I’m going to desensitize myself so much that I’m going to lose this side of who my sister was.
Patrik: Of course.
Joyce: And what you still want and I’d forget about who my sister was. It makes me so sad because I forget who she was.
Patrik: Yeah, and this is a process of adjustment.
Joyce: Yeah, and it sucks because I’m fighting and I don’t know what I’m fighting for.
Patrik: And you’re fighting it. At the moment, I believe you’re fighting for life, you’re fighting for prolongation of life not really knowing where it leads you to.
That’s what it is.
Joyce: I just don’t know if I’m doing the right thing.
Patrik: Yup, nobody knows. But the reality also is, like I mentioned to you in the beginning, when we first spoke a few months ago, the time to stop life support was then.
Joyce: Why do you say that?
Patrik: I said it to you then. I said, because if she leaves in a couple of months’ time, she’d probably be better. I’m pretty sure I mentioned it then. I said, if you want to stop life support, the time is now because if she survives, you’re opening up a can of worms.
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Joyce: You did say that. You said because things are going to get progressively better but it’s still going to be slow and you’re not-
Patrik: And more complicated, more complex.
Joyce: It is. But it’s okay. I’m still happy. I’m very happy. In fact, I still have moments with my sister. I get to see her. She gets to look in my eyes. So, okay.
Patrik: All right.
Joyce: I love it. Patrik, we’re going to figure this out. I’m going to coordinate with you again. Let’s do, I think maybe a hospital … or maybe I will have somebody on the call and maybe you can give me tips as you’re looking at her.
Patrik: Yup, yup.
Joyce: You can give me tips without-
Patrik: I can text you while I’m looking at her. I can text you.
Joyce: Yeah, no. We can speak if we’re just … you and I in the room. We can have a little conversation. You could be like a cousin from wherever.
Patrik: Yeah.
Joyce: And really, we’ll take notes. Then, you give me small things what we can control and I can ask them, “Slowly, can you move the bed up?” Can you whatever, I don’t know, work with me knowing that these people are maybe not so skillful like you? But let’s come up with a game plan that won’t be abrasive. But you know what I’m saying? You’re telling me to get the best top model, but I can’t do it because I don’t have people to
operate it, right? We kind of have to figure out how to deal with what we have and how we can manipulate the system to get what we want, without them not … because they’re going to be like, “I’m not going to put her up. I don’t feel comfortable.”
Joyce: So, maybe we can manipulate and figure it out because I’m scared if we tell them, “Put her in a chair,” and they’d go laugh at me.
Patrik: Yeah.
Joyce: Because they don’t have the same training you did.
Patrik: They don’t. They don’t.
Joyce: I know, but that’s the problem.
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Patrik: They see LTAC. That’s all they see.
Joyce: I know but that’s a problem, Patrik.
Patrik: Oh, big problem. Big problem.
Joyce: I wish I can fly my sister out there and have you take care of her I don’t want to sell myself something I can’t have.
Patrik: I hear you.
Joyce: I want to have my sister and let’s figure out how I can get what I need.
Patrik: Yup. All right. Joyce, I need to run. I need to run.
Joyce: Okay. Bye, Patrik. Talk to you later.
Patrik: I’ll wait to hear from you. Okay. Take care.
Joyce: Thank you, Patrik. See you. Bye.
Patrik: All the best. Thank you. Bye.
Joyce: Bye.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
