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 Are the Odds of Keeping My Sister in ICU on a 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 in ICU on a ventilator and
sedated for three weeks now due to ARDS. Joyce is asking if they can bring her sister home if she can’t have a tracheostomy.
My Sister is on Sedation and on a Ventilator for Three Weeks Now in ICU. Can We Just Take Care of Our Sister at Home?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Joyce here.”
Part 1
Part 2
Part 3
Part 4
Part 5
Patrik: Pleasure. I want to help wherever I can help. It’s a difficult situation. There’s probably no right or wrong answers. There’s only the right answer for you as a family.
Joyce: Yeah. Well, thank you so much for the thing and I will contact you tomorrow. Send me that information.
Patrik: I’ll send you that information.
Joyce: I’m on the ground running and we’ll figure this out till the end. So I will contact you again and probably take another session with you as well, so we can stay on top of everything.
Patrik: Okay, I’ll email you that information now. Thank you.
Joyce: Thank you, Patrik.
Jane: Thank you.
Jojo: Thank you.
Patrik: Okay, all the best. Thank you. Bye.
Jojo: Bye.
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Patrik: Hello. This is Patrik of Intensive Care Hotline.
Joyce: Hi Patrik. This is Joyce.
Patrik: Hi Joyce, any updates with your sister?
Joyce: Well, so the doctor said she has a fighting chance, the only fighting chance she has. So he always Zooms with me every day, this palliative care guy. Today he actually called me, which is strange because that means he left all my siblings out. He just called me directly. So I’m like, okay. So we spoke to him and he said, “Look, we’re going to have…” I remember they were looking for someone to actually do it. And I was being very pushy
about when is the guy going to do it? He’s in the numbers. Let’s do it. Let’s do it because we don’t want to miss time. He said that they finally found a consultant, a trache guy who will…
Patrik: Do the trache.
Joyce: Today she’s going to get evaluated. And the doctor will call me and tell me the evaluation. But he said, “I want you to know that the decision you’re making,” he goes, “it’s not the magic pill you’re going to hope for.” You go, “It’s just geography from here to here, and it’s still going to do the same thing. And her lung condition is very bad, it’s ARDS,” whatever.
Joyce: And I said to him, “Well, it’s COVID and how do you know that? How do we know that time is not going to be on our side?” He says, “I can tell you.” He goes, “Yes, COVID is new and we don’t know how it’s going to turn out, but the ARDS lung has been around for 100 years and most of the time, we know how it plays out. And I don’t want to set you up in a way that you’re just changing from here to here, geometry, but the air is still blowing into the lungs. And now you have a lung pocket that she still will be heavily sedated.” Now, which I didn’t ask
him, because today he took off the sedation a little bit and my sister was coughing.
Patrik: Your sister was coughing?
Joyce: A little bit coughing. So they obviously turned it up really high again, because they don’t want anything to collapse or whatever. So he goes, “You’re going to just move geography, and you still might be in a sense where she’s still heavily sedated and never going to be off the sedation.” But I’m confused because I saw some of your videos and I know that you say, watch everybody’s doing and do something different. I got that from your
videos. And I just want to make sure that I’m seeing it clearly because I don’t trust anybody at this moment.
Joyce: I said to him, “Well, from your expertise…”I don’t want to go down to get to a point six months from now, 80 pounds in a nursing home with bedsores,” which play with your mind of how awful that would be. And I said, “Well, is it the odds of her having time and aside to repair this, is it kind of like Jesus walking on water?” He goes, “I can’t say 0%, but you’re very close to it.”
Joyce: So I have to talk this out with you. And then I brought this up to my siblings. And he totally made me change my mind in saying, “Oh my God, maybe I shouldn’t do this.” And as I’m speaking to my siblings, they’re still very like, “We can’t.” And I said to him, “I don’t want to be pulling the plug. I can’t. And he said, “Well, it’s not like pulling the plug. We’re very good at what we do at keeping people alive. Your sister should have
died a long time ago because she… Blah, blah, blah.”
Joyce: Brought this up to my siblings. They’re still in the mindset of, we’re going to let God do what he needs to do. Because if his spirit goes, it’s going to be on his watch and whatever. I am so conflicted because I’m a person different than everybody else in my family. I think 10 steps ahead because the doctor tells you, make a decision right now, but that decision has consequences. Like you said, they’re good at keeping people alive,
but at what cost? And I don’t know if I can… My life is on pause at the moment. So to let six months go and see the deterioration, it doesn’t serve me as well.
Joyce: And one idea I have is if we do the trache and it comes home in hospice, I said, well, do we have an option if you do the trache and then have her go when we’re… Listen, we want to touch her. We want to see her. Even if she is dying, we want to be next to her. So I said, “Is it possible that if we choose not to do the tracheostomy, can we bring her home?” He said, “She’s not stable. She’s so unstable that she won’t even make it the ambulance ride.” So I’m like, “Okay, so that’s not an option.”
Joyce: So give me a non-biased, straight up situation. Where am I? And what the hell do I do?
Patrik: Look, Joyce. I tell you what, like you said, ICUs are very good at keeping people alive. They’re the master at it, which is why so many people survive. Never talks about quality of life, it only talks about pure survival. ICUs are very poor at predicting what’s happening in the future with all… We’re all very poor at what to predict the future. ARDS, the survival rates have increased in recent years, but it’s still probably one of the
conditions where the survival rate is probably reasonably low compared to other conditions. You do a trache and you give your sister a fighting chance. I do believe what he’s not telling you is most patients when they have a tracheostomy, they end up in LTAC we talked about on Sunday.
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Joyce: He told me about all that.
Patrik: Right, but your sister is probably in such a poor condition at the moment that she’s not a candidate for LTAC, even if she has a trache. Did he say that as well?
Joyce: Well, what I said about hospice, let’s just say, he said, “She would have to be in such a stable condition to even make it to your house.” So what made me believe it, that she’s not really stable, what it seems like, if you’re stable to go to hospice and you’re stable to go LTAC, you have to be stable. And what I’m gathering is that she really isn’t stable. So I don’t see him shooting off to LTAC.
Patrik: I don’t see that either. So your sister on that level matches almost the worst case scenario, just on a management level. So what that means is most patients end up with a trache and they go to LTAC. So the ICU’s problem is solved. Sorry, by doing that. The ICU’s problem by doing a trache is only getting bigger because your sister can’t go to LTAC, meaning she’s going to occupy a bed there for longer than they would want. This is what
she’s not saying. Your sister is-
Joyce: I believe that. And I’m thinking, and Patrik, listen, I’m a business woman. I read situations. And the fact that the first time in three weeks he called me on my cell phone versus the Zoom, I have to say that, that was strategic.
Patrik: He matches the worst case scenario for them. He’s in a situation where they could treat her for a long time to come with an uncertain outcome. That is their worst case scenario.
Joyce: Why? Let me ask you a question. An ICU bed has the same amount, the money is the money. What do they care if it’s my sister, or if it’s another person? Why does it matter? They’re still getting paid.
Patrik: Yeah, they are paying, but there is the risk that the longer a patient stays in ICU, the less money they get.
Joyce: This is not her hospital. This is not her hospital. She has the one which basically have the ambulance. It is a better hospital, smaller but better. So she can be in a better facility, however, she’s probably not even stable to be moved.
Patrik: Yep. I’ve dealt with many clients from all walks of life from different places. I have a little bit of an idea how it is in other facilities. But at the end of the day, she’s matching their worst case scenario. So yes, you’re right. What’s the difference? Payments usually get lower, the longer time patients spend in ICU. I guess they would also look at it from the situation, I don’t know, the COVID is going rampant in most
places.
Joyce: They have no beds, it’s war zone. And he’s probably like, look, my sister’s probably not going to make it. And why should we waste a bed on a patient who’s just going to dwindle away?
Patrik: Yeah. And at the end of the day, they know that they are at your mercy in terms of giving consent. So they know they have little leverage to say.
Joyce: So let me ask you a question. So do I say, screw her and let’s try the trache anyway, because listen, what do I have to lose? If I lose her anyway, I lose her anyway.
Patrik: You see, the other thing is withdrawal of treatment, if for whatever reason she’s not getting better-
Joyce: You can always do it later.
Patrik: There’s no rush in withdrawing treatment. But ICUs are always in a rush, always because the pressure on ICU… All the time I worked in ICU, in those 20 years, you discharge a patient and the next patient comes in, and that is outside of COVID.
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Joyce: Okay. So basically… Here’s the thing. If I can even get her trached, and let’s say I get her trached and then it’s… Here’s where I’m at. If I get her trached and she has to go to LTAC and she’s really doing poorly, I’m going to bring her home and do hospice. That’s what I want. But I will not let her go to LTAC. I will keep them in the ICU as long as I can, because I know, she is there to get the best care. If at one point it’s going
so downhill and I’m three weeks into it and I’m like, “Oh my God,” I will bring her home, and you can do some investigating. I don’t know if you have anybody, but I’m sure you know more than I would.
Joyce: And then we would be able to set up a hospice situation for a period of time where we can physically see her. But you’re right. So you just set my mind up in saying, why not take this case scenario? Because I still have my sister every day. Still get to FaceTime, I get to see her. She’s still sedated. She’s not suffering. Why not try? But he was so good at grabbing my mind today. He really painted me the worst… He really painted my
sister-
Patrik: They’re fantastic at painting the worst case scenario. They’re the master at it because they have to. They’re the master at making you feel guilty, they’re the absolute master at that, because that’s how they manage their beds, unfortunately.
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Joyce: Okay. So screw that. I’m not giving up. Right now I’m going to wait for the guy to see if my sister can be a candidate for tracheostomy. Can they lie and tell him that she’s not for a tracheostomy? No. Right?
Patrik: No, they can’t lie, but they will have to make an assessment. Somebody has to do with the stricture and somebody has to look at-
Joyce: No, the doctor will today.
Patrik: Right. Okay. So if they have-
Joyce: So they can’t say like, “Hey, tell them…”
Patrik: Oh, it’s got to be, look, if there’s anything you think is fishy, it’s probably fishy. You got look at what they say, but-
Joyce: I thought it was fishy that he called me. I thought it was fishy that he did not… If it was so important for him to say what he had to say, why not say it in the Zoom call? Because he knows I’m-
Patrik: Visual.
Joyce: Visual. But why not put it in a Zoom call where it’s so critical? You know what I’m saying? And he was very good at making me change my mind. And I called my sisters and I’m like, okay. And then when I called you, I said, “I have to talk this out with you,” because I was almost jumping the fence from the tree.
Patrik: Joyce, I’ll give you a quick example. I had a client call me just on the weekend as well. We were working with this client this year, earlier in the year, for a long time. The client’s mother was 99, was in ICU before COVID but then ended up with… Cutting long story short, had the trache and they were fighting for their mother’s life. Bear in mind, she was 99. She passed away in November. She called me a couple of days ago. She said,
“Look, I know my mom suffered in the end, but I’m so glad I kept advocating, I kept advocating because the time that we had with our mom was just invaluable,” from their perspective.
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Patrik: Even I at the time thought, he’s 99, but they saw death as a failure. And I just said, “Look, death is not a failure. It just is.” But in retrospect, she called me up and said, “Look, I know my mom suffered, but I’m so grateful, we had every minute we had with her.” And even though in the end, they could only do FaceTime as well because of COVID hit, that was her feedback. I’m an advocate at the end of the day, but I-
Joyce: Because we really just got a tripod in the room, connected an extension cord. What happens is the battery runs out. But my sister is with her, watches her 24 hour surveillance, and we log on to the call and we talk to her and my mom talks to her. So having that has been an emotional safety net where we’re still able to come together as… Listen, my sister was the biggest… The way she handled our family was so… We are very united. We are
very together. I have tons of videos of her saying, “Get along. We’re together.” I mean, my sister has given us everything. So the thought that we won’t be part of it is just crazy.
Patrik: This is another thing that I find all the time as well, Joyce. I get so many phone calls where people see my videos or whatever, and they say, “Oh, yesterday my dad died. My mom died. We’ve even consent to withdraw treatment. They’re said, it’s all hopeless.” And then they realize once it’s too late, they realize, “Maybe I should have hold on just for a few more days to come to terms, to make peace with the
situation.” There’s so much attached to it. ICU just sees it from, “Oh, well they won’t have any quality of life. You don’t know when you’re going-”
Joyce: All right. You know what? Screw that. Okay. I’m back on the saddle then. I don’t know why he did that to me.
Patrik: He needs the bed. Sorry. He needs the bed.
Joyce: So strategic too.
Patrik: Oh, very strategic. They have to be strategic.
Joyce: He was so strategic, because he called me directly and knew that I’m… you know what I’m saying? All right. Well, so now what do I do? I just wait for the doctor to call me and then just say, “Screw it, you do it.”?
Patrik: Yeah. Yeah. There’s so many-
Joyce: Let me ask you a question, do you think that she could get out? I mean, I know you don’t know the whole thing, but she’s been a month, she’s been three weeks in ICU. She has this condition. She’s been able to keep it. This morning she’s at FiO2 55 and 8 PEEP, which by the way, if the situation was getting worse, wouldn’t her oxygen level would require more? I’m telling you they have not had somebody in this position because I asked way
before, I said, “Joey, what’s the longest patient you had in this condition?” He said, “21 days.” My sister is at day 20. The other patient at 21 days was at 16 PEEP. So they were never a candidate. And the nurse said they only did a tracheostomy to somebody once in all of eight months. So I guess this is also a smaller hospital. So maybe-
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Patrik: Okay. That would’ve been my next question. That would have been my next question.
Joyce: It’s a smaller hospital. So they said they did tracheostomy to one person throughout the whole eight months. So I don’t think my sister is their typical case because she’s still showing… He says, “Why move your sister, she’s so unstable?” But she’s still showing that she’s staying at 55. So if it was getting severely worse, wouldn’t the oxygen jump up at 80 to 100?
Patrik: No, not necessarily. If it was getting worse, her CO2 would probably go up. Her carbon dioxide would probably go up as well. Not necessarily oxygen would go down. So there’s two indicators when someone is ventilated that you’d be looking at. Number one is oxygen levels in
the blood, but also carbon dioxide level in the blood. So I would want to know what her carbon dioxide levels are. You don’t necessarily have to go up with oxygen. If carbon dioxide goes up, you will see the-
Joyce: Is that the oxygen in the blood?
Patrik: No, no, no, no. Carbon dioxide is what we exhale.
Joyce: Okay. So hold on. Can you… wait, carbon-
Patrik: Yeah, I can email that to you.
Joyce: Email it to me, because I’m going to ask them.
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Patrik: Yep. So I don’t think it’s carbon dioxide is that bad with the people of… Now that you mentioned she’s in a small hospital, how many ICU beds?
Joyce: I didn’t get the number, but I am sure that-
Patrik: 10 or less?
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
