Patrik Hutzel Live Consultation: My Dad's in ICU on ECMO (Extracorporeal Membrane Oxygenation) After Cardiac Arrest Can He Survive?

Patrik Hutzel Live Consultation: My Dad’s in ICU on ECMO (Extracorporeal Membrane Oxygenation) After Cardiac Arrest Can He Survive?

Patrik: Hello and welcome to another Emergency Questions and Answers for Families in Intensive Care and Intensive Care at Home. Thank you for joining today’s call and also a warm welcome to everyone being live on the call. And also thank you for anyone watching this on replay. We get a lot of views on replay I’ve seen, but for last week’s Emergency Questions and Answers for Families in ICU and Intensive Care at Home, we had around 120 replays, so thank you so much for that.

Now, before I go into today’s questions that I can already see in the chat pad, what makes me qualified to host an Emergency Questions and Answers for Families in ICU and Intensive Care at Home? My name is Patrik Hutzel. I’m a critical care nurse by background. I have been working in critical care nursing for over 25 years in three different countries where I worked as a nurse manager for over 5 years in intensive care and critical care. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.

I can very confidently say that we have saved many lives for our clients and members over the years. We have helped hundreds and hundreds of members and clients over the years here at intensivecarehotline.com. You can verify what I’m saying is accurate by just looking at our testimonial section at intensivecarehotline.com. You can also look up our intensivecarehotline.com podcast section where we have done client interviews. We also have a membership for families of critically ill patients in intensive care, and you can become a member if you go to intensivecarehotline.com if you click on the membership link, or if you go to intensivecaresupport.org directly.

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I’m also the founder and managing director of intensivecareathome.com. With Intensive Care at Home, we are providing a genuine alternative for a long-term stay in intensive care, predominantly for long-term ventilated adults and children with tracheostomies. We send our critical care nurses into the home, 24 hours a day, and we replicate an intensive care bed in the community for once again, predominantly long-term ventilated adults and children with tracheostomies. But also for Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), home tracheostomy care, tracheostomy without ventilation, Home TPN (Total Parenteral Nutrition), home IV magnesium, home IV potassium infusion. We’re providing port management, central line management, Hickman’s line management, PICC (Peripherally Inserted Central Catheter) line management. We are providing management at home for nasogastric tube and for PEG (Percutaneous Endoscopic Gastrostomy) tubes. We’re also providing palliative care.

With Intensive Care at Home, we are currently operating all around Australia in all major capital cities, as well as in all regional and rural areas. We are NDIS (National Disability Insurance Scheme) approved, TAC (Transport Accident Commission) and WorkSafe in Victoria, iCare in New South Wales, as well as NIISQ (National Injury Insurance Scheme) in Queensland and DVA (Department of Veteran Affairs) all around the country. Our clients have, and we, as an organization, have also received funding through departments of health, public hospitals and private health funds.

Before I answer today’s questions, if you like this video, if you want to support what I’m doing, subscribe to my YouTube channel for regular updates. Click the like button and leave comments and let me know what you want to see next.

Now, without further ado, I’ve got questions here from Leanne Owings. Leanne, thank you for joining, and let me answer your question. So Leanne says, “Hi. My dad has been out of a coma on 35 to 40% of oxygen on 30 of PEEP for 70 hours, sits out of bed four hours a day. Talking about moving that from ICU to ward. Also, everything drops when he’s helped into a chair. He’s feeding tube was removed today. Is there help for my dad? Thank you for any help.” 67, was admitted to ICU with pneumonia. They also said he had a misdiagnosis, ILD fibrosis. Okay, and ILD fibrosis, I just quickly do need to Google the term, interstitial lung disease. Sure. So he’s got interstitial lung disease.

So Leanne, what I don’t understand, he’s out of a coma, is he still ventilated? Now if he’s on 30 of PEEP, he would be ventilated. However, I very much doubt that he’s sitting out of bed on a PEEP of 30. A PEEP of 30, it’s almost not possible. The highest PEEP that I’ve probably seen might be 20, on very, very, very, very rare occasions and only if a patient is generally speaking, deeply sedated and paralyzed. Now that is not what you are describing here, Leanne. I’ll give you another tip. I think I can answer your questions much quicker if you join me here live on the StreamYard link. Click on the link that I just posted there and talk to me directly here. I do believe we can null out your questions much quicker and also clarify much quicker.

“No, I just thought the noise, I might be wrong with that.” Yes, he can’t be on a PEEP of 30, not sitting out of bed, it’s impossible. “Also, sits out of bed, 4 hours a day. Talking about moving dad from ICU to ward. Also, everything drops when he’s held into a chair, feeding tube was removed.” What do you mean by everything drops? What do you mean by that? Can you be more specific? Can you be more specific please?

Okay, he’s now on CPAP. A lot of it also depends how long was he in an induced coma for? How long was he in an induced coma for? Was he in an induced coma for a couple of days, for a couple of weeks, for a couple of months? “His oxygen and blood pressure drops.” Okay, all right.

So, the interstitial lung disease fibrosis, has that been a recent diagnosis or have you known about that for quite some time? Is that a new diagnosis or was the interstitial lung disease and fibrosis diagnosed on this hospital admission when he was having a pneumonia? “Two days off for 12 hours back on for 42 hours.” So I presume you are now referring to the induced coma. That’s not very long, which is good. “Yes, it’s a new diagnosis.” Okay, so this is a new diagnosis.

The question here Leanne is, with an interstitial lung disease and fibrosis, depending on the severity of it, what that basically means is the lungs will be very stiff going forward and they lack compliance because it’s going to be developing scar tissue in the lungs or potentially scar tissue has already developed in the lungs with interstitial lung disease and fibrosis. So, the question here is, what’s next with the fibrosis? So, what is next with the fibrosis is patients often end up on consistent oxygen and also patients sometimes, not all the time, end up on a lung transplant list.

So, is your dad qualifying for a lung transplant? But it also sounds to me like your dad is on a good trajectory right now. He’s on a good trajectory and he’s doing what he’s supposed to be doing. Just scrolling back in your comments, “out of bed four hours a day,” how many days has your dad been out of a coma? How many days has your dad been off the ventilator? Leanne, if you could please answer that question because again, my answer depends a lot on that. And like I say, if you want to join me here and talk to me directly, I do believe we can get to solving your issues much quicker.

Tera, I can also see that you are here. Tera, I will get to your questions very quickly. Tera, the same for you, if you wanted to talk to me here directly, just click on the StreamYard link and I can get you here on video. You don’t need to go on camera, but we can go and talk here directly, which is much quicker and much easier rather than texting back and forth here.

“We’re still working days before admission on building site, two days out and off vent.” Okay, he was ventilated for two days and in induced coma for two days, not a long time. So that’s positive that he came off the ventilator after two days, that is very positive.

So what they need to do next as a next step, Leanne, is they need to look at lung function tests. They need to look at chest x-rays, CT scans of the lungs. Yes, Tera, I think that’s a good idea. If you can join after I’ve answered Leanne’s question, I think that’s a good idea. Need to look at lung function tests, CT scan, MRI scans of the lungs and then determine what’s going to happen from there, and that might be a lung transplant. But I think two days on the ventilator and being off the ventilator after two days for pneumonia plus lung fibrosis, I think that’s a pretty good turnover. I’ve seen patients with lung fibrosis or interstitial lung disease being confined to a ventilator for many days, many weeks, and they end up with a tracheostomy. So that is a positive sign that your dad came off the ventilator after two days.

So I hope that answers your questions, Leanne.

Tera, if you want to join now, I think now is a good time so that we can hopefully look at your dad’s situation. Just click on the link. Do you want me to post the link again here, Tera? I’ll send it here again. Just click on that link and then I should be able to let you.

“He did go back on for two days after 12 hours.” Okay. Still he’s off the ventilator now and he’s mobilising. You’ve got to look at the positives here. You’ve got to look at the positives. “He’s off the ventilator now and they’re talking about him going to a ward.” That’s a good sign. You just need to make sure he stays there. You just need to make sure he stays there.

Okay, I can see Tera is joining here. Hi Tera, how are you?

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Tera: Hi, good. How are you?

Patrik: Very good. Nice to see you.

Tera: Nice to see you as well.

Patrik: Well up to date with your dad’s situation. I’m well up to date. What are your burning questions on top of the emails that we’ve been sending you?

Tera: So one, I feel like I have no rights or they might be being violated. They put him on a psychotropic without my permission. They’ve just been kind of just moving real fast pace and not informing me of stuff. As a decision-maker, I feel like I should be informed of a lot of stuff to make appropriate decisions. So then they pretty much had a meeting to tell me because I’ve been thinking I’m advocating for my dad, and they told me, “You have no say. We do what we want pretty much.” I could see that they’re starting a paper trail of me and how they don’t like me advocating for him. And so then they said that they’re going to take him off of ECMO (Extracorporeal Membrane Oxygenation) tomorrow, I mean Monday. I said that I’m not comfortable with it. I feel like they gave him seven days if he didn’t wake up, they weren’t going to do the transplant.

And so now they’re saying there’s no need for the ECMO because he doesn’t qualify for the transplant now just because they gave them the seven days, but they’re saying organ failure and everything else, but I just haven’t done my research or look up other options and I’m not comfortable with it. I told them I’m not comfortable with it and they said they’re doing it regardless or taking him to the operating room and doing the last test and removing it. I’ve considered calling the state at this point because I just feel like I just have no say in anything and stuff. Yeah.

Patrik: Okay. Couple of questions there, Tera, I can’t remember when we last spoke. Are you the power of attorney?

Tera: My dad signed my sister as the power of attorney, but they supposedly voided it to make me the surrogate decision maker.

Patrik: You are the surrogate decision maker?

Tera: Yeah, because originally my sister said she doesn’t even want it. She doesn’t feel comfortable being the power of attorney and wanted to pass it to me and so they just decided to void it.

Patrik: Okay. All right. Look, the first thing here, Tera, that I want to say is you’re doing an amazing job advocating for your dad.

Tera: Thank you.

Patrik: We can see that. And just because they don’t like it or they potentially keep a paper trail, or whatever they do are things you can’t control. Just focus on the things you can control because you’re wasting your time worrying about the things that you can’t control. You’re completely wasting your time as far as I can see. I think you’re doing an amazing job advocating for your dad. I think when I look at the reports, your dad is slowly but gradually improving. Now, whether he’ll be ready to have the ECMO removed on Monday, I kind of doubt when I look at the numbers. So let’s just say they were going ahead with that. What are they telling? Are they telling you, “Oh, if we take him off ECMO on Monday, he’s going to die.” Is that what they’re telling you?

Tera: No, they’re saying he has a 60% chance of doing well and a 40% chance of not doing well. And then when I told them, “Okay, well I’m still not comfortable,” they said, “He’ll be on the Impella, which will be assisting temporarily but they’re going to just go ahead and remove the ECMO.”

Patrik: If they put him on the Impella, that might be what keeps him going. As long as they have a plan, a lot of patients do end up on an Impella after ECMO is removed.

Tera: He’s currently on the Impella as well.

Patrik: Yes. No, no, you’re right. You’re right. Okay. So that means they can probably safely do remove the ECMO, right?

Tera: Yeah.

Patrik: So do you know if the Impella is for the left side of the heart or for the right side of the heart? I do believe it’s for the left side of the heart, do you know?

Tera: The left side.

Patrik: The left side. So from that perspective, they can take him off the ECMO.

Tera: Okay.

Patrik: Right?

Tera: Mm-hmm.

Patrik: But the question is, what’s their plan afterwards?

Tera: Right. Exactly.

Patrik: That is the million-dollar question. Now also before we look at that, Tera, they are talking about multiple organ failure. The lungs seem to be fine, the heart’s not, the kidneys are not, and the brain’s not. So they will probably try and continue talking about multiple organ failure, which to a degree is accurate. So heart’s not working, i.e. he’s on ECMO and needs to continue on the Impella. We can’t deny that. The brain’s not working at the moment, we can’t deny that. The kidneys aren’t working, we can’t deny that. So have they sort of focused on,
“Oh, he’s got multiple organ failure,” is that what they’re saying to you?

Tera: So they’re not. With the brain, he’s now squeezing hands on, not continuously. He’ll do it in a row and then he stops. But then he’s also doing this type of posture. So one doctor noticed that and then the cardiac doctor came in, he didn’t squeeze for him, and then he noticed the type of posturing, which he says is indicative of brain damage where his hands aren’t going out and he arches his head back and it doesn’t hold. When I did my research, a lot of it they said that the hands need to be clenched and hold, but not holding it’s not as severe. So he probably does have brain damage, but I don’t understand why they were excited about him clenching on demand if they’re saying he’s severely brain-damaged. So I don’t know, it’s kind of off.

Patrik: So when you say he’s squeezing hands, is he only doing that for you or for your family?

Tera: So from what I’ve seen as his reflexes and stuff have been coming back, they don’t start every time. We’ll see it first and then it’ll be consistent and the doctors and nurses see it. So for a couple days ago, I felt it, my aunt felt it, my cousin felt it, and then just today, two doctors and the nurse last night felt it. So it’s happening more often as the days go by. So nope, some providers have seen it, but they’re still saying it’s not purposeful because it’s not every time.

Patrik: Not every time. But you have seen it to be purposeful.

Tera: It’s on demand. You’ll tell him and he’ll do that. We don’t even tell him which hand we’re holding and he’ll do the hand that our hand is in.

Patrik: Okay, so that’s that. And as far as we can see in the reports, he’s also still on sedation.

Tera: Yes, still on sedation, I had researched that Ambien had paradoxical effects, and so neurology gave me the okay to try it, but they dosed it not the way I wanted to because it was supposed to happen within an hour. And so then I said, if it doesn’t do that, so when we gave it to him at nighttime, he went to sleep. At first his eyes were always open. When we gave him the Ambien, he slept through the night and then the next day he was more aware, more agitated, and so then they started to give him Citinol. They started to do a lot more other things. And I told them, I don’t want him on any sedation. I feel that when I researched it said that is a sign of neurological recovery and now he’s clenching, he’s more aware.

And so they had a huge meeting with 15 people including ethics, risk management, and they told me they are going to sedate him for pain. I said, we could try sedating pain medications if that was your reason to sedate him. I don’t want him sedated. And they said they’re going to continue regardless. It’s not up to me. And yeah, so then they continue to keep him on the Precedex and the fentanyl.

Patrik: So, I can’t see in the notes that he’s on fentanyl, I can see the Precedex. I can’t see in the notes that he’s on fentanyl.

Tera: Okay. They have it as needed for the nurses to use when they feel. And I had a nurse come in and see him, turn his head and she goes, “Oh, not tonight, fentanyl.” And she went in, I told her, “No, we’re not doing fentanyl.” And that’s where this whole issue of sedation came about.

Patrik: Right. Okay. It’s a very fine line here, Tera. There’s a very fine line between keeping him comfortable with the breathing tube and taking him off sedation so that he doesn’t get agitated and potentially fights the breathing tube, but also fights ECMO. And also once he’s off ECMO fights the Impella. So I can see that dilemma. One of the dilemmas here is also how do you assess his brain function if he stays on sedation? So, it’s a very fine line here. Your dad is still on a lot of support from the ECMO and hopefully he can keep improving and hopefully he’s improving to the point where they take off ECMO and they continue with the Impella, then they can focus more on ventilation weaning, and they can also then focus more on removing sedation completely.

So let’s just say ECMO was off, no ECMO, no Impella. I would say stop sedation, wean him off the ventilator as quickly as possible. If they take off sedation and he’s potentially getting too agitated, potentially getting combative, then it could impact on the ECMO therapy. It could impact on ventilation therapy.

Tera: Yeah.

Patrik: So, do you know if they’ve stopped sedation completely during all of this?

Tera: At a point they did until we gave him again, and the next day he was super agitated. So then, they started the continuous Precedex.

Patrik: How long ago was it when they stopped sedation?

Tera: Prior to that? They stopped it 24 hours after his cardiac arrest.

Patrik: Okay. And then?

Tera: They gave him until one week from his cardiac arrest, and then that’s when they were like, he’s no longer qualified. That’s when I was like, let’s try Ambien. You guys are already counting him out. Then he started becoming more awake and restless and stuff.

Patrik: Right, okay. And you’ve seen it yourself. You were there?

Tera: Yeah. The agitation? Yeah. And it was pretty bad. He was biting on his tubes to the point he was suffocating himself. Because he is a very, very strong man, that was at nighttime and in the evening, and then when I talked to him when they were talking about he’s uncomfortable with the ventilator, then I was asking, can we try and wean him off of that either? And they’re like, “No, because of his scale’s so low.” They’re like, if he’s more awake and they see that more often, they would be comfortable, but he’s now on sedation, they’ll never see it. So I was like, yeah.

Patrik: So the positive that I can see with him getting off ECMO on Monday is that it will be easier for them to then focus on taking off sedation and focus on ventilation weaning. So at the moment, you’ve got to picture this. Here’s one of the issues. The ECMO is more or less taking over the function of the heart and of the lungs as well to a degree. He’s on 100% of oxygen from the ECMO. So the air that you and I are breathing is 21% oxygen. So, we are breathing 21% oxygen in the air. He’s on 100% of oxygen. Once ECMO is off, he’s getting 40% of oxygen from the ventilator at the moment. So, the benchmark will be 40% of oxygen from the ventilator once he’s off ECMO, the goal will be to gradually wean off the oxygen levels.

Tera: While he’s on the Impella?

Patrik: While he’s on the Impella, absolutely. And then also wean ventilation down. At the moment, the ventilator’s doing most of the work, so he’s not doing a lot of spontaneous breathing at the moment. We can see that in the reports. So, once he’s off sedation or sedation is being weaned off gradually, he should then be starting to breathe more and more. That’s how they gradually will wean him off the ventilator.

Tera: Okay.

Patrik: Those are his next steps.

Tera: Should I advocate for that even if they tell me that his cognitive level is slow? Because that’s their main reason why they’ll never try to wean him off because of he’s not doing anything on command.

Patrik: You mean they will never wean him off the ventilator?

Tera: That’s what they told me. They said he’s not coming off the ventilator until he’s doing things on command, until some score goes up and they have him at the lowest saying everything is not purposeful, and he won’t protect his airway. So that’s my struggle because I’m like, he’s progressing, but they’re not giving him time to progress to increase that score to get to that point.

Patrik: This is why they’re not telling you the full story here. So let me tell you, I believe, what is the full story her. So, at the moment, he’s breathing on 16 breaths per minute that he gets from the machine every minute. He’s on 40% of oxygen, he’s getting a volume of 450 mls per breath, and he’s on a PEEP of 5. So that’s fairly standard for someone that is in a coma. So I still argue that as soon as he’s off ECMO, that he will automatically wean off the ventilator once he’s off sedation. I think it’s almost an organic process. They can’t stop it.

Now, here is where the issues might come in though. I agree that if he can’t wake up or if he doesn’t wake up with purpose, he might be unable to protect his airway. He might. That might be an accurate prediction. However, here is where we need to make a distinction. Let’s just say he can wean off the ventilator, but he can’t protect his airway. That’s when a tracheostomy might come in. Do you know what I’m talking about with the tracheostomy?

Tera: Yes.

Patrik: Okay. So that’s where tracheostomy might come in. It’s not there yet. And I’ll tell you why it’s also not there yet. This is where what I keep saying to clients, when someone is in a situation like that, there are so many things happening simultaneously and so many things that need to be considered. He is not a candidate right now for a tracheostomy, and here is why. He’s on heparin. Heparin is a blood thinner. He needs the heparin for the ECMO. If he’s not getting heparin through the ECMO, the ECMO will clot and he’s at risk of dying because of another cardiac arrest. He’s at risk of a stroke, multiple risks. Now, but because he’s on heparin, he’s also not a candidate for a tracheostomy right now because of the risk of bleeding, because heparin is a strong blood thinner.

This is where I’m trying to paint the picture for you and project what’s going to happen next, the minute he’s off ECMO, that’s one form of life support taken away. He goes on the Impella, he will still need heparin on the Impella, but they might be able to stop the heparin for 24 hours and do a tracheostomy, they might. It is much more likely, but that is only if he can’t protect his airway.

So let’s just say he’s off the ECMO, they stops sedation. He’s waking up more and more with purpose, and all of a sudden he might be at the point where hopefully his brain is working and people can actually talk him through weaning off the ventilator because it helps if you can talk someone through it. So then best case scenario here is he can wean off the ventilator and avoid the tracheostomy. That’s the best-case scenario.

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Worst case scenario is he can’t wean off the ventilator, he’s not waking up and then ends up with a tracheostomy on a ventilator. So that would be the picture they’re painting. Because if he can’t wean off the ventilator, he can’t stay with a breathing tube forever. But he will have to overcome that hurdle with the heparin.

Tera: Yeah.

Patrik: So it is a very complex situation, Tera. It is a very complex situation as you can see. The answers are different scenarios.

Tera: Yeah, for sure.

Patrik: And the other thing that you got to keep in mind, when someone is on ECMO in ICU, they’re at the highest form of life support in ICU. Your dad would be one of the sickest patients in that ICU right now. He would be one of the sickest patients. Not many patients in there would be on ECMO, there would be some, but not many.

Tera: Yeah, they’ve told us that.

Patrik: Right. So that is what I am predicting here. The other question that you should ask is with the Impella, that should go into an LVAD (left ventricular assist device). Have they talked about that?

Tera: They says because he can’t consent to it. But that was his whole purpose for his admission to the hospital was the LVAD or a heart transplant. He was there for a week and went to cardiac arrest.

Patrik: I see.

Tera: But then they’re saying that I can’t consent to it. I was willing to consent early when he went in, I was like, “He’s here for that purpose. Can I just say yes and you guys do one of the procedures?” And then they’re saying no. He called me, educated on everything, on the decisions and stuff and was ready, but they’re considering, they said that he never actually consented.

Patrik: Okay. Have you or any other family members to this point, have you signed any papers for any procedures? Did you, for example, sign a piece of paper for the dialysis?

Tera: Yes.

Patrik: Okay. So that’s a double standard in my eyes.

Tera: That’s what I said. When I was talking to my mom. She’s an attorney and I was telling her, “I consented to everything, but what he was in the hospital for, he wasn’t in the hospital for dialysis. He was there to get something replaced with his heart, and they won’t let me consent to that.”

Patrik: Okay. All right. So I tell you what I would do. I would draft a letter or an email to a hospital executive about this specific issue and we can help you with that. That’s what I would do if I was you because you got to call them out on their double standards.

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Tera: Yeah, for sure.

Patrik: You got to call them out on it. Because if you don’t call them out on it, they will just do whatever they want. Like I said in the beginning, Tera, focus on what you can control. Don’t worry about it, because it’s not good time of your energy.

Tera: For sure. You’re right.

Patrik: Focus on what you can control and you writing an email or a letter to hospital executive and saying, “Look, why are the rules changing? You asked me to sign consent for the dialysis and now you won’t let me sign consent for the next treatment that he needs.”

Tera: Which he, even on his advanced directives, he said that’s what he wanted.

Patrik: Oh, so that’s even documented.

Tera: Yeah. We’re the part where it’s like, I would like to prolong my life no matter what the costs, everything he wanted. He said he wanted the extreme and they are not even looking into that.

Patrik: Okay. And you have access to that advanced care directive?

Tera: Yeah, that’s the Power-of-Attorney (POA) form that he signed with my sister as, and at the bottom of it, he put that and yeah.

Patrik: Okay. So that’s good. When you write something, attach that advance care directive.

Tera: Yeah. Would you feel that it would be though safer for him to do it while on the ECMO though, with even as much support as possible, or that really, no.

Patrik: Impella or LVAD are almost the same. They’re almost the same. So I do believe that he will be safe in the short term. He will be safe in the short term. Ideally, he would go onto the LVAD straight away, ideally. Let’s put it that way. Ask for it. Keep asking for it, keep asking for it. This particular hospital, are they a heart transplant center?

Tera: I’m not sure. They’re a big hospital, so I believe so.

Patrik: Right.

Tera: Yeah.

Patrik: Okay. Has the heart transplant been discussed with him or with you?

Tera: Yeah, with him. He even signed a paper saying he would even take someone who’s done drugs. He’s filled out lots of paperwork, but he didn’t inform me about a lot of things until the night before.

Patrik: I see. So for you, there’s a lot of new information you need to digest?

Tera: Yeah. Well, I mean, I was aware of his heart attack and stuff, but when I went to visit him, as a nurse, I witnessed a lot of symptoms that I was concerned about the night he went into cardiac arrest. It was just, they kind of were like, “Well, it’s just his heart and it’s what happens and stuff.” Then he was like, he’s struggling to breathe, super anxious, paranoid, taking oxygen off. I was like, no, something’s wrong with him. Then they ended up finding out he had pulmonary edema and they did that chest x-ray two hours before he coded. I am pretty aware of a lot of the stuff. I knew it could come to this and everything, but pretty close to the last minute that I received all the information of everything.

Patrik: Right. Do you know if they have involved the ethics committee at the hospital? Do you know?

Tera: Yeah, they did. In regards to attempting to disable my healthcare power of attorney.

Patrik: Really?

Tera: Yeah. Because they said that me asking about taking him off the ventilator was harmful to him, or even me trying to put him on Ambien. A lot of me advocating is what they’re saying is not appropriate. Just another little secret, I work for the hospital and I don’t think they’re aware of that. So, I see things I’m probably not supposed to see at the moment, but I could get access to by, of course, pulling his medical records. So, I see behind the scenes that they’re not aware of me seeing, and it makes the situation a lot harder.

Patrik: Right. I see.

Tera: That’s how I found out Ethics was involved. They didn’t tell me originally.

Patrik: Right. I see. A lot of the answers here, Tera, look, ICU teams, as you can see, they’re always very good at painting a doom and gloom picture. They’re very good at that, which from my extensive experience, by doing so, they stay in control of the narrative. What that means is, if your dad is not improving, they can say, “Well, we told you so right from the start.”

Tera:Yeah, yeah.

Patrik: So it’s easy for them to keep your expectations low. If he’s improving, I would hope that everyone would look at it and see, “Oh, well, everyone is winning here if he’s improving.” But at the moment, they keep your expectations low. I think I’ve given you the scenarios, best-case scenario, worst-case scenario, and there could be somewhere in between, of course.

Tera: Yeah.

Patrik:Just remind me, Tera, how many days has he been on the ventilator now?

Tera: Since the 7th, so almost two weeks.

Patrik: 12, 13 days?

Tera: Yeah.

Patrik: Okay. So I would almost argue it’s coinciding now, so the literature suggests that if someone can’t be weaned off the ventilator, you should do a tracheostomy between Day 10 and Day 14. So, we are now in that time window. I almost argue it’s not coincidental that they’re trying to remove ECMO now, right?

Tera: Yeah.

Patrik: If the Impella is there, it might not necessarily be a bad thing because he needs other things too. What he needs is, some attempts need to be made to wean him off the ventilator. Those attempts can’t be made by keeping on the ECMO forever, or it’ll be much more difficult. Now, the other thing that I haven’t seen in your reports is I haven’t seen an echocardiogram for a few days on your dad’s reports, I should say, which I believe is one of the determining factors, whether they can take away ECMO or not.

Tera: They did do it during the turndown studies, and they’re saying that his heart is doing well.

Patrik: Good, good, good, good, good. They have not documented that in the reports that we are seeing as far as I can see. Because one of the numbers you should be looking for in the reports is ejection fraction. One of the terms you should be looking for in the reports is ejection fraction.

Tera: Yeah. He says it’s 20%. He said that’s what it was before though. So they’re saying it’s not improving, but it’s not worsening when they turn the machine down.

Patrik: Right. Okay. So 20% ejection fraction is not great, which is why they will be continuing with the Impella. He may not survive if they took ECMO off and no Impella. Ventilation weaning would be so much more difficult if he went off ECMO without Impella, I’d say he wouldn’t improve. So to a degree, knowing what I know about your dad, Tera, I actually do believe they are moving in the right direction, but by the narrative they’re creating, they’re trying to keep your expectations very low. They’re trying to keep your expectations at the bare minimum so that they can, on the one hand, not be the bad guy if things don’t work out, and if things do work out, they can almost shine.

Tera: Yeah.

Patrik: A lot of it comes down to now, once he’s off ECMO, once they stop sedation, is his brain recovering or not? A lot of it comes down to that, but in terms to leverage what you want, go in with the advanced care directive, that’s going to be very important because your dad has no voice at the moment. The advanced care directive is his voice.

Tera: Correct.

Patrik: Is there anything in the advanced care directive that talks about if he was to ever sustain a brain damage, is there anything that talks about that?

Tera: I’m not sure. I didn’t read it in the entirety, but I just think it says, if you weren’t able to speak for yourself, what would you want? And he picked the most cares, most prolonging options.

Patrik: Okay. Well, that removes any ambiguity.

Tera: Have you ever in your career, ever witnessed somebody? Wow.

Patrik: What do you mean recovering from something like that?

Tera: No, somebody who’s in a coma receive a LVAD or like an advanced therapy further really?

Patrik: Definitely, definitely.

Tera: Because I think they brought up ethics when I did try and kind of ask the question. They’re like, “It would be an ethical issue.” I know even though he was here for that, that was his whole purpose for his hospitalization.

Patrik: So here is the issue there, Tera. So let’s just say your dad’s brain is not recovering to the point that you or your family or he would feel comfortable with. Let’s just say the only way to wean him off the Impella once he’s off the ECMO is with a heart transplant. So let’s just say you’ve got five other patients waiting for a heart transplant and none of them has a brain injury. That’s when it becomes an ethical dilemma.

Look, I have made so many videos over the years. I’m very opposed to what ethics committees are generally speaking and doing, I’m very opposed to that. However, when it comes to organ donation and transplants in particular, the number of organ donors is very limited. The number of potential recipients is very high across the board, whether it’s a lung transplant, whether it’s a heart transplant, whether it’s kidney, liver, it doesn’t matter. So there’s a supply and demand issue, no question. There’s clearly a supply and demand issue, a clear mismatch.

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So if you have five patients needing a heart transplant in the next three months, let’s just say, and maybe they can predict, “Oh, we will anticipate there’s only going to be two donors, because we looked at our statistics on average, we get two donors in a three-month period, whatever the case may be.” Chances that someone with a brain injury would be selected are very slim. Here is the but as far as I can see, let’s just say for whatever reason, there might be no mismatch at the moment in terms of supply and demand, would they let a donor heart go? No, they wouldn’t. A lot of it also comes down to, you got to match blood groups, tissues. So there’s a lot of things that need to be considered. I would say if your dad has sustained a hypoxic brain injury that’s irreversible. I would say chances that he will qualify for a heart transplant are very slim, but they’re not impossible either because of outliers.

Tera: Right. Yeah. I’m okay with the LVAD. Just they’re moving towards taking everything and hoping he makes it. And I said, I’m not comfortable with that either.

Patrik: No. The LVAD will buy him time and will buy you a family time to see what is next.

Tera: Exactly, that was my main point. Why can’t we have time? Because I’ve done research and seen that sometimes it takes time, and if you have looked at his CTs, it has no findings of an anoxic brain injury, and so we were wanting to do the MRI. It was just like, even though we’re a little nervous, we might have a chance, and we just wanted that time. I understand we can’t spend it in the ICU, but if they could just get him stable enough so that we could take him home, and I would appreciate that, but they’re just moving towards, “No, no other advanced therapies, and he’s just going to have to make it on his own.”

Patrik: Yeah. The reality is a lot of patients in ICU don’t wake up without a brain injury. They’re just in an induced coma, they don’t have a brain injury. So from that perspective, it is way too early to see where this is going. He needs to be completely off sedation for a few days, potentially even for a few weeks, so that you can feel and they can feel comfortable, this is now his baseline.

Tera: Yeah. Yes.

Patrik: Nobody knows what his baseline is at the moment.

Tera: Yeah, I agree. Well, thank you so much for answering all my questions.

Patrik: It’s a pleasure. It’s a pleasure, Tera.

Tera: Definitely an informative video. I hope you publish it for other people.

Patrik: No, we will absolutely publish this. Absolutely.

Tera: People going through this, so thank you so much.

Patrik: Pleasure. All the best, Tera.

Tera: Thank you. Have a good time.

Patrik: The best for you and your family. Thank you.

Tera: Bye.

Patrik: Thank you. Bye.

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All right, so I know there are other questions here too. Danvinksy says, “Staying on the ventilator will get you dependent as muscles adjust.” Yes, absolutely. “The double standard is insane.” Yes, absolutely.

The longer someone stays on a ventilator, the higher chances of deconditioning, muscle wastage, and that’s why I keep saying over and over again, if you have a family member in intensive care on a ventilator with a breathing tube or with a tracheostomy, doesn’t matter, or even with a mask on BIPAP, the goal must always be to wean them off the ventilator as quickly as possible. Now, there are exceptions to that rule. The exception is that there are people who will never come off the ventilator, very few people but it does happen. But assuming that your loved one has a good chance of coming off the ventilator, you must move towards weaning off the ventilator as quickly as possible.

Leanne, I need to wrap this up now. I can only go for an hour. I’ve got a busy schedule. I do need to wrap this up in a couple of minutes. I do this every week, once a week, same times, so you will see me again at the same time next week. In the meantime, you can also reach out to us through intensivecarehotline.com. You can book a free 15-minute appointment with me, or you can call me just on one of the numbers on the top of our website. What I do offer is, I offer a 15-minute free consultation, and then I do have paid consulting and advocacy options beyond the free 15 minutes, or you can see me here next week again.

I do this YouTube live once a week. Again, same time. It’s 10:30am on a Sunday, Sydney, Melbourne time, and it is 6:30pm East Coast on a Saturday evening Eastern Standard time, which is 3:30pm Pacific time on a Saturday and 4:30pm. Mountain Time on a Saturday and 5:30 pm Central time on a Saturday. In the U.K., it’s just before midnight when I do these YouTube live.

So Leanne, I’m sorry that I can’t take you in now. I will need to wrap this up in a minute. Now, if you need one-on-one consulting, if you have a family member in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website, or simply send an email to [email protected]. Like I said I do one-on-one consulting and advocacy over the phone, Zoom, Skype, and WhatsApp. We also have a membership for families of critically ill patients in intensive care.

If you need Intensive Care at Home, go to intensivecareathome.com where we send our critical care nurses into the home for long-term ventilated adults and children with tracheostomy.

With Intensive Care at Home, we are currently operating all around Australia in all major capital cities, as well as in all regional and rural areas. We employ hundreds of years of critical care nursing experience combined. No other provider brings that level of expertise into the community than we do.

We are also providing Level 2 and Level 3 NDIS Support Coordination with Intensive Care at Home, and also TAC (Transport Accident Commission) and WorkSafe case management in Victoria.

Yes, Leanne, please reach out to me through intensivecarehotline.com, it doesn’t matter whether you are in the U.K. or in the U.S. or in Australia, I’ll talk to you if you reach out to me. The U.K. number is on our website at intensivecarehotline.com.

Thanks everyone again. Subscribe to my YouTube channel, click the like button, click the notification bell, comment below and share the video with your friends and families. Take care for now.

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