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
How Can the ICU Team Get my Dad Off this Prolonged Induced Coma?
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 Nestor, as part of my 1:1 consulting and advocacy service! Nestor’s wife is with a breathing tube
on a ventilator and ECMO. Nestor asks how he can stop the ICU team from pushing him to withdrawal of treatment for his wife.
How Can I Stop the ICU Team From Pushing Me to “Withdrawal of Treatment” for My Wife?
Patrik: Hello Nestor. How can I help you?
Nestor: Hi there Patrik. My wife is with a breathing tube and on a ventilator.
Nestor: Yes, so now they just called earlier saying that her blood pressure was going low. She’s on the ECMO machine. She’s on the ventilator and they’re saying that she may not make it through the day. They told me that a couple of times before, but she always ends up coming through, so yeah.
Patrik: Okay, tell me how long has your wife been in ICU and why is she on ECMO?
Nestor: She’s been in ICU for a couple of months now. She ended up getting COVID. And she’s a heart
transplant patient, she had a heart transplant for four years. And, I guess the treatments that they gave her didn’t work, and her lungs got really bad. So they put her on a ventilator and the ventilator wasn’t working well enough. So then they put her on an ECMO machine and dialysis to keep the fluid off.
Patrik: And how long ago was the heart transplant?
Nestor: Four years ago.
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Patrik: Four years ago. And she’s on ECMO for lung failure, not for heart failure?
Nestor: Yeah, the heart is okay, they said. She’s just on it for lung failure.
Patrik: Okay, how long has she been on ECMO for?
Nestor: Since end of last year.
Patrik: Wow that is the longest that I’ve ever heard someone being on ECMO.
Nestor: Yeah.
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Patrik: I’ve seen up to three weeks, certainly not three months. That’s a novelty for me, but okay. Can you visit your wife?
Nestor: No, I can’t visit her because of the-
Patrik: Yeah, the virus.
Nestor: Right.
Patrik: Is she still COVID positive?
Nestor: No, she’s not COVID positive anymore.
Patrik: Do you know what stops her from getting off ECMO?
Nestor: They said that her lungs are damaged. They think it’s damaged to the point where it’s not repair. They were trying to run some tests to see if she had any blood flow to the lungs, but they said that tests wouldn’t be accurate. But they don’t know if there’s any blood flow going to the lungs or not. They can’t even tell me how damaged the lungs are or anything, so.
Patrik: Okay, what are they saying are the next steps? Are they laying out a plan for you?
Nestor: Yeah, a plan of care is to put her in palliative care.
Patrik: The first thing that stands out to me here, Nestor is I have never seen someone on ECMO for longer than three weeks, maybe three and a half weeks at the most. So then now that you’re telling me she’s been on ECMO for a couple of months, that’s a novelty for me without knowing any of the other details. The situation sounds very grave to me because I would argue from experience that if someone can’t come off ECMO after three or four
weeks, chances that someone is not surviving are pretty high. Now you’re telling me your wife’s been on it for months now, which is a massive concern.
Nestor: Okay.
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Patrik: Have they asked you for any… Let’s just say they want to move your wife to palliative care. Have they asked you to give consent to that? Well, or let me ask you this. Are you the medical power of attorney for your wife?
Nestor: Yes.
Patrik: Have they asked you to give consent to move her into palliative care?
Nestor: Not yet, I know they had the palliative care nurse talking to me and we were supposed to decide that this week, so.
Patrik: Okay, how do you get updates? Does the nurse call you? Does the doctor call you or how do you get updates?
Nestor: The doctor calls me every day with updates.
Patrik: Okay, and what’s been the latest update. Can you share a little bit more there?
Nestor: Yeah, that was the latest update today that they said that first she has, what is it? A gallstone infection, gallbladder infection?
Patrik: Yeah.
Nestor: So they were saying that she’s too weak, that they couldn’t do the surgery.
So I get all of this because she was actually on the ECMO. She was going down on the ECMO machine. But then I guess when this infection came up, that’s where all the problems started. So they are saying that, they were telling me today, like they were at first they wasn’t going to touch her. But now, they’re trying to do something about it. I think they were going to have somebody to come upstairs to do a bedside procedure on her. To see if they can remove, I
guess, some of the infection or whatever. But they said they’ll call and let me know. But they said that she was on a high level of medication to keep her blood pressure up and that she was on the highest setting on the ECMO and the ventilator and that it wasn’t oxygenating like it should be, like it was before, so.
Patrik: Okay, that’s all very valuable information, especially now that you mentioned she’s on medication for her blood pressure. That is considered life support as well. So you’ve got ECMO, which is life support. You’ve got a ventilator, which is life support. You are talking about the medication for her blood pressure that is considered life support. I would argue, she would have had a surgical review for the gallstone or for the
gallbladder infection. With the information that you’ve shared with me, I would argue that no surgeon would touch her at this particular point in time because she’s too unstable, right.
Nestor: Yes.
Patrik: Has that been verified? Is that what they’ve been saying? That she would be too-
Nestor: Yes, yes, that’s what they’re saying because they say she’s too weak, they don’t want to touch her. They really don’t want to touch her right now, so
Patrik: Right, have they asked you about DNR? Do you know what I mean by DNR?
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Nestor: Yeah, they did. They asked me about that too.
Patrik: And what was your response?
Nestor: I told them, “Yeah.” Because that’s what her wishes were before she went on a ventilator, which she wanted to be resuscitated. So I just left it how she wanted it, so.
Patrik: Okay, okay, so she did not want to be resuscitated.
Nestor: She did.
Patrik: She did, okay.
Triana: She did, yeah.
Patrik: Okay, so you have not signed a DNR?
Nestor: No.
Patrik: Good, okay. Is this the same hospital that your wife had the heart transplant at?
Nestor: Yes.
Patrik: Okay, that to a degree is good. That could also explain why she’s been on ECMO for a couple of months because the hospital would have a very strong interest in getting your wife through this. I would argue that with everything that you’ve shared so far, that the situation is grave. But you know, it would be worth to talk to the doctors. Have they talked about a lung transplant? Have they talked about that?
Nestor: They said because she had a heart transplant, she wouldn’t be a candidate for a lung transplant because she already had the heart four years out.
They were saying something like if her lungs and her heart was messed up, then she will probably be, because she’ll have to get like a double.
Patrik: Double, yeah.
Nestor: Yeah.
Patrik: But not… okay I see.
Nestor: Yeah, and she would have to be transferred to another hospital to do that, so. And then they were saying like it’ll be hard for them to transport her because she’s critical, so.
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Patrik: Right… Well, have you spoken to the doctors today?
Nestor: Yeah, when they called me, yes.
Patrik: Okay, and the next update you will expect tomorrow?
Nestor: Yes.
Patrik: Do you call the ICU overnight to get an update from the nurse? Do you get any-
Nestor: Yes because I usually Face Time her and talk to her so she can hear me because she’s on sedation . They have her heavily sedated, they took the paralytic medication off. She was opening her eyes when you call her name and everything. But then they had to put her on more sedation because they
said she was kind of breathing a little bit fast. And for her to tolerate the ventilator, they had to go up on a sedation medication.
Patrik: Does she have a tracheostomy?
Nestor: She didn’t put a trache in, they just have the-
Patrik: Breathing tube?
Nestor: Yes
Patrik: She’s been having the breathing tube for those months?
Nestor: Yes she has, but she has no trache.
Patrik: Do you know why?
Nestor: And I was thinking because I was like, “I’ve been doing research and I see other hospitals put a trache in.” But they never put a trache in for her. She’s just been on the tube.
Patrik: Any ideas why no trache? The only thing that I can think of is, on ECMO she would be on heparin. Have you heard of heparin?
Nestor: No.
Patrik: She would be on heparin on the ECMO and heparin is blood thinner. And they can’t really stop the blood thinner while people are on ECMO. And because they can’t stop the blood thinner, a tracheostomy could lead to someone bleeding to death, really. That’s the only explanation that I have. The other explanation that I would have is if she’s on a hundred percent of oxygen. Which she probably would have been, that’s another risk. But
then on the ECMO, they could have bypass that. My explanation would be the heparin. But you got to picture this. If she had a trache, they could probably reduce, if not remove, all of her sedation.
Nestor: Okay.
Patrik: And are you saying that she’s been sedated for those long months?
Nestor: Yeah, she’s been sedated that long. She was okay, she was fine and everything. They were actually going to send them back home, but then she developed a bacterial pneumonia. They cleared the bacteria pneumonia up and then I guess that’s when the COVID pneumonia came in. And
after that, that’s when her lungs got really bad. Because they were arguing first if… They waited a long time to put her on a ventilator, I can tell you that because she’s a transplant patient and the doctors were going back and forth to put her on a ventilator or to not put her on a ventilator tool. It got to a point whereby the time she needed the ventilator, she needed to be on ECMO as well.
Patrik: I see, I see.
Nestor: And they put chest tubes in and everything in her. They did procedures on her where one of her lungs collapsed, I think twice. So they went in and they put a chest tube in and they did that procedure to do that. They did put her on dialysis all whilst she was on the ECMO
machine. So, I don’t-
Patrik: Still on dialysis as of today.
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Nestor: Yeah, she’s still on dialysis.
Patrik: Are they talking about multi-organ failure? Are they talking about that?
Nestor: Yeah, that’s what they said.
Patrik: Okay, how do you feel about them putting to you to move your wife to palliative care? What are your thoughts around that?
Nestor: I really don’t want to do that because I know that’s where they started taking all the medications away and she just pass away. I just didn’t want to do that. You know, I wanted to buy a little time to see if I could at least get a second opinion somewhere else to a different hospital or so, because we have five kids. Ranging from ages two to 16. So I didn’t want to do that, but if I have no other choice then I have no other choice,
so.
Patrik: Yep, so I’ll tell you something about the second opinion. You know, if you feel like you would need to go somewhere for a second opinion, I would argue you should. Most COVID patients have ARDS, your wife would have ARDS, lung failure, ARDS. Most of those patients would need ECMO, very few get it because ECMO machines are in rare supply. Not only that, doctors and nurses and perfusionists that can look after ECMO are in rare supply,
right. So I would argue, yeah you can get a second opinion. But bear in mind, very few hospitals or very few ICU’s have the specialty knowledge of ECMO in the first place. So getting a second opinion is not impossible, but difficult because you are dealing with a very unique situation in terms of that your wife is probably, I don’t know, probably one out of the 5% of all ARDS COVID patients that are on ECMO, right.
Patrik: So you’re already dealing with a unique situation where, yes you can get a second opinion. But there’s probably not much more that hospitals can do besides keeping people on ECMO and keeping them alive and waiting for them to recover.
Probably not much more they can do, right. As I said to you, I am surprised to hear your wife’s been on ECMO for that long, never heard that. Not to say that my experience stands the test of time. I’m not suggesting that there are hospitals out there that are experimenting probably more than the hospitals that I’ve worked at.
Nestor: Yeah.
Patrik: You know-
Nestor: I asked them. The nurse was telling me they had like other patients that were on there for two months. So I think that’s what they are… Because it’s so new, they don’t know too much about it. So they kind of experimenting and she’s at a university hospital too, so.
Patrik: Yeah, but I do believe that if they are confirming that the lungs are scarred and she’s not a candidate for a lung transplant. The only way out that I can see with the information that you’ve shared. The only way out that I can see is a lung transplant. And how old is your wife?
Nestor: She’s 39.
Patrik: Yeah, the only way out that I can see is a lung transplant. And at her age, I do believe she would be a candidate for that. But the heart transplant complicates the situation, there’s no question about that. That’s all I can say.
Nestor: Okay.
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Patrik: What I can offer you is I’m happy to get on a call with you, with the doctors.
If you feel like there’s benefit in there. I would get more information, I would be able to ask more clinical information. I would be asking why no tracheostomy? Why no lung transplant really? I know from experience that a double heart and lung transplant is the preferred option, I know that from experience. But I also believe that given your wife has had a heart transplant at this particular hospital. I would argue they have a stronger interest in her than other
patients, I do argue that. They have invested heavily in her in the past and have done so over the last few months. Let’s just say she was a candidate for a lung transplant. There would still be the question, “Would she be able to recover after a long months on induced coma?” You know, those are all the
questions that need to be asked.
Nestor: Okay, all right.
Patrik: I’m sorry that I haven’t got any better news for you with palliative care. You certainly shouldn’t feel pushed to go to… I know that they’ve kept your wife alive for such a long time. It’s a very good chance they can keep her alive for longer.
Having said that, the risk when people are on ECMO, the risks for things to go wrong is there, right. But you shouldn’t be pushed out. I do believe your next step is to get more information and come to terms with what is unfolding there and make an informed decision. Also, if you were to move towards end of life, what do you want that to look like? Is it just as simple as we move into palliative, you know.
There’s also steps that need to be involved that could be very important for you and your family to consider if you are moving towards end of life.
Nestor: Okay, yeah all right.
Patrik: I’m really, really sorry to hear that. That’s not to say because I’m trying to paint a picture there with my experience. That’s not to say you should be giving up at the moment. Just let things sink in, absorb the information and think about it.
Don’t be pushed towards palliative care. As I said, I would argue that moving towards palliative care seems to be inevitable with the information that you’ve shared with me, right. But don’t be pushed, gather more information. If you want me to get on a call with you, with the doctors, you can reach out to me and take the next steps. If you do want me to get on a call with the doctors, I do charge a fee for that. But you can think about that. I will email you some
options and go from there.
Nestor: Okay, that sounds like a plan. Okay, all right. Yeah, I have to really think about this, so.
Patrik: Yes, have to think about this, digest and not make any hasty decisions.
Even though they might try to get a quick decision out of you.
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Nestor: They are, they’re trying to get me to come tomorrow.
Patrik: No, no, no… Oh, to come?
Nestor: Yeah, they want me to come to the hospital tomorrow, yeah.
Patrik: To do what? To visit your wife or to talk to them?
Nestor: To visit and talk to her because they did it last week and they had the palliative care nurse in there. And I told them to give me a little bit more time to think about this. And then they were like, “Okay, well we’ll give you until next like Monday or Tuesday.” We decided on Thursday, but they called today and was like, “Can we do it tomorrow?”.
Patrik: Don’t be pressured, they can’t do anything without your consent. Don’t be pressured, okay.
Nestor: Okay.
Patrik: If they were to remove life support without your consent that could be perceived as murder.
Nestor: Okay.
Patrik: So don’t work on their timeline, so you’ve got to work on your timelines.
Nestor: Okay, all right. Okay, well thank you so much, I really appreciate it. You are so helpful and you tell me a lot of stuff that I didn’t know and I just really appreciate that.
Patrik: If we had more time, there would be so much more I could tell you. In the shortness of time, and if you and I were to get on the call with a doctor, we would get more information. I always argue that the doctors are probably only telling you half of the things that are going on.
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Nestor: I think so, I think they’re only telling me half.
Patrik: Yeah, so the other half I could get out of them because I’ve done this for 20 odd years. But whether it’ll change the outcome… Just because I can get more information, I would argue at this point in time. I would argue, with the information you shared, it wouldn’t change the outcome.
Nestor: Okay, all right. Okay, so, all right. Thank you so much, I just really appreciate it.
Patrik: Pleasure, pleasure. I wish I had better news for you.
Nestor: Okay, thank you so much.
Patrik: Okay, look I’ll send you an email with some options if you wanted to pursue with that. I wish you all the best and your family. And I hope it’s turning out okay.
Nestor: Okay, thank you so much. I really appreciate it.
Patrik: Pleasure, you’re welcome. Take care for now.
Nestor: Okay, bye.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
