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
Why Does the ICU Team Try to Limit their Treatment for my Critically Ill Wife in the ICU?
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 Jay, as part of my 1:1 consulting and advocacy service! Jay’s wife is with a breathing tube and diagnosed with ARDS in ICU. Jay is asking if the ICU team is being reasonable for not recommending ECMO for his critically ill wife in the ICU.
Is the ICU Team Reasonable For Not Recommending ECMO For my Wife with ARDS in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Jay here.”
Jay: Do you remember what day she fell below that?
Dr. Marian: Yes, so on the 20th, 4 days ago, the day after she went on the ventilator, when was on 70% oxygen, her platelets were 79. The day before, they were 88 and the day she got intubated, they were 95, so she was already, even the day after she got intubated and then the subsequent day really on the borderline and then only went down from there, unfortunately that was also when her oxygenation was declined as well. I’m not sure if they happened similarly, the time course.
Jay: Patrik, do you have any other questions?
Patrik: Yeah, so obviously you’ve made that decision, but I mean, who was involved in making that decision now? Surely it would’ve been a team of doctors that looked at that. It wouldn’t have just been one or two people looking at that. Or is it? Who was involved in making that decision? Is it just yourself or was it a team of ECMO specialist? Was it a team of ECMO specialist plus respiratory or pulmonologist? Who is involved in that decision making process?
Dr. Paulo: Yesterday, Dr. Patricia saw her, she’s a former ECMO director and I’m taking over from her service. I will be here for next one day.
Patrik: Right, so are you saying that you personally haven’t been involved in that decision making process because you weren’t on duty?
Dr. Paulo: Let me put it in differently, I just came on today and I evaluated her and she is still not a candidate for any form of extracorporeal life support.
Patrik: Okay, but what I’m hearing is that you personally weren’t involved in the decision making process, is that correct?
Dr. Marian: Yesterday.
Dr. Paulo: Yesterday?
Dr. Marian: Yes, yesterday were you involved in that?
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Dr. Paulo: No.
Patrik: Right, so okay, I see, so you’re more or less speaking on behalf of the team?
Dr. Paulo: Yes.
Patrik: Yeah. Okay, but there would be like with any major decision, which it is, I mean, we were talking about a life or death decision here, potentially. There would be some records around that, that surely the hospital could make available to Jay if he wanted to have that in writing to see what has been discussed. Surely you would have some minutes around that decision making process.
Dr. Marian: Yes. Dr. Patricia, the person who was on ECMO yesterday, who screened her case and evaluated to see if she was an ECMO candidate, wrote a note in the chart. It was brief, but it summarizes and explains why she is not a candidate, because of her thrombocytopenia.
Jay: Okay, is that available on my chart at this point?
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Dr. Marian: You should be able to see that. Just check.
Jay: Okay.
Patrik: Your hospital would still, however, would still have a guideline/policy around who is a candidate for ECMO or not. Every hospital that I worked at, where there was ECMO, there was a guideline or a policy who is a candidate for ECMO, and who isn’t. Your hospital would have a policy, and again, Jay might want to see that policy.
Jay: Yes, definitely at some point, I’m going to. I would like that made available, so I understand what you’re saying now. I think it’s important for that, just for my peace of mind, obviously I understand what you’re saying about where we are right now, and not trying to judge you about that, but it does help me make up my mind about it. Patrik, I appreciate you being able to help me clarify some of the language that I’m missing at times, because I’m not a doctor or in the medical field. Do you have any other things you’d like ask before we let the doctors go?
Patrik: I still would like to know how many ECMO beds do you have available in this place?
Dr. Paulo: I’m not allowed. I’m just going to talk to you about the clinical scenario. I’m not allowed to talk to you about any of those discussion. You can reach out to the patient’s advocate and they will be able to provide you whatever information you need.
Jay: Okay, so an advocate will be able to find those answer?
Dr. Paulo: Yes.
Jay: That helps. Patrik, I am in touch with them.
Patrik: Okay. Great.
Dr. Paulo: Any other questions you have for me?
Jay: I do not. Patrik?
Patrik: I don’t have any questions. All I can say, I am not a doctor, but I can tell you that I have seen patients going on ECMO, especially at such a young age and with low platelets, maybe their blood transfusion might help. You would still give heparin. The risk for bleeding would be there anyway, and I just want to leave it there. I understand that you’re trying to help Jay, but I am just telling you what my experience is, and I still disagree with what your colleague said earlier, that you’re giving her every option to get through this. I disagree with that very strongly because you’re denying her ECMO, and I just want to leave it there.
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Dr. Paulo: If you’re not kind of happy with it, you have an option to refer to a different facility and see.
Jay: Say that again, please. I’m sorry. I didn’t understand.
Dr. Paulo: So if you’re not happy, in terms of the decision or the treatment she’s getting as a patient, you have a right to get a second opinion.
Jay: I do. I actually did ask her doctor to speak with another doctor on her consult and she was not available. At the time she could talk, and then I asked if I could give her her number and she would not reach out to her. I have that.
Dr. Paulo: Any other questions you guys have for me?
Jay: So you’re saying I can still do that?
Dr. Paulo: What I meant to say was, if you’re not happy with the services of the facility, you always have an option to reach out to different hospitals.
Jay: Yes, I tried. Even got her doctor to speak with somebody, but she didn’t, so Dr. Marian, are you willing?
Dr. Marian: Yes. If you call a facility and get a representative from their ECMO service, I will be willing to speak with them on the phone, provided between the hours of 7AM and 7PM.
Jay: Absolutely. I have not crossed over those lines, don’t worry. I know that you are busy and need to be home at 5PM. Okay, so I…
Patrik: And I would imagine, there would be an ICU specialist overnight as well?
Dr. Marian: Yes.
Patrik: Right. Thank you.
Jay: Yes. Thank you. Thank you, Dr. Marian for helping clarify that too as well. I appreciate that.
Patrik: Thank you so much.
Dr. Marian: No problem. Take care, Jay.
Jay: Thank you.
Patrik: Thank you. Bye.
Patrik: Are you there, Jay?
Jay: Yes, I am here.
Patrik: Right, so it sounds like this Dr. Patricia who was involved yesterday is not on duty, so she speaks on behalf of her. If you want clarity, I can send you an ECMO protocol. Not that it really makes a difference, but what I am saying is what I mentioned to you earlier, Jay, in a hospital, everything has a policy, everything.
Patrik: Mopping the floor, cleaning the window, everything comes with a policy in a hospital, and now they’re basically telling you that one person makes potentially a life or death decision and writes a quick note and says, “Yep, my decision has been made. That’s it.” Right, so what I’m saying here is they need to follow a guideline or a policy and it’s up to you of course, but there must be a guideline or a policy, and if they can point you towards that guideline and policy, and they can say, ” Low platelets is ruling out ECMO therapy.” Okay, you have your answer, but if I was you, I would still want to see that.
Jay: Right. I agree with you.
Patrik: Right. I can tell you outside of COVID, your wife, just because of her young age, would be a candidate for ECMO. She would come much closer outside of COVID. At the moment, the demand for ECMO is through the roof, because of COVID. Outside of COVID somebody would’ve said, “Oh, this lady is 54. What can we do for this lady?” Irrespective of platelets.
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Jay: I see, and the fact that they’re not telling me, so I’m going to reach out to patient’s advocate.
Patrik: I would. I would.
Jay: And see if she can give me an answer to those questions.
Patrik: I would ask for the ECMO policy. I’ll have to look through my records, but I have one ECMO policy from one of the hospitals that I worked in ICU. Those ECMO guidelines/policy would be fairly similar in English speaking countries. And they must, as I said to you, everything in a hospital has a policy, everything, and basically they’re telling you, “We have a policy for everything, but not for ECMO.”
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Jay: Okay. I’m going to do that, so I’m going to ask the ECMO policy for I want the notes from the doctors.
Patrik: Absolutely.
Jay: And they said that I could call them back, and then there was one more thing, I think that I was going to ask… Oh to speak to another doctor.
Patrik: Speak to what?
Jay: Okay.
Patrik: Yeah. Get a second opinion. Yeah, so I’ll come to the..
Jay: Do I have a right to ask Dr. Marian to speak to another…?
Patrik: Yes, I was going to come to that in a second, about the second opinion .
Jay: Sorry.
Patrik: No, that’s okay. Just very quickly, finishing off on the ECMO, very quickly, and basically what they’re also saying is that this Dr. Patricia made an isolated decision without potentially consulting other people. Now, this is contrary to what… What’s the other doctor’s name?
Jay: Marian. Yeah.
Patrik: Marian. This is contrary to what the doctor said earlier. She said that a team of doctors made that decision. Now the ECMO specialist now is saying, “Oh, Dr. Patricia made that decision.” That to me sounds different to what Dr. Marian said earlier, that a team of doctors has looked at her case, and now they’re telling you, Dr. Patricia wrote a quick note, “No ECMO, because of low platelets.” It just gets a little bit murkier, that’s all.
Jay: Yeah. I understand. I might look down.
Patrik: Right. In terms of second opinion. Yes, you do have the right. I mean, you do have the right for a second opinion, so you can reach out to another ECMO center for sure. You can, and if another ECMO center has a bed available, they might give them a call. They might.
Jay: So we don’t even know yet though, if all the beds are being used.
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Patrik: We don’t know, but I think there’s a very high chance at all. At the end of the day, we don’t know, but I think there’s a fairly high chance that pretty much all.
Jay: Why aren’t they just saying that?
Patrik: Say that again.
Jay: Why don’t they tell me that?
Patrik: No, they’re not telling you that, of course, because you have the right to reach out to whoever you want, but I would argue that with COVID at the moment, I would argue that 99% of ECMO beds are occupied. I could..
Jay: But I don’t understand why they can’t just that to you.
Patrik: Yeah. Sure. No, no, and they don’t want to say that to you because that might make them look like they don’t want you to reach out, and I mean the bottom line is this, if you don’t try, you certainly won’t get, that’s the sure.
Jay: Right. All right. I’ve got a lot of phone calls to make and I’m going to go do them. If there’s anything else you can think of?
Patrik: Just give me..
Patrik: Yes. Can you give me your… Just give me one second. Can you give me your email address? Because I want to send you an ECMO protocol and I do believe I also have a list of ECMO centers that I can send you.
Jay: Yes. Okay
Patrik: Yeah. Okay. I’ll send you a couple of emails.
Jay: Have you been able to..
Patrik: Go on.
Jay: Okay. Is there anything you would like me to take a screenshot of and send you?
Patrik: Oh, oh, if you can send me a picture of the ventilator, if you can send me a picture of the monitor, so there would be a bedside monitor where you can see all the vital signs. You can send me a picture of that.
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Jay: Yeah. I can do that.
Patrik: If she is on any infusions, if you could send a picture of that that would be great.
Jay: Okay.
Patrik: Those would be the most important things. The other thing would be, if you can get a list of the medications she’s on. That would be great too.
Jay: Absolutely. Okay. I will do it. Thank you. Okay, anything else at this point?
Patrik: Not that I can think of. Are you going to the hospital later or…
Jay: I’m actually here now. Just waiting to walk in.
Patrik: I see. Yes. If you can also send me blood results, that would be good. I mean, we will get on the phone with the doctors or the nurses anyway, but the more information, the better.
Jay: Okay. Absolutely will do that. Thank you for your help, and I’ll be giving those to you.
Patrik: Yeah. Okay. Thank you for now.
Jay: Okay.
Patrik: Thank you. Bye-bye.
Patrik: Thank you. Bye.
Jay: Bye.
The 1:1 consulting session will continue in next week’s episode.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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