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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
My Mom is in the ICU for Septic Shock. Why Does the ICU Team Wants Her To Be Discharged?
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 Laura as part of my 1:1 consulting and advocacy service! Laura’s mother is in the ICU for Septic Shock and Laura is asking if the hospital has the right to stop treatment while her mum is on transfer.
My Mom is in the ICU for Septic Shock. Why is the ICU team Insinuating Euthanasia?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Laura here.”
Laura: Hi, Patrik.
Patrik: Hi and thank you for doing that straight away so now we can talk. Where is your mom now?
Laura: Well, there’s another piece of the puzzle that I found out that they didn’t really explain to me and I wish they would have. It’s not good. It’s that she has those big, bulky lymph nodes and they’re pressing on the biliary duct on the liver and they had the stent put in there. However now, her bilirubin levels are climbing and they’re at 17 and it’s not draining. It could be that there’re other little, it’s draining in a different place and the smaller ducts down below, they’re and to able to help that situation. This puts it now in different perspective. It looks like she has many, multiple things here than I knew before.
Patrik: Yes, I saw that in your email. What you mentioned in your first email this morning, in your first message as well, you said that they were going to remove life support and then potentially send her home. Where are you at with that? Is she-
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Laura: Well when I came here around 9:00, I saw the lead doctor and he said … Well, actually a nurse came in and says, “Where are you? What’s your decision?” I said, “Well, we still want to try to be proactive and treat what we can.” Then, the lead doctor came in and says, “No. We can’t do any more treatment. You have two hours to … and then we’re going to pull it.” So, we’re in a grace period right now while they let us decide what we’re going to do.
Patrik: Basically, with the bilirubin going up and the stent potentially not working, that is a concern and there is some validity in there in terms of options. However, you remember when we last spoke, I suggested to talk to the GI doctor. Have you done that? Have you been able to get hold of-
Laura: No. I haven’t got a hold of him. I asked a kidney doctor came by. He was the one that showed me the screen with the numbers of the bilirubin. I requested him to try to get a hold of him, to come over. He came back and he said I guess because of the holiday or whatever-
Patrik: Sure.
Laura: He said … but he did speak with them or something and he said that the GI agrees with the rest of the team pretty much.
Patrik: Sure. Okay. Another thing that I got from your email is … For example, you say in one of the emails that the Levophed is back at 14 mcg/h and you’re also talking about Vasopressin.
Laura: Yeah.
Patrik: Here’s what I believe is happening. With the bilirubin going up and with the stent most likely not working, she’s becoming sick again.
Laura: Yes.
Patrik: s that something they mentioned?
Laura: They did mention. The kidney doctor did mention that. He was the one that was the most … I liked him because he took time with me and explained and showed me numbers. It was very helpful. He did mention something like that, yes like a new infection kind of thing. Another infection.
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Patrik: Yeah and that’s why I believe it is so important to talk to this GI doctor again because the only … What I believe is happening if the stent is not working, yes, they could take the stent and say we can’t fix it. But unless you heard that from the GI doctor, that is not the ICU’s domain. If the stent is not working, yes, the IC understands what’s happening, but the ICU can’t fix it because they’re not the experts on that.
Laura: That’s right.
Patrik: Right? And that’s why I keep going back to talking to this GI doctor because he would be the one looking at the stent if there is something they can do. Am I making sense here?
Laura: Yes. However, the kidney doctor that came in that was helpful and talking to me for quite a while, he was saying that maybe in her condition it would be risky to do any kind of thing again with that.
Patrik: I could not agree more with you. I could not agree more with you that it would be very risky to do something because if the Levophed is going up and she’s now Vasopressin as well, that is significant amount of life support. There’s no question about that, and it would be risky.
However, nevertheless if the stent is not working it’s still the domain of the GI doctor and he would still have to give an opinion on that one way or another. It’s easy for the ICU to say, “Look, she’s now on multiple forms of life support. The bilirubin is going up. She is most likely dying.” That’s easy to say without getting the input from the GI doctor, and as you also know by now, that’s what they’re unfortunately pushing for. They are pushing for end of life.
Laura: Yes, they are.
Patrik: Right. We can see that. However, that doesn’t … It needs the input from this GI doctor. God forbid if he comes back and says, “Hey there is nothing I can do,” fair enough, but you need to hear it from that doctor and not from the ICU because yes, the ICU is keeping her alive now with everything they’re doing. They’re keeping her alive with everything they’re doing. We also know which direction they want to go. But at the end of the day if the bilirubin is the problem and the stent is not working, then the GI doctor needs to give some input.
The thing is, if she was to go to another hospital, she would still need to be admitted under a GI doctor because that is the primary issue. Everything that’s happened is pretty much coming from this primary issue. That’s fair to say, isn’t it?
Laura: Mm-hmm (affirmative). And she also had the kidney infection as well, but they put the drainage bag too.
Patrik: Yes, that’s secondary. Which one was first? The bilirubin issue or the kidney issue? Which one was first, do you remember?
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Laura: The first procedure they did was to make … the nephrostomy bag, that was first. Then, I pressed for the GI that we could do something about to stop the jaundice.
Patrik: I see. So, the kidney issue was first. The-
Laura: Yeah. They took care of that first. Yes. That was first.
Patrik: Do you know the primary-
Laura: And as I saw her getting more yellow, then I demanded the GI specialist.
Patrik: I see. Okay. That’s a little bit different together again because the primary physician before ICU really was the kidney doctor.
Laura: And the thing is, is that it was the Urologist that did the procedure. The first one that saw her is … she’s got many components. It was the Urology doctor that did the nephrostomy bag and then I demanded to see a kidney doctor later after she was in the ICU. So, it was the Urology, then I demanded the GI for the biliary stent consult. Then she got the procedure and then after that I said, “Well, we need to see a kidney doc,” because I was worried around there was not much urine output.
Patrik: For sure. I’ll tell you my worst-case scenario what I can see happening as a worst-case scenario where no matter what they do, your mom’s life could slip through everybody’s hands. I’m not trying to be negative-
Laura: No, I know.
Patrik: I’m just trying to explain to you what I’ve seen over the years.
Laura: Yes.
Patrik: For example, if the stent is not working, bilirubin keeps going up, she becomes septic. She goes into septic shock Now, to a degree she’s already gone into septic shock, which is why they restarted the Levophed and why she’s now also on Vasopressin, right? That is a sign that there’s septic shock happening.
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Now for example with Levophed and Vasopressin, there’s only so much they can use of that. They could go up to 100 but then there comes a point where your mom doesn’t respond to that anymore. So, the cut-off that I would say … so your mom goes up with Levophed up to 30 let’s just say. That’s where it becomes critical where there comes a threshold, maybe 25, 30 where you think how much further you can go with achieving a result. 14 is okay, but the Vasopressin at 0.4 is probably already at maximum because you can only give up to 0.4 of Vasopressin I can see what’s happening clinically.
The risk with that, with the sepsis happening, the risk of your mom having a procedure would be … you wouldn’t. Even though somebody might see okay yeah, we can look at the stent and we can try and look at the stent again and maybe take it out, put in a new one, whatever the case may be. In this condition, they wouldn’t touch her because she would be high risk.
Laura: No.
Patrik: Right?
Laura: Yes, that’s right.
Patrik: So, you understand that mechanism. Over the last few days since we last spoke over the phone, have you been in contact with other hospitals?
Laura: Well, I did try to saddle back the other hospital and they denied the… they call it a “lateral move”. They said, “Well, we do the same things over there,” so they said no. Tried that route and then I asked her house call doctors if they do that admitting. So, the doctor that saw her in the home. They said no they don’t admit either. The hospital can do a second opinion where you bring your own doctor in or fire all the doctors or something like that. That’s another thing, but I would have to find another doctor. Strangely enough, my daughter found … she was looking around the websites and found another doctor but then when I mentioned his name to the head nurse, she said, “Oh, you can’t use that doctor because he’s on the same team as the head of this ICU pulmonary guy.”
Patrik: That could be conflict of interest.
Laura: Yeah.
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Patrik: I would pursue most likely that second opinion because all you want to do now Laura, is you want to buy time. Do you think your mom is suffering?
Laura: Well, she’s not on any meds to calm her down. She seems all right. She seems all right enough.
Patrik: Okay. So, she’s off the Precedex. They haven’t restarted anything since then.
Laura: That’s correct. She’s breathing on her own just with pressure support at this point.
Patrik: That’s good because with all of these, as you’re aware, I’m very much pro-life however, and the reason I’m asking is, is she suffering? That is something you always may want to keep in mind, how much suffering is she going through while you’re battling for her life. It’s always good temperature to check in terms of is she suffering? Would she potentially change her mind with all the suffering going on? But if she’s comfortable, then that’s a good measure in terms of continuing what we’re trying to achieve.
Laura: Yeah. The nurse here that’s taking care of her right now is saying that we should use this precious time to gather the family and be talking with her. The nurse said something to me that we could plan a time tomorrow at the ICU to take the supports off and then they maybe give her some comfort meds, morphine or something and then we’d be with her. She offered that and she acted like it would be okay if we did it tomorrow so that would buy her some time until tomorrow.
Patrik: What was your response to that?
Laura: I just listened to it and I didn’t say … I just said I’m getting all my information right now. We’ll have to get all our facts and decide.
Patrik: Okay.
Laura: But I have that in my head if I need it, all that information.
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Patrik: Sure. I’ll tell you my thoughts on that, Laura. With everything that’s going on in terms of that life support has increased, there is a very high chance that if they did that … She’s on Levophed 14 mcg/h and Vasopressin 0.04 mcg/h. The reality is if they took that off there’s a very high chance your mom’s heart would stop. A very high chance of that. So, they are laying out the options what would be easiest to achieve their goals. The easiest way for them to achieve their goals is do what they said. Stop life support tomorrow at 3:00, whatever the case may be. They give your mom comfort meds and she would probably be gone. That’s the reality. That’s what they’ve been planning all the way along.
Now that your mom’s condition is deteriorating, it’s going to be even easier for them to put that plan into action because they won’t need a hospital at this point in time because it’s very likely that with that amount of support, she would pass away the minute they stopped the support.
Laura: Yes.
Patrik: In one of your emails you mentioned DNR. There is still not DNR in place?
Laura: That’s correct.
Patrik: Good. Do you think that the other hospitals are not taking your mom because of also time of the year? Do you think that if this was to happen next week after the holidays are over, do you think their response might be slightly different? What do you think?
Laura: I think the difficult part is finding a doctor to admit her. There was another thing that the nurse mentioned to me. I’ll have to tell you. The nurse kind of whispered to the side and said if you wanted to sign a DNR and then you want to get her into hospice, get my mom in the hospital … I’m sorry, get my mom in the ambulance and I travel with her and then midway I say, “No, I want to take off the DNR. I want to send her to emergency room.” She was saying that is one possibility we could do she said but then again, there’s some risk with that too.
Patrik: I saw that Laura.
Laura: In transport, right?
Patrik: Yeah. I saw that, Laura. I have never heard of this. It’s almost like playing Russian roulette I believe. It would be like … I would not take that approach. I would not recommend that approach. I’ll tell you I believe that if they took off life support for now, she may not even make it to the ambulance.
Laura: Exactly.
Patrik: I’ve never heard of such an approach. I do believe in a situation like that it needs an organised approach, meaning you need another hospital that’s happy to take her. Do you remember on the weekend we talked about the state law in and I sent you some information? Have you mentioned that to them in terms of where they are standing in terms of the state law in Minneapolis?
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Laura: Yes. I went to the charge, the head nurse and I said, “I want a copy of your policy for termination of treatment and end of life procedures.” She looked kind of confused but then found something for me. I think I texted it to you or emailed it to you. I don’t know if you got it.
Patrik: Yeah, you mentioned that they didn’t give it to you, or they didn’t have it but that’s all I had.
Laura: Oh, okay. No. They did give me this numbers to have the Victoria Hospital care decision process resolution. In the meantime, I did call the … I got the numbers from the charge nurse in the ICU for the health supervisor that is going to investigate this conflict. Then, there’s the procedure and guidelines here.
Patrik: So, you could say they’re acknowledging there’s a conflict and that they’re looking-
Laura: Yes, I did. Yeah. I did call the channel that they gave me and then I asked for a copy of this and it says they’re defined the care issue as conflict. Then they’re saying that … Surrogate, caregiver is unwilling to stop any given treatment. Surrogate to stop resisting treatment. Surrogate assisted care continue after patient declares dead. So, there’s various scenarios through there within the conduit either with the surrogate, the patient or the doctors who are willing to treat.
Patrik: Okay.
Laura: They cover themselves with this.
Patrik: Sure. They cover themselves but at the same time, how do you feel about … it sounds to me like nothing’s going to happen in the next 24 hours. Would you confidently say that? That nothing is going to happen in the next 24 hours because of you basically saying, “Look, I’m not happy with what’s happening here. There is a conflict in interests and whatnot?” Would you feel that way, that nothing’s going to happen in the next 24 hours?
Laura: I’m not 100% confident. I mean, I’d push a call to you. I need to follow up but right now, the nurse was saying that the doctor told you that 9:00 in two hours that you are going to need to decide, what you’re going to … If you’re going to have her here or transfer to another hospital.
Patrik: Sure. But you were referring to 9:00 AM-
Laura: When I came in.
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Patrik: So that time has-
Laura: Yeah.
Patrik: Sure.
Laura: I did try calling Medicare. I got a little confused in this process because I thought they were discharging my mother but when I talked to the nurse she said, “No it’s not discharged, it’s turning off the treatment and termination.” That’s different than discharging because I called Medicare and I made a mistake and I called and he said if you’re being discharged too soon, call this number. So, I called them but that’s not applicable this time.
Patrik: Sure. I appreciate that. Tomorrow is Christmas. You’d really think that they wouldn’t do anything stupid on Christmas. You would really hope that they would have that courtesy of not doing anything that’s even remotely related to end of life on Christmas day. You would really think that.
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 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!
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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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