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
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 Dustin, as part of my 1:1 consulting and advocacy service! Dustin’s father-in-law is with a breathing tube and on a ventilator. Dustin asks why the ICU team posts a “Do Not Resuscitate” sign for his father-in-law when he is not on a DNR status.
Why Would the ICU Team Post a “Do Not Resuscitate” Sign on My Father-in-Law When He is Not on a DNR Status?
Dustin: The doctors and nurses won’t even speak to my wife as the daughter.
Patrik: So look-
Dustin: Which is absurd, because if we were in the room on any other normal day with him, the doctors and nurses would be more than willing to talk to his daughter and the other family members. So I don’t know the difference, I don’t understand the difference.
Patrik: Are you getting any Face Time with your dad?
Dustin: One time. We get… Well, twice, Friday night… No, Saturday night, when they took him off the paralytic, like I told you, and he finally started to come to, and he was having a really… He had a really good weekend. His numbers were looking good, he was following the nurses, and he was stable. And so her stepmom… The nurse snuck in his own phone and Face Time them so they could talk to him, but he said, “Don’t tell anybody, I’ll get in trouble.” So I called my friend, who’s an ICU nurse, and I said, “Look,” I said, “They got the Face Timer, What do we do to get access to him?” And he says… He goes, “Well, my hospital,” he says, “It’s standard.” He says, “We allow a Face Time.” They replaced one of the phone calls, so you get two updates a day from the nurse practitioner. “One of those calls includes a Face Time call,” he said.
Dustin: Now they probably aren’t a fan of him using their personal phone. If you bring a phone up there for them, they should be doing it standard, allowing you to do a video call. So they allowed us to do one, weekend also, but it was still with the nurse’s personal phone. We’re bringing up a phone up there, I don’t know if Chloe’s mom has been able to get it up there yet, but they agreed after we asked, and that’s the problem. We are never informed of something, I’ve got to get information from another nurse or somebody else who’s not even over there to tell me what should be happening, and then when we ask, they’re like, “Oh, sure, okay.” It’s like they don’t keep us in the loop of the plan, of the expectations, of the treatment of what we can do, what our… We get no options, ever.
Patrik: Are they keeping your stepmom informed?
Chloe: Not much. Not much at all. Like I said, she-
Patrik: Not much.
Chloe: No, sir. She’d actually had a… She was a… The nurse practitioner, she talked to the nurse a few times Monday, and then they said, “The nurse practitioner will call you at 12.” Sure enough, her phone rang at 12. My step-mom, she’s 68, she’s not the best with the smartphone, well, she accidentally hung up. But she said she called immediately right back, and I’m sure she did, and the nurse answered, and was basically dodging her, for the nurse practitioner saying he… That the nurse practitioner just stepped out, and we’d have to call her tomorrow.
Patrik: Right, okay. Look-
Dustin: Another problem we have, and it’s like I told you.. She’s not very assertive. Chloe gets on the phone with them every day, says, “Look, these are the questions we want to know. You got to ask them these specific questions.” We have concerns about making sure his kidneys were functioning, because they did give him a Remdesivir, and we wanted to make sure that his levels were good there, he wasn’t going into renal failure or anything like that. And so she kept asking them, “What’s the BUN? What’s the creatinine?” And they would just tell her, “Oh, his kidneys are good,” and she would just accept that instead of getting numbers and getting actual data for us to confirm. That’s been a struggle, is they’re used to just passing her off and giving her just, “Oh, he’s doing good. Oh, he’s just generic.”
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Patrik: Okay, look, Dustin. My time… I need to run for now. I know that I can help you just by setting up a call with the doctors that will help, because just by asking some questions I can’t see how they would be able to deny you that. You have every right to understand and know what’s going on and ask questions. That would be my recommendation as the next step. What I’ll do, Dustin, is I’ll send you the consulting and advocacy options.
Patrik: If you do set up a call with the doctors, you don’t necessarily need to say that you’ve got an advocate/consultant involved. You can just say, “Look, I’ve got a family friend.” You don’t want to get them more defensive than they already are. We can still ask questions, but they might shut the door in your face. They already know you’re talking to someone, and that’s good. But if they know you’ve got someone on the phone or on a Zoom call that sort of an insider, they may get very defensive from the start, and you’re trying to avoid that. You don’t want them to be more defensive. All we’re trying to do with the next step is gathering information.
Dustin: That would be great.
Patrik: That would be my advice. I will email you the consulting and advocacy options, and then you can select from there and we’ll go from there.
Dustin: Okay, sounds great.
Chloe: Real, Patrik, we are possibly shooting for a meeting with his doctor two days from now, and I know that’s not a whole lot of heads up, but I was talking to my stepmom before, and I said, I like to have a meeting with this doctor.
Patrik: Yep. Now look, Thursday is good. That’s two days out. I can make arrangements in 48 hours.
Chloe: Yeah, and I’m not trying to catch you in a short notice or a bond, and I appreciate your time. I just… That we discussed, it’s not concrete, it’s not a for sure deal, but that’s totally important because apparently there’s another doctor in the mix now, and she just even talked to my stepmom. That’s alarming too.
Patrik: Absolutely, absolutely. Okay. Dustin and Chloe, I need to run. I’m so sorry.
Dustin: Yep, got it, I appreciate you.
Patrik: No, no, pleasure, pleasure. I’ll email you the options and we’ll go from there.
Dustin: Perfect, thank you so much, Patrik.
Patrik: Thank you so much. Thank you, all the best for now.
Patrik: Thank you, bye.
Dustin: Hi Patrik. Can you hear us okay?
Patrik: Yes, I can hear you. Can you hear me?
Patrik: Hi Chloe, how are you?
Chloe: I’m good. Patrik, how are you?
Patrik: Very good. Thank you.
Patrik: Yeah, I can hear you. I can see you.
Chloe: There we go. Okay.
Patrik: If it drops out for whatever reason, we just go on a call, but I believe Zoom … I believe Zoom is so much better.
Chloe: Yes, sir. Yes, sir.
Patrik: I believe.
Patrik: Any updates since the meeting from this morning?
Chloe: I really appreciate your time and doing that.
Chloe: Yes. Right. Exactly.
Chloe: Yeah. Then I was a child … But this is my first time having to do this. Hopefully, it’s my last.
Patrik: Absolutely. Nobody sits at home wondering, “Oh, what do I need to do if my dad goes into ICU next week?” Nobody’s thinking that.
Chloe: But anyways. Sorry about my … I apologize for my stepdad too. I talked to her the night before and I told her about, my husband and I working with you and you helping us with this situation. And she’s just … she’s gotten up in age and she’s become older and just harder to deal with. She’s just more stubborn in her old age and doesn’t seem to understand what we’re trying to do by utilizing you in helping us in the situation. So..
Patrik: Yeah, I could hear it from what she was saying. I could hear that she was very appeasing, I think that’s … Would that be the right word to use?
Chloe: Yes, sir. Exactly. Exactly. She’s really bad about that. What did you take away from?
Patrik: Yeah. So I tell you what I took away from it. They try to frame it very positive. They try to frame it very positive. They were sort of saying its single organ failure or lung failure. What I heard is all other organs are working. And tracheostomy might be on the horizon.
Chloe: Yes, sir.
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Patrik: Now what I read between the lines in those situations as well is are they trying to appease?
Patrik: And are they not telling you the full story? What worried me a little bit is the doctor was a little bit defensive because I remember you were asking questions and she sort of was evasive.
Chloe: Yes, sir.
Patrik: So that’s a little bit of a red flag because I just go like, “What do you have to hide?”
Chloe: Right. I agree.
Patrik: “What do you have to hide?” So that’s a little bit of a red flag. Also she had to go away. I understand they’re busy. I’m not disputing that for a moment that they are busy. And they’ve got … there’s lots going on. I’m not disputing that for a moment, but for you, this is your dad. This is your family.
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Patrik: And being transparent, I believe is important. So then the nurse practitioner was a little bit more open and he answered all the questions. I still don’t believe that when she said, they’re doing everything that they can. I take that with a little bit of a grain of salt. She kept saying to you, ECMO is only done for patients that are waiting for a lung transplant. Now that’s just not accurate. There’s enough research out there or case studies out there. I’ve looked after … Over my years in ICU, I looked after thousands of ECMO patients for ARDS.
Chloe: Right. Yeah, for sure. Yeah.
Patrik: No lung transplant. No lung transplant. So I don’t buy that for a moment. But I guess take the positives. The positives that I heard as well, he is arousable, he is obeying commands. From my experience that is huge after so many days and weeks in a coma,that is pretty good. If he was to have trach, they can stop sedation, assuming he doesn’t need proning. He will need sedation if they keep proning her. If they can do the trach and he doesn’t need proning, they can stop sedation. And if they can stop sedation and he will hopefully then be even more awake, that would be very good. A lot of patients, especially after prolonged induced coma, sedation paralyzing … He’s been paralyzed.
Chloe: Yes, sir.
Patrik: Sometimes it takes weeks for them to wake up. Now the nurse practitioner told us, he sort of following simple commands, he’s opening eyes. That’s a very positive sign.
Patrik: But he needs … The challenge in ICU is this, it’s often two steps forward. One step back. So don’t be discouraged if today, tomorrow you might hear, “Oh yeah. He’s back in a coma.” Don’t be discouraged by that. It’s often two steps forward, one step back.
Chloe: Okay. Okay. Yeah, I think today we had … He was on the 70% oxygen today. They are moving around and his heart rate spiked. And they had to put him back on either 100% or 90% oxygen. They’re going to take him back out of that tomorrow, they’re going to lower oxygen levels again. So yeah, I agree with you, the two steps forward one step back that seems to be the case with him in the last couple of days.
Patrik: Yeah. But at the moment, I’m talking to people in similar situations every day. Most of our clients at the moment are in COVID situations. And it’s very similar, ARDS trach or no trach, very similar to your dad’s situation. A lot of patients don’t wake up and every patient is different of course, but especially after prolonged induced comas, patients might not wake up for two weeks, nothing new there. But this is encouraging. It’s encouraging. They were talking about the DNR. And in retrospect, I should have asked about the DNR as well. I do remember them talking about the DNR. Do you remember what she exactly said about the DNR?
Chloe: That as long as his conditions keep improving and he stays on the path that he’s staying on, which would end up leading him to a tracheostomy, they will also remove the DNR.
Patrik: Okay, good.
Chloe: At this point, I don’t think they’ve removed it. I know they haven’t. But if he stays on the path he’s on, they will remove it. And there’s some state laws that allow them to put that on there.
Patrik: Most hospitals in different locations do not allow putting what’s called a unilateral DNR because at the end of the day, this is unilateral. What that basically means is one, the hospital … and I’m pretty sure I can send you an article. I came across one fantastic blog. It’s a law firm, that’s specialized on medical negligence. I read that blog with much interest because they’re talking pretty much about the same things that I’m talking about, just from a legal perspective. I talk more about it just from a clinical perspective. They talk about it from a legal perspective, and I’m pretty sure I read a blog there in the last six months talking about that the laws in Texas have been changed to the detriment of a patient and a family. And this law firm was just as critical of this as I would be.
Patrik: Here in Australia, you can’t just have a unilateral DNR. I would argue by not resuscitating a patient against their will, I argue that could be perceived as murder, potentially at least homicide. That’s my personal opinion. I’m not a lawyer. I’m not an attorney. None of that.
Chloe: Sure. Sure.
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Patrik: My personal opinion is if I was a bedside nurse and the hospital told me, as a bedside nurse, not to resuscitate my question is, “Is this what the patient wants?” And if the patient can’t decide for themselves, is that what the surrogate decision maker wants in this case? Your stepmother, I understand.
Patrik: Is this what the surrogate decision maker wants?
Chloe: Okay. Yeah, because she would like them to attempt to resuscitate. So I agree. I mean, when we were allowed to see him for the first time in that COVID ward, that’s probably the first thing I noticed was that DNR.
Patrik: From the start? From the start?
Patrik: From the start?
Chloe: Right, yeah. Well, when I walked in, I saw my dad on the bed. I saw the breathing tube in his throat and I look up at the monitor … there’s a very large … fairly large monitor, and I wanted to see his vitals on the screen. And right on that monitor was a white laminated within red lettering DNR. And so I looked through the nurse practitioner said, “DNR, that’s do not resuscitate.” She said, “Yes.” I said, “Why is that up there?” She said, “Well, if we were to attempt resuscitation, because of the condition, his lungs … it would destroy his lungs.”
Patrik: You could argue that. Of course, you could argue that. If someone’s state-
Chloe: I was absolutely dumbfounded. I looked at her like she was crazy. And I looked at my stepmother, because I don’t know if she knew about this or not. And I said, “Well, I don’t …” I told the nurse practitioners, “I don’t think you can do that.” And she said, “Well, we have to, because we can’t damage the lungs.” And I was really just dumbfounded. I-
Dustin: And they already told us we’re terminal, that there was no saving.
Chloe: Right. There was the meeting that we had with her, where she told us that he was terminal. So it was really aggravating. I was more mad than upset.
Patrik: Right. Right. Well, nobody said last night that he’s terminal or this morning, your time. Nobody’s saying that he’s terminal.
Chloe: Right. Yeah. Exactly, right. Right, exactly. Now he’s opposite. Now, he’s on the road to recovery.
Patrik: Yeah. I’m pretty sure. I asked the question about the scars in the lungs. I’m pretty sure you both told me yesterday that he had scars in the lungs, but the nurse practitioner couldn’t confirm that last night.
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
- How to Eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
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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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