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-in-Law is with a Tracheostomy and on a Ventilator and We Feel that She is Unsafe in LTAC! Help!
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 put a Do-Not-Resuscitate order to his father-in-law without informing them.
Why Does the ICU Team Put a DNR (Do-Not-Resuscitate) Order to My Father-in-Law Without Informing Us?
Patrik: Thank you, how are you?
Dustin: Good, good. I appreciate you giving us a call.
Patrik: Oh, pleasure. Your name is Dustin, isn’t it?
Dustin: Yes, it is.
Patrik: That’s great. Dustin, how can I help you?
Dustin: I’m going to try and do my best to get this in the 15 minutes. Although I would be more than happy to pay you depending on what your time… If you have extra time. We’re in a situation, we did look a lot at your website. My father-in-law, back… Probably it’s been about almost 37 days now, was entered into the hospital with pneumonia, tested positive for COVID. I see a lot of this talk going on your page and your website. We’re having issues with the ICU. Unfortunately… My wife was going to try and make the call, but she may not have been able to. I gave her the number.
Dustin: Her stepmom falls into that trap of the five things you don’t do with ICU staff. She was very just, “Oh, they’re doing the best they can,” everything they said, she took their work for it. In my opinion, they stuck him in a room and his treatment has not been what it should be. He has been on a ventilator, intubated for more than a month now. Went in with pneumonia, they put the regular oxygen mask on, and not the CPAP mask.
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Dustin: He has anxiety, and so he kept pulling the mask off, so they went ahead and they put him on a paralytic and they intubated him. So he has… We kept being told by her stepmom, and we wish we just stepped in a lot sooner, but we kept being told by her stepmom that, “He’s getting better, he’s stable, getting better, getting better.” And then last Friday, they tell us he’s stable, he’s doing fine, still on the paralytic, and then the next
Monday, they call us and say, “Y’all need to come to the hospital, see him, he’s dying,” so we’re like, “Okay, so what happened over the weekend? You’ve been telling us all this time, he’s getting better, he’s stable.”
Dustin: We go… They wouldn’t let me in, but they let them in to see him. Four of them were allowed in, and we had an appointment with the nurse practitioner, who I was not overly thrilled with. She had terrible bedside manner, didn’t answer… I sent my wife with a list of questions that I had, about potential treatment, what our numbers were, and all her answer to everything was, “He’s terminal, he’s terminal, he can’t be recovered. His lung
damage can’t be reversed. There’s nothing you can do. You need to decide about pulling the plug.” They went in, they let them see him.
They had a do-not-resuscitate order on him, never discussed it with the family, nothing, that he was a DNR patient.
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Dustin: We had a meeting with the doctor the next day, who pretty much told us the same thing, says, “Look, he’s only got 5 to 10% usage of his lungs.” So I asked, “Look, if y’all done a CT, how bad is the damage?” “Well, we don’t need a CT. We can’t get him to a CT. We don’t have a mobile CT. No, he doesn’t need a mobile CT.” I say “When’s the last time y’all have taken him off the paralytic?” I said, “My concern is, he hasn’t worked his
diaphragm, and his lungs has been paralyzed for 30 some odd days.” So they said, “Well, we tried about three and a half weeks ago.
His blood pressure rose, we put him back down on the paralytic.”
Dustin: They couldn’t get him into a tracheostomy until he was 50% on the ventilator and his saturation and PEEP are at a certain level, so we’d been monitoring that. I called another hospital about an hour away from the current hospital he’s in now, they have a specialty unit there. They have a
fantastic pulmonary unit in there. I called a specialist over there. They even do ECMO the whole time. I’ve researched ECMO, all of that. We asked about ECMO, I told my wife, I said, “When you’re with that doctor, you ask her about ECMO.” And she says, “No, that’s for lung transplant only, he’s not… He doesn’t qualify for that.”
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Dustin: That made me mad, because that’s not what I read everywhere else. In fact, I read that in his condition it’s what it’s for. But… We got the other doctor and sent his medical records over to them, because they won’t release them to my wife’s step-mom, because she doesn’t have a medical power of attorney, so they refused. Now, she has the ability to pull the plug on him, they just won’t give her the medical records. But they did agree
to send them to the other specialty hospital. The other specialty hospital told us they would review his records and let us know what they thought.
Dustin: Well, the next day they called that hospital and tried to have him transferred, which is not what we requested. But something happened, I don’t know… Apparently the doctor got offended that we had requested to come take him, the other hospital come take him. Next thing I know, their treatment protocol has completely changed. They realized we’re talking to somebody. I have a friend who’s an ICU nurse for COVID, and I have another
friend who is a COVID occupational therapist. And Patrik, I’m telling you in three days, between Tuesday and Wednesday, when they’re telling us, “Pull the plug, he’s terminal, no lung function, you’re done.”
Dustin: Friday, I said, “Look, I want an entire list of every antibiotic he’s on. I want to know every time you’ve done a culture and how often you changed them, and I want to know what kind of pneumonia you’re saying he’s got, and I want to know if he’s still COVID, and they said, “No, he’s not COVID anymore. We got rid of that. We were…” They pounded their chest and act like they were big superheroes, went in and defeated the COVID,
but did nothing about the pneumonia afterwards.
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Dustin: They sent me the list, and all of a sudden they’re sending him for a new culture, and all of a sudden, they decided they’re going to take him off the paralytic.
They take him off the paralytic. Now at this point, when I asked for a list of all the medications and everything, and I asked about the fact that he’s still on a paralytic, and how has his lungs and diaphragm ever going to work, if he doesn’t… If he’s never given the opportunity to work, unlike a muscle. He was at a hundred percent oxygen on the ventilator, and he was at like 90% saturation at that point.
Dustin: Friday, they take him off the paralytic. They’re scrambling, saying, “We’re going to do a new culture. He has viral pneumonia. We’re going to try and find out what he needs to get rid of that pneumonia.” Next thing we know, the next day he is 65% on the ventilator oxygen, saturation is 98%. He wakes up, we have a video conference call with him. He’s responsive, he’s nodding. His numbers were doing really well. Next thing we know,
“Oh, we did a chest x-ray, and they’re better than before, and he’s stable.” Another doctor shows up and says, “Oh, I feel good about his condition, his prognosis.” Three days later after telling us to pull the plug. I’m so mortified and disgusted, it’s an unreal.
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Dustin: Over the weekend, they kind of fluctuated him, tried to push him a little, see what his lungs, and his.. He would do. If his saturation went down a little they’d up to ventilator, give him a break. So I’m sure his body is exhausted. We expect it to be kind of a roller coaster, and we know we’re not out of the woods. We know this doesn’t mean that he’s going to come out of the hospital, and he may not still pass. Our problem is we,
one, we’re worried about the damage they’ve already caused. Two, we’re worried about every time we talk about treatment options, like I’ve asked them, “Look, he’s responsive, and he’s nodding. What can we do for like some occupational therapy? Get his muscle, his legs… Just move his legs and his arms?”
Dustin: They gave up doing prone position therapy treatment like weeks ago, because they said they had concerns about facial edema, which concerned me, because if you’re going to have him on a paralytic all this time anyway, why aren’t you doing the prone position treatment? We just keep getting conflicting answers, and then now they’re just saying, it’s a bacterial infection. It’s not viral… Bacterial pneumonia, it’s not viral pneumonia.
It’s just… It flip-flops on a daily basis, and we’re just at a loss of what to do.
Patrik: Can I just ask quickly, and sorry, I think we might have your wife on the line now. Is that correct?
Chloe: Yeah. I’d like to apologize, Patrik. I’m sorry, I had an issue with the keypad entering my code. For some reason.
Patrik: That’s okay.
Chole: I apologize, and thank you for taking the time to speak to us.
Patrik: Pleasure. No, no. I just want to make sure we’ve got the right people on the call, not that somebody is dialing in randomly, that’s all. What… Now, so it’s been 37 days, no trach. Has a trach been offered?
Dustin: They… When I told you that last time they were attempting to take him off the paralytic, it was like three weeks, three and a half weeks ago. They attempted to take him off the paralytic, and they were going to attempt the trach, but they said his blood pressure rose and they put him back on the paralytic, and they said they wouldn’t do a trach until he was 50% on oxygen and his saturation was holding and didn’t drop below, I think,
90 or 94. I heard them say 90 at one time, and now they’re saying 94. I think they want his PEEP to be like, five.
Patrik: Yeah, that makes sense. That does make sense. What is it.. What would you say, what is your biggest challenge as of now?
Dustin: I think our biggest challenge is being informed. The nurses are avoiding us. The doctors that… I really could care less to speak to this doctor and the nurse practitioner who told us, “Decide on pulling him off the ventilator and he’s terminal,” and then he makes improvements like this, and in just a couple of days. Now he is on a roller coaster again, and it could be… His body is exhausted, but we’re not giving up. What we want to
understand is what… We don’t get any communication about what the plan is. We’re not in the room and talking to the nurses and doctors like you would be in a normal situation. We’re at the mercy of the phone, and nobody wants to talk to us. And we’re at the mercy of my wife’s step-mom, who’s very passive and isn’t as assertive as me and my wife are, so communication is a struggle.
Patrik: Couple of questions there. Number one, how old is your father-in-law? How old is he?
Dustin: 64.
Patrik: Oh my goodness, that’s very young.
Dustin: And no underlying conditions.
Patrik: And the next question is, how big is this ICU? How many beds are in this ICU? I’ll tell you why I’m asking that question.
Dustin: I wouldn’t-
Chloe: Go ahead.
Dustin: No go ahead, I’m sorry.
Chloe: I would say I saw at least eight.
Patrik: Eight beds?
Chloe: It’s not a big hospital.
Chloe: Yes, sir.
Patrik: Okay, the reason I’m asking that question is simply, Dustin, you mentioned that you’ve spoken to another ICU doctor, is that right?
Dustin: Yes, we have a friend who is an ICU, COVID ICU nurse, and then I have another one locally here in occupational. Now we did see online at their… That hospital’s website on the news and stuff, that they’re fighting for ICU beds, so we figure he was just a lost cause, shoved in a room.
Patrik: The reason I’m asking how big is this ICU? If you’re telling me it’s an eight-bedded ICU, that’s very small. Which means, I would argue that they would probably have fewer resources, also less experience with treating critically ill patients. Are you in a metropolitan area? Are you in a sort of rural or semi-rural area?
Dustin: It’s more of a
Chloe: I say eight beds, Mr. Patrik, its eight beds in the ICU COVID ward, there is another ICU area of the hospital. I have not been to that one, so I don’t know overall how beds, and then … ICU COVID, from what I saw, was roughly eight, maybe 10, maybe six. It was in that range, but the standard ICU, I’m not sure.
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Patrik: It doesn’t have to be that they don’t have the resources or the expertise, but from my experience, the bigger the ICU and attached to universities and all of that, I would argue that the more expertise, the more resources, just the more of everything. That doesn’t mean they treat you with respect. I’m not saying that, but just more resources, just more skills, more expertise, generally speaking. How do you… Is it a possibility for
us, maybe for the three of us to get on a call with the doctors, is that a possibility?
Dustin: That would be awesome. It’s just that we do good getting the nurse practitioner to call us back in the last couple of days. That was one of the things, maybe would be a question for you is, even in his condition, is it a smart move or is it too risky at this point? I don’t know what’s risky, or leaving him there or getting him transferred to-?
Patrik: Yeah, that’s a good question. Look, I’d probably would need to know a little bit more about what else is there .I understand the ventilation side of things, but what else is going on? Is he on any other mechanisms of life support? Generally speaking, I would argue that transferring a critically ill patient is possible. It’s not preferred, but it’s possible. If he can get better treatment in another hospital, then I’d say it needs to
happen. But I guess I haven’t got enough information to say to you, “Yep, this is something you should pursue, or you shouldn’t.”
Dustin: Let me ask you this, if… And whatever your consultation fee, whatever, we’re not worried about what it costs hiring you or whatever. I don’t know…. They won’t release the medical records to us. I don’t know if… When we called the specialist in the other hospital, they provided me with a medical authorization and they allowed the transfer of his records to them with that medical authorization. I don’t know if we have that option with
you, if you have a medical authorization because of your practice or what you do, that they would transfer the medical records to you as a medical professional.
Patrik: Yeah. Look, there’s a… It depends. Depends where the medical records are. By that, I mean, are they hard copies and you need to make copies or are they online, and you can access them just with a link to a website, and a user username and a password?
Dustin: I’m not sure they do, do you know how they sent them over to that hospital when you were there?
Chloe: They faxed them, through the medical records office inside the hospital. I had them faxed it to the specialty hospital.
Patrik: Most likely it’s still paper-based. Many hospitals now, are all online, and we have access to many medical records online now with our clients. But I’m also cognizant of the fact that a lot of hospitals still operate paper-based, and they have to copy or scan, and fax and email, and all of that. What I don’t understand is…
Sorry, and Ma’am, I didn’t get your name.
Chloe: It’s Chloe.
Patrik: Chloe, are you the medical power of attorney for your dad?
Chloe: Unfortunately, I’m not. Yeah, I’m not.
Patrik: The reason I ask-
Dustin: He doesn’t have one in place.
Patrik: The reason I’m asking is, the medical power of attorney should be able to get access to the medical records in no time.
Dustin: And that’s why we struggled, and we finally just said, “Okay, great, if they’re willing to send it to the bigger hospital, at least give his records to somebody else, who can look at them.” And they’re not all just here, because we were concerned that nobody else would be get to them. Even her stepmom, his wife doesn’t have power of attorney, they wouldn’t give her the records, and so that’s been a struggle for us.
Patrik: So there is no power of attorney at the moment?
Dustin: No.
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Patrik: Let’s just say they would ask you to… Or let’s just say, they would say, “Look, we want to do a trach,” let’s just say, they would say that. Somebody within your family would still need to give consent. They couldn’t just do a trach or any other procedure without you either giving verbal or written consent. Who would that person be? Who would they come to if that was the case?
Dustin: That’s his wife.
Chloe: Yeah, step-mother. They had asked her permission just to change the PICC line, they’d called her the other morning, had her authorize the change of the PICC line.
Patrik: Well, if that’s the case, I would argue that she could request the medical records. I’m pretty sure she could.
Dustin: She tried, but they wouldn’t give them to her.
Chloe: Correct.
Patrik: On what grounds? Do you know on what grounds?
Dustin: That didn’t have a medical power of attorney.
Patrik: But she’s got enough power to sign off a change of the PICC line. I don’t…
Doesn’t make-
Dustin: That’s what my argument was. She can make the decision to pull him off the ventilator, off his life support, but they will not… And her insurance company can pay the bills, but they will not give her the records.
Patrik: I would dispute that straight away. I would also dispute that you as the daughter, Chloe, I would argue that you should try to get the medical records, you should definitely try. I’m not saying it’ll be an easy undertaking, but nothing ventured, nothing gained sort of thing.
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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 FaceTime 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, he was stable. And so her stepmom… The nurse snuck in his own phone and FaceTime 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 FaceTime.” They replaced one of the phone calls, so you get two updates a day from the nurse practitioner. “One of those calls includes a FaceTime call,” he said.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
