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 Cathy, as part of my 1:1 consulting and advocacy service! Cathy’s dad is critically ill in ICU but eventually passed away. Cathy asks why the ICU team seems to have a “one size fits all” approach to every critically ill patient in the ICU.
Why Does the ICU Team Seem to Have a “One Size Fits All” Approach to Every Critically Ill Patient in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Cathy here.”
Cathy: I was like, “If we got to the point where, okay, it just became so overwhelming that I had to put him on a state program and he had to go to a nursing home, I would address that when we got to that point.” But it just wasn’t… And this is my dad’s particular situation. Just like I could never have home health needs in here before he would always fire them and get rid of them. When he was in that situation, I couldn’t have lots of people in here either.
Patrik: Yeah, sure.
Cathy: That wasn’t-
Patrik: Yeah, no, and it’s a fine balance for us. It’s got to be the right nurse to the right client or right team with the right client. And that is certainly a challenge in and of itself.
Cathy: Right. Exactly. It is. But it’s still the far better option-
Patrik: Oh.
Cathy: … than… And a lot of times the insurance companies are making it worse for themselves because it’s like, I will have to say to them, “Do you not hear what I am saying? I have told you, we have a very clear plan here. My father would not like any invasive procedures. The only thing that you really got him on now is a ventilator. So I don’t need for you to try to come back and say, ‘His brainwaves, you don’t sense any activity.’ I don’t need you to come back and say, ‘Oh, I think he might have colon cancer. Let’s do a colonoscopy.’ We told you, we’re not doing all of that. We’re just telling not putting off the ventilator and he can breathe at home. And I’m going to take that over and this not for you to worry about.
Cathy: And if you, as the insurance company want to check on my setup because you’re paying for the ventilator, you can have your skilled nurses come here for the once a week or whenever you want them to do that, but he’s not staying here.” And because I wasn’t relying on them for that funding, I was like, “You pay for the ventilator in LTAC, you can pay for this home ventilator that he does very well on in his place. And I’m never going to send you a bill.” So I think that’s why I had a little more leeway just because I was like, if you want to do it, fine, I don’t really care, but he’s not staying here.”
Patrik: Yeah, yeah.
Cathy: Yeah, yeah.
Patrik: Cathy, I’m wondering, and if you’re telling me no, that’s absolutely… I’m wondering whether you would be interested in coming on to maybe another 30 minute call. If we could record that as an interview, for our listeners because I think you’ve got so much value in there.
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Cathy: Okay.
Patrik: Especially, what you’re saying around hospitals are not listening. I mean, I know that already and families know that too, but not everyone has the guts to stand up. Now, I mean, we’ve tried to encourage people, of course, but… And I can’t tell you how many families come to us and they say things like, “Am I just making this up? Are they not listening when I say, no? You’re not making up.
Cathy: They’re not. They’re not listening.
Patrik: They’re not listening.
Cathy: They’re not listening.
Patrik: And death for them is a one size fits all. One size fits all.
Cathy: Yeah.
Patrik: It’s terrible.
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Cathy: It is. And the way that you responded to when I was like, “The nurse practitioner said, ‘we can take care of this medically.'” The other couple of people that I’ve mentioned it to, they were like, “What?” Then I said, “Yes, this is what they do, they are totally desensitized.” You are not… If you’re doing this as a person of faith or you’re just trying to figure out the right thing to do, they are employed by insurance. They don’t do medicine. They bill insurance companies. That’s it. And it does not matter what you say, they have in their mind the path that you want to go on.
Cathy: Because even on that Tuesday, when I was like, “Okay people, wrap it up, I’m taking my dad home. This is the end, it is not going to happen here.” They took their sweet time and had to send in their ethical officer. And I had to explain to them again.
Patrik: Oh. Yeah, yeah.
Cathy: Yeah. I’m like, “Okay, you’re all not listening. You’re not listening. I’m telling you you’re not doing hospice, you’re not doing that. That’s all you’re coming back to. What is going on in your brain since you can’t process that information. I don’t know, but I’m not talking to you anymore about it. My father’s coming home now.”
Patrik: And did the ethical officer want to stop you from doing that?
Cathy: No. No.
Patrik: Okay.
Cathy: Because, again, for me, I had laid all of this out to them in the beginning. And at this point, because by the time we got into this hospital, I’ve been taking care of him for over two months by myself. And his thing was, “Cathy, you need to understand that people just don’t do this. They just don’t put this time.” And I’m like, “Yeah.” And it’s like, “It’s not like you all have helped me at all. I have laid this out from the scriptural basis for what I’m doing to the framework that my family and I have decided about what we’re going to do, what’s consistent with my faith. And you still come back to me and tell me things that you know violate the things that I told you, I’m not going to do, because you want to do it your way for whatever reason. And I specifically told you I’m not doing that.”
Cathy: And I said, I was like, “If we have to go to court, we can go fight it out there, if that’s what you want to do, but you’re not going to tell me that just because my father didn’t give me power of attorney, that you’re going to try to control this process, not happening. Not happening.” But there was nothing… And again, the other thing is I had read up on how you declare somebody brain dead. If I had not spent time with my father, that’s because they had him on a heated ventilator. And that did not, he didn’t do well on that at all. There was too much mucus.
Patrik: Right.
Cathy: The ventilator had shut down. We had the backup ventilator that I had, it had the old circuit that’s not heated. And once I switched him to that, he was totally fine. And so the ventilator, because it was having to put too much pressure into his lungs, and so it stopped. And my dad just started breathing on his own. Again, tidal volumes were not good, but he was breathing on his own. And I would throw that back at them. And I’m like, “I know what’s going to happen if you turn off the ventilator, he’s going to start breathing on his own. You’re not going to be able to declare him brain dead. So you want to go to court and we can fight that out. Otherwise, if he’s at the point where you cannot do anything, it’s time for him to go home.” And they couldn’t argue with me on that.
Cathy: You couldn’t argue with… It’s like I would come in with my clipboard and I’d be like, “White blood cells, counts. Okay, they’ve decreased. Red blood cells, okay, you gave him a unit of blood and they’ve gotten normal.” I would just go through everything every day. And you couldn’t argue with me on that. I’m like, “Why is he here? He’s just sitting there breathing. Why is he here?” And I think that language is what people don’t have-
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Patrik: Yeah, they don’t.
Cathy: … to push back.
Patrik: Yeah.
Cathy: Because if we were to go into a court and I’m like, “This is it.” And I think you had mentioned this and I told them, “Show me your policy on, going to disconnect the ventilator and all that.” “We wouldn’t do that. That’s not ethical, blah, blah, and blah.” It’s like, “Then why are you having all these conversations with me about?”
Patrik: Yeah.
Cathy: Okay. So again, for me, I’ve always had, my dad raised us to have an interest in health. I’ve always kind of followed up on those things. So I would go through whatever was in the labs that you kind of used to determine where the person is because I’m like, “I can’t get you all to do your jobs, because all you do is come in here and tell me that you want to put him in hospice, but you’re not telling me what’s going on.” And that’s the other thing I said, “You can’t say that he’s not responsive because every time I turned him to change, his face, he gets annoyed and you can see it in his face. No, he’s not responding to you, but you can’t say that what’s going on there is brain dead. And I’ve told you, this is what I consider life to be. And you are killing him if you do that. Is that what you’re trying? Is that what we’re finding out here?”
Cathy: “Oh no, no, no.” I’m like, “Okay, then why are we here? I have things to do.” So, yeah. So with a lot of people, it’s like yes, you have to understand, they are not listening to you. This is not about your health. All that stuff that you see on TV… And that’s the other thing, it’s like, stop watching, understand that the hospital shows that you’re watching on TV, that isn’t real. That’s not how it works. They don’t come in with this long scientific information. They’re just like, “Oh, his EKG are really bad. Oh, he’s got a bed sore. Why would you put him through this?” They’re not breaking down what is going on, you should pull it out of them.
Cathy: And you have to be able to come back, you have to throw back, you have to look at it as if you’re in a court of law. And that’s how I looked at it. And I was like, “Here’s all my evidence. Why are you keeping him here? There’s no reason for him to be here when I’m saying that I’m going to take care of him and I’ve already demonstrated that I’m going to do that.” So yeah, when it was at the end, there was never push back because that was always my conversation. It was always based on, “Here’s the data. He doesn’t need to be here. We’re out. So make it happen, get out of my way.”
Patrik: Yeah, yeah. Absolutely. And that is, I guess you had the drive to make this happen. I mean, this is definitely not for everyone.
Cathy: Right. Exactly.
Patrik: We can make it happen as a service, not in every location, of course. We can make it happen as a service. But even that, it’s not for everyone, like you just said, not everybody can tolerate to have strangers, “strangers help” 24 hours a day.
Cathy: Yeah, absolutely. So yeah, I’d love to do that. That’s become part of my mission because just the other people that I have come across who were like, “Yeah, they put my dad on hospice. I didn’t know what to do.”
Patrik: Yes.
Cathy: It doesn’t mean that your loved one is going to be healed. As I said, I have peace from this because I put this in God’s hands. I was just trying to do what was consistent with His word. But the hurt is not going to go away, the tears are not going to go away, but you will have peace in your spirit that you did the right thing and you really advocated for that person. And you just didn’t let yourself get run over. You had some control over the situation because the medical establishment is not… Whatever you thought it is, thought it was about healing, and what’s the best for you, that is not what they’re about at all.
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Patrik: No, no.
Cathy: It’s not what the system… And I said, “It doesn’t mean that they’re horrible people, but they have aligned themselves with a system that is using your illness to create profit.” That’s what this is. So they’re going to run tests and act like they don’t know what’s going on. They’re going to do all of that, which is not always in your best interest. I was like, “They’re running all these tests after we’ve told them, and ‘we’re not doing that.'” On Friday, they wanted to do other procedure where they put a camera down in his lungs, and I’m like, “No, we told you’re not going to do that. Why would you… I don’t… But again, you want to be able to bill his insurance because it is going to keep paying. But yeah, part of it is just, you have to recognize they’re not listening to you.
Patrik: They’re definitely not. And what they’re not doing as well, they’re not creating a safe space for families. It’s not a safe space, is it?
Cathy: No, not all.
Patrik: It’s a dangerous space.
Cathy: its dangerous space and one that you have to be in all the time, because they’re like, “Oh, you’re here all the time.” I was like, “Yeah, I have to be, because I don’t know what you all are doing when I’m not here. And yeah, I don’t trust any of you. So yeah, I’m going to be here when I can.” And that is what people have to recognize. And you have to do things differently if you’re going to have peace about these situations, because just some of the conversations that I just had, I’m like, “If I were a different type of person, this would not end very well physically for you because you have just said things and crossed a little fighting words.” Just the disrespect in this time you’re dealing with these situations, it’s just inexcusable and folks have to understand that that’s where the medical establishment is right now.
Patrik: Yeah.
Cathy: Yeah. I would love to help however I can.
Patrik: Oh, look, if we could, I mean, what you’ve just shared with me, so many people and for families, I mean, my biggest frustration with doing what we’re doing is people come to us when it’s too late.
Cathy: Right. Exactly.
Patrik: They come to us when it’s too late. And there were so many, I would say 30% of the inquiries that we’re getting is, “Hey, I lost my mother, my father, whatever, my spouse six months ago, I have no idea what I was-
Cathy: Exactly.
Patrik: … signing off on.”
Cathy: Right. Exactly. Exactly. As I said, this has become, this is like mission work for me now because what they’re doing is just wrong. And it’s not just about… It is about their health, but you’re affecting people spiritually and they’re going to be negatively affected for life because people think they’re going into a space where they care about you, they’re going to tell you the truth and they’re going to respect what they’re saying, and they don’t. If you want that to the extent that they can help you, you have to fight for it. And that’s going to be more stressful than whatever illness that you’re dealing with. But people have got to understand that this is where we’re in right now because it’s stirred up, I would say, just some things in my family, because this is what they did to my grandfather.
Cathy: Another person was like, “Yeah,” because when I was telling them, “Yeah, I’m waiting for the police to come and for them to clear him so they can take him to the mortuary. And they were like, “What?” And I was like, “Yeah, when you have an unattended death, because they want to be in control of everything, they have to come in here and make sure that you didn’t kill the person.
Patrik: Of course, of course.
Cathy: And I said, “But I was willing to go down that road because I was not going to have hospice in here telling me anything. And that’s what you just have to do.” And I said, “I have plenty of witnesses, everybody knew that this was happening. It’s not a big deal.” And then someone was like, “You’re absolutely right, that’s what they did to someone else’s relative.”
Patrik: Yeah, yeah.
Cathy: They were like, “They came in and shot him up with morphine.” I said, “Exactly. And that was not happening here.” And you have to step in and do what you need to do and come together as a family to protect them from that. If you know that’s going to affect your spirit, because you’re going to spend the entire time saying, “Well, did I do the right thing? Will he have lived?” You don’t know that now because you listened to someone tell you that someone is brain dead because their little test didn’t pick up any brainwaves, but the person is kind of moving when you come in and move their arm, or my father’s case, you cut the ventilator off and he breathes on his own.
Patrik: Yeah. Well, then he’s not brain dead. I mean, there’s clear guidelines and definitions around what is brain dead.
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Cathy: But if I didn’t have that language of what that definition was, the only thing that I heard them say was, “We have to think about quality of life. And would you want your dad to live like that?” I’m like, “That is not for you to decide. You were supposed to tell me that, ‘Okay. Well, there’s really no point in doing a test to see if he’s brain dead,’ because we cut off the ventilator, he breathes on his own.” I had to figure that out for myself. I had to go look at guidelines myself, for how you declare someone brain dead on my own. There’s nothing that they ever told me because they wanted to leave enough question in my brain so that I would do something that is totally against my faith.
Patrik: Did you ever think, and I want to come back to the spiritual and the faith. I mean, I’m a spiritual person and I believe in God, not always have been believing in God, but I do believe in God now. But is that something that you think any health professional you came across in this situation has been resonating with?
Cathy: No.
Patrik: No? It’s just completely falling on deaf ears, isn’t it?
Cathy: Yes. It’s completely fallen on to… And even people who would say, “Oh, I’m praying for you.” Because I had this conversation with one of the nurses in his insurance because they wouldn’t pay for the bandages that I would put on his bedsore. And I told him, I was like, “What you were doing is criminal. You’ll pay LTAC to sit up there and cause him to have a bed sore, but I’m here trying to… I’m asking for anything else, but you won’t pay for it when he comes home.” But even in that sense, I would always lead with that. Because again, you’re thinking that this person is on your team. You want to give them the full picture. And I would start from the beginning. I’m like, “God, breathe life into us. We are part flesh and we’re operating in the spirit at the same time, all of that constitutes life.” Genesis 2:7.
Cathy: “Yes, yes, yes, we’re praying for you. I do things for my faith, blah, blah, blah, and blah, blah.” After I said that, “So now you understand why I don’t believe in the definition of brain dead, because then I look at the brain as an organ and when it stops working, okay, so you’re not conscious. You break your leg, you can’t walk on it. Just because you’re not conscious, you still are alive in the spirit. And both of those have to go for someone to have to be dead.” So even after I said all of that, they would say, “Well, are you really doing this for yourself because the machine is keeping him alive.”
Cathy: I’m like, “No, he isn’t. You didn’t listen to me, because I told you, when God calls from the spirit world, his body is going to follow. And all of this manmade stuff that can’t give him.” He died. I think the police got here few hours before his death. I kept the ventilator on the whole time. He was flat line the entire time that that ventilator was on. The ventilator was not keeping him alive, oxygen, keeps him alive. And then you’re dead. You’re fully dead. Every person that I would explain this to was supposed to or we can make this happen medically for you. People who are-
Patrik: I’m asking-
Cathy: … possibly praying for me, for our spirits. Okay?
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Patrik: Yeah, yeah.
Cathy: So, no. Because their default is how they’re trained.
Patrik: Yes.
Cathy: And they think that is consistent to go against your faith when I’m like, “My faith is the foundation of how I do life. And my thing is, if you can’t operate on that, you can’t help me. Because even though I’m telling you this and explaining this to you, you’re coming back recommending things that are totally going against that. So you didn’t hear me. You don’t care. I don’t know what it is because my plan has been the same since then, fix him up to a point where somewhat stable.
Cathy: I know how to monitor blood pressure, heart rate. I know how to do all of that. And if it gets out of my control and I can’t do anything for him, I bring him back to the hospital, you get him stable, then he comes back home. That is always the plan. You don’t need to be concerned about how this affects me. You don’t need to be concerned about how hard you think it is on me, that I need to have my own life and all of that. And this is after I’ve told you, I have to honor him as my parent. That’s what the world tells me to do. I’m not honoring him by putting him with people who ignore him all day.”
Patrik: Yup.
Cathy: Yeah. “But still you will say, well… Because the nurses that would come in to, the skilled nurses that would come in here to assess, never did anything. They would walk in and was like, “Oh my goodness, you have a full blown ICU in here. You know the other will take him.” I’m like, “Well, clearly I don’t want to put him in this insurance because he’s in his own bed.”
Patrik: Yup.
Cathy: They don’t listen.
Patrik: No, they don’t listen.
Cathy: You have to take it upon yourself to get out of that situation when you want because they don’t have to do it.
Patrik: And what hospital did you start off in? Is that a private or is it… Some hospitals-
Cathy: It was a private.
Patrik: Private. No affiliation-
Cathy: What’s that?
Patrik: No affiliation with the church or anything?
Cathy: No, no.
Patrik: No.
Cathy: Even though my father raised us to be people of faith, parts of scripture have meaning when you get in certain situations. So I had read that piece of scripture my entire life. It specifically had meaning in this circumstance. If you are affiliated with anything that’s supposed to be based on the bible, according to me, how I look at this, the way that you do business would be consistent with that. And that is, their training overrules, all of that. They think that it is…
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Cathy: I was like, “You can have a career that’s consistent with your work. The medical profession could operate in a way that’s consistent with someone’s faith.” So you can do things, but they have become so..
Patrik: I see, I see. Yeah, yeah, yeah, yeah.
Cathy: Yeah. It’s all marketing.
Patrik: Yeah, yeah. It’s marketing.
Cathy: So you think that they’re doing that, but they totally default to what’s the insurance going to do? How much are they going to pay? Okay. He has great insurance. We’re going to keep him in here. Doesn’t matter what the family said, we don’t want him here, we will take him home. Doesn’t matter that the family says, “We consider this to be killing him. And we’re willing to take on what we need to do.” It didn’t matter. They were waiting me out. And the reason he ended up getting the first infection, because, now I might share this with you. My father was stable within 48 hours, stable in the sense that his blood pressure was under control, he was not taking any vasopressors. He wasn’t even taking his high blood pressure medicine. Everything was stable. He ended up staying there because he got an infection. And they were trying to wait me out thinking that I was going to turn off the ventilator.
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
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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!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!