Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM 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
What Does Dying In Dignity Mean To The ICU Team Who Pushes Withdrawal of Treatment?
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 is it so easy for the ICU team to discuss with families about withdrawal of treatment for their loved ones when they know how precious one’s life is.
Why is it so Easy for the ICU Team to Ask Families about Withdrawal of Treatment for their Loved Ones?
Cathy: And so that’s why I have a lot of peace about it, even though I … As to be expected, I have my breakdowns throughout the day. Just, it’s odd, not walking around and he’s there and all of that. But my message just to anyone that will listen is, these people, these hospitals, this medical establishment, they’re just about killing you. They don’t have any empathy for you. It doesn’t matter how you lay it out, they don’t listen. And as I
said to them from the beginning, I never wavered in what I wanted you to do. And that’s what I told her. I said, “I have hired you to do a job, and you’re overstepping your bounds. I said, “You’re trying to tell me what I’m supposed to think about the situation, and it’s just not for you to do. And if I say that I’m going to take care of my father, you don’t need to worry about how that happens. As long as I’m doing the best that I can to take care of him. He’s not staying here. I don’t want him
staying here.”
Cathy: And as I tell anybody, it’s like, “If I can figure out having zero knowledge of ventilators and figure out how to do it and keep my dad here and figure out how to have people in to help me.” I was like, “It’s not easy. It’s not going to be easy, but you’ll have peace about it in the end that you did what was right in the sight of God. And you did what was right by them because those people don’t care.
Patrik: No, no.
Cathy: They don’t care.
Patrik: No. I’m sure the whole discussion launched or instigated from your end around what you believe is right for your dad fell on completely deaf ears.
Cathy: Yes. Yes.
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Patrik: And that’s how desensitized, what you mentioned earlier, the industry is. And that’s why I couldn’t be part of this anymore. They’re so desensitized, they’re completely, and your dad is just number.
Cathy: Right. And they’re not trying to listen. And you can’t, no matter how you lay it out for them, they don’t care because they have in their mind… Even the last conversation, I was like, “I’ve told you all I’m not putting him in hospice. That’s why I told you I consider that to be killing him. Why do you keep bringing that up?” Well, there’s this misconception about hospice, do you, or do you not inject them with morphine? And what do you
do that for? “Well, that’s just for…” I was like, “No, I don’t really see it that way because my father is not in pain. I’m looking at him right now. He’s not in pain. So why would you even suggest that? You’re just totally disrespecting me and my family and everything that we want to do with him.”
Cathy: And I said, “God is going to be faithful to him, and when he takes him, it’s going to be peaceful, he’s not going to be in pain. And that’s exactly what happened. It was more than five months of no sleep. And it will take me months to get these bags out from under my eyes and to really process everything. But it was worth… Even the middle of, I was like, “If we have to do this for 10, 15, 20, more years, dad, this is what we’re going
to do, because right now you’re not dead. So we’re just going to continue until God takes you home.” And that’s what he did. So I just, I wanted to share that with you. And again, thank you because I hadn’t had that initial conversation when I was like, “Well, he’s just going to sit there. Can I do that at home? And you’re like, “Oh yeah, absolutely. You can do that.”
Cathy: I wouldn’t have had this peace because I wouldn’t have had that backbone to someone saying, “Yeah, you can do that. Absolutely.” And it’s just been a blessing. Even the nurse that would have come in, she’s like, “I just cannot believe you’re doing all this. This is so wonderful.” And I was like, “They don’t care. They don’t listen. They disrespect, you, and then you’ll spend the rest of your life regretting things.
Patrik: Yes.
Cathy: And I miss my dad, but I don’t regret that I did everything that I could so that he went out in a way that I know that he would want, and he would not have wanted to have passed in that hospital with those people not paying attention to him.
Patrik: Can I just ask, Cathy, so when you took your dad home, so you were the sole caregiver, you said you had a little bit of help from family, but at the end of the day, it was you 24 hours a day?
Cathy: Yeah. I realized that I was going to be the 24-hour nurse, because when I would try to hire the private duty nurses, the majority of the time if something was happening with my father’s oxygen, it was that the pieces needed to be changed. So there was a time period where I still had him on the Jevity, that kind of liquid formula, and he produced a lot of mucus. And then I switched him over to real food and all that mucus went away. But
before that, it would clog up the tubes in his tracheostomy. So I would change it always once a day, but sometimes two or three times a day, and just a lot of it came up or whatever. I was constantly changing those tubes. So if you try to hire a private duty nurse, they would do everything except change the pieces on the trach.
Patrik: Really?
Cathy: Yes.
Patrik: Why not? Well, because they wouldn’t equally hire the private docs, and nursing would have to be an ICU nurse in order to do that.
Cathy: But the thing is, they’ll tell you, “We’ll send someone out there that’s trained on the trach. Their definition of that was like taking a swab and cleaning up the area around the trach. But the hoses and things like that, that might get clogged, they would not do that for liability reasons. They wouldn’t change the circuit.
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Patrik: Oh, yeah, yeah, yeah. Of course. No, no, yeah.
Cathy: So my thing was, “Well, if you’re not going to change the circuit, then I don’t need you for that. I don’t need you.” So I found an agency where they would come during the day while I was working just so I could concentrate on work for three days a week. I would have them come and they would change him and things like that. And then I taught, because the person that own the company sometimes will come out and I taught him how to
change. I’m like, “It’s like LEGO pieces.”
Patrik: Yeah sure.
Cathy: “You’re just taking this on it, but I mean, it’s not that huge of a deal. And if you’re a nurse, you should be able to do this.” So I’d have that kind of help, but at night it was this… And this gets back to, my father was aware on a spiritual level because the longer I would have them here, the more his heart would go crazy. And he would indicate that he didn’t want them there. And so at night I would just kind of take… And that never
applied when I had my cousin’s child here, because he knew that he was family.
Patrik: Yes. Sure.
Patrik: But when I would have them here for… It was fine if they were here for four or six hours, but any longer than that, you would hear him, the heart monitor going off and oxygen. I mean, that’s just how it was, because again, my father was still here in a spiritual sense and he was still in control. So, yeah. So yeah. So I would take naps at night. We’d gotten into this routine where he didn’t like… I tried to turn him every two hours,
but between the hours of 12:00 and 6:00, if I touched him too much, when it was time to do wound care in the morning, his heart would just flutter and I’d be like, “Okay, fine, fine. So I just got to kind of get that routine going. And then having them here for longer periods when I knew that he, it wasn’t too much to do with her. But yeah, it was just me. Yeah, it was fine. It was fine for that period.
Cathy: And that period was pretty much from five months ago till a few weeks ago?
Patrik: Yeah. So until a few weeks ago. Yeah.
Cathy: Right. So that would have been very stressful for you, I would imagine. But I totally understand that this was time well spent for you.
Patrik: Yeah.
Cathy: And it was-
Patrik: What would you have done if this had gone on for another six months? Did you have a plan B?
Cathy: I would have had to adjust, because it wasn’t stressful in the sense that, “Oh my goodness, I’m having to do this.” I was quite at peace with that. But I would have had to adjust my sleeping schedule.
Patrik: Yes, I can imagine.
Cathy: And I just would have had someone come in because, like I said, from like 12:00 to 6:00, I might have changed him one maybe. And then maybe around 5:00, I checked him. So I would have had someone here that was overnight, so I could get-
Patrik: Some sleep.
Cathy: … at least an hour sleep at night.
Patrik: Absolutely.
Cathy: That would have had to change. But the emotional component of, “I’m stuck in this apartment and blah, blah, blah,” didn’t bother me at all. The fact that he was not in the hospital and not somewhere where people were ignoring him that kind of propelled me forward-
Patrik: Wow.
Cathy: … because I could still work. I could still work. When someone did come, I could still get out and go to the grocery store and things like that. But I have just resigned myself too, that’s what I’m going to be doing for now, for as long as God has me do that. But I would have to change my sleeping schedule. But other than that, once we got our kind of schedule going, that was my purpose. That was, this is what you’re here to do. You
honor your dad by keeping him out of those places.
Patrik: Right. And there was no resistance from the hospital to take him home in the first place because that’s what we are sometimes seeing. If the families want to do it, they would have to sign a waiver that it’s against medical advice and this, that and the other. That wasn’t an issue?
Cathy: No.
Patrik: Which state-
Cathy: And again, that is because I could speak every day. I made them go over his labs with me. So I would say, “White blood cell count is good. Hemoglobin hematocrit is good. Why is he here?”
Patrik: Yup.
Cathy: I had those conversations with them. I don’t know if everyone else… They would come in and just say whatever. The first time when he was at LTAC and I
was like, first of all, that doctor or nurse practitioner, I had to request a meeting with him. It’s just like they were trying to run out the clock, because they knew he wasn’t going to be conscious, they weren’t going to wean him, but they still wanted the money. But I called them in and I said, “Look, again, I don’t understand what is going on, such that you all do not understand me. If you can’t wean him, we’ve already established that there is a home ventilator, he needs to go home. So what are the benchmarks here?” And they would say, “Well, his blood pressure…” I think that his blood pressure was low because my father typically historically has had really high blood pressure. So they try to make that an excuse when he was at ICU.
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Cathy: And I’m like, “His blood pressure has been high for 20 years. If that’s the only issue we’re dealing with, he can come home. There’s medicine for that. Did you not tell me I could put medicine in his feeding tube? Okay, and that’s what we’ll be doing.” So when he got to LTAC, it was, his pressure was really low. So I said, “Well, what type of medicine do you give him such that it doesn’t become a problem again?” And so they got kind of
scared and freaked out. And then they came back and they started giving him fludrocortisone and midodrine. And that helped.
Patrik: Sure.
Cathy: And I said, “Okay, so what are the other issues? Okay, he’s got an infection. Okay. So his white blood cell count has gotten better. All of these other things have gotten better.” And I said, “I’m going to take him home. And we’re going to put some real food in his feeding tube to see if that helps with…” He had very low protein. He was that typical senior. He stopped eating. Wasn’t eating enough, all of that. And I was like, “He
doesn’t need… What’s the therapy for that? Okay, we’re going to try some real food. He does not just sit in here for that. Why are you trying to hold his hostage?” I told him he can come home. And so when I kind of pushed them on that, and then when they tried to lock the hospital down, I was like, “Absolutely not. Absolutely not. We’re not staying here.”
Patrik: Yes. Yeah, yeah, yeah, yeah, yeah.
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Cathy: And every day I said, “It’s time to wrap all of this up.” We were supposed to do training, so I know how to do the vent and the trach care and all of that. So I would just ignore them and still come up there during the times when I was supposed to be and be like, “Yeah, I’m here for training. Bye.” And so they just got tired of me and they thought that, I think they really just thought I was going to fail.
Patrik: Okay. You know if I may share, we had a similar situation where the family was prepared to take their loved one at home. So they would have needed 24 hour care with a licensed provider and this, that, and the other.
Cathy: And the other thing though to consider is, if someone is asking an insurance company, because my grandfather had this problem, if they’re recommending that you have 24-hour care and you’re asking an insurance company to pay for it, they are going to shut it down. I was like, “I’m taking on the expense myself. I’m going to be a 24-hour nurse. You told that you were going to train me to do this. He can come home.” And I think they
thought that I was kind of going to fail. And again, I was really hard on them, especially when he got the second infection, I’m like, “I got him out of ICU. I come here, I tell you to do one thing. And you knew that if he didn’t regain and that you’re going to wean him and you kept him here long enough to get another infection. And now he has to stay here when he could have been at home. How many times do I have to tell you that?”
Cathy: I was like, “But because his insurance is going to pay you for 28 days, no question,” I was like, “What are you doing here? What physical therapy are you doing?” I had to jump on them about that. I was like, “Hey, where’s the physical therapy?” They had this worksheet on the wall that says they’re to do the exercises for edema. I think they said three times a day or something like that. And I said, “So what’s the protocol? What are we
doing here?” Because at the time you could only visit from 2:00 to 6:00. So I come in, I’m like, “Did he have physical therapy three times? Did you do the exercises three times?”
Cathy: And I’m like, “Where are you getting that from?” I was like, “The sign that is on the wall, why is he here if you’re not going to do anything, because I can at least do the physical therapy and edema stuff at home. He doesn’t need to be here. Why is he here?” So that was really my posture with them. And I think they had gotten really tired.
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Patrik: Yeah, sure.
Cathy: And they felt that I was going to fail. But for me, it was being able to talk to them about the labs and say, “This is normal. This is normal. This is normal. This is normal. This we can deal with medicine. Why is he still here?” And so when my dad got home in last year, he didn’t need midodrine or fludrocortisone, because I didn’t have any problems with it after he got home. It was more like giving him this protein solution, because
of course he got a bedsore when he was in ICU the first time. I’m like, “This person sits here for two years on his couch dealing with dementia, not one bit sore, no breaks in the skin, and he comes here for less than three weeks and our whole backside was opened up.” It was ridiculous. So yeah, and I think that also scared them to a dozen assume for that. I was like, “How does that happen? And you’ve got the physical therapist down the road, but how does it happen?”
Cathy: So, yeah. My grandfather ended up, my mom put him in a nursing home and he didn’t last six days. This is a man who was in… When he started this whole process, he could still walk. But within six days of being in the system he passed. But the insurance company, he couldn’t do what he wanted to do because the long-term care insurance wouldn’t pay for him to be at home unless he had all these people. He’s like, “I don’t want all those
people in my house.” They wouldn’t pay for him to be in assisted living.
Patrik: Yeah. Yeah. I mean, that’s how we fund our service here. I mean, we get paid by the insurances, but it’s a slightly different system that we operate in. But clearly, I mean, none of our clients are out-of-pocket really.
Cathy: Right. Yeah.
Patrik: So it’s all funded partly by the government, partly by insurances. So, none of our clients are paying for this privately. We’ve had the odd one, don’t get me wrong, but the overwhelming majority is that funding by these insurances, government, they see value in this.
Cathy: But the thing that, it’s like the issue with my dad… Okay, so even if they had paid for 24 hours, it wasn’t going to help me because he still was responding to tools here. And that’s why I was like, “I’ll just pay.” It’s like it just hit me, I was like, and “You’re the 24- hour nurse. You now just calling other people.” And that’s how that worked out. So I didn’t have to… I mean, because I guess I could’ve gone through, because I could
have put him on insurance or something like that. And I was like, “No. And then you get to control it. And then you come in here and say that because there is no brain activity that you’re going to shoot him with morphine, not happening.”
Cathy: So, if I have to be 24-hour nurse and then come out-of-pocket for the times that I need. And again, even if I want people here longer, it just didn’t work, because from a health perspective, if it’s just the two of us in here, and I’m checking on him every 30 minutes, he was fine. When I would bring the other nurses in, heart rate’s going over the place, can’t keep the oxygen up. So when you’re dealing with the insurance, there is
going to be that pushback. But when I was like, “Yep, then I will take care of him myself. And if you want to send…” Because they would send the skilled nurses here, they just come here to kind of analyze the situation. I was like, “If you want to check and see what’s going on, you can send someone here, but I’m going to be the 24-hour nurse and you’re not going to control this because you’re not listening.”
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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 think you’ve got so much value in there.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
