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 how families can fight for their loved one’s life if the ICU team says their loved one is brain-dead.
How Can you Fight for Your Loved One’s Life if the ICU Team Says Your Loved One is Brain-Dead?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Cathy here.”
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.
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Cathy: And that’s when I was like, “Just talking to you about the tracheostomy.” And I was like, “Dude, what is taking you so long? Put the trach in and put the feeding tube and let’s go. Our organs are all working. I’ve already told you. That’s what I consider it to be life. And you’ve already told me he can have a ventilator at home. So we’re out of here. What are you doing?” So then he got a staphylococcus infection and that’s why he ended up staying there longer. But the entire time, he was breathing on his own. He would need help every now and then. It’s like, sometimes a brain would shut off and forget. But 98% of the time, he was in spontaneous mode, he was breathing on his own. But again, he had great insurance. They were going to pay for it. They don’t listen. They don’t. And this is what families need to, this is what you need to, especially if you’re a family of faith or even if you’re just someone who don’t want to have regrets about what do you. You have to understand they’re not on your side.
Patrik: They’re not on your team.
Cathy: Yeah, not at all.
Patrik: It’s really great to hear that you’ve taken matters in your own hands and at the end of the day, got the outcomes that you were hoping for. I think it’s also important to be realistic about the outcomes, which you have to be.
Cathy: Exactly. Yeah. And that was the other thing I would tell him. I was like… Because when he went back and there was fluid on his lungs, I was like, “Yeah, he’s not keeping his oxygen levels because…” It wasn’t even fluid on his lungs, he just had fluid in his body. He needed a diuretic to pull some of it off. And the doctor comes in and he’s like, “Did someone explain to you what happened to your dad?” I’m like, “Yeah, pulmonary embolism, no blood flow to the brain, blah, blah, and blah.” He’s looking at me and I’m looking at him. I was like, “Oh, I’m not going to kill him. So get the fluid off of him. And we’re out of here, he’s got a bed at home waiting for him.” I was like the fact that my father is not conscious.
Cathy: Because again, if you listen to my definition of what life is, and you understand. The fact that he’s not conscious, I don’t care because when I take him home and I try to change him, his face moves up, he gets an attitude. When I have people in here for too long, he gets an attitude. God still has him here for some reason. It’s my role to take care of him. I’m not asking you, I’m not telling you, my father needs to walk out of this house. That’s not what I’m saying. I’m saying this, there’s too much fluid, get rid of it. And you need to do it in the hospital because you need to watch his pressure while you’re doing it and then we’ll go home. Okay?” So yeah, they just did listen all the way around, all the way around. But you were on my team. So I ended up getting what he would have wanted and what my family wanted.
Patrik: Now, that’s, look-
Cathy: Any help I can give anyone else, I will be happy to do.
Patrik: That would be great. Look, if we could almost repeat of what we talked about now, I just let you do the talking. I will have something to add here and there, but I mean, that would just be amazing because there is so much in there and all families often need is that encouragement.
Cathy: Yeah.
Patrik: I always say, “Listen to your intuition, listen to your gut. What’s your gut telling you, what’s your faith telling you?”
Cathy: Absolutely. So give me a week to kind of get my thoughts.
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Patrik: Of course, of course, look, in your own time, of course.
Cathy: Okay.
Patrik: If you want to reach out to me when you’re ready, just maybe for another half an hour, because normally I do those interviews when I publish them on the blog, not for longer than half an hour. So if I do them on a podcast, the business drop off after half an hour, no matter how interesting it is. If we can condense this to half an hour, that would be really, really great. There is so much gold in there for the audience, because they’re looking for encouragement. They’re looking for… I can’t tell you how often I get this question, “Is that just me? They’re not listening.” I say, “No, no.”
Cathy: It is not you. It’s not.
Patrik: That’s how I felt after 20 years in the industry, I just thought this is all just a lot of crap. Get me out of here. I don’t want to be part… After sort of 10 years, in the first 10 years you’re learning and you’re growing and it’s exciting. And then once you look behind the machinery, you just think, “Hang on a second. I learned what I needed to learn. Thank you very much, but now I can think for myself, thank you.”
Cathy: Yes, exactly. Exactly. Exactly. And people do need that encouragement.
Patrik: They do need that encouragement. And there have been so many situations, especially the last few years when I was still practicing in ICU, there have been so many situations where, yes, I know what you were referring to. And I’ve seen this so many times myself, and then in the end, willingly or unwillingly participated in it myself. And I said, “No, no, no, hang on a second, can’t be part of this anymore.”
Cathy: Right. Exactly. And it’d be interesting if I even wanted to keep up with them, the nurse that I had in tears. I think he… Because he was the one that was like, “I’m praying for you, blah, blah, and blah.” But he was… I’m like, “I know you’ve seen this before-
Patrik: Oh, yeah, yeah, yeah.
Cathy: … I don’t know why you’re being so upset about this.” I said, “But it’s because…” I was like, “This whole industry here, this is just evil. This is just not right.
Patrik: Have you watched the movie, The Matrix?
Cathy: I have not.
Patrik: Look, I have not watched it either, but I have seen clips here and there. I’m not a big movie fan, but I have seen clips here and there. Basically, the movie, The Matrix is about sort of a science fiction movie where very few people control the world, 10 people control the world and everybody else is sort of in the matrix and not realizing what’s happening. And very few people can take the red pill. And once they take the red pill, they can actually see what’s going on.
Cathy: Nice.
Patrik: And people who have seen the movie, The Matrix, they know what I’m referring to. You you’ve taken the red pill now.
Cathy: Right. Absolutely. I can see that.
Patrik: You can see what’s behind the curtain-
Cathy: Yes. Absolutely.
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Patrik: … unfortunately. But it’s a big eye-opener once people understand how the industry operates. And what I will say, there is one thing that I would say, there is a lot of good things happening in the industry as well, but we don’t hear about the good things because people move on. People move on, they go back to their lives, which is great, of course, but many people consciously go back to their lives.
Cathy: Exactly. Yeah, absolutely. Absolutely.
Patrik: And how long ago did your dad pass away? A few weeks ago now?
Cathy: His official date of death is April 13th, but he passed on April 17th. He left his last breath, no morphine was used, nothing. He just went peacefully.
Cathy: It’s like a week ago today.
Patrik: You’ve buried him?
Cathy: yes.
Patrik: Fine. Right. No, that’s-
Cathy: Had a small service, just limited it to family. It was outside. It was really, just have a committal service, because that’s what he would have wanted. He wouldn’t want anything big or anything like that. And yeah, very simple service. I had a family member officiate it. Family all came together, and it just all worked out the way that it should be.
Patrik: Yeah. I am so glad to hear that you can, and probably your family, can make peace with the situation. Now, that’s so important. I believe you or any family making peace with the loss. It’s so important.
Cathy: Right.
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Patrik: The pain families are going through, if they have no peace, no matter what the circumstances are, it’s enormous. Actually, I will publish the interview in the next week where a family has not made peace because they weren’t listened to and because they were in retrospect they thought, “Well, they killed my spouse.”
Cathy: Right. Exactly.
Patrik: “And we didn’t know at the time what to do.” We just thought, “Oh, they must know what they’re doing.” And then they get second thoughts. Then they’re starting to do some research and they might find our website or other websites that talk along similar lines. And then they realize, “Oh my goodness, there’s a whole another world.”
Cathy: Right. Absolutely. And that is the truth of it. That is the truth.
Patrik: And that pain, people can accept it. I do believe people can accept it, what they can’t accept or what is very difficult for them to accept is if the situation is less than ideal. I mean, that is never ideal. But if it turns out to be, or the hospital is telling us, “We need to stop the ventilator tomorrow.
Cathy: Right, exactly.
Patrik: That is almost like an execution.
Cathy: Right. Exactly. And again, with the insurance that people have, if people just can kind of adjust to, there are a lot of things that you can do on your own. It’s going to be hard, but in the end you will have peace. Everyone was like, “I just can’t believe… You organized, you made all the arrangements, and you did everything.” I said, “Because I have peace.” If I had cut the ventilator off, if I had listened to them, if I hadn’t done what was hard, I would not have peace right now, because my role is to honor her and I would not have done that if I had allowed them to convince me of something that went against everything that our family is about. I said, “Tears are going to come, all of that, but a lot of times people just cannot get through it because your spirit is not right.”
Patrik: Yes.
Cathy: Because again, that is a part of your life. And the things that we do that are consistent with God’s word, those affect our spirits and that’s what’s going to affect your flesh and why you can’t get over it. My sister she’s like, “Yeah, I went back to… She said, “You stayed out of work for four days.” I was like, “Yeah. I think I went back too soon because I’ve been running to the bathroom crying.” And I said, “The tears are going to come,” I said, “But our spirits are at peace because we did, because we were both, nobody’s cutting off the ventilator. Nobody’s cutting off the ventilator, not happening.”
Cathy: And I said, “We all did what we could do until the end. And God took her when had determined it was time for him to go.” So we did all that we could do. We were here until the end and we’re going to have peace about that. And that’s where your strength is going to come from. And I just so feel for these families that are going through this, that are having second thoughts because you’ve listened to these people tell you, “Oh, this person is brain-dead. So that means you just give up.” Hope. That’s it. “No, no, Nope, Nope, Nope.”
Patrik: Did you hear there was a case reported where a 13-year old boy was declared brain-dead and the hospital was ready to take him off the ventilator. And they were able to do that as the law in there. But the family managed to get an injunction and transferred the boy to a place where brain death can be challenged legally.
Cathy: Okay, okay.
Patrik: So they took him to where he lived for another six years. I believe he passed away few years ago.
Cathy: Okay.
Patrik: So there are people that are already, or even other countries that are looking at this just because legally, somebody might be brain-dead as per definition, doesn’t mean that for a family’s faith, spirits that they agree with that.
Cathy: Exactly. And again-
Patrik: Who’s to say what’s right or wrong?
Cathy: Yeah, exactly. And again, it’s like, if God is giving you clues, again, in my father’s case, which threw me initially, how is it that your liver is working, your kidney is working? You’ve got the best blood pressure you’ve had in 20 years. And then someone is going to tell me that that person is dead. And then when you look at the history of where we come up with the term brain-dead, it’s for the organ donation industry to get you to kill them so you can take their organs. It doesn’t mean anything.
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Cathy: As I said, the brain is another organ, when it doesn’t work, you’re not conscious, it doesn’t mean that something else is not going on in the spirit, such that you’re alive. And it doesn’t mean that God was ready for them to totally come home. And that they just can’t… And that’s the other thing I would throw back in these meetings, a few that I would have, they would just totally shut up. I was like, “You’re just trying to justify killing somebody so you can take their organs.” I’m like, “Do you all get a cut of that?” And they would just, “You can just wait outside.”
Patrik: Do you want the answer to that?
Cathy: Yeah.
Patrik: I wouldn’t say they’re getting a cut of it, but I’ll tell you what they will benefit from. So when the organ donation industry’s huge, and what happens is where the money is coming from for the doctors in particular is they are often affiliated to research projects, to a medical research project. That’s where the money’s flowing. My last ICU that I worked in, we had, I do remember that, the big ICU, 45 beds. And we had patients, young patients die in the trauma area and in the heart section, the cardiac section, we had patients waiting for a heart transplant or for a lung transplant. It’s quite, what’s the word? I don’t even know what to make out of this, ethically, morally having seen that.
Patrik: A 21-year old, maybe after a car accident, maybe a brain-dead or not brain-dead, it doesn’t matter. It doesn’t matter. And knowing that they’re ending this life and around the corner, there’s this 47-year old man, woman, whatever, waiting for a life-saving heart. And the money there is really in the research studies, that’s where the money is. So yeah, I don’t even know what words to use, having seen all of that.
Cathy: Right. Exactly. Again, I just have peace when I am consistent with the word of God. And a lot of things that people are doing, not consistent, just creating so much turmoil. Your spirit is in turmoil. Even if the outcome is not what you want, I would have loved for my dad to stay around for 20 more years, that’s not what God had. But we go into it, that is the goal, that’s the foundation for how they’re going to think about this. And then I’m going to things that are consistent with what his word tells me to do.
Cathy: Just don’t kill. You’ll be sad, but you’re going to have peace about that situation because you did everything that you could, that was consistent with his word. And that’s what the medical establishment and all of these different industries are taking away from people. They don’t care that somebody is going to spend the rest of their lives thinking that they weren’t there for that person because they didn’t respect that this is a decision for the family to make and that you didn’t give them all the information that they need. So, yeah. Yeah.
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Patrik: How old was your dad?
Cathy: He’s 73.
Patrik: Oh, that’s very young.
Cathy: My dad was 73. The other thing for me is, he had his first stroke in his 50s. He had always struggled with high blood pressure, which I’m totally convinced it was just a result of stress. We’re from a very small town and moved to a bigger town. And just adjusting to that, I think was just stressful for him trying to adjust. And that stress just caused for all these problems, but my father was just not… The way that I think about this, my father was just, he was like, “If God can’t heal it, and I’m good. Whatever, he was like, “I’m going to eat healthy, and I’m going to try to exercise.” That’s not enough.
Cathy: And there are other things that he might’ve been able to do that might have resulted in different outcomes. He would never do physical therapy. He didn’t like to tell him what to do. He was going to have to take him… I think the medicine that he took also contributed to it also, because I think with his blood pressure was just, it was a stress thing. And if he had done more physical therapy and just stopped worrying about things, it was not even a physical thing because he walked all the time, he ate like he was supposed to, but he was just a worrier about everything. And it just, it’s that constant stress is what resulted, I think he was having mini strokes. But he was just never going to…
Cathy: It’s interesting. I had interesting conversations with family after that because when he had the first stroke, I think my aunt was at the hospital because that’s when I was living away from them and my uncle was closer and he came before I got down there. And they wanted to do some tests to see if he might have Alzheimer’s, whenever. My father was like, “Absolutely not. I’m not taking the test,” and left. That’s just his old thing. He had a huge tumor on his thyroid, which runs in the family. And then when they were like, “Oh, you want to do surgery? He’s like, “No, absolutely not.
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Cathy: He was just, “You’re not going to treat me like a guinea pig and God isn’t going to take care of me or he’s going to take me home.” That was just him. That’s just how he felt about it. And for him not having his independence just kind of killed his will. Most people are like, “Oh, it’s great. Your child is going to come take care of you so you don’t have to go to a nursing home.” And it just killed his spirit. So, yeah. So I heard that this was a 15-year journey, and is expected to want it to end up this way, but I have an understanding, a kind of the slushy component of it and then everything else, that’s what God wanted. So that’s what happened.
Patrik: Okay. Okay, Cathy, I need to slowly move along. No, look, thank you so much for getting back to me and sharing this. This is incredibly valuable. And why don’t you take your time and maybe get back to me when think you would like to share more of this with my audience. Because again, I think there is so much gold in there.
Cathy: I will do that.
Patrik: There is so much encouragement.
Cathy: I will do that. I will be in touch soon.
Patrik: Thank you. Thank you so much. Have a good night.
Cathy: You do the same.
Patrik: Thank you.
Cathy: Bye.
Patrik: Bye-bye. Bye.
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 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!
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