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 Stephanie as part of my 1:1 consulting and advocacy service! Stephanie’s mother had a cardiac arrest and now in the ICU post CPR, and is asking if withdrawing life support is the best option for her case.
My Mother is in the ICU for Post Cardiac Arrest Care. She will Have a Tracheostomy but Should it Lead to Withdrawal of Treatment for Her?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Stephanie here.”
Patrik: Her temperature is up because she’s got an infection?
Miranda: They said that’s from the neuro storm.
Stephanie: Yeah. They don’t see, they’re not able … her white blood cell count was 22 thousand, I think, or 44 thousand. They think that it’s some inflammation. Because I’ve talked to Dr. Philipps and he thinks it’s some inflammation from the neurostorm, because when you have a neurostorm, it affects every organ in your body.
Patrik: Yeah. The reality is that, if there is a brain injury, sometimes the brain can’t regulate the temperature as well as a healthy brain. That could all be part of it. But again, when people are critically ill, all sorts of things can happen, ranging from a neuro storm to a high temperature, to low blood pressure. Everything that you are describing, Miranda, is rather normal in Intensive Care. And when I say normal, Intensive Care is anything but normal. Don’t get me wrong. It’s anything but normal, right?
Patrik: But in terms of what you are describing, this is unfortunately what patients go through in Intensive Care. Right? That’s the reality. What you might also see is, once your mother has a tracheostomy, that she will be more comfortable. On Wednesday I was saying that the goal should always be to get that breathing tube removed, before doing a tracheostomy. It sounds like that’s not realistic at this point in time. That’s fine. I have no problem with that. The tracheostomy, it sounds like it is the right next step, especially if she’s got a Glasgow coma scale of three. You mentioned the Glasgow coma scale is probably a three. And with a Glasgow coma scale of three, there is no way that they can take the breathing tube out. There is no way.
Stephanie: But she didn’t really give us a number. That’s what I kept asking, what number?
Patrik: Oh, I see. I see.
Stephanie: Because I can’t give you a number. She said, I can’t put numbers on it. But you took an EEG. I said, everybody has a devil’s guess. She said, we do it for all the patients. Yeah. So you’ve got some numbers. I can’t imagine you [have] any numbers from that. Because the scale tells you, if they do this, it’s a one. You add up all those numbers and you get to a total. Basically I should have said, what is the total you got?
Patrik: And you should. Let me ask you this. Let me ask you a few questions. Is Carmen opening eyes?
Patrik: If you asked her to, would she squeeze your fingers?
Patrik: Right. If you pinched her hand or her feet, would she withdrawing with a reflex because of pain?
Miranda: I’m not understanding the question. Not from the hand, but the feet. If you pinch her, they feel her feet moving. What they were telling me is, she’s moving. The way I’m understanding is that they’re basically saying, her quality of life is just … she’s handicapped because of the ventilator.
Patrik: I come to quality of life. I come to that in a moment. I come to that. What you’re describing, her Glasgow coma scale would be anywhere between three and six, I would imagine. Right?
Stephanie: Yeah. With what you’re explaining, yeah.
Patrik: Right. With a Glasgow coma scale of three to six, she would not be able to have the breathing tube removed, because she wouldn’t be able to maintain her own airway. From that perspective, doing a tracheostomy next sounds reasonable to me. Especially since we’re now day 12. Okay? That’s fine.
Then the next step is, once she’s got the trach to keep her in the right environment. But we’ll come to that. I want to talk about quality of life first. One of the problems in Intensive Care is that from my experience, and also from my perspective, people are looking too far into the future. Look Miranda, I have no idea what your mom’s quality of life will look like in four weeks’ time, in four months’ time, in four years’ time. I have no idea. I would be foolish to even start thinking about it, because I simply don’t know. When people are in Intensive Care it’s very important to take one day at the time, and not look too far into the future. Besides that, what is quality of life? It’s a very subjective experience, and also a very subjective measure. It’s not for anybody to judge. People are telling you, whether the doctors or the nurses, they say, oh, I wouldn’t want my mom live with potentially a future quality of life that’s not acceptable, from their point of view.
Look, you are telling me … or anybody can tell me, I don’t want to live with this quality of life, I don’t want to be alive if I’m in a wheelchair, or whatever the case may be, and I accept that. But that’s different for different people.
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Stephanie: Right. She did say that. The neurologist said that. She said, somebody might be okay with rolling back and sitting, looking out of my window. Somebody says, if I can’t do this or do that, I might be okay with … I can’t think of all the scenarios she said, Miranda. But she’s like, somebody might be comfortable with this, somebody might be comfortable with that. She did say that. I can’t say what Carmen, what you would want. But Miranda knows pretty much, more than us what our mother would want. But you’re saying, that’s it Patrik?
Patrik: It’s too much. It’s not the appropriate time to talk about that. You want to talk about quality of life, I’m all for having those discussions, because it’s important to know. But at the moment, I do believe it’s just too early. I mean, nobody knows whether Carmen is going to survive the next two days. I think that she will, but she’s still too critical. She’s still on a ventilator. That’s all signs that quality of life is not even … because it’s too fine to the future.
Miranda: That’s the struggle I’m-
Stephanie: Go on.
Miranda: That’s the struggle I’m having. That’s the struggle I’m having, because my mother told me that she didn’t want her life not to go, you know. She wants a normal quality of life.
Patrik: Yeah. And that’s good information to have. But what if she is going through this, and she will survive and with rehabilitation over time she can go back to an acceptable quality of life?
Again, I can’t look into the future, and my expertise is really mainly in Intensive Care. Just like most other people in Intensive Care, I don’t know what a patient’s life looks like after Intensive Care. That’s not my area of expertise. I don’t have a crystal ball, right? But the reality is, a lot of people who are in Intensive Care, are not ending up in a nursing home long-term. Yes, there are some people, don’t get me wrong. There would be some people, but it’s still too early … Okay. Let’s just say you would be giving into what they’re saying. You would potentially agree to stop treatment and your mother would potentially die. Let’s just say, you would be doing that. Wouldn’t you be looking back afterwards, and wouldn’t you be saying, hey, what if I had given my mother a chance?
Miranda: I just don’t know.
Patrik: I know it’s a difficult situation. It’s hard to think, am I making the right decision? Am I making the wrong decision? It’s very hard. The other thing that’s important to know is, when people are in Intensive Care, everybody wants to speed up the recovery process, and that’s often delayed because people are in induced comas and they’re getting drugs that slow everything down. But the reality is, people recover in their own time.
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Miranda: Oh, her phone hung up. Stephanie’s phone hung up.
Patrik: Right. Hang on.
Stephanie: I got cut off. Here I am. I’m here now. Are you there, Miranda?
Miranda: Yeah. What was the last thing you heard?
Stephanie: What was the last … what were you talking about, Patrik?
Patrik: I was talking about-
Sheila: Oh, yes. Miranda said, the thing that’s bothering me is that my mother … That’s the part I want to hear, what her mother told her. That’s what I heard.
Patrik: Basically your mother told you, Miranda that she wouldn’t want to live with a disability.
Miranda: I can’t say a disability, but she just don’t want to be in a predicament where she’s not herself.
Patrik: Right. Right. But that is too early to say. That is way too early. So, I’ll give you another example. When patients don’t have a brain injury and they are in Intensive Care, let’s just say they come in after surgery and there’s complications and then people stay in Intensive Care for a couple of weeks in an induced coma they go out of Intensive Care. The brain is intact, I can tell you those people report that they’re not themselves for the next four weeks. At least. Because they’ve been through such a traumatic experience.
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Stephanie: Exactly. But that’s not to say that they won’t become themselves.
Stephanie: There’s no guarantee, but still it’s too far to try to say, “She’s not going to have a good quality of life“. It’s a process, a process. It’s a process that you go through, yes that you go through. But you can’t go too far down the line because you don’t know where she will be given the time for her to bring, to heal her, as you say, from this. That brain storm, I need some particulars about the brain storm, Patrik. Do you know any more about the brain storm? What it does? Is it a form-?
Patrik: What a seizure or a brain storm can do for example is it can damage the brain cells, there is no doubt about that. Right? But then again there are people in the community living with seizures, and even those seizures can damage the brain cells. They’re still functioning. Right?
Stephanie: Oh, interesting. Because they wanted us to think that the lights is out on the cells or something like that.
Patrik: Look, again seizures can cause brain damage there’s no doubt about that, it’s not good, but again there are people living out there in the community and they have regular seizures but they are fully functional individuals.
Stephanie: Mm-hmm (affirmative) Well, what we read was that it was … in a sense it’s like a way for the brain to recover itself, is that true? Is that a true statement?
Patrik: Absolutely. That is definitely a true statement that the brain can recover. Now I can tell you that … I’ll give you one example out of many, but I remember it’s more than 15 years ago now. But I looked after a patient in Intensive Care. For a long time he was with us for about three months, he fell off a roof and he was very sick. He nearly died and we looked after him, he was on dialysis, he had a significant brain injury and he survived Intensive Care. Eventually left Intensive Care and about 12 months later he came back as a visitor.
And he basically came back to the ICU and he said, “Hey, I’m such and such, I don’t remember a single thing but I do want to thank you for saving my life.”
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Stephanie: And he had those brain storms?
Patrik: Absolutely. If you’ve seen something like that Miranda, you will never forget that. Now if a patient dies in Intensive Care you will never see that.
Stephanie: Why do you say that?
Patrik: Well, because … why do I say that? Because if a patient is dead, they’re dead. That’s it, end of it.
Stephanie: What do you mean you don’t see it? What do you mean the person wouldn’t see it? Oh, the person themselves?
Patrik: That and also, the health professionals wouldn’t see it. Families wouldn’t see it. If that patient at the time would have died. I would not be able to tell you this example. To share that experience with you.
Stephanie: Right. Do you understand what he’s saying Miranda?
Miranda: Not completely. I don’t either.
Patrik: You don’t understand what I’m saying.
Stephanie: No, you’re saying when a person … you’re saying, like that guy he fell off the roof, he came back and thanked the people because … and said, “I don’t remember anything.”
Patrik: But here I am. Thank you. Thank you for saving my life. What I’m saying is, if you’re Mum, if anybody would stop life support tomorrow and your mom would pass away, that’s it. Her life is gone.
Stephanie: So what you’re saying, that’s to say … I don’t get it?
Patrik: Yeah, okay sorry. Maybe I’m not clear there. There would have been plenty of opportunities with this guy where the ICU could have stopped, because it was a battle against the odds.
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Stephanie: Right. You’re saying, I couldn’t stop that if they take her off the ventilator.
Patrik: Correct. So you know there are many points during a critical illness where you could stop because it seems hopeless, or it seems like an uphill battle. There are many of those points.
Stephanie: Right. Right. But you’re saying, they obviously didn’t … I don’t know what you’re saying again.
Patrik: They didn’t stop. They didn’t stop because the family at the time wanted everything to be done. And this person was extremely grateful.
Stephanie: Okay. And they were glad that they didn’t stop it. Ok, and he made it. Because if they stopped it, then he would be dead right now today. If they stopped it…
Patrik: Nobody would talk about it.
Stephanie: Right. Right. Because it wouldn’t be a story, because they would have given up.
Patrik: Correct. Correct. That’s what I’m saying. Right? They could stop treatment tomorrow and we would never talk about it anymore.
Stephanie: Right. I see, but if we continue and Carmen had a positive outcome, then she could come back and tell… she could live to tell the story.
Patrik: Very much so. I had an email earlier today, and I’m not making this up, I had an email earlier today. I had a client about 15 months ago and I remember it was three sisters and they had their brother in ICU. And it was a very, very difficult situation. There wasn’t any brain injury but the long term in ICU, about four weeks or five weeks with an open chest … I’ll make this very short, and it was very difficult at the time.
Stephanie: No, sir no problem, we need to hear stories like this.
Patrik: You need perspective.
Stephanie: I want you to tell him some of the stories you’ve heard Miranda, please share with him some of the stories you’ve had.
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Patrik: You need perspective. So today I get an email basically saying, “I just wanted to give you the outcome it’s been 15 months, you haven’t heard from us … blah, blah, blah. Just letting you know that my brother came out of Intensive Care alive and he’s now back living home again.” And I just go like, “Wow.”
Stephanie: Wow. Yeah. So what have you heard Miranda?
Patrik: What have you heard Miranda?
Miranda: So what I was telling her, I talked to one my mother’s friend brother and he basically say he was in a coma for 30 days. They said his brain wasn’t going to work, something like that. And he was in a coma for 30 days but then he woke up. And it was the same hospital actually, and then he say he lost his vision. And activity in his body. He was slowly but surely is coming back. He has his vision back. And he’s 37, my mother is 65. But then a coma, I don’t think a coma is the same thing as anoxic brain injury.
Patrik: No, it’s not. It’s not.
Miranda: And then another person I know had this massive heart attack and she says, he’s living and I think he was, and the term was I think I remember ’cause we didn’t have a lot of time to talk. So I think he was having the tremors and then about a month later he can-
Stephanie: He what?
Miranda: He’s himself.
Stephanie: I can’t understand a word you’re saying.
Miranda: He is himself.
Stephanie: Oh he came back to himself.
Patrik: Right. Right. There are many outcomes, right? And I could probably give you another story that I probably know best. A friend of mine who is now 61, he was in Intensive Care about five years ago for about four weeks with pneumonia. He was very sick. We all thought he wouldn’t make it. And five years later, he’s definitely back himself. Again, there was no brain injury but he’s living a good life.
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Patrik: Good outcome. And that’s what I mean. If your mother … okay, I’ll give you another scenario that is really important for you to understand. Because your mother at the moment is on life support, meaning that if life support is stopped, she would probably die. Once she has a trach and if for whatever reason you still think or if things change, and you think, “I really don’t want to continue and it would be in my mother’s wish, she wouldn’t want to continue. As long as she’s on life support, you can just go to the ICU and you can say, “Hey, why don’t we stop life support?”
So you are in a position where I don’t believe you are in a hurry to make a decision. Because she is still in life-
Stephanie: She is under control.
Patrik: That’s right. Because she is life support dependent at the moment. So that means if for whatever treason in a week’s time you think, “Oh this is not going anywhere, Mom wouldn’t want that at all”, you can still say, “Enough is enough. Let’s stop.” But you have an open time window.
Miranda: Now this is, what you’re saying is that’s after she get the trach?
Patrik: Say that again, please?
Miranda: Stephanie, can you repeat it for me?
Stephanie: Are you saying that’s after she gets the trach?
Patrik: Yes, absolutely. And that’s because at the moment she can’t breathe by herself. Right? So the trach is just a more comfortable device, you will see once she has the trach it’s way more comfortable than the breathing tube but it’s still life support. She will still be attached to a ventilator. Right?
Stephanie: That’s got to be so much more comfortable.
Go ahead Patrik, I’m sorry.
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Patrik: Yeah, it’ll be way more comfortable.
So you are not … yes, they are putting pressure on you but it’s only perceived pressure.
Stephanie: Yes, I can see. I’m allowing them … yes.
Patrik: Yes, you’re allowing them. Absolutely.
Stephanie: The ball is in your court, honey. The ball is in your court. You don’t have to sign anything. If you want to get the trach and then just see what happens, if they say, “We’re going to watch her. We’re going to watch for 24 hours and then we’ll try to get her into LTAC. They can say all they want to. You don’t even have to address that. You don’t have to sign anything. They can’t ship her out, right? They can’t kick her out.
Patrik: They can’t ship her out and also it’s sounds to me like they’ve made it about the insurance issue. As long as you haven’t heard from the insurance, they’re just telling you that. I mean, what I know from other clients usually is if there is an insurance issue the insurance will talk to you. They will call you. If there is a real insurance issue, they will talk to you. At the moment you just hear this almost like second hand from the hospital. I mean, so what?
Stephanie: Right. So what?
Patrik: I’m talking to a lady in Ohio at the moment. She had her dad between ICU and LTAC for about 12 months. Now it’s becoming an insurance issue. We’re talking about 12 months.
Stephanie: That’s a year. So this is only … this is no time.
Patrik: 12 days is nothing. It’s absolutely nothing. Feels like an eternity for you, I get it. Feels like an eternity, it’s a nightmare. It’s the worst possible situation you could have every imagined, I get it. There’s no doubt about that this is a nightmare situation. But 12 days in Intensive Care is nothing. If you have to come to me after 30 days of Intensive Care, after months in Intensive Care, I probably would tell you the same thing I’m telling you now.
Yes, situations change but at the moment, your mother is alive. Twelve days in Intensive Care is not a long time. Again, I can give you another example. I’m working with another client at the moment, again there in Cincinnati. They’ve had their mother now in Intensive Care for about a month. And they are sending me videos with updates. And the mum there had a hypoxic brain injury from a car accident from a cardiac arrest.
Now after about a month, fairly similar situation than yours, after about a month I can see in the videos and she has a trach too, she is now trying to mouth words. Now is she back to where she was before the cardiac arrest? No, by no means. She’s by no means anywhere to where she was before the cardiac arrest. Is she making progress? Yes, absolutely.
Stephanie: Mm-hmm (affirmative) we should send you some pictures too. Becca got pictures. So Becca has pictures. We should send you pictures too. Yeah, all the cases you can give us to help us to see, that really kind of puts it into perspective. You know what I mean? Yeah. And so … yeah.
Patrik: It’s incredibly important that you put things in perspective.
Stephanie: Mm-hmm (affirmative) don’t go too far down the road. Just handle what’s in front of you right now. We have a meeting…
Patrik: Make sure your mother stays alive today, and then tomorrow. And once tomorrow comes, then make sure your mother stays alive the next day. Go one day at a time, and if you do that you will see which direction it’s going. And then you can adjust and make decisions from there. Looking into the future is just causing you grief.
Stephanie: You hear that Miranda?
Miranda: Yes, it is causing me grief.
Stephanie: Yes. We gotta try to just stick with what we got at the moment. I like how you said that Patrick. You know, my concentration is keeping her alive today. When tomorrow comes keep her alive today so that she can live into the next day. And that’s it. What does she need right now? Go ahead, go ahead.
Patrik: And here’s another thing Miranda, let’s talk again about end of life for a moment. Let’s just say you decide in the next few days, it’s enough, “I don’t want my mother to continue like this.” Let’s just say you then talk to the ICU and you prepare your mother for end of life. They could stop life support and they could “remove life support”, make your mother comfortable so she’s not suffering, but you’ve then got to keep in mind again, from my perspective that’s euthanasia. Do you know what I mean by that Miranda when I say euthanasia?
Sheila: Miranda are you there?
Patrik: Do you know what I mean with euthanasia?
Miranda: Say it one more time?
Patrik: Euthanasia. It’s basically painless killing of a patient, by giving them drugs and hasten death. Have you come across that term before?
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 your 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
- 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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- How to take control if your loved one has a severe brain injury and is critically ill in Intensive Care
- How can I be prepared, be mentally strong and be well positioned for a Family meeting with the Intensive Care team?(PART 1)
- How can I be prepared, be mentally strong and be well positioned for a Family meeting with the Intensive Care team?(PART 2)
- The four DEADLY SINS that Families of critically ill Patients in Intensive Care CONSTANTLY MAKE, but they are UNAWARE OF!
- My HUSBAND had a HORRIBLE work accident and went into CARDIAC ARREST! Will he be PERMANENTLY DISABLED
- Why decision making in Intensive Care GOES WAY BEYOND your critically ill loved one’s DIAGNOSIS AND PROGNOSIS!
- The 4 ways you can overcome INSURMOUNTABLE OBSTACLES whilst your loved one is critically ill in Intensive Care!
- How to get PEACE OF MIND, more control, more power and influence if your critically ill loved one is DYING in Intensive Care!
- The 5 QUESTIONS you need to ask, if the Intensive Care team wants you to DONATE your loved one’s ORGANS in an END OF LIFE SITUATION!
- MY PARTNER IS IN INTENSIVE CARE ON A VENTILATOR! THE INTENSIVE CARE TEAM WANTS TO DO A TRACHEOSTOMY AND I WANT TO HAVE HIM EXTUBATED! WHAT DO I DO? (PART 1)
- How MEDICAL RESEARCH DOMINATES your critically ill loved one’s diagnosis and prognosis, as well as the CARE and TREATMENT your loved one IS RECEIVING or NOT RECEIVING
- WHAT WOULD YOU DO if you knew that you COULD NOT FAIL, whilst your loved one is critically ill in Intensive Care
- How the Intensive Care team is SKILFULLY PLAYING WITH YOUR EMOTIONS, if your loved one is critically ill in Intensive Care!
- My father is in Intensive Care ventilated with LIVER FAILURE and KIDNEY FAILURE, I DON’T THINK HE WILL SURVIVE! HELP
- HOW TO GIVE YOURSELF PERMISSION TO HAVE PEACE OF MIND, CONTROL, POWER AND INFLUENCE WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!
- My father has been weaned off the ventilator in Intensive Care and still has the Tracheostomy in. When can the Tracheostomy be removed?