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
I am Positive That My Dad Can Be Weaned Off the Ventilator, But The ICU Team Says He Can’t? Help!
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Ronan, as part of my 1:1 consulting and advocacy service! Ronan’s dad is with a breathing tube and is on a ventilator in the ICU. Ronan asks how he will know if his dad must stay in ICU or bring him with intensive care at home.
How Do I Know If My Dad Needs to Stay in ICU or Bring Him with Intensive Care at Home?
Patrik: Hi, Ronan. How are you?
Ronan: I’m okay. Thanks for making time.
Patrik: Thank you.
Patrik: How can I help you, Ronan? I’ve seen your…
Ronan: Yeah, you saw my little write-up…
Patrik: I saw your mail.
Ronan: Yes. So I’m trying to figure out how to get him home to do intensive care at home. Unfortunately, he has crappy insurance and I think everyone’s slowly giving up on him because he does have a… He’s kind of weak and he has a weak cough. And so right now they’re making me, they’re trying to pressure me to get a tracheostomy or take him home for hospice. And I’m trying to figure out… And I just found out his insurance actually does cover home health services, but I need his attending to agree to it. So would love any advice on how would he do… Yeah.
Patrik: Yeah. So he’s been in ICU since the early start of the year?
Ronan: Right. Well, he arrived at the ER and then because of beds, he didn’t get up to ICU right away, but they were treating him as an ICU patient at the ER. Yeah.
Patrik: Yeah, yeah. Yeah. Okay. They’re probably right when they say it takes four to six weeks to absorb the blood into the brain.
Patrik: What is he doing neurologically? Is he awake? Is he alert?
Ronan: Yeah. His eyes open and he’ll turn to the screen when I Skype with him and he’ll lift his arms, but not on command. So that’s why they’re like, “He’s not…” He’s responsive to pain, but not to commands, but I’m like, “He’s is in his 80’s.” They’re like, “Can you try it?” And it takes a couple of minutes.
Patrik: Is he still on sedation?
Ronan: No, they took him off a couple of days ago to test him…
Patrik: Two days ago?
Ronan: Thursday or Friday.
Patrik: What was he on? Do you know what he was on?
Ronan: He was on Precedex.
Patrik: Yeah. Precedex. Yeah. Versed or just Precedex?
Ronan: I believe just Precedex.
Patrik: He wouldn’t have been on Precedex all the time. They probably would have changed from Propofol.
Ronan: Yeah. He was on Propofol. Yeah.
Patrik: What about Versed?
Ronan: I don’t think so.
Ronan: So his big issue was blood pressure initially, so he had a drip. But now he’s on… He maintains it. They have an order for a drug if it goes above 150, 160, but he’s been pretty good the last couple of days and his temperature is normal again.
Patrik: Okay. So when you say his blood pressure was an issue is that high blood pressure or low blood pressure?
Ronan: Yeah. High blood pressure.
Patrik: It’s that how the brain bleed potentially happened?
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Ronan: Potentially. Yeah. Because he has hypertension. Yeah.
Patrik: Okay, look. To answer your first question with intensive care at home, I don’t know how much research you’ve done. We are running a business Intensive Care at Home as well.
Ronan: Yeah. Yeah.
Patrik: Full disclosure. I am in Melbourne, Australia.
Patrik: Right? Hopefully, we will be in other countries as well in the not too distant future.
Patrik: If you were here in Australia and you presented me with this scenario, I would say because we have staff here, we can take people home. My advice would still be that I believe it’s way too early to look at Intensive Care at Home, right?
Ronan: Oh, it is?
Patrik: And the reason I’m saying that is they’ve just stopped sedation two days ago. I’ll give you an example, so that I can hopefully illustrate to you why I think it’s way too early to look at intensive care at home. Let’s just say your dad didn’t have a brain bleed, just went into ICU for pneumonia, in an induced coma, no head bleed. He would come out of an induced coma and he may not wake up after two days and he may not wake up after four days. So timeframes in intensive care can be very long. Also Intensive Care at Home is probably more for someone that really, really needs to stay in ICU for long periods of time. That we don’t know yet about your dad. Right?
Patrik: So imagine let’s just map out the best case scenario for a moment. Let’s map out the best case scenario. He wakes up, he comes off the ventilator, goes to rehab and goes home. So imagine how much easier it would be for your dad to go home without a ventilator, without a trach, would be so much easier.
Patrik: If your dad was two weeks, three weeks, four weeks down the line where he’s not waking up, I would say, “Absolutely. Look at issues such as Intensive Care at Home. Absolutely.”
Ronan: No, I would probably do hospice then, right?
Ronan: The only reason I’m considering… I’m trying to give him a chance is because this last week, he’s woken up. He’s become alert. And that’s where the challenge is, if he wasn’t then I would just do hospice. Yeah. If he was plateauing, but because it seems like he’s fighting, I don’t know if he’s fighting because he wants to come back or if he’s fighting because he wants to come home and die here.
Patrik: Sure. Okay. Yeah. Sure, sure. I hear you. I hear you. Okay. So if he was to…
Ronan: So you’re saying home health, I shouldn’t even consider it because it’s…
Patrik: No, no. Not at all. No, no. Now that you’ve given me more information, now that you’re telling me he might be fighting because he wants to go home potentially for end of life, is that what you’re saying?
Ronan: Yeah. I don’t know if he’s fighting to come back or if he’s fighting to come home. So if I bring him for hospice, they’ll extubate him. And like you say, he won’t be able to protect his airway. So it’ll be hours or max 48 hours before he’ll pass.
Patrik: I wouldn’t confirm that, but, if your dad, if you think he’s fighting because he wants to go home, whatever that may look like, then I think, yes, then home care is definitely an option. I just think that if you want to take him home, let’s just say soon, you may not get all the therapy options that he might be able to get in a hospital.
Ronan: Yeah. I don’t care about that.
Patrik: Okay. Yep. Sure. I hear you. I hear you. Okay.
Ronan: And the facilities that they’re offering are not very good.
Patrik: Horrible. Horrible.
Ronan: And he’s not going to be able to advocate for himself and its COVID so I can’t go advocate for him. And they’re overworked and even the intensive care, critical care doctor had said, “I wouldn’t do that.” He’s also pushing hospice.
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Patrik: How do you feel about hospice?
Ronan: Because he’s fighting. That’s why I feel like I’m not ready to sign his death certificate. Right? That’s my feeling.
Patrik: Are you the medical power of attorney for your dad?
Ronan: My mom is, but she has early dementia, but she’ll sign anything I tell her to sign.
Patrik: Sure. True. So you are more or less the decision maker.
Patrik: Does your dad have an advanced care directive?
Ronan: Not with specifics on… Because we don’t really talk about it… I only got him to tell me he wanted to be cremated.
Patrik: I think not all talk about this either. I don’t think it’s unique to any culture.
Ronan: I talked to his sister, and she’s like, “I told my kids don’t revive me. Don’t send him…” Don’t do anything, but yeah. That’s my challenge is he’s fighting, but I don’t know what he’s fighting for. But if you think he’s too early to come home for home health care then should I just do hospice and let him go?
Patrik: Yeah, look, I tell you what I would do from experience if I was you. Two days of sedation doesn’t tell you anything. Okay. I would probably wait. I would probably wait at least two weeks.
Ronan: I’m not going to have two weeks, unfortunately, because of insurance.
Patrik: I see.
Ronan: I’m going to have to decide this week. I can push it back probably until Wednesday at the latest. Friday was supposed to be my deadline. They’re giving me now until Monday.
Patrik: Oh, I see. I see.
Ronan: So Wednesday I have to decide trach or hospice.
Patrik: I see. Yeah. No, no, I hear what you’re saying now. Yeah, sure. I would wait because you want to find out more about your dad’s neurological condition, and I can tell you that you may not know this by Wednesday either.
Ronan: Okay. And then should I just do the trach and then try and do hospice after the trach?
Patrik: Okay. Let’s look at both scenarios. If you took him to hospice without a trach, they would remove the breathing tube and they would assist him in dying by giving him Morphine, Versed, more or less a deadly cocktail. Now, from my experience and from my perspective, this is euthanasia. But that depends on you and your family’s beliefs. What is acceptable for you? What would you like? Bear in mind euthanasia is illegal in most states, but I also know its common practice in ICU. It’s common practice. Nobody talks about it.
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Ronan: Okay. So they said that they would basically like extubate him and throw in an ambulance and then rush him home and have hospice ready here. And they would make him comfortable. So they would have oxygen and… I’m trying to find the… Yeah. Oxygen, pain meds, anxiety meds. They wouldn’t give him any antibiotics.
Patrik: No. But you got to keep in mind that the pain meds and the anti-anxiety meds are medications that hasten death.
Ronan: Sorry. You broke up. They are what?
Patrik: Yeah. So the pain medications they’re referring to is usually morphine, fentanyl, and the sedative medications is usually midazolam or Versed. They are hastening death. They basically help him to… They make him stop breathing.
Ronan: Okay. So what do I do? If I wanted to give him another week or two?
Patrik: Yeah. Wait. Wait. So what’s the insurance issue? He’s running out of entitlements?
Ronan: The insurance issue is they need me to either say hospice or trach and then push him to a LTAC. I can refuse the trach, but they’re pushing, it’s been over two weeks, he’s going to have an infection.
Patrik: Who’s pushing? The insurance or the hospital?
Ronan: Attending doctor who works for the insurance company.
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Patrik: Oh. Talking about conflict of interest.
Ronan: I know.
Patrik: I would take this doctor through the wringer if I was you.
Ronan: I know. I hate… Well, this week’s doctor is horrible. Next week’s doctor is a little more compassionate.
Patrik: So hang on a second. So you are saying there is a doctor looking after your dad that’s working for the health insurance? You should go to the media with this.
Ronan: Well, he’s not technically, but I’m sure there’s…
Patrik: Maybe a shareholder. Excuse my cynicism.
Ronan: No, I hear you. So I can keep delaying the trach I guess. I mean, I have to approve the trach.
Patrik: Okay. Let just go one step back here. Sorry.
Patrik: The reason I’m asking this is I’m having similar conversations multiple times a day, like with yourself. And I know what hospitals are saying. Hospitals are saying, “Oh yeah, by next week you have to make a decision.” And I’d just go, like… If a hospital was to come to me, the hospital could tell me, “Jump off this bridge,” and I would just go like, “No. Sorry. I don’t.” And I would respond the same. Your dad has been ventilated more than a month.
Ronan: Yeah. Right.
Patrik: So today it’s on the 17th day. So yeah, I can see the cutoff is sort of the 10 to 14 day mark. I can see why a trach is an option. What I would want to know is as a clinician, I would want to know what his ventilator settings are? What are his arterial blood gases?
Ronan: Currently it’s 20. The O2 is 30%. The PEEP is five and then 10 or something is 400.
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 you 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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
Also, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.
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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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