CASE STUDY: My wife has been in ICU for 45 days ventilated with tracheostomy! I want her at home instead of going to long-term acute care! What are the options?

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 last week was

MY HUSBAND HAD OPEN HEART SURGERY WITH COMPLICATIONS! HE’S NOT “WAKING UP”, HE NEEDS 100% OF OXYGEN AND NOW HE’S BLEEDING FROM THE STOMACH, I’M SO SCARED, HELP! (PART 1)

You can check out last week’s episode by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer another series of questions from one of our clients in this CASE STUDY which is an excerpt from a phone counselling and consulting session with me and the question this week is

CASE STUDY: My wife has been in ICU for 45 days ventilated with tracheostomy! I want her at home instead of going to long-term acute care! What are the options?

Today is another great CASE STUDY where I can help Jeff, one of our clients, in a very stressful and complex situation.

Jeff’s wife has been in Intensive Care for over 45 days now with COPD and she has been ventilated with a tracheostomy. She hasn’t been doing great and she hasn’t really been able to come off the ventilator at all.

Jeff- like so many other families in Intensive Care- feels pressure from the doctors to agree to “pulling the plug” on his wife and basically let her die!

The other alternative the Hospital and the Intensive Care team is giving Jeff is to have his wife transferred to another state into a Nursing home. Not very appealing and probably very much out of touch with reality as this would uproot the family.

Jeff is considering home care instead and as part of his decision making process he has found that INTENSIVE CARE AT HOME is potentially an option.

This CASE STUDY also goes to show that we really can do our best work when we speak to both, doctors, nurses and families, because then we can really advocate for your loved one and get the outcomes you want, need and deserve!

Go and see for yourself now how I can help Jeff make sense in a very complex situation and also find out if his wife is in a “real” or “perceived” end of life situation!

Patrik: Good evening Jeff. It’s Patrik speaking from Intensive Care Hotline. How are you?

Jeff: I’m fine. How are you?

Patrik: Very good. Thank you. So I’ve spoken to Dr. Herandary– I’m not sure whether I’m pronouncing his name correctly — but I’ve spoken to him this morning. I called his secretary and he called me back probably within 20 minutes. That was kind of surprising. It normally takes them a while to get back to people, but he called me back within 20 minutes. From what I understand Jeff, it’s he thinks that on a ventilator, he thinks that your wife could potentially live for quite some time. The questions that I had for him, were really around life support. What I mean by that is, people in intensive care often have a multitude of issues as you know, and my question to him was, “What levels of life support is she getting?”

Now, besides the ventilation, there is no other life support going on at the moment. You could argue that feeding with a PEG or TPN is life support too, and I agree with that, but it’s not a major form of life support like ventilation. Right?

Jeff: Right.

Patrik: So, his opinion is that if she to stay on a ventilator that she could well live for quite some time. Obviously it’s hard to put a time frame on it. But the question that I had for him was, “If she stays ventilated, what’s the outlook going to be?” He shared with me the ventilator settings she’s on, and given that she’s on 30% of oxygen, that’s not a lot. So if the room air, you know the air we breathe, is 21% oxygen, right?

Jeff: Right.

Patrik: And she’s getting 30% of oxygen from the ventilator, so that’s … You know a lot of patients in ICU they get 50% of oxygen and above. Right?

Jeff: Understand.

Patrik: So from that perspective … I’m not sure what he discussed with you. When we talked yesterday my understanding was you felt like he was more or less explaining to you that if they took her off the ventilator she would die very quickly. Is that what that your understanding?

Related article/video:

The Difference Between “Real” And “Perceived” End Of Life Situations When Your Loved One Is Critically Ill In Intensive Care!

Jeff: Yes, they wanted permission to take her off the ventilator, and they promised me that she’d have no discomfort, no pain. They give her sedatives and drugs or whatever to put her in a sleep state and pain free, and then, they didn’t give me a time frame how long it would take for her to pass, but it’ll be quick according to them.

Patrik: Right. And they’re probably accurate that whenever it comes to end of life in intensive care, they have all the medications to make that transition from life to death basically. But at the same time, you look at what’s keeping her alive. I guess it’s then a matter of weighing up the pros and cons, what do you want, also obviously what’s possible. Right?

The other question that I had for him was in regards to vasopressors/inotropes. Now, I don’t want to use the medical jargon here, and I don’t want go overboard, but besides ventilation another issue that often keeps patients in intensive care is the aid of vasopressors/inotropes. Now vasopressors/inotropes are medications for low blood pressure, and she is not on any vasopressors/inotropes. Right? And I understand if anything the heart rate has been high, and I know you’ve been saying that yesterday, the heart rate has been high, and the concern is that her blood pressure has been on the high side if anything; it hasn’t been low.

So from that perspective, somebody with low blood pressure and needing the vasopressors/inotropes is nowhere near of being able to leave intensive care. Now given that she’s not on vasopressors/inotropes, that I see as a good sign.

Jeff: Okay. My main concern is once she is weaned off – right now they’re giving her Fentanyl, Ativan, and Haldol to keep her calm.

Patrik: Yeah.

Jeff: Then every once in a while they’re giving her Dilaudid. I asked them to give her the minimum amount of Dilaudid.

Patrik: Yeah.

Jeff: And as she’s coming off of these drugs, she’s in some kind of stress. I don’t know if it’s pain … I have no clue. Her heart rate goes up and then her blood pressure goes up. The last two days, they both stayed steady. She had a bout today with a high heart rate, but most of the time it’s in the 100-110, and her blood pressure is about 150/80.

Patrik: Yeah. Yeah.

Jeff: They reduced the amount of support from the ventilator, Pressure support to 14; it was at 20 on the ventilator, and she struggled. She struggles when sort of awake.

Patrik: Yeah. And we’ve discussed that. I’ve discussed that with the doctor. So, what happens is, in intensive care when somebody is in an induced coma, they’re getting- Have you heard of the term benzos or benzodiazepines? Have you heard of that term?

Jeff: She was getting Propofol when she was in the hospital, along with many other-

Patrik: Yeah. Okay. Benzos is basically, they are tranquillisers. Propofol is not a benzo. You would have heard of Valium?

Jeff: Valium? Yes.

Patrik: Valium is a Benzo. Valium is a benzodiazepine. It’s basically a tranquilliser. It relaxes people, it takes people’s anxiety away, but it also makes people sleepy. Cutting through all of this, at the moment she is on lots of benzos. She is not on any Valium, but the Ativan, for example, is a benzo. The Dilaudid is a pain killer. When I spoke to the doctor, they are giving this at the moment intravenously. So they are giving it in a drip. That’s my understanding from what the doctor told me. Now, in order to make that transition-

Jeff: It’s fine.

Patrik: Right. Right. And you wanna- Sorry?

Jeff: The only thing they’re giving her intravenous right now is an antibiotic and the TPN. Everything else is through a port. They give her all injections in the port. They are starting to give her regular meds, I don’t know how much they are giving her, though the feeding tube; through the PEG.

Patrik: And that’s exactly what I asked-

Jeff: And she’s getting …

Patrik: Go on.

Jeff: She’s not getting any meds through the IV.

Patrik: Okay, okay. That’s-

Jeff: It’s just the TPN (=Intravenous nutrition) and an antibiotic.

Patrik: Okay. Okay. That-

Jeff: And they’re weaning her off the TPN (=intravenous nutrition) tonight.

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Patrik: Good. Okay, that’s not what he told me. He was telling me that she’s pretty much getting everything still through the IV. But I thought that would be a matter of time until they wean off the TPN (=Intravenous nutrition) and go through the PEG, and you’ve confirmed that to me. Because I said that to him, I almost discussed with him, I said, “Look, you’ve got to get her off the IV, because that’s only temporary. Especially if she has a PEG, the goal is to give everything through the port. Any concern that this would happen eventually, because in terms in order of providing home care, you can do IV at home, but it’s not preferred. It’s not preferred. And that sort of transition- Go on.

Jeff: Outside of what you said, the TPN (=intravenous nutrition) that they’re weaning her off of tonight, and the antibiotics that they’re giving her, that’s the only thing going IV.

Patrik: Right.

Jeff: Everything else is the port with injections. You know they gave a strong one.

Patrik: Yeah. Yeah. When I explained to him what we could do in terms of home care, and obviously with the situation that you know the options are: number one, go to Georgia; number two, prepare for a potential end of life situation; or number three go home. Then I explained to him what we could provide at home, and he said, “Yep, that is an option.” And he actually sounded quite supportive of the idea if that’s what you want.

Did you have chance-

Jeff: What do I want?

Patrik: Yeah.

Jeff: I’m sorry. I’d like her to come home.

Patrik: Yeah. And that’s what I explained to him. I said to him, “Look, my understanding is that you want her at home, and we believe we can make that happen.” And he said, “Yep, if that’s what he wants.” He was quite supportive of that.

Have you had chance to talk to him today?

Jeff: I’m sorry?

Patrik: Have you spoken to this doctor today?

Jeff: I did before you spoke to him. Yeah. When I emailed you I said I spoke to him about a quarter to nine this morning and explained to him what you were about.

Patrik: Right. And that must have been when he rang me straight away. But you haven’t spoken to him since?

Jeff: I have not. No.

Patrik: Okay. Okay. I think from my perspective, what we might be doing next, maybe on Monday, or even tomorrow, depending on his availability, maybe we should set up a call between you, him and myself. What are your thoughts.

Jeff: It could be arrange. I don’t know what his schedule is.

Patrik: Have you seen him over the weekend?

Jeff: No, occasionally he comes in on Sunday, early morning. He does rounds at the ICU where my wife is.

Patrik: Yeah. Maybe what we should be doing is maybe on Monday we should set up a call with him. What do you think?

Jeff: I can talk to him and see?

1:1 phone counselling and consulting with Patrik

Patrik: Yeah. I think that’s what we should be doing. Talk to him. Make a time, and the time doesn’t really matter to me, I can make myself available. Schedule a time that’s convenient for him and for you, and then we’ll talk.

Jeff: Okay.

Patrik: So I’ll wait for you-

Jeff: I’ll get in touch with him.

Patrik: Yeah, get in touch with him, get in touch with me. Either send me an email or call me. You’ve got my number 415-915-0090, and we’ll take it from there.

Jeff: Okay.

Patrik: All right I’ll wait to-

Jeff: I’ll do my best to get in touch wit him.

Patrik: Okay. I’ll wait to hear from you.

Jeff: Okay.

Patrik: Thank you.

Jeff: Thank you

Patrik: Thank you. Bye-bye.

Jeff: Bye.

Patrik: Bye-bye.

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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