My Mother Had Surgery and Has a History of COPD. Does Futility According to the ICU Team mean “End-of-Life” For My Mum?

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

My Mother Had Surgery and Has a History of COPD. Will LTAC or Home Care Be Enough For Her Condition?

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 Tim as part of my 1:1 consulting and advocacy service! Tim’s mother had gastric surgery, has COPD in the ICU for pneumonia and is asking if his mum’s gastric cancer is the reason why she cannot be weaned from the ventilator.

My Mother Had Surgery and Has a History of COPD. Does Futility According to the ICU Team mean “End-of-Life” For My Mum?

“You can also check out previous 1:1 consulting and advocacy sessions with me and Tim here.”

PART 1

PART 2

Tim: Yes! He’s Excellent!

Patrik: Is he?

Tim: He’s… oh I thought he was.

Patrik: Okay.

Tim: Well… I don’t know

Patrik: He’s Chinese?

Tim: Yeah, he was honest!

Patrik: Yeah no-no that’s good that’s right. No, I had some horrible experiences with him, but if you think he’s good that’s great!

Tim: No, no-nah… he’s the only doctor in the ICU that said it would “I guarantee take you about 3-5 weeks for your mom to come out of this” And that was 2 weeks ago, and we still got 3 weeks to go. And these doctors are going…

These Union doctors are going “Oh no” you know… “What’s the family meeting about?”

Patrik: Yeah, yeah

Tim: I’m not being rude but I would-

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Patrik: Yeah no you’re just standing you’re grand, you’re just standing your ground, exercising your right that’s all. You’re just exercising your right that’s all. And uh, and then there’s another guy, he’s Russian. I can’t think of his name now he’s Russian, he’s horrible.

And then there’s this, there’s a lady… she’s the Nursing Director I believe, she’s just so rude. I can’t think of her name now. I’ll get you some names, once I’m in front of my computer I’ll get you some names.

Tim: I don’t know his last name but Aaron… But Aaron… I don’t know his last name he’s a s**, oh he comes arrogantly, Um. Oh… mate doesn’t matter I’ll certainly do something for you.

Patrik: Well tell me what the next step is?

Tim: Patrik, Patrik?

Patrik: Yeah?

Tim: It’s Patrik.

Sarah: So, you want me to talk with him?

Tim: Who’s Patrik? He’s my… my partner. Yeah what happened?

Sarah: Hi Patrik.

Patrik: Hi, how are you?

Sarah: Oh, yes been a day! (laughs)

So… the Social Worker apparently, which I don’t want a Social Worker anyway. And I said I’m going to put in a formal complaint. No, the actual bigwig of the Social Work has talk to me and um… she said “Oh, she was distraught”

Tim: Who? The social worker.

Sarah: Yeah… And um anyway what she said to you. I said that’s not right what she said to you that you can’t see your mum… Oh my God. And um… because of the medical records we had to go through uh…

Tim: Legally or something?

Sarah: No, no-no. There’s a building he’s somewhere near radiology.

Patrik: Yeah that’s okay, just follow that. Because you know you might have to-

Sarah: Yeah.

Patrik: You might have to… you know but that’s okay you will get the medical records.

Sarah: But um… I said I’m still lodging a formal complaint, so they’ve given me a number, and I said I like an email address as well.

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Patrik: Right, right you can do that-you can do that. But what I said to Tim is another strategy is to get over to the private section.

Sarah: Right, and that’s what I said I said I was a bit upset myself. And, um kind of clearing up their credentials, are you all qualified, or you know, do they just let you know the trainee, because you know it’s a Training Hospital.

And he’s like “Oh no, no, no!” But like I know, like when we first started like You have trainees going in there and whatnot. So, um… any who… I’m with you on that one because now it’s all about monitoring and medication”

Tim: Sorry.

Patrik: No, no, that’s okay. So, if you-

Tim: So, I went out there because then that lady threatened me that Social Worker she said, “I’m offended” I said “What? “And she goes, “I’m”- And I go “I’m ending this conversation now cause” I thought oh… this is like a setup. So, I thought-

Sarah: I found her-

Tim: um… What?

Sarah: Apparently, she cried.

Tim: Who?

Sarah: She did.

Tim: See now, the Social Worker cried. I didn’t say anything, all I said was “This is my mum”.

Patrik: Look Tim I’ve-I’ve got to run now-

Tim: Oh, you’re a legend-

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Sarah: I said um-

Tim: Wait, wait.

Patrik: Please send, please send me a picture of the ventilator.

Tim: Yes.

Patrik: Get those, get those medical records. And then we’ll see what the next steps are. Once I’ve seen the ventilator I have a very good idea of how far she’s away from getting off the ventilator or not. And then we can look at the next steps, what we do.

Tim: I’ll definitely do that for you.

Patrik: But don’t-don’t… don’t engage in any argle-bargle with them just… you know just you-you they know what you want you’re very clear-

Tim: Yep.

Patrik: And just, don’t move from that. You know don’t-

Tim: You’re the Nurse, best Heaven on Earth, and I don’t know what’s going on after this but you’re a God. I’m not being raving on but, you’re magic, I mean you must make so many people happy in life I’ll tell you know I just. It’s amazing I don’t know what they say but-

Patrik: Doesn’t matter what they say, doesn’t matter what they say.

Tim: Good on yeah.

Patrik: All right, get me a picture and then we’ll talk again.

Tim: Thank you Patrik.

Patrik: Okay thanks Tim, Bye-bye.

Tim: Hello?

Patrik: Hi, Tim, it’s Patrik speaking here from Intensivecareathome. How are you?

Tim: Good thank you, how are you?

Patrik: Very good, thank you. Is this a good time to talk now?

Tim: Yes.

Patrik: I can make unlimited calls every day-

Tim: Oh, okay.

Patrik: I’m talking to people all over the world every day. Fine, fine.

Tim: Oh, okay. Yeah, so I did have a talk this morning with the doctor. They’re just saying, you know, it’s all too hard for them, because of the underlying cancer at that point, you know?

Patrik: What do they mean like, they’re saying it’s all too hard to bring your mother off the ventilator, is that what you’re saying?

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Tim: Yeah.

Patrik: Right.

Tim: And because she had that, she’s still got a bit of inflammation, because of this… the aspiration she had, and… yeah.

Patrik: Just remind me again, just remind me, how long in ICU now?

Tim: On Monday it’ll be three weeks.

Patrik: Three weeks. And how many days on tracheostomy?

Tim: Today would be 11, I think.

Patrik: Okay, okay. So basically, what they are proposing is, because of the cancer, it’ll be too hard to wean your mum off the ventilator. Is that what they’re basically saying?

Tim: They said it’s futile, they said there’s no point, because, 6 to 12 months, 18 months, she’s still going to pass away from cancer anyway. No-one really knows, I mean, that’s… she had a lot of it.

Patrik: Okay, all right. No, no, I hear you, I hear you. So, but then…okay. Let’s just take this worst-case scenario for a moment, okay? Let’s just say your mum stays on the ventilator for the next 6 to 12 months, and she’s going to pass away. Let’s just take that worst-case scenario for a moment, okay.

Tim: Yes.

Patrik: So, from my perspective then again, that would be even a bigger argument to get her out of ICU, with a service like Intensive Care at Home, right? I mean, we’re… again, I’m talking about the worst-case scenario here. If that worst-case scenario was to come true, where would your mother want to spend the time? At home, or in ICU?

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Patrik: I mean, that’s a no-brainer.

Tim: But she just said to me then, “Oh, I want to go home”.

Patrik: Yeah.

Tim: She just now… she couldn’t say it, but she mouthed it.

Patrik: Yeah. So… so you know, that to me is a no-brainer, and I can tell you from experience, Tim, we have provided end-of-life care at home for patients on ventilation. We have done that, right.

Tim: Oh, okay.

Patrik: So, this isn’t new for us-

Tim: Yeah.

Patrik: To provide… if it is end-of-life care. And just remind me… we were talking about this yesterday. You said there was the surgeon, who’s very supportive.

Tim: He’s starting to change now.

Patrik: Oh.

Tim: He’s the professor, he’s starting to change now. He said… I think they’re pressuring him.

Patrik: Right, right, right.

Tim: Because I spoke to the one doctor this morning, and he said, “Oh look, she’s stable, you know, not too bad. She still needs a bit of support”. I mean, I don’t understand all the numbers on the machine, I’m not sure-

Patrik: But I was coming… I was to come… I was coming to that in a moment. I’ll come to that in a moment. I’ll talk about it-

Tim: So yeah, so he’s… sorry, and then so they wanted to have a big meeting yesterday, and I cancelled it.

Patrik: Mm-hmm (affirmative)-

Tim: It won’t happen at all about that.

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Patrik: Doesn’t matter, doesn’t matter. So, this surgeon, who is he? Is he a cardiothoracic surgeon?

Tim: Yeah, he’s an oncology, sort of… he’s a professor, Darren Mc Millan, yeah.

Patrik: Darren? Sorry, just give me one second, I’ll just Google him, just give me one sec. What’s his name, Darren?

Tim: Mc Millan. M-I-L-L-A-N.

Patrik: Okay, and he’s an oncologist, is he?

Tim: Oh, no, he’s a surgeon. He’s like a… he does surgery when people won’t do surgery.

Patrik: Right. I just need… I just want to find out what… surgical oncologist, okay. Yeah, yeah, no, he’s coming up. Surgical oncologist, yeah. No, no, that’s fine. So, and then you’re also talking to the lung doctor who is a respiratory physician?

Tim: Yes.

Patrik: What’s his name?

Tim: Dr. Anthony Ives. I-V-E-S, I think.

Patrik: Okay, okay. That’s okay. And you think they’re both sort of… you thought that until yesterday they were supportive, but now they’re sort of doing a U-turn?

Tim: The young other lung doctor, he’s still very positive, and good. And the other doctor, the ICU doctor.

Patrik: Right, right.

Tim: The one that linked to the site. He’s… he was just telling me then that it’s all futile, it’s all too hard work and they can’t afford it.

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Patrik: Right.

Tim: He said she shouldn’t have been intubated and all that.

Patrik: Right, right.

Tim: But put the cancer in the background, I said, “Just talk about the lung”

Patrik: Yeah, yeah.

Tim: That’s what we’re all here for.

Patrik: Yeah, yeah.

Tim: And he goes, “No, no, no, we’re not doing that, because we’re looking at the whole thing.”

Patrik: Okay, Okay. So, the… besides the ICU people, the surgeon and the lung… the respiratory physician, they have never mentioned the term “futile”, have they?

Tim: The lung doctor?

Patrik: Right.

Tim: No, and definitely not… the others have been positive there.

Patrik: Okay, because… I’m glad you mentioned that because “futile” is a strong word in ICU. If you… “futile” basically means that… the definition of “futile” is basically of no benefit… no, it’s of no perceived benefit to a patient, okay. Treatment is of no perceived benefit to a patient, that’s what “futile” means.

Tim: Yep.

Patrik: Okay. But I’m not surprised that the ICU is bringing up… and that the respiratory physician and the oncologist are more positive, right. I’m not surprised there, because clearly the ICU is talking about their beds, even though they’re not mentioning it, they’re talking about your mum potentially occupying a bed for god knows how long, right.

Tim: Yeah, that’s it.

Patrik: Their way of managing that is to basically let your mother die, that’s their way of managing it. Which is why they’re bringing in the term “futile”, right. The minute-

Tim: Yep.

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Patrik: The minute an ICU starts talking about futility, that’s the minute they’re trying to start talking about end-of-life. Right? So, so then… and that’s good that you stopped the meetings now, because if we do have this meeting on Monday, it’ll be… your communication will be around going home.

Tim: Yes.

Patrik: Right, and I’d say contact, as we talked about, HCF, but now I quickly want to talk about the pictures you sent through. So, at the moment your mum is breathing spontaneously with a fair bit of support from the ventilator, what does that mean? Your mum has the strength to trigger breaths from the machine. She must overcome a certain resistance in the circuit, and then a breath gets delivered, okay.

Tim: Okay.

The 1:1 consulting session will continue in next week’s episode.

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