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 Peter, as part of my 1:1 consulting and advocacy service! Peter’s mom has stomach cancer in the ICU and Peter is asking why are the doctors negative from the start telling that his mom’s cancer is inoperable and is not a candidate for chemotherapy?
My Mom is in ICU with Stomach Cancer. Why are the Doctors Negative from the Start Telling that her Cancer is Inoperable and is not a Candidate for Chemotherapy? Help!
“You can also check out previous 1:1 consulting and advocacy(7) sessions with me and Peter here.”
Peter: Yes, they tried this morning. She was just on the ventilator two days ago. They tried to take her off today but she didn’t do good as far as results. So they made an attempt to take her off and we were like wow, they’re taking her off so quickly. But then they put her back on because she didn’t do well.
Patrik: Okay, and was that the first time they’ve done that?
Peter: This is the second time. They tried yesterday and then they tried today.
Patrik: And within that four-week cycle since she had the tracheostomy she’s never been off the ventilator not even for five minutes?
Peter: Oh she was. She got off. So what happened was she’s back in the ICU. She came into the ICU, got off the ventilator, did well, went to-
Patrik: Sorry, you’re dropping out.
Peter: Sorry. So she did well, went to the regular floor. So she was in the ICU on a ventilator, was weaned off the ventilator. I apologize for missing that detail. I went to the regular floor, but then started having more problems because the level of care is different, it’s not the same and apparently, her breathing was affected and she came back up to the ICU and back on the ventilator. They’re saying the cancer is causing pleural effusion and other things because she’s also on a chest tube taking stuff out of her lungs as well. She has a chest tube that was inserted so she’s back in the ICU. They’re saying even if she gets out of the ICU she’ll be back here again in a month or in a few weeks. It’s like a cycle, it’s like an ongoing cycle. That’s what they’re saying.
Patrik: I see. So she has a chest drain in her lungs?
Peter: Yeah, she does. Unfortunately.
Patrik: And is that right. How long has that been in for?
Peter: I’ll say about a month ago as well. So when she came in that’s when they put it.
Patrik: Okay. Do you know how much drainage there is in the drain, sort of on a day by day basis? Do you know how much is coming out on a day by day basis?
Peter: No, but it still seems like it’s draining though. I know they’re saying it’s quite a bit, but it still seems like it’s draining and they’re like that’s not good.
Patrik: Right. Okay. And where’s the infection coming from? Do they have any idea?
Peter: The infection I believe is associated with the … They said she’s also possibly resistant to the antibiotic, but I think the infection is coming from … She has pneumonia.
Patrik: I see. Okay. Those, from my perspective, are the next steps. Number one, you need to control the communication, which means you can’t control what they are saying but you can control how you respond. It’s as simple as that. And number two, the next step to sort of get more clinical detail and also then challenge them on a clinical level is to look at the clinical situation, which means let’s have a look at the ventilator, let’s have a look at the vital signs, let’s have a closer look at the blood gas. You mentioned the arterial blood gas, which is very important. And let’s have a look at those clinical issues and challenge them on a clinical level. Because you know, you might have done that to a degree, but having somebody that can guide you with the clinical step by step will definitely help you to get the best outcomes for your mom.
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Patrik: With the stomach cancer is she having chemotherapy, what’s the …
Peter: Yeah, they said she’s not a candidate for chemo right now because chemo would take her out more. And she did 30 days of radiation but that was in November and December. So she’s not getting any type of treatment and they say her tumor is growing and she’s not a candidate for surgery.
Patrik: That would’ve been my next question. Why is she not a candidate?
Peter: That’s a good question. I don’t know. They just told us she’s not a candidate. They just tell us and we just take what they tell us. Because I think she’s too malnourished. They say she’s too malnourished right now. She’s lost a lot of weight so she’s not a candidate for her tumor to be taken out, but they said if they did her surgery right now they don’t think she would wake up. Because we’re pushing for a feeding tube and they wouldn’t get her on a feeding tube. She’s on TPN.
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Patrik: How long has she been on TPN for?
Peter: Oh wow, since for about … She had a feeding tube, it came out. Sorry, I know her case is a bit complex. She had a feeding tube in January, it came out when the nurse turned her and she was in a previous facility. The nurse turned her, the tube came out, and they couldn’t put it back in. So she’s been on TPN for about since March I would say, or April till now.
Patrik: But nevertheless, she lost a lot of weight.
Peter: Yeah, she lost a lot of weight. So right now she’s just on TPN to sustain her.
Patrik: Yeah, sure. That could be an issue. Often what happens with stomach cancer, at least from what I’ve seen over the years, they often do a gastrectomy, which basically means total removal of the stomach, but if your mom lost a lot of weight, yes, surgery would be high risk, that’s number one. Number two, it’s too late now but I’m wondering why didn’t they suggest or do that in the beginning when she was first diagnosed. How long ago was she diagnosed?
Peter: About 2016. I think early 2016 we were going to local hospitals here. They’re giving us the runaround and then they just told her her cancer is inoperable. They didn’t tell us why. They just said it’s inoperable. But again, because we’re not medical professionals, we just … It’s kind of like when they tell you, you just take it like it’s a word from God, right? We don’t really know. So it’s inoperable, but they didn’t tell us why it’s inoperable. Now it’s kind of became worse and worse and worse. So it’s just tough.
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Patrik: Of course. So basically they told your mom from day one it’s inoperable?
Peter: Yeah, but they didn’t tell us why it’s inoperable. Which then she even had a lot of weight, so I’m thinking it was the type of insurance she had. Maybe they didn’t want to spend money to do it.
Patrik: Right. Okay. I see. Look, that’s interesting because if you’re saying 2016 you’re talking about three years, I mean she must have, something must have worked for me. At the moment is your mom coherent?
Peter: Yeah, absolutely. Her physical therapy just came in and I signal her to raise a hand, she raised her hand when I talk to her. She can’t talk because of the tracheostomy but she can nod her head when you ask her a question. She’s very alert.
Patrik: Okay, good, good. And what about is she getting out of bed? Is she mobile?
Peter: No. The only time she got out of bed is when physical therapy came right now. Other than that she really doesn’t get out of bed.
Patrik: Okay, once a week? How often?
Peter: They said they’re going to start … She’s been on the bed for the last week, but they said they’re going to start physical therapy once a day.
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Patrik: Okay. Is her time in ICU limited by the insurance? Are they putting any timeline?
Peter: That’s what we don’t know. They’re not telling us this stuff. They will give us half the information but they won’t tell us, well it’s limited by insurance, so we don’t even know, but I’m suspecting it is.
Patrik: Okay. I tell you one thing. If the insurance has not contacted you or your sister, I wouldn’t worry about it. If you don’t hear from the insurance I wouldn’t worry about it. You need to verify everything they’re telling you. You can’t take their word for God’s worth.
Peter: That’s exactly what my girlfriend said. So what does that do? Does that mean we call the insurance company to verify?
Patrik: I’ll tell you what I would do if I was you. I wouldn’t talk to the insurance, I would wait for what the hospital is telling you, but what I would also do, if the hospital is telling you the insurance is running out next week or whatever the case may be, I would trust but verify. But don’t verify … Verify it yourself, call the insurance. But don’t do it until they tell you we’ve got a deadline.
Peter: All right. They haven’t told us, no one has ever told us. That’s what I’m suspecting is happening. I’m suspecting the insurance is running out but they’re telling us they don’t have any other options. I’m suspecting that’s what it is but I don’t know for sure.
Patrik: You can’t take their word for granted. You need to question everything. Question everything.
Patrik: So what we can do from here, as I said, we could challenge them on a clinical level, which I believe hasn’t happened yet. Things like your mom need to get out of bed, she needs to get out of bed daily I believe, to get stronger, to get her off the ventilator. Those type of things we can challenge the team on. Because that’s how you get people stronger. And we can start with looking at the ventilator, looking at blood gas results, looking at vital signs. Do you know whether she’s on any vasopressors or inotropes? Do you know what I mean by that?
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Peter: Let me ask the nurse?
Peter: Is she on any vasopressors or inotropes? No vasopressors, no inotropes? No.
Patrik: Good. And no sedation at all.
Peter: No sedation, right? Discontinued today. Okay. Fentanyl is PRN. She was on fentanyl but it’s discontinued today, it’s PRN.
Patrik: PRN. Okay. So those would be the next steps really to look at the clinical side of things a bit closer and then I can guide you whether … Or I can talk to the doctors directly, doesn’t really matter to me, one way or another is fine. And then we’ll take it from there. How does that sound?
Peter: Yeah, it sounds great. Just if you … Sorry, because I didn’t take notes, so I heard what you said. So just ask for … I have the labs, I don’t know if I can share that with you.
Patrik: Yeah, if you didn’t take notes don’t worry too much about it, I’m recording the call and it’ll go on Skype automatically and you can listen to what we discussed. If you do want help going forward I do charge a fee for that. I can quickly talk you through some options and then you can decide what you want to do from there.
Patrik: So I have several phone and also online options. Either you have access to me over the phone or via email or you can do both. I have several options. So for example I have a two-week option, you have two weeks, 24 hours unlimited access to me, it includes talking to the doctors, to the nurses, social workers. If you have any meetings I can be there over the phone. If you choose the two-week option, you don’t have to use it for two weeks in a row, you can use it at your own pace. You spread it out over a period of time that’s convenient for you. I have a seven-day option, the same applies. You have seven days, 24 hours unlimited access to me. It includes talking to the doctors and nurses, if you have any meetings I will be there over the phone. Again, you use the seven days at your own pace, I have a four-day option, same rules apply. Four days, 24 hours unlimited access to me. You can spread it out over a period of time that’s convenient to you. And again, it includes talking to the doctors and nurses if you have any meetings I’ll be there over the phone. I can send you all of that in Skype and in an email.
Peter: Yes, please. Yes, an email, yes.
Patrik: I’ll send it to you on Skype and via email, then you can have a look. Please note that I do work on a first come, first serve basis. As I said, it’s a 24-hour unlimited service, and then you can make a decision from there.
Peter: Absolutely. Let me send my email to you right now.
Patrik: I think I’ve got it, because when … Just give me one second. Yep you sent it to me.
Peter: Yeah, when I scheduled the call. Yes.
Patrik: That’s right. When you scheduled the call. But just give me one sec. Why can’t I find this now.
Peter: So real quick, the thing is they said she was resistant to Meropenem so how do we get them to give her … They said that’s the strongest, how do we get them to give us stronger antibiotics. Because I can tell you what she’s on right now. She’s no longer on Meropenem, they gave her it’s like ceftolozane/tazobactam.
Patrik: Okay, it is not about the strongest antibiotic, it’s never about that. It’s about the right antibiotic for the right bacteria. It’s not about whether it’s strong or not, yeah that’s a little bit part of it but it’s more about selecting the right one.
Peter: Right, and that’s another thing I’m concerned about. Since they’re trying to get us out of here can they intentionally give out the wrong antibiotic that she won’t respond to just to take care of-
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Patrik: Unlikely. I don’t think that they’re doing the wrong thing. What I am thinking is they may not give 100% of the things they should be doing. That’s what I would be worried about. It’s not about … Look, with all the criticism that I have for the system, I don’t think they’re doing the wrong thing. What I do believe is that they’re not doing everything to the extent they could be doing things. That would be my concern. All right?
Patrik: So I just texted you your email address, is that the one?
Patrik: So what I’ll do, Peter is I’ll email, I’ll send you the consulting options in Skype and via email and then you can make a decision from there.
Peter: Yes, so if I sign up for the monthly option you said that’s just online access to you, right?
Patrik: Correct. Email, Skype, that’s fine. We can email on Skype, there’s no issue there.
Peter: Okay, sounds great. I’ll look through all the options and then if I need you to talk to them I need to get a … What option do I need?
Patrik: Yeah, so you could use one of the unlimited options of course or you could just book an hour if that’s the case. So I have options. I have unlimited options and I have just the hour option. Depending on how long you think it’ll take. We can look into that once you’ve reached … I’ll email all of that to you and then have a look and then if you have any questions regarding those options please let me know.
Peter: Okay, great. Thank you so much.
Patrik: You are very welcome. I’ll talk to you soon. Take care for now.
Peter: All right, thanks, bye bye.
Patrik: The very best. 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
- 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!
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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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