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 Julie as part of my 1:1 consulting and advocacy service! Julie’s mother is critically ill in the ICU for four (4) weeks with sepsis. Julie is asking on how she can make the family meetings with the doctor on her terms and not on their terms.
My Mom is in the ICU with Sepsis. How Can I Stop End of Life Proposal Made By Doctors in Family Meetings?
Julie: She’s been getting a little bit of fever and they’ve been giving her Tylenol, because they’ve been taking chest X-rays and checking the white blood cell count, and everything’s been good. So, they told me they think the fever is from the long wean trials putting a lot of stress on her body. Another thing, she’s so swollen like you wouldn’t believe. I’ve never seen her this swollen.
Patrik: Okay. Okay. Now, we’re probably coming closer to what’s happening. Okay. Are the kidneys working?
Julie: Are what?
Patrik: Are the kidneys working? You know what I mean?
Patrik: Okay. The kidneys. Is she making…
Julie: Oh, kidneys. Yes, yes. I thought you said T-P. I was all the TPN?
Patrik: No, no.
Julie: Yes. The kidneys are working.
Julie: Yeah. The kidneys look good.
Patrik: Okay. All right. So, the reason for swelling could be a number of reasons. It could be the kidneys not working, but if the kidneys are working, it’s probably a by-product of her being in bed for so long. Being bedridden and fluid’s not moving. Imagine. How long has it been now? Four weeks?
Patrik: Right. Right. So, imagine you’re immobile for four weeks. Of course you’re getting swollen. Okay? That’s one reason, but there could be other reasons. For example, one reason for swelling could be a low albumin. Okay? If albumin is low and there’s a good chance that albumin might be low, swelling will occur as a by-product of low albumin. So, I would ask for albumin levels if I was you. That could be one thing. I would ask for haemoglobin levels in particular. The albumin and haemoglobin levels would be two good numbers to get. I’m trying to remember. I think your mom had blood products in the past. Didn’t she?
Julie: She has what?
Patrik: Your mom had blood product in the past, like a blood transfusion.
Julie: Sorry, the phone’s breaking up. Did you say has she had blood pressure problems in the past?
Patrik: No. No. Blood transfusion.
Julie: No, she has not.
Patrik: Okay. Okay.
Julie: No. She’s been super healthy her whole life. All her organs. She’s never had any sort of until now.
Patrik: Okay. Okay.
Julie: And her leg five years ago. But other than that, no hospitals engagements, no surgeries, no sicknesses, nothing.
Patrik: Okay. Okay. So those are the things to look at. However, just remind me when did we speak to the doctor? How long ago was that? A week ago or two weeks ago? I can’t remember. How long ago…
Julie: I think it was… I want to say like four days ago, right?
Patrik: It would’ve been about a week ago, I think. It would’ve been last-
Julie: I think it’s been a whole week, hasn’t it? I want to say it was Thursday. Yep. You’re right. Oh my gosh. You’re right.
Patrik: I think so. It must’ve been about a week ago. Maybe even two weeks ago. I can’t remember, but anyway, I’m surprised that this hasn’t happened, yet. I’m very surprised. I’m trying to find a reason why she’s on such doses of vasopressors still.
Julie: She’s not anymore.
Patrik: Yeah. Sure, but on and off. Yeah, but on and off.
Julie: Yeah, but two days now, she hasn’t been on any blood pressure medication at all.
Patrik: Okay. Okay. Okay. So then, the tracheostomy needs to happen. Needs to happen. I mean she’s on high doses of sedation, which is a real concern. It’s getting her weak. It’s making her weak, you know? It’s keeping her in that coma that she needs to come out of as quickly as possible. Right?
Julie: Yes. And what do I say today when they say, “Well, you’re risking her life when we go in to perform this tracheostomy surgery?” Because I already know it’s coming. Everybody coming to this meeting is involved in my mom’s case including the surgeons. So, I have a feeling they’re going to try to just beat us down.
Patrik: Right. Right. Right. I see. I see. Have you signed for consent for a tracheostomy?
Julie: They haven’t told me I needed to, because I told them that we’ve upped the next step. We want to do it.
Patrik: Right. Okay. Sure. Well, I mean nine times out of ten, you would still have to sign something. That’s the medical power of attorney.
Patrik: Right? It’s a procedure you would have to sign. So basically what you are proposing or one of your fears is that if you went to the meeting that they would try, you said that you would try and pin you down, potentially want to go with the other direction. That’s one of your concerns.
Julie: Is what one of my concerns?
Patrik: Yeah. So, if you went to a meeting, right? That they would say, “Oh, we think it’s in your mom’s best interests not to do the tracheostomy and potentially let her die.” Is that one of your fears?
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Julie: Yes. I know they’re going to say that. I already know. This hospital is very, very brutal and we are bullied 24/7.
Patrik: Yeah. Okay. Okay. So, what about the meeting? Do you have a time for that?
Julie: Yes. It’s at 1 o’clock. I’m supposed to be there at 1 o’clock. I’m on my way there right now.
Patrik: Okay. Okay. Well, I mean it’s possible that they do that. At the same time, what I would do is… I mean the game plan was to do the tracheostomy. That was the plan. Then, venture out. But sending her to another hospital not to LTAC, right? So, I really don’t understand why they haven’t done the tracheostomy yet by now. Yes, vasopressors. Sure. But it’s rubbish that it hasn’t happened yet. It’s just bad. I would approach the meeting as follows.
Julie: What are we going to do, because they’re still talking about not being able to schedule it right away because they need both surgeons there? I’m like this is stupid already.
Patrik: This is stupid, and I’m wondering why they need two surgeons. Look, if your mom had a normal anatomy, they would do the tracheostomy in ICU and it would be within half an hour. Simple. Very simple in this day and age. Okay? So, but with the added on complexity of the short neck, obviously it’s putting in another layer of complexity. But nevertheless, it should have happened by now.
I would approach the meeting as follows. I would approach the meeting you go there, but if they start talking about end of life, you just say we don’t even want to entertain that. We want to have the tracheostomy done and that’s why you are here. You go in there on your terms, not on their terms.
Julie: Good, because the main reason I’m going is, I just wanted to meet the surgeons and hear their take on it because I’m tired of Dr. Smith’s take on stuff. And I was hoping to hear a fresh take on it.
Patrik: Exactly. You go in there on your terms and you don’t want to talk about anything else.
Patrik: You know?
Julie: Okay. So, it’s better for me to say I don’t want to hear the worst case scenario, you know? I don’t want to hear it, because it devastates you and then you lose your energy for wanting to do it. It’s really hard to try to separate, okay we’re trying because there’s life there and where there’s life, there’s hope, and also be like, “Oh my God, what are we putting my mom through?” I don’t really believe in just throwing in the towel and letting her die, either. I don’t see any hope in that. There isn’t any.
Patrik: Yeah. Yeah. So, you think the surgeons will be there and you think that what was his name? Dr. Smith?
Julie: I think he’s going to be there and I think the case manager, too, because they told me everybody’s coming to this meeting. I said, “Well, I don’t understand why everybody’s coming to this meeting.”
Patrik: When did they tell you about the meeting?
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Patrik: Okay. What’s the meeting all about? Just about the tracheostomy or…
Julie: I asked, and the nurse said, “I have no idea. Dr. Smith told you to pick a time between 11 and 1 and that both surgeons themselves and the case manager are going to be in the meeting, and they feel as though you should be there.” So, I was like okay and they said and any other family members that are involved in the case of your mom going forward. So, I think it’s just the surgeon saying what the risks are which I know there is high risk, but do they know the risk in unplugging everything?
Patrik: Fair enough if they want to talk about the risks. That’s fair enough, but one of the surgeons could have also picked up the phone and talked to you about the risks by now. Plenty of time for that.
Julie: I agree.
Patrik: And that’s where I’m suspicious, too. Why can’t that be done over the phone? Why do they want to meet in person? I would be very cautious here, Julie. You got to be prepared for if they give you the negative talk, then you got to be prepared to talk, and you got to be prepared to say, “Hang on a sec. That’s not… we want to talk about when we do the tracheostomy and not have the negativity all over again. We’ve been there before.”
Julie: That’s all I’ll say. We’ve already been down this road of negativity before. I’m here mainly to find out about the tracheostomy; when we’re going to do that. Do I ask about complications with the tracheostomy? I’m kind of curious going forward, too, because I feel like if we transfer her after the tracheostomy, the bigger hospitals are going to kick her to the LTAC centres a lot faster because they’re full. This is smaller hospital and they told me we’ll start sending out referrals for LTAC centres. She goes, “But it’ll be weeks before we hear back,” and I said well then where does my mom go while that’s happening? And she’s like, “Well, she’ll be here.” She’s like once we get responses back that there are any available near your family… she goes, “That’s when it’s going to get really tough.” And she goes, “And not very possible.” She goes, “Because a lot of the LTAC centres don’t take Medicaid.” And she goes, “And they’re all very full.”
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Patrik: Okay. Okay. Look. Who else is going to be there? Do you have anybody going there with you?
Julie: Yeah. My fiancee is going and my aunt and my uncle are going to go. My mom’s brother and sister.
Patrik: Okay. So, at least you got other people there, but you need to be prepared to talk and I would also… there’s two things. I would bring up the arterial line again. I mean this is absolutely ridiculous in my mind. Here is another thought, Julie. So, one of the reasons they might have not been able to do the surgery is simply because she had the blood clot, they would have increased the clexane or whatever or the heparin, whatever she was getting. And that might stopped them from performing the tracheostomy. Okay? But I would hope that they would have communicated that to you.
Julie: They said it’s only because of the suppressors. They said the only reason, because I’ve asked them every single day why have they not done the surgery, and they keep saying suppressors, suppressors, suppressors. That the surgeons won’t work on her until she’s completely off suppressors and stable. And so, I know today’s day two. And so now, I was hoping the meeting is just about that and kind of going forward with the tracheostomy in her neck and letting us ask all kinds of questions.
Patrik: Yeah. And look, I agree. And if she wasn’t 20 to 40 of the norepinephrine, I agree that it probably would’ve been too risky. Right? But now that she’s off, they need to move forward. But you’re concerned that they’re going to go in the other direction. It’s valid. However, if they were to go in the other direction, the surgeons probably wouldn’t need to be in the meeting. You know? The surgeons are just… so, how often…
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Julie: Dr. Smith wants them.
Patrik: Right. Right.
Julie: How often what?
Patrik: How often have you seen your mom since we last spoke? Are you there every day?
Julie: My fiancee goes every day, and then I’m there like every other or every third day.
Patrik: Okay. Any other family?
Julie: But my fiancee goes every day. My aunt sometimes goes down there. She probably goes twice a week and my uncle probably goes one time a week.
Patrik: Right. Right. So, there’s nobody really there who’s there all the time.
Julie: There’s at least somebody going in there once a day.
Patrik: Yeah, yeah. Sure, but not like sitting at the bedside 24 hours a day.
Julie: No. No. I wish I could, but I have to work and my daughter, I have my seven year old.
Patrik: Yeah. Yeah. No, I understand. So from that perspective, if you had your mom somewhere else closer to home, chances that you or other family members could be there every day would be higher.
Julie: Oh, we would be there every day. Yes. Every day and I’d go like twice at night and in the day time. For sure.
Patrik: Yeah. So, you see Julie. Last week, when we last spoke, I would have… if he had said, “Oh, it takes another week to do the tracheostomy,” I would have said, “Well, skip that and go somewhere else.” Right? Because that’s not…
Julie: Yeah, but they never gave me a time.
Patrik: Yeah, yeah. Of course.
Julie: They said we’re going to try to get her off of suppressors every day.
Patrik: Sure. I understand. I understand, but I just had a look through my records. It was last Thursday when we spoke.
Julie: Yes, it was. Yeah.
Patrik: Right. So, it’s very disappointing that nothing has happened in the mean time. If anything, it sounds like she’s gone backwards with back and forth on the vasopressors. If she’s off now, they need to do it and they need to do it fast. Right?
Julie: Should I? I’ve asked that a lot. When is the surgery? We need to get it going now. So every time they say, “Oh, the surgery’s risky,” I’m going to be like it’s getting riskier every day. Let’s get the surgery going A-S-A-P.
Patrik: Absolutely. Every day is a waste of time, and it’s putting your mom in a worse position. You know?
Julie: Yeah. Do you think there’s still a chance? I mean there’s always a chance, because they won’t even say that my mom could eventually go back and talk again and stuff. I mean…
Patrik: That to me is too far out. Yes. There is a chance, but I’m not even thinking about that at the moment, because she needs to have the tracheostomy, you know? It’s not even… it’s too far out. So, the other thing that I’m wondering is will they tell you that they want do to tracheostomy, want to take her off sedation, and then send her to LTAC. So, that could be another reason why they want to meet. So, if they did that, again, your response to that needs to be that you wanted to have her closer to home first in another ICU. Okay? And the reason to-
The 1:1 consulting session will continue in next week’s episode.
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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
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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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