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
Is It Possible for my Mom to be Weaned Off the Tracheostomy in the ICU?
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 Tom, as part of my 1:1 consulting and advocacy service! Tom’s mom is ventilated in ICU. Tom is asking what are the things they need to question during family meeting with the ICU doctor.
My Mom is in ICU with a Tracheostomy. What Are the Things That We Need To Question During Family Meeting With the ICU Doctor?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tom here.”
Ronald: I’m not understanding the words..
Patrik: Yeah, so me too. Yeah, it’s a very unlikely scenario, but I have seen that unlikely scenario. So let’s just say it comes to a point where, God forbid, I’m really talking about the worst case scenario, but let’s just say your wife is deteriorating again, and they want to start talking about end of life again, and they say, “Look, we should be withdrawing life support here,” and you say “No,” and then they say, “Oh, but you’re not the medical power of attorney,”
Patrik: So, then you might go and try and get that, but the hospital might also try and get it. Because the hospital might say, by you prolonging her life might not be in her best interest, because they might say she’s suffering, they might say that. So, I’m really pointing out the worst case scenario here, but I have seen it.
Ronald: Hmm, okay. I see. Understand. Got it. And no need to, we get it. You have any questions about that, dad? I know it’s hard for him because he doesn’t want my mom to feel like there’s something ill intended. I don’t think she would, but again, it’s like, it’s alarming that..
Patrik: Yeah.
Ronald: … we need to approach this legally. All right. Okay, thank you. What about, okay, now moving, well, I don’t know, I had some few more questions, but should we finish or continue with her chart? I mean, you’ve pointed out a lot of good details that we didn’t understand, so is there more in there that we should discuss now?
Patrik: Just a minute, just a second, I just need to look at my notes from when I had to look at the chart earlier. Yes-
Ronald: Okay.
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Patrik: … there is something else. It’s not super urgent, but I think it’s important for you to understand. Do you know, is she sleeping at night?
Ronald: Oh, good question. Yeah, you did ask us about it a lot and today I actually, well we started to ask her since we last spoke to you… Today’s Friday..Wednesday, you asked us and we were like, “Oh, we haven’t even been asking her that!” We’ve made that a routine now to ask her, and she’ll say “Yes,” or she’ll shrug her shoulders and say, “Done.” But then today the nurse said that she really didn’t sleep last night.
Ronald: So I asked the nurse about melatonin, giving her melatonin. And did you tell me about that? I don’t remember if it was in our conversation, or where I read it. Is that something you’d recommend?
Patrik: I would… I’ll tell you what I do recommend. I do recommend that she sleeps at night and I’ll tell you why, whether they can achieve that with melatonin, sure. I like, I have no problem with melatonin, because it’s a natural product.
Ronald: Okay.
Patrik: Okay? But I’ll tell you why this is so important, natural day and night rhythm. So she has been in a coma for many weeks. Her natural day and night rhythm is disturbed. Okay? Her getting back into a natural day and night rhythm is really important, and the reason for it is if she exercise during the day, like CPAP trials, mobilization, hopefully she’s tired at night. Right?
Patrik: And if she’s-
Ronald: Yeah.
Patrik: … tired at night, she sleeps at night, and then she’s rested for the day doing the cycles, the same cycle over and over again. Right? A lot of patients have a disturbed day and night rhythm. And it’s an obstacle to recovering. That they then… they’re awake at night and then they’re sleeping during the day. And if they’re sleeping during the day, that’s when all of the support is around, physical therapy, and then they’re missing out on that. You know?
Tom: Yeah. I remember you had mentioned it. Well, one of the things though, I did ask the nurse today, I said, “Have you guys, or can you ask the doctor if melatonin would help? Just to encourage and promote more of the night. And he actually said, “Oh yes, I hear great things about melatonin, I think that would be great.” And then I said, “Okay, well let me ask my mom if she wants that,” and when I went to go ask her, and she said, “No.”
Tom: And I said, “I remember you used to take it at home.”
Patrik: Good.
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Ronald: And then I said, “But I remember that from a couple of years ago.” And then she nodded her head, “Yes,” and then I said, “Do you still take it before you came to the hospital?”, and she said, “No.” And then I said, “Okay, but would you want to start taking it now to help you get into that rhythm? To help you sleep at night so you’re rested for your exercises?” And I’m totally framing it that way, and she said, “No.”
Ronald: And I said, “Okay, well so that’s fine, but I will ask you again later, okay?”
Patrik: Yeah. Look, if she sleeps at night, there’s no real issue. It’s just a case if she doesn’t sleep at night.
Ronald: Okay. So just some would be acceptable at this point.
Patrik: Yeah. Well-
Ronald: It doesn’t have to be a full night undisturbed sleep.
Patrik: … well, ideally, yes, but I mean, she won’t have an undisturbed sleep anyway, because the nurses would be washing her or turning her or doing all sorts of things.
Ronald: Oh yeah. Okay. All right. Got it. Good to understand when she needs encouragement. Are there any other things that you would recommend to promote that day and night rhythm, getting back into it?
Patrik: Is she in a room with natural daylight?
Ronald: Yes.
Patrik: Oh, that’s good. That’s good, okay.
Ronald: Not much, but thank goodness she does have a window, and she has a nice view of the trees. But like today, she really, she didn’t want it open. She didn’t while we were there during the day.
Patrik: Fair enough.
Ronald: Yeah. But we told her. I did say today because the nurse came and he goes, “Oh, it’s so dark!” And he goes, he just said really politely, “It would be really good for her to get natural sunlight, because she really needs her vitamin D,” and I said, “Oh, you’re so right.” I said, “You know, okay.” And I told her, I said, “Tomorrow when we get a chance,” I said, “We really need to turn those curtains all the way open. When as soon as we get here, okay?” I said, “I know it’s bright, but you need that natural,” and she just nodded her head saying “Yes.”
Ronald: So she agreed, but we really just have to cross things right now.
Patrik: Sure.
Ronald: I mean, she’s very cooperative, but she’s just very, you know, very sensitive like that… so sensitive right now.
Patrik: Of course.
Ronald: … I don’t know. A lot.
Patrik: Of course.
Ronald: But she seemed amenable to things that we’re suggesting, except the melatonin right now.
Patrik: Sure.
Ronald: But anyway, okay. So natural daylight to help her kind of see that psychologically, like, “Hey, it’s daytime.”
Patrik: Yeah, definitely.
Ronald: Do you think it will bother her if she wants to nap while we’re there?
Patrik: If she’s doing exercises during the day, and she needs a nap at lunchtime or, that’s fine. You know? It’s just-
Ronald: Okay. So we shouldn’t disturb her from it.
Patrik: No, it-
Ronald: Oh, okay
Patrik: … as long, again, if she needs that, as long as she sleeps at night, great. You know?
Ronald: Okay.
Patrik: ..means that if a nap doesn’t stop her from sleeping at night, let her have a nap.
Ronald: Okay. Good point. Okay. Got it. Thank you.
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Patrik: And those were the most important things that I had in terms of you needed to know about the heart attack, you needed to know about the IV filter, you needed to know about the gastrointestinal bleed. Right? And I think given that they’re mobilizing her every day, and given that they are doing the CPAP trials, I think that’s great.
Ronald: Okay. Wonderful. Okay, let me dive into then my questions about, well a couple things.
Patrik: Please.
Ronald: Regarding the things that you pointed out that we could, we should inquire about, do you suggest that we ask to speak directly to the doctors to get these answers, or pose them to the nurse and then let them bump us to the doctor? Or, how do we frame, like, we’re going to come tomorrow with all these new questions, which is fine, we know it’s in our rights. But any suggestions on how to approach it-
Patrik: Yeah-
Ronald: … in one shot?
Patrik: … yeah. When you go there, who do you… who do you see, who do you normally get updates from?
Ronald: The bedside nurse.
Patrik: Right, okay.
Ronald: The doctors were coming by more frequently, that’s why I’m saying this is because it’s noticeable but they’re not there right now. But also maybe because she’s on trial mode, and it’s kind of like… it’s been a little bit more straightforward the last couple of days? That’s maybe why they’re not swinging by as frequently?
Patrik: Yeah.
Ronald: But they would stop by previous, like before five days ago they were swinging by even for like a 15-minute chat with us. And they know that I took notes in there, that I’m really particular. I asked the doctor, “What time? Also, I need to get my laptop because you’re talking too fast and I need to write this down.”
Ronald: So they already know what I’m going to do what-
Patrik: Good.
Ronald: … I need to do to capture their response. So, but yeah we haven’t seen them the last five… yeah, five or six days, it’s been the bedside nurse.
Patrik: Okay. And do you think they are advocating for you?
Tom: To an extent. I didn’t even tell you. For questions, we’ll say, “We’ll get the tough questions for the doctor.” Yeah, but I will say this week, well, oh gosh-
Tom: … I don’t want to get, yeah, I don’t want to get too caught up in the details. Essentially we’re past it, but on Wednesday there was a nurse who actually, like, didn’t want to let us in during visiting hours because he said my mom wanted to sleep and didn’t want visitors.
Patrik: Right.
Tom: And it turned into this whole ordeal, and we were very upset and very concerned, and very troubled, and I asked to speak with the director, who came out promptly. And the nurse, they were on intercom while they were like, “She doesn’t want visitors, she’s tired,” and she did, she had to have the IVC (Inferior Vena Cava) filter that day, she had therapy, all kinds of therapy. She had a lot going on, so she did have a difficult day.
Tom: But when the doctor came on, I said, “This is absurd. How can we not go in, even if she’s sleeping? Well, even if he explained that we can’t go in there quietly, that we can’t see her, you know, my dad wanted to see her through the window.” And I said, “What did you ask her?” And they’re-
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Patrik: Yeah.
Tom: … “Well, do you want to sleep?” And I said, “Did you ask her if she wants to see her family?” “No, they didn’t.” And I said, “So you’re giving her ‘Yes’ or ‘No’ questions, she has very limited communication. I’m sure she didn’t know that when she said, ‘Yes, she wants to sleep, that she wouldn’t be allowed to see her family.”
Ronald: So, that nurse, I do think he was taking care of her, like I didn’t feel any disconnect from his service, like quality of care to her, but it was just very uncomfortable for us to ask him for updates that day and the next day. And so yesterday and today we have a different nurse, he’s been very approachable, very personable.
Ronald: I don’t know how to totally measure if they’re advocating for her though.
Patrik: Yeah, that, it’s a good question. I guess I would start with the nurses.
Ronald: Okay.
Patrik: And if you’re not getting anywhere with them, go to the doctors. That’s how I would approach it.
Ronald: Okay. And then regarding asking her to have like a cardiologist and then a specialist for her liver, I mean, is it possible that they say, “No, that’s not necessary”?
Patrik: Oh, that is probably the most likely response you’re going to get. But that shouldn’t-
Ronald: Oh.
Patrik: … that shouldn’t stop you from asking.
Ronald: Oh, okay. I see. Okay, good.
Patrik: I mean, the-
Ronald: Thank you for telling me that.
Patrik: … the thing is, the most likely situation was that they would ask you for LTAC, and you were denying that. And the most likely outcome for you asking for a specialist is probably a “No” to begin with, but it’s just like with anything, you need to keep asking.
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Patrik: Or, if they’re telling you, “Well, we don’t need a cardiologist because it was a minor heart attack,” or you know, it gets some answers. Dig deeper.
Tom: Okay. Okay, good, that helps. And then it helps me document it too. Because the second discharge planner who approached us on… what, Friday, dad? Or Saturday. Well anyway, Friday or Saturday, a second discharge planner posted and said, “We got a second referral regarding your mom. They want to send her,” and I felt so much more prepared, Patrik, I thank you for speaking with you earlier this week, that helped tremendously.
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Patrik: Mm.
Tom: And I did, I said, “Now she’s too vulnerable. She just had this, she’s barely coming off sedation, it’s not even out of her system, you guys aren’t even giving her a chance.” And I mean, I went on.
Patrik: Good.
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
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- 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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