.
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”n and in last week’s episode I answered another question from our readers and the question was
Is it Safe for My Sister with a Tracheostomy if We Transfer her from ICU to LTAC?
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 Marsha, as part of my 1:1 consulting and advocacy service! Marsha’s sister is on a ventilator and with a
tracheostomy. Marsha is asking if she has the right to look at her sister’s medical records while she is in the ICU.
My Sister is on a Ventilator with a Tracheostomy in ICU & Do I Have the Right to Look at her Medical Records?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Marsha here.”
Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Patrik: Intensive Care Hotline, Patrik speaking. How can I help?
Marsha: This is Marsha again. I want to tell you about my sister’s situation in the hospital because they want to give her propofol.
Patrik: And what did you tell them?
Marsha: I told them that she’s not going to survive that again. She’s 113 pounds, if you give her that propofol, she’s not going to survive it. Her heart is damaged from that.
Marsha: So evening time, I was there, I told the nurse, “She’s not going to survive being intubated. Can they put the tracheostomy tube back in?”
Marsha: And they said they won’t because she’s doing fine.
RECOMMENDED:
Marsha: I said, “I just want to tell you she was capped a month ago on nasal cannula, doing fine, and she ended up back on the ventilator.”
Marsha: But they’re like, “Well, I guess, we will tell them to put the tracheostomy tube back in if she really needs to go. We’ll try different things if she starts to desaturate. We’ll try high volume oxygen,” but anyhow, that’s during the day.
Marsha: I tell the doctor again, “Doc, you need to lower the pain meds.”
Marsha: They really don’t listen to me, they think I’m an idiot, which I know I sound like an idiot-
Patrik: No, no.
Marsha: … I may even be an idiot, Patrik, but I know my sister, I’ve been doing it for six months.
Patrik: Yes.
Marsha: But wait, it gets better.
Patrik: Okay.
Marsha: I go there tonight to see her, because between you and I, I’m trying to avoid the social worker during the day. So I go when I know she’s gone. And she’s not in the bed.
Marsha: And I’m like, “Where’s my sister?”
Marsha: “Oh, we had to take her down to a CAT (computed tomography) scan. She jumped out of the bed and she pulled her feeding tube out.”
Patrik: Oh.
Marsha: I told the nurse, “I told you two or three nights ago this was going to happen. No one listens to me.”
Marsha: “Well, she’s in pain,” they start with that.
Patrik: Feeding tube…
Marsha: Now, she’s on a one-to-one.
Patrik: Right. Feeding tube is the PEG. She’s got a PEG (percutaneous endoscopic gastrostomy) tube?
Marsha: Yeah, a PEG, that’s what I call it. I’m the layman, so that’s why I call it a feeding tube. I’m sorry, I know my husband corrects me.
Marsha: He’s like, “That’s not a feeding tube.”
Patrik: Yeah.
Marsha: He said, “It’s a form of a feeding tube but it’s not.”
Patrik: Yeah, no, I just need you to clarify that she’s had a PEG. Okay, yeah, carry on.
Marsha: So now, she’s in the bed, she’s all sullen.
Marsha: I yelled at her a little bit, because I was like, “Liza, I told you to stop with the pain medication. What are you doing?”
Marsha: She said, “I don’t know,” she doesn’t know what she’s doing.
Marsha: She’s a great lady, I love her, but sometimes I get mad at her. She’s driving me crazy.
Marsha: I told them, “She’s going to drive you crazy all night and that’s what you get for not listening to me.”
Marsha: But I don’t know what to do now. They’re talking about discharge.
Marsha: I said, “You ain’t. She ain’t going anywhere. That social worker can go jump off a bridge.”
Patrik: Right.
Marsha: But what’s my move, Patrik?
Patrik: Can I ask, what have they done to replace the PEG tube? Have they done anything?
Marsha: Yeah, they put it back in, and now they’re going to do a test to see if it is actually good enough to use.
Patrik: Right, okay. Look, Marsha, I’ll give you my thoughts just on what you’ve shared so far. It could be a blessing in disguise if they stopped all the crazy pain medication and sedation.
Marsha: I have to stop you there; the nurse won’t do it.
Patrik: Yeah.
Suggested Links:
Marsha: I told him today, I said, “You’ve got to stop.”
Marsha: He goes, “I won’t. I can’t. It’s an order and if she keeps complaining of pain, we have to control the pain.”
Marsha: I’m like, “You have to do it a different way.”
Marsha: I don’t know if this is true, I said, “The IV Tylenol works, but you people don’t want to give it to her, because you can’t give her IV medication, and discharge her. So I’d rather you put her at risk when the IV Tylenol always works for her with Motrin. It worked fine.”
Patrik: Yeah.
Marsha: I mean, she’d be in a little pain, but they’re giving her Dilaudid. She can never take that, she gets crazy.
Patrik: No.
Marsha: This is the third time that she strips off her clothes, and jumps out of bed when she’s on that stuff. She’s like a maniac on it.
Patrik: Do you have a full list of medications she’s on?
Marsha: No.
Patrik: I think, can you get that? I’m sure you can.
Marsha: Yeah, how do I get it? These doctors don’t even talk to me.
Patrik: No, you are the power of attorney, aren’t you?
Marsha: I’m her health care proxy and her next of kin.
Patrik: Yeah.
Marsha: Because her oldest son doesn’t want to do it.
Patrik: Yeah, no, I get it.
Marsha: Yeah.
Patrik: Okay. You have every right to access medical records. I think it’s important to get a list of medications. And I mean, I agree with you that she should not have Dilaudid. Dilaudid is for someone after surgery with major pain, but she’s not in a position like that. It sounds like it’s just convenient for them.
Marsha: These doctors, Patrik, are crazy, They just like, they’re crazy.
Marsha: It’s just like, “Okay, you’re in pain. Here.”
Marsha: I mean, I wish my life was that easy. I’m broke, give me some money. It’s not that simple. I mean, come on. Do you know what I mean? If I say something, it’s true. I mean, they don’t think of this. And I’m warning them, they’re looking at me like I’m crazy.
Marsha: Like, “She’s really in pain, you know?”
Marsha: I was like, “I know, but she’s not going to die from the pain.”
Patrik: No, she’s not. She’s not. So how long ago was that, when she removed the PEG tube and tracheostomy tube?
Marsha: She removed the tracheostomy tube this afternoon and she removed the feeding tube. And she fell out of the bed this evening, around 4:00, 5:00 o’clock.
Patrik: Wow, so all within a few hours?
Marsha: I just saw her. Yeah, and now she’s on a one-to-one, so she’s going to drive me crazy all night. And you keep giving that pain medication, she’s not going to stop.
Patrik: Yeah.
Marsha: But I’m afraid that she’s going to get exhausted and end up back on a ventilator.
Patrik: Yeah, no, there is that risk for sure. There is that risk. But by the same token, it could also be a blessing in disguise. It could make things worse, it could make things better.
Marsha: To my surprise, her oxygen saturation was higher than it was last night, she’s on a nasal cannula.
Marsha: I was like, “Wow.”
Patrik: Yeah.
Marsha: She’s going on it for a couple of weeks.
Patrik: Yeah, that’s what I mean. It could potentially be a blessing in disguise, but it’s too early to say that.
Marsha: Right.
Patrik: So coming back to the social worker. If she can maintain that, Marsha, it’ll be so much easier for you to take her home. So much easier.
Marsha: And you would suggest that I should take her home now, for real?
Patrik: Well, no, I wouldn’t, but it’s also easier now to get her to a rehab. So okay, getting her to rehab with a tracheostomy tube is difficult. Getting into rehab without a tracheostomy tube is so much easier.
Marsha: Right.
Patrik: Right, so that’s what I’m saying. This could be a blessing in disguise.
Marsha: But her pulse rate was 120 and I told them. That’s another thing, wait until you start pumping her down on the medication, her pulse rate’s even going to go up higher, because the medication probably suppresses her pulse rate a little bit, no?
Patrik: Right, I hear you. I hear you.
Recommended:
Marsha: Is that true?
Patrik: Look, having a high pulse rate is not good. It’s not good.
Marsha: Right.
Patrik: And that could be simply from pain.
Marsha: No, I know that, but her pain is only going to get worse, because I want them to take her off the pain meds. So if that’s the case, her pain is going to get worse. And I feel like the pain meds probably even keep her pulse rate down a little bit, suppress it a little bit, no?
Patrik: Yeah, potentially.
Marsha: Yeah, so her pulse rate’s at 120 with the pain medication. I’m worried about how high it can possibly go.
Patrik: Look, if it doesn’t go above 130, I would say 120 is pretty high, but if it’s irregular… The most important thing is, is it regular?
Marsha: Yeah, well, it’s just a little high, I don’t know, today. Yesterday, it was a little lower.
Patrik: Right.
Marsha: They’re giving her stuff to treat that.
Patrik: Right, sure. Look, I absolutely share your concerns, but hopefully, maybe, it works out well for her, but we wouldn’t know at the moment.
Marsha: No, I understand.
Patrik: We wouldn’t know.
Marsha: I just want to know…
Patrik: Where is she?
Marsha: What do you mean?
Patrik: The reason I’m asking where is she, she’s in a cardiac unit, isn’t she?
Marsha: Yeah, she is.
Patrik: Is that the cardiac ICU?
Marsha: I don’t know if they call it a cardiac ICU.
Patrik: Right.
Marsha: But it’s a cardiac floor, they do cardiac procedures there. People do come in on ventilators, I’ve seen, from cardiac procedures. And then, they’re there to actually get them off. But they tell me it’s the only floor that they could really do that. They put people with ventilators there because there are enough ICU patients with ventilators. They put them there so they could properly treat them.
Patrik: Right, okay. Look, I think you really need to look at the medical records and find out what medications she’s on. And I wouldn’t worry too much about what the social worker says. And I can tell you, if she can stay off the tracheostomy tube, her destination will be
different from what the social worker has been proposing. Because if she stays off the tracheostomy tube, she can go pretty much to any rehab. Whereas, with the tracheostomy tube, she was only able to go to certain rehabs. If that makes sense.
Marsha: Right. No, it’s good that you mention that to me.
Patrik: Well yeah, because it only happened now.
Marsha: Should I send them an email, and say, “Listen, I’m letting you know, until my sister is weaned off that pain medication, until she is definitely stable, I’m not even talking about a rehab with you. She’s staying in that hospital.”
Patrik: Yeah, you could do that, or you could just ignore him. I’m not sure which one you should do. Is he trying to call you or just email you?
Marsha: No, he tries to call me. I send him a voice note because I don’t like talking to him. Because between you and me, Patrik, he’s condescending, and either he’s not smart, or he’s too smart, because he ignores some of the things I say. He doesn’t take care of it, he just moves on.
Patrik: Right.
Marsha: So I need to say, “Listen, these rehabs, do you think it can be what I wanted? I asked three questions of this rehab, I got one answer. And I asked one question of this rehab and I didn’t get an answer yet. You’re talking about me making a decision. Well, they never got back to me.”
Marsha: And then he just ignores it, then sends me an email, “You need to decide which rehab.”
Patrik: Right.
Marsha: Yeah, so he ignores it, so I don’t like talking to him. I’d rather just do it in writing, I just make it simple.
Patrik: Right, sure. Yeah, I’m just trying to think with the social worker. My experience is, Marsha, and I’m always pushing the boundaries because I know what’s on the other end, that they’re always good at pretending that they can do whatever they like. Nothing could be further from the truth. I mean, this is not a one-stop shop.
Marsha: Right, well, they’re always pretending that they can do what?
Patrik: They are always pretending that they can do whatever they like.
Marsha: Oh, okay.
Patrik: They’re very good at that.
Marsha: Yes.
Suggested Links:
Patrik: They’re very good at that. I’ll tell you when I would be concerned, I would be concerned if your health or your sister’s health goes off, they say, “We’re running out of arguments here, your sister needs to be out by such and such,” that’s when I would be worried.
Marsha: I called the case manager at least twice, he hasn’t called me back yet.
Patrik: Well, if they were in a hurry, I think they would’ve called you by now.
Marsha: Yeah, I don’t think they are.
Patrik: I don’t think, look, health insurances understand that when someone is in ICU, it often is not straightforward.
Marsha: Right. So you want me to get a list of pain medications to be sure of it?
Patrik: Absolutely.
Marsha: But I know it’s Roxycontin. Sometimes, they give her Roxycontin, sometimes Dilaudid. I don’t know what Roxycontin is. Oxycontin, or something.
Patrik: It’s probably a morphine-based, I haven’t heard of it, but contin is usually, just give me one second, I’ll tell you what it is. Just give me one second. It’s probably something like Oxycontin, hang on, Roxy.
Marsha: Yeah, they call it Roxy for short, I know.
Patrik: Hang on, hang on. Yeah, it’s oxycodone, like morphine.
Marsha: Yeah, so she’s getting that and Dilaudid.
Patrik: Yeah, that’s toxic.
Recommended:
Marsha: Yeah, and they’re asking her, “Which one you want?”
Marsha: Like a drug dealer, “Which one you want?”
Marsha: She said, “I’ll take the Roxycontin.”
Marsha: So I tell the nurse, “Let me talk to you outside. Nurse, you’ve got to get her off this stuff, she’s going to drive you crazy.”
RECOMMENDED:
Marsha: He said, “Well, she’s in pain. There’s nothing we can do. This is what they do.”
Marsha: I said, “Could you make a note that I’m requesting that? Can you call the doctor and call me back?”
Marsha: They don’t call me back, doctors don’t call me back.
The 1:1 consulting session will continue in next week’s episode
