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
How Long Before My Daughter Recovers from An Induced Coma and Cardiac Arrest 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 Tess, as part of my 1:1 consulting and advocacy service! Tess’s daughter is on a ventilator with a
tracheostomy and the ICU team issued her a DNR (Do Not Resuscitate) status. Tess is asking how can she revoke it.
The ICU Team Issued a DNR Status to My Ventilated Daughter with a Tracheostomy. How Can I Revoke It? Help!
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tess/Romeo here.”
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Patrik: Hi,
Tess.
Tess: Hi, Patrik. I’m just concerned because I saw DNR on Sarah’s chart.
Patrik: Right. Right, okay. Have you challenged
that?
Tess: No, I read the notes on the DNR (Do Not Resuscitate), and as far as it looks, I won’t be able to challenge that anyway.
Patrik: Well, again, you should never ask their permission to do anything, Tess. You really need to change your… If you think you can’t, you won’t. You should never-
Tess: In one of the meetings… Excuse me, Patrik, I was told in one of the meetings that the reason why the DNR was there because they believe that, in their opinion, it would be cruel for her to be resuscitated. And that was prior to her having the tracheostomy.
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Patrik: No, no, I get that. And I’ve heard it hundreds of hundreds of times. I get that. That should not stop you from challenging it if you don’t want it.
Tess: I don’t want it. I never wanted it.
Patrik: Yeah. Then, you need to challenge it.
Tess: Okay. Well, I should be able to challenge it now, really.
Patrik: Absolutely, absolutely. I would say something about this to her. But really, forget about what they’re telling you. You will need to start
asking for what you want. It doesn’t matter what they say.
Tess: Yeah, access to medical records. Access to Sarah’s medical records. I’m not asking for anything prior because she wasn’t attending a doctor. She didn’t have a doctor. No, for many years. And also, the DNR. I don’t want the DNR in place.
Patrik: Yeah, and then we should be saying so. The answer will be that it’s a medical decision, but that again, it should not stop us from challenging. And they need to know what you want.
Tess: Yes. Well, the DNR has been there throughout the time
that she’s been in the hospital, and I believe it was when she was at the previous hospital. It’s been all the way along. And I think it’s incredibly disturbing to see that-
Patrik: Very disturbing.
Tess: … just on a white board by Sarah, and I don’t know what I can do to get rid of it.
Patrik: Yeah. The first step that we need to do is mentioning it, that you’re not happy about that. And my argument around that is she’s 28. It
shouldn’t be whether she’s 28 or 35, doesn’t matter. Whether she’s 90. This is about patient choice.
Tess: Yes, and certainly she wouldn’t want it in place.
Patrik: Right, right, that’s very important. That is very important.
Tess: Yes. Now, coming back to the whole matter of, I was going to say, I just say, “Good afternoon, doctor and thank you so much for taking the call. And appreciate your time. Patrik, our family
friend, Sarah’s advocate, is with us, and he has had 20 years ICU experience,” so something along those lines to introduce you on that basis.
Patrik: That’s right. Yeah, no, absolutely. And she might say something along the lines that she doesn’t want to answer questions to me, and then your response to that needs
to be that you’re entitled to have on the call whoever you’d like.
Tess: Yes.
Patrik: Another response, if she does that, needs to be, what does she
have to hide?
Tess: Yeah, and try to ask things. Yes, that’s right.
Patrik: You can’t be intimidated by them. She might try and shut this down,
but you can’t be intimidated by them. You just can’t.
Tess: Well, I will stand strong, and we will try our best without alienating because Sarah’s life is in her hands.
Patrik: Yeah, no, I get that. I get that. And that is probably my next question. How far do you want me to push? Do you want me to shoot hard if need be? Do you want me to stay very diplomatic? I’ll be guided by you. I can do either/or.
Tess: How hard do we wish
for Patrik to push on our behalf? Do we wish her to be diplomatic? Do we wish her to be strong and assertive? Whatever the situation calls for.
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Patrik: Right.
Tess: Going by how you sound off of me, you can actually gauge how I am within this situation.
Patrik: Yes. Yes.
Tess: And then sort of bounce off of me as best we can between ourselves, yes?
Patrik: Yes. Look, and that’s probably what it comes down to, as well. I need to get this feel for this lady.
Tess: Yes, of course. And, do you think it’s appropriate, or do you want me to just basically try and get through? I might get stonewalled. She might not be
available.
Patrik: Sure.
Tess: And, I’m assuming that you’ll keep quiet until I actually introduce you, yeah?
Patrik: Yes. I will keep quiet until you introduce me. Absolutely.
Tess: Okay. And it may not indeed be even the doctor who’s doing the update. Who knows? I’ve
been rolled quite considerably on three occasions since I actually spoke to say that I would be ringing, and I was given that number.
Patrik: Right. Fair enough. Yep.
Tess: If it was an emergency, it would come from the ward, surely. If Sarah was in danger. It must be to do it this…
Patrik: If there was an emergency, they would also leave a message for you.
Tess: No, I have no way of doing that on my phone.
Patrik: Oh, I see. I see.
Tess: And I don’t have a mobile, so there’s no way of reaching that.
Patrik: I comment on that then.
Tess: No. It’s actually… see. Okay. Can’t because if I try to seek and find out, then it takes you out of the picture.
Patrik: Yeah, yeah. No, no. For sure. For sure. Yeah. Okay. And this lady that we’re talking to, have you met her in person?
Tess: Yes, I have. On two occasions, and I’ll say on her passing me as I explained yesterday, but without actually speaking to me. The point is, she’s the doctor. So, she’s in charge of the sodium valproate decision, and taking Sarah off of the phenytoin, and trying to control the myoclonic twitching. I think we should just play it by
ear, and I will do the best that I can in the given situation. And I trust that you’ll be able to be diplomatic and obviously do the best you can.
Patrik: Yeah.
Tess: Yes?
Patrik: Look, as I said, there are some times where diplomacy is no longer an option but given that we’re going to talk to this woman for the very first time, I’m not wanting to burn your bridges, of course. But sometimes there are situations where they can be so
stubborn, right?
Tess: Yes.
Patrik: Let’s see how it goes. Let’s see how it goes.
Tess: Okay. Shall I give you the number?
Patrik: Yeah, yeah. When you say you’ve got her number, is that the mobile number? Is it…
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Tess: No, it’s actually the office number.
Patrik: Right. Okay.
Tess: The doctor’s office.
Patrik: Yep. Okay. Just-
Tess: Within the ward.
Patrik: Yeah, yeah. Okay.
All right. I’ll dial her in.
Tess: And I’m not going to mention that I’ve got her calls this afternoon, okay? I’m not aware of them at the moment.
Patrik: No, no, no. I’ll be guided by you.
Tess: Okay, Patrik.
Patrik: All right. I’ll
dial her in. And then you need to do the talking when they pick up.
Tess: Yes, of course.
Patrik: Thank
you.
Patrik: No one picking up. It’s not going to an answering machine either.
Tess: Okay. Well… Hm. What do you suggest?
Patrik: Do you want to call the ward back and find out why they tried to call you?
Tess: It wasn’t a ward. It was probably the reception.
Patrik: Right.
Tess: Okay? Yes, I will do.
Patrik: Do you want me to stay on the phone while you call them, or…
Tess: Am I able to do that? Or are you going to call?
Patrik: I’m going to call.
Tess: Okay, that’s fine. Yes.
Patrik: Okay. All right.
Tess: Thank you.
Patrik: Just if you
give me their number again.
Tess: Yes.
Patrik: Okay.
Patrik: Could you hear-
Tess: All right.
Patrik: Could you hear all of that?
Tess: Yes, I could, clearly.
Patrik: Right, right, right. So,
I don’t know…
Tess: She’s gone and tried to ring through a non-returnable call number. Yeah?
Patrik: Yep. Sounds like it.
Tess: Yep. And that is actually not reception. Now, I do have the critical care unit reception number.
Patrik: Right. Let’s try that.
Tess: Should we try the office again?
Patrik: Yep, yeah, we can certainly do that. Yep.
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Tess: Okay.
Patrik: If you can give me their number again, please.
Tess: Yes, of course.
Patrik: Just bear with
me.
Patrik: It’s ringing out.
Tess: All right. Okay. So, no answer there. The next other… Yeah. Ring the ward. Find out how Sarah is, I
suppose.
Patrik: Yep. Okay. If you can give me their number.
Tess: Yes. It is, bear with me… On a piece of paper. Yeah. That’s it.
Brilliant.
Patrik: It’s ringing out, Tess.
Tess: Yeah. Wow. Interesting. Okay. So, we’re getting blanked through different directions. I’ve got
an appointment with her at 5:00, yes?
Patrik: Mm-hmm.
Tess: Supposed to be for an hour. And, what I think I should do is now ring the critical care
unit reception desk and find out what’s going on. What do you reckon?
Patrik: Yeah, absolutely.
Tess:
Okay.
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Patrik: Hang on. Hang on. I’ll dial it now.
Tess: Okay
Anton: Hello, critical care reception, Anton speaking.
Tess: Hello?
The 1:1 consulting session will continue in next week’s episode.
