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
Our Daughter is with a Tracheostomy in ICU. How Can We Become the Best Advocate for Her?
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. Tess’s daughter is a long-term ventilated patient with a DNR status. Tess is asking how can she challenge the ICU team to remove the DNR status of her daughter.
How Can I Challenge the ICU Team to Remove the DNR (Do Not Resuscitate) Status of My Ventilated Daughter?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tess/Romeo here.”
Patrik: I could not agree more with you, Tess. I could not agree more with you.
Tess: And that’s what I’m genuinely concerned about, especially given she’s very attentive to me. She’s very attentive to my eyes.
Patrik: Yeah, I have the same concerns there, Tess. I have the very same concerns there. The only way at the moment forward is to keep challenging it. And I’ve just sent you in Skype more information, I shared this with you before but I’ll send it to you again now, just how to access medical records and how to deal with a DNR (Do Not Resuscitate). Just because it’s difficult, you need to keep challenging it, there’s no other way.
Tess: But the problem is if I challenge it, it’s going to piss them off and it’s going to make them basically go for guardianship, isn’t it? I have to do it on the fly, don’t I?
Patrik: You have to do it on the fly but that’s why I said last time you need to get guardianship, so that these issues don’t come up in the first place, so you don’t need to tiptoe around.
Tess: Yeah, exactly. Okay. So you’re saying try to keep an even keel with them-
Patrik: For now.
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Tess: While simultaneously going for the guardianship?
Patrik: You need guardianship, you need guardianship. The worst thing that can happen besides the clinical is them grabbing guardianship. That is the worst thing that can happen, they will make decisions over your daughter and you will have no input whatsoever.
Tess: Well, they’re doing that anyway.
Patrik: Yes, they are doing it at the moment but you are also to a degree on eggshells at the moment because you don’t want to upset them. It’s easier for you to upset them once you have guardianship, you don’t need to walk on eggshells. But by the same token, Tess, I believe it’s now coming to a point where walking on eggshells is not doing anyone any favors anymore.
Tess: No. Well, I just feel that there’s discrepancies going on, especially if they’re going to say that the reason why she is in poor health and her lung… I haven’t been able to see the scan, I don’t know the truth or otherwise of that. I don’t even know if Sarah is as brain damaged as they potentially claim her to be.
Patrik: Exactly, exactly. Which is why I’m saying you need access to the medical records and that is a right, not a privilege.
Tess: So if I write to them and reiterate that the DNR (Do Not Resuscitate)… Because they never answered me back in black and white, they never answered that message other than saying, “Oh well…” A meeting was basically the answer. And then what they said in the meeting, I suppose it would be deemed in a court of law as a verbal rebuttal but at the same time, they haven’t actually in black and white when it comes to that to even mentioning my email.
Patrik: Right. Right. Look, I think-
Tess: They’ve backtracked, they have backtracked, they’ve stepped back. I think that email actually put them in their place to an extent.
Patrik: Tess, they will backtrack if you keep pushing. They will backtrack if you keep pushing, but it’ll be easier for you to push if you are the legal guardian.
Tess: Okay. So what comes first, reminding them about the DNR and also about my thinking that it’s completely wrong that they stand in the way of her getting ICU treatment at the same time simultaneously going for guardianship? Or I hold off on reiterating what was already the stance that I wrote in the email and just go for guardianship?
Patrik: Right, I think you need to do both. I don’t think you have a lot of time for either, I do believe you need to make your voice heard, whether you’ve got guardianship or not, but you need to simultaneously get guardianship.
Tess: Okay. Okay. That’s what I’ll get onto tomorrow morning. Okay, Patrik. I think the cannula matter… Oh yeah, also, apparently her loss of weight occurred because of the whole matter of taking her off her feed on two occasions when they were umming and ahing about whether she was going to go to theatre and in the end, they actually did it at the bedside in the ICU anyway.
Patrik: Right.
Tess: In very quick order.
Patrik: Right.
Tess: And there was apparently no secretions, then there was no secretions found on the report and then there were secretions again. So there’s a question on that part.
Patrik: Right.
Tess: Back to the ICU. So I’m getting mixed messages, Patrik.
Patrik: Right.
Tess: Yeah, to an extent. Not completely but to an extent. And I can understand it’s extremely stressful for these people, things can be misquoted or potentially mistakes made. But at the same time, when somebody’s life’s on the line, it shouldn’t be this way, should it?
Patrik: No, it definitely shouldn’t, definitely shouldn’t.
Tess: Yeah. And so every time the phone rings, I don’t know whether it’s them saying that Sarah’s gone through another episode, it’s just really scary at the moment.
Patrik: Right.
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Tess: She’s on feeding. They upped her feed to 69 for 20 hours, and so she’s on a better form of nutrition which has helped her actually… I’ve spoke to the dietician about it, I spoke to the dietician. And also, just generally, I know there’s a thing called sodium oxybate, which apparently-
Patrik: Sodium what? Sodium what?
Tess: Oxybate, O-X-Y-B-A-T-E. Which has been used for this rare form of the Lance-Adams syndrome, which is basically a consequence of hypoxic brain injury, jerking and everything and the twitching. And I’ve actually seen the results with my own eyes on YouTube, where they’ve actually applied this with the help of a bit of 5-HTP (5-Hydroxytryptophan), that’s it. So it’s markedly reduced those in very short order, within about an hour.
Patrik: Right.
Tess: And they’ve got her on this sodium valproate still. And when I was reading up on that, on the sodium valproate it says quite clearly that you’ve got to look very, very carefully and the clinicians have to make sure that the valproate doesn’t cause myelotoxicity. Bear with me, it says, “In reported case of Lance-Adams syndrome, it’s generally been within the first six months of treatment and may be preceded by nonspecific symptoms such as malaise, weakness, which is very weak, and lethargy,” so I haven’t seen those. “Anorexia,” she’s incredibly thin, “nausea, vomiting and a loss of seizure control.” Now, it could either be emerging from a minimally conscious state and she’s becoming more aware and she’s obviously distressed about it or it could be potentially a loss of seizure control, I don’t know.
Tess: Clinicians should be cognizant of the adverse reaction when prescribing sodium valproate for patients with diabetes,” and she has diabetes. And they have found that her diabetes is actually off level quite a lot at the moment. In the past three days it’s been going up and down but the last time I was told it was at 20 and that’s why it’s really out of whack. So with a racing heart, with that, it has a great effect to people. I don’t think she’s got an infection otherwise, unless the hypoxic brain injury could potentially affect her ability to… I think it’s the thyroid that regulates temperature, doesn’t it? Yeah.
Patrik: Thyroid and the brain, the brain.
Tess: Yeah, yeah. But she’s gone from being really, really good, in a good position, to ever since she started in that hospital, being really unstable.
Patrik: Right.
Tess: Up and down, up and down. And they put it down with they’re not making the mistake of that again. So really, in certain states, that’s not right, isn’t it? And it should be challenged just on that basically.
Patrik: Oh, it should be challenged just on that. I think unfortunately now is the time where I believe you need to push harder.
Tess: Okay. Right. Well, I’ve got no choice, Sarah’s life is on the line once again and I’m not quitting, she’s going to make it through but I’m going to do the best I can in each aspect and see if I can get guardianship as quickly as possible.
Patrik: I think so, I think so.
Tess: Yeah. And that will enable me to do what, see the medical records, “Show me the medical records”?
Patrik: No, you should have any of that now anyway. I’ll tell you what it does enable you, it does enable you to make certain decisions, it does enable you to challenge more, right? Because as I said, the worst thing that can happen is if there is ongoing dispute and you’re not the legal guardian, the hospital might do a grab for that guardianship and then it’ll be very difficult for you to make any decisions at all. But again, please ask your family lawyer about what it exactly enables you. Again, that is not my area of expertise.
Tess: Okay, okay. No, thank you for that, Patrik, I think that’s about it.
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Patrik: It’s a pleasure. Keep the pressure on, keep repeating what you want. I know it’s tedious but repetition is the mother of all skills and they need to understand you are serious about this. Because most of the time they are also thinking you’re not serious about this because most families give up at the first sign of resistance and they know that. They know that most families give up at the first sign of resistance.
Tess: But I do want her to get rehabilitation, yeah? I want her to get that chance so that she can actually have an independent existence in the future instead of being fobbed off and then in all of this whirlwind of to-ing and fro-ing and pushing and pulling, she doesn’t get what she needs.
Patrik: I agree.
Tess: That’s what I’m concerned about.
Patrik: I agree with you.
Tess: And they’ve got the ability and the means to do it there, they’ve got that.
Patrik: Yeah, I agree with you. Have I given you the number of the person I was talking to before?
Tess: You haven’t actually but I remember you mentioning him to me.
Patrik: I think you may want to talk to him at some point, because if she’s not getting much better, you might want to start talking about taking her home.
Tess: Okay.
Patrik: Is that something you have considered at all, taking her home?
Tess: I certainly don’t want her to be in a no man’s land and basically being experimented on without any real promise for a better future.
Patrik: Right.
Tess: I would like her to come home and I know that obviously that would be, in its own way, an extensively involved and complicated process but yeah, I don’t want her to die in somebody else’s home.
Patrik: Right, right. It might be worth talking to him. What I’ll do is I’ve done an interview with him, I’ll send you a link to the interview, maybe have a listen.
Tess: Okay.
Patrik: And he took his mom home from ICU and she’s now at home and I don’t think anybody could be happier, but he’s been where you are.
Tess: Okay. Thank you very much. That was very helpful.
Patrik: I’ll send that to you in Skype.
Tess: Okay.
Patrik: And then have a listen to what he says on the interview and then if you want to reach out to him, I can set you up with him.
Tess: Okay, okay, thank you. Yeah, so what should I do? Just get back to you once… I trust your opinion, Patrik on this, if it’s a good idea that I will talk to him, then don’t hesitate to give me the details.
Patrik: And Tess, I know how frustrating this is, I can completely understand. Now you’ve got to look for guardianship, you’ve got to keep repeating yourself with what you want, I understand how difficult and frustrating this is, I totally get it. But unfortunately, that’s the only way I’ve learned dealing with those bureaucrats and people that work in the system.
Tess: Well, apparently they’re going to do that and they took complete blood count samples and the clinic didn’t come back today, which was expected, and it’s going to come back tomorrow, giving them more time to communicate with one another of what their next move on me is.
Patrik: Right.
Tess: So potentially it’s going to be when we hear potentially.
Patrik: Right.
Tess: Tomorrow morning.
Patrik: Right, right.
Tess: To give us an update, yeah?
Patrik: Right.
Tess: All on a day where I haven’t actually got ability to have a call with her, nor an appointment to go and see her.
Patrik: Right.
Tess: And the only thing is this man’s an absolute expert in palliative care and the whole law behind it, the director, yeah? That’s another aspect to all of this.
Patrik: Yeah, I hear you.
Tess: You know, it’s actually what he does, yeah?
Patrik: I hear you. It’s an uphill-
Tess: And at the same time, it’s within his remit to either give Sarah a chance in future or not.
Patrik: Yeah, I hear you.
Tess: Yeah, it’s tricky. It’s a very tricky situation.
Patrik: It is.
Tess: All right, Patrik.
Patrik: All right. It’s a pleasure, try and get some sleep.
Tess: I will do, and I’m very grateful for you having taken the time to speak to me, thank you.
Patrik: It’s a pleasure. Take care for now. Take care for now, thank you.
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Tess: Okay, Patrik.
Patrik: Thank you.
Tess: All the best, thank you very much.
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Patrik: Thank you, bye. Bye.
Tess: Thank you, yeah.
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
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- 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
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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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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