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 Lara, as part of my 1:1 consulting and advocacy service! Lara’s mom is in ICU with a brain injury and Lara is asking why the ICU team pursues end-of-life decision for her mom even if her condition improved?
My Mom is in ICU with a Brain Injury. Is it Fair for My Mom to Have a DNR status Even If Her Condition Improved?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Lara here.”
Lara: Then on the first day I asked her if she could see me, and she said yeah.
Patrik: Oh, on the first day she said that?
Lara: Yeah.
Patrik: Your mom?
Lara: Yeah. She did not say but I was using the hand gestures, and she said, with the hand up she could see me.
Patrik: That’s great. It’s really important for you to and that’s what I’m here for real. It’s really important that you put this situation in perspective. If your mom on day one is responding to you, that’s a very good sign. Why is this important? Because I can tell you, I’ve seen patients with strokes over the years, and they’re not responding at all, they may not respond for weeks. So there is a loss, and most stroke cases that end up in ICU there will be a lot of them with the GCS of three, four or five. That’s not the case.
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Patrik: Right? And that is important to remind them of that. And as I said, I’ll record this call, but I will also send you an email when we come off this call just with a few dot points. That most stroke patients with the GCS of like three, four or five, that prognosis is poor, I agree with that. But not like your mother on day one, has responded to you straight away. That’s really positive. Have you read the CT report?
Lara: No. I haven’t.
Patrik: Right. I think that’s another thing on your to do list. You need to get the CT report.
Lara: Yeah.
Patrik: Because it’ll give you an indication of what they’re writing in there. How many CT scans has she had since admission?
Lara: Two.
Patrik: The last one was, yesterday?
Lara: Two days ago.
Patrik: And did they say whether there have been any changes compared to the first one?
Lara: They said no, there’s no changes.
Patrik: Okay. Right. Any seizures?
Lara: No.
Patrik: Have they done an EEG? Do you know what I mean by that?
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Lara: Yes. The ECG you mean?
Patrik: No, I mean-
Lara: What?
Patrik: The ECG would be for the heart. The EEG actually checks the brain waves, they haven’t done that?
Lara: I’m not sure right now.
Patrik: Okay, that’s fine. I’ll put it on the list to ask. And you’re 100% sure there are no seizures? They have not talked about that?
Lara: No seizures.
Patrik: That’s another good sign. Unfortunately, a lot of patients after stroke or any sort of brain injury end up with seizures. So that’s another good sign and you can use that again and I’ll put it in there, that a lot of patients with head or brain injuries and stroke end up with having seizures. so that’s another good sign. Having said that, there is a chance that they are giving her anti-seizure medication. There is a chance.
Lara: Okay. I’m sorry, I keep forgetting. So they’re giving her anti-blood pressure medication and they were giving her anti-seizure. I’m not sure if it’s still being given, so I can ask?
Patrik: All right. So they would have given her anti-blood pressure because a hemorrhagic stroke is often caused by high blood pressure. And as I said any head or brain injury can cause seizure. So the first few days they probably would have given us some Keppra or some Phenytoin or potentially both. The reality is they will wean that off at some point and or will at least reduce it. As I said, it’s a good sign that she hasn’t had any seizures. That’s a very good sign.
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Lara: And actually my sister is just there now because I still have the baby, so she just spoke to a nurse. And the nurse said she’s having antibiotics through the food tube now, instead of intravenous. And they’re not injecting meds anymore. It’ll all be crushed into pieces.
Patrik: That’s a pretty good sign, it means she seems they’re going away from the IV and they’re doing the drugs through the nasogastric tube. That’s not, not a bad thing at all
Lara: Oh, that’s a good thing. Okay.
Patrik: On that aspect. She’s moving forward, the less IV, the better.
Lara: Okay. And she just said that the doctors have a care plan but the nurse couldn’t say. So she’s just waiting for the doctor. I’m going to go and then speak to the doctors with her. That will be good. It’s been really helpful speaking to you.
Patrik: I’m very glad that I can help you. So, it’s not all doom and gloom and the other thing that’s important is most stroke patients, again, can’t maintain their air wave. They can’t cough, they can’t swallow and they end up on a ventilator. That’s another good sign. A lot of patients in those situations end up on a ventilator for a week or two that complicates the situation and that’s not the case in your mom’s situation.
Lara: That’s correct. I mean, the infection has complicated things, but also the bed was in a funny position and they were white pieces in her mouth so I had to keep mentioning. I should have had to mention that to them when she had gone to an attention.
Patrik: Is she still one and one at the moment?
Lara: I believe so, I think it’s one or two, but still they’re similar.
Patrik: Alright. What else? Was there anything else? Any other questions? That were burning for you?
Lara: I think those are the main ones actually. And the other question is just from your experience, have there been certain things that families have said that, have just made the doctors stop in their tracks and rethink things, is it just what you’ve already said?
Patrik: Basically your question is can you push it too far? Is that what you’re asking?
Lara: That and also is there something in particular that would make them really listen to us?
Patrik: Yeah. I think, what we’ve discussed now just by you challenging the issue around the DNR not stopping feat. By you bringing up things like a Glasgow Coma Scale, they will know that you’re talking to someone who knows the area. Start with that and don’t be discouraged when they’re sort of rolling their eyes to begin with, persistence is going to be key. I believe repetition is the mother of all skills.
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Lara: Yeah.
Patrik: Alright. So just because they may not listen to you when you bring those concerns today, doesn’t mean you shouldn’t bring them up tomorrow. Not at all, you need to bring them up over and over again. Number one, they need to know you are not going away anytime soon with this. Number two, they need to know you are your mother’s advocate. You will be your mother’s advocate today and in a week from now and they need to know that. What they might claim and say you’re not your mother’s advocate because we know what’s in your best interest.
Patrik: They might say because she’s suffering at the moment, her best interest is to die. That could be their line of argument. And then you go back and say but I’ve discussed this with my mother in the past. She wants to leave and she wants to fight, that will be your line of argument because they’re going to get that ICU quit back as quickly as possible. That’s their goal.
Lara: Yeah it feel like.
Patrik: And you can end again, spell that out to them. You almost have to.
Lara: No, I will. Definitely, so that’s going to be a big thing. They can just do that some day.
Patrik: No, and the other thing is, it’s day five now.
Lara: Yes.
Patrik: Not a long time.
Lara: It started like 10:00 PM Saturday evening. That’s when she had the seizure.
Patrik: It’s not a long time at all, so what does that mean? If your mom, for example, was on a ventilator after this event, she could be regulated for a week. Then they take her off the ventilator and then she probably wouldn’t wake up because she had a stroke and was in a coma. So you know, your mother is in a much better position to begin with. She’s not on a ventilator, so that’s all working in her favour and go on.
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Lara: Sorry, my sister just messaged saying that through the tube, they’re now giving her BP medications anti-Seizure medications.
Patrik: So, that means with anti-seizure, that’s good information to have. There is a chance that if they took it away or completely discontinue that. The risk for a seizure is there, they know that and that’s why they’ve started her and probably either Keppra or Phenytoin. So it’s probably best to should ask them what’s the result?
Lara: I’m so sorry, my sister just messaged saying she opened the eyes.
Patrik: That’s great.
Lara: That’s right.
Patrik: So if you go back to the Glasgow Coma Scale, just having another quick look then sure.
Lara: Spontaneously. That’s cool.
Patrik: Yeah. That’s four or five, so now she’s up to 11. So now we’re here why this is important I tell you why. So when you have somebody on a ventilator, for example, their maximom GCS is 11 you and I talking now we are both GCS 15. For somebody like your mom in a situation like that GCS 11 is almost like the maximom score. So you would not have somebody with a GCS of 11 with a DNR let alone with no feeds. That’s the murder.
Lara: Yeah. I need to get that removed then.
Patrik: Absolutely and also go on.
Lara: I’m so sorry. Because I won’t be there for another two hours, I should just tell my sister to remove it now or
Patrik: Start planting the seed there that you know, it’s highly inappropriate.
Lara: Yeah, it’s very inappropriate. I’m so glad that it found you because I’m usually the first member family who’s the strong one and dealing with this issue. But even I was finding it difficult. You really help.
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Patrik: It’s very difficult and also what you can do is, you can tell them now that she’s at GCS 11. You wanted to wait for her to wake up and make her own decision. That’s another one argument for you. She needs to be in a position where she can make her own decision what she wants going forward. She has every right to leave.
Lara: Yeah, that’s correct.
Patrik: So there’s a lot of positive scoring for your mother there. There really are.
Lara: I think you’ve actually helped us so much because we were all feeling really hopeless. And then when I called you. And I said no, we’re not putting up with it. I spoke to you and now everyone’s in the same frame of mind. And even when my sister went through the bit more she gets upset quite quickly. I think she went in a bit happier and more encouraging. And then now my mom get better in time.
Patrik: It’s easier said than done, staying positive is half of the battle. Right? It’s easier said than done in a situation like that. But the reality is no matter the outcome, staying negative is not going to help you.
Lara: No, it’s not, and actually this could happen to anybody. And you want to feel that you’ve done your best.
Patrik: Very much so. Actually, the two things that stand out to me is number one, she’s never been ventilated. Number two, the GCS has improved from probably six, seven, eight now to 11. That is very positive.
Lara: That’s correct. It’s very positive. So yeah. Wow. There’s so many things you said here Patrik. I just want a thought of or just forgotten and now I’ve got all written down. So I’ll write it out correctly and then speak to them.
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Patrik: Yes. And I will send you the recording of the call. And there’s a lot of positive and if you’re there, keep asking her to squeeze your fingers and ask them to take the meetings off if they can. So you can show them or they can see for themselves that she can squeeze fingers. Get all that positive evidence.
Lara: Let me just put my bag down. Sorry my son is jumping around on me.
Patrik: No, that’s okay. How old is your son?
Lara: He just turned one actually.
Patrik: That’s more than a full time job.
Lara: She was going to be his babysitter as well on the side, even if she is disabled. She can still sing to him and speak to him. So I think that she has nothing to go for.
Patrik: Absolutely. The clinical thing is one side of the coin, the other thing is your mother is a person and for them, they’re just looking at her stroke. That’s all they look at.
Lara: Yeah, that’s true.
Patrik: She’s a complete person who has a family to go back to, that’s all important.
Lara: Thank you so much, I think just you helping me lock my inner self to my sister. This is nothing like her. She’s, my sister’s not like the actual. But if you hadn’t sent the encouragement, which I passed on to her. That will help?
Patrik: Yup. And don’t be discouraged if she doesn’t open her eyes for the next two days. The fact that she’s opened them now is a good sign. Your mother will recover in her own time, no matter how much you want to speed up the process. She will recover in her own time. But the reality she will need to be given that time. And that’s what your applicants, they don’t want to give her the time. That’s what you’re up against.
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Lara: Yeah. Because there were 100 of hospitals everywhere and it is not fair.
Patrik: Exactly right.
Lara: Fantastic.
Patrik: That’s really what you’re up against. If you’re going to hospital, I’m very happy to have a chat to the doctors as well. If you feel like there’s value in that. I’m not counting minutes if you spend another half an hour, that’s absolutely fine.
Lara: That’s fine. I don’t mind paying for another hour, but I think what I’ll do now is I’ll go in, I’ll speak to them. And then I’ll probably take another hour because it’s been about an hour now anyway. And then maybe I can just use that to see if your free when the doctors come, because maybe the first time I think it’s better if I speak to them directly.
Patrik: Yeah, absolutely.
Lara: Or do you think it’s better if you listen in?
Patrik: Yes. Very much so. Is there a social worker involved?
Lara: I’m not too sure. Right now.
Patrik: Right. Well you can definitely ask-
Lara: Is that something worth asking?
Patrik: say that again.
Lara: Is that something that makes a big difference?
Patrik: It really depends on the person. Sometimes they are very good and sometimes they’re not so good. I think if you think it’s really going nowhere, ask them. But I think you’ve got enough insights for now to run with that and then see what’s next.
Lara: Okay.
Patrik: Yeah.
Lara: So do you think it’s worth me calling you and having you listen to the doctor from the side way?
Patrik: I can definitely do that for sure. That should be fine. I can just listen in. That should be fine.
Lara: I have to go now, but thank you so much.
Patrik: You’re very welcome.
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Lara: Thank you so much and I’ll keep you updated.
Patrik: Okay. Thank you so much.
Lara: Thank you so much. Bye.
Patrik: Bye bye.
Lara: Thank you. Thank you.
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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- 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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