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 Should My Dad Be on the Ventilator in ICU to Improve?
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, Iyah, as part of my 1:1 consulting and advocacy service! Iyah’s dad is critically ill in the ICU and she is asking why is the ICU team discussing end-of-life options for her dad when her dad has only been in ICU for 15 days.
Why is the ICU Team Discussing End-of-Life Options for Dad When He Has Only Been in the ICU for 15 days? Help!
You can also check out previous 1:1 consulting and advocacy sessions with me and Iyah here.
Iyah: Okay. That is what I want and I’m sure my siblings will want that as well. Given him oxygen settings on the ventilator, I’m sorry to ask, but what would your best guesstimate be? Is there a chance that he will continue on breathing, and then they will put the high oxygen nasal cannula in his nose and give him more oxygen, would he be able to sustain it?
Patrik: What are his ventilator settings? Do you know them?
Iyah: 50, 50, and PEEP (Positive End Expiratory Pressure) is 10.
Patrik: Yeah. Do you know the actual ventilation mode?
Iyah: I took pictures. So, let me pull up the pictures and see if I can read off anything.
Patrik: You can send me a picture on Skype, that would be great.
Iyah: Okay. Let me see.
Patrik: Thank you.
Iyah: Yeah, you’re welcome. Okay, sent.
Patrik: Okay, just give me a second.
Iyah: Sure.
Patrik: Yeah, here it is. Okay. So, now, let me just have a quick look. So, he’s on FiO2 (fraction of inspired oxygen) 50, rate of 16, PEEP (positive end expiratory pressure) of 10. Yeah, okay. So, I can’t answer your question really without knowing what medications he’s on at the moment as well. Do you have a list of medications he’s on?
Iyah: That will be through IV, correct?
Patrik: There will be IV, but there will also be some medications they would be giving through the nasogastric tube.
Iyah: I do not know. I do not know.
Patrik: Just ask them.
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Iyah: Would we be able to inquire about that at this time?
Patrik: They will most likely do a shift change over at 7:00 or at 8:00 PM, most likely. So, I don’t think now is a good time.
Iyah: I understand.
Patrik: But definitely something we can find out.
Iyah: Okay.
Patrik: So, here’s what I can see. If they took him off now and they stopped all sedation, he might be able to breathe. He might, he might not. The bottom line is if his kidney failure remains untreated, he will pass away eventually, but it’s very difficult to put timelines on it. Very difficult.
Iyah: I see what you’re saying. So, wait, wait, wait, if we chose end of life, and then he continues breathing, and we ask for the high oxygen nasal cannula, if he continues breathing, put that on him and you’re saying his kidneys may start shutting down at that point, maybe?
Patrik: Yeah. Well, if they’re shutting down already, I mean he is on dialysis at the moment, isn’t he?
Iyah: Yes.
Patrik: So, you stop dialysis, you stop ventilation, right? You’re not treating either. It’s going to lead to death eventually.
Iyah: But with the dialysis, it was just like maybe three times per week, maybe four. So, it’s not every single day. Are you saying that there’s a big difference between the ventilator’s oxygen compared to what he can output on his own with all the flow-
Patrik: Very much so, very much so. But there is probably a very big difference, but the question also is if they’re not treating kidneys without dialysis, eventually, he will die because of fluid overload.
Iyah: But they would have to treat his dialysis if he can continue living at the moment of being removed off the ventilator, and if he’s able to sustain his own breathing with an oxygen cannula, right, or am I not thinking it correctly?
Patrik: So, let’s just say you take him off the ventilator without a tracheostomy and he can breathe, but you’re not giving him dialysis, he will die because of kidney failure.
Iyah: Because of at the moment, is that what you mean or later on?
Patrik: Later on. At the moment, his kidneys are taken care of. He’s on dialysis.
Iyah: You’re saying if we chose end of life, dialysis will be out of the picture?
Patrik: Correct, correct.
Iyah: I understand what you’re saying now. Why is that the case? Why would we not be able to ask?
Patrik: Well, it doesn’t have to be the case, but that’s why it’s so important for you to think it through. From what I understood from you earlier was he wouldn’t want to live going on dialysis. That was my understanding from earlier.
Iyah: Yeah, yeah. It would be very harmful to his spirit if he had to go back to dialysis. But then again, he might have his own change of mind and want to live.
Patrik: Well, how important is it for your dad? Let’s just say your dad could live on dialysis and even if it’s only for another six months, how important could six months be maybe to get his affairs into order, maybe to say goodbyes to the family? I don’t know. I don’t have the answer to that, but I do believe, again, it might be a question for you to ponder.
Iyah: So, what you’re saying is if we chose the end of life, then they cannot do anything else other than allowing him to continue breathing if he’s still breathing. Is that what I’m understanding?
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Patrik: Well, again, it comes back to you talking to palliative care or us talking to palliative care and see what the options are. If you decide, “Hey, we’re not going to do a tracheostomy, we’re not going to do dialysis,” what does the palliative care team then suggest as next steps?
Iyah: Oh no, no, no, no. I’m sorry for not making it clear. If I wanted him to have dialysis, I would definitely want him to have dialysis.
Patrik: Okay.
Iyah: He can live.
Patrik: Okay. Maybe I misunderstood that then. Maybe I thought you were saying earlier that dialysis would not be an option for him, you think.
Iyah: From what he said in the past, but we’ll change his mind. So, we can have things in place with the palliative, you could say-
Patrik: Look, I believe you can go either way. You can push for tracheostomy, you can push for dialysis, or you can say, “No, I don’t want that for my dad. I don’t want any of it for my dad.” I think you can go either way. But also keep in mind, there’s no guarantee that either way is going to be satisfactory for you or for your dad. There’s no guarantee either way.
Iyah: That’s correct. And that’s the battle that I’m having right now in my mind.
Patrik: Yeah.
Iyah: Okay.
Patrik: Iyah, I believe anybody in this situation feels overwhelmed and that’s normal because nobody is sitting at home and thinking, “Oh, I wonder what I should do if my dad goes into ICU next week.” Nobody’s thinking that. But now, obviously, you are confronted with that situation, and now you’re gathering information.
And I do believe, digest the information, and then make a decision when you’re ready. I know they’re putting you under pressure, but I also feel like you’re still in the information gathering phase. And the way I would approach this if I was you, is think about in 12 months’ time, what would you regret not doing?
Iyah: Given his chance to live-
Patrik: Once someone is gone, they’re gone. Thise’s nothing you can do. As far as I’m aware, there’s no return from death. Once he’s gone, he’s gone. If I was you, I would approach it in a sense, what would you regret in a year’s time?
Iyah: Absolutely, absolutely. There would be a lot of regret. And the thing is, I think I told you, the nurse told me that I don’t have any court papers saying that I’m his legal guardian. So, it does have to be a decision made by the family, the siblings.
Patrik: Yeah.
Iyah: And my younger brother, he is adamant. He wants dad to not have end of life. How would that work if not all of us came to an agreement?
Patrik: That’s a very good question, Iyah. Normally, what happens in a situation like that is someone would need to be appointed as a decision maker, but that is not so much my area of expertise. You would have to probably consult a family lawyer about that.
Iyah: Oh, my goodness. So, he can prolong on a ventilator and continue suffering if one family member doesn’t agree with everyone else.
Patrik: Pretty much.
Iyah: That’s awful. That is so awful. That’s the situation we’re in right now. My younger brother is very adamant. He does not want him to have an end of life. And at this time, I’ve had a change of heart thinking about what he may want, and I don’t believe he wants to have so many uphill battles with tracheostomy and also dialysis, not being able to eat. But not being able to eat may be temporary, but we don’t know.
Patrik: No, we don’t know. We don’t know.
Iyah: So, yeah, oh goodness, this is so awful.
Patrik: Do you think you are the only one in your family that is sticking as deep as you are?
Iyah: My younger brother is along the lines, but he’s a little more extreme. But he came around, he’s saying, okay, if tracheostomy is the next best thing for him to survive and live, then he’s okay with it. But before that, he was saying one or the other, just take off the ventilator or no end of life.
Patrik: Yeah. You see-
Iyah: Yes, go ahead.
Patrik: … the problem is no matter what you do, there’s no guarantee he will improve if he has a tracheostomy. There’s no guarantee he’s going to die quickly if you decide for end of life. It’s very hard to predict the future. And that’s why I’m going back to if you project yourself out 12 months, what do you think you might regret not doing?
Iyah: Given his every possible chance to live.
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Patrik: Right. I can’t tell you, Iyah, how many people come to us and for whatever reason, they stumble on our blog and they say, “Oh, last year my dad died in the ICU after three or four days or after 10 days or whatever, and we had no idea. We just went along with everything that the doctors were saying, and now I’m having second thoughts.” And unfortunately, it’s too late then. When someone is dead, they’re dead. And I can tell you, how many days has your dad been in ICU now, 10 days?
Iyah: Fifteen days ICU.
Patrik: Not a long time, Iyah, not a long time. How can someone make a decision about life or death within 15 days? Put that in perspective. That’s 15 days out of your dad’s life. He’s 70, that’s 0.001% of his life. How can you make an adequate decision about life or death in such a short period of time? It’s not the doctors who make it out, “Oh, it’s easy to make a decision about that.” I argue that on a family level, it’s anything but.
Iyah: I agree. I agree. So, hypothetically, if the family can come to terms and say tracheostomy so that he can have a chance to communicate on his own if he wants to live or continue living with any suffering or end of life, is that no longer in the question about end of life if he’s awake now and able to communicate and says, “No, I don’t want to live anymore. Why did y’all do this to me?” Is that out of the question?
Patrik: Yeah, no, that’s fantastic. Look, it’s not fantastic, but I do believe in choice, and I do believe in… I can tell you with all my experience, I wouldn’t want to make a decision about my dad’s life. I wouldn’t want to do that.
Iyah: Yeah. But is that out of the question that he can communicate with himself if that may be a possibility for him to regain his own ability to communicate that he does not want to continue on with more suffering?
Patrik: Okay. I’ll give you an example. I’ll give you an example. I don’t know how much research you’ve done. We’re also doing intensive care at home here where I am, and we’re looking after ventilated patients at home. So, I can probably give you numerous examples. We had a young adult that we looked after at home with a ventilator on the tracheostomy.
And he was a child when he had the accident and he ended up… he’s been on a ventilator for 40 years, right? Anyway, where I’m going with this is he was six years old when he had the accident, and his parents were in the same dilemma that you were in. And the hospital was pushing for an end of life and saying he wouldn’t have any quality of life and blah-blah-blah.
And he was on a ventilator with a tracheostomy, six years old, and his parents asked him, and he couldn’t talk. His parents asked him, “Can you let dad and dad know if you don’t want to be with us, blink twice, and if you want to be with us, blink three times and he never stopped blinking.
Iyah: Okay. See. See, a lot of grey areas.
Patrik: There’s no right or wrong answer, Iyah. There’s a right answer for your dad.
Iyah: When you say that, that means the children have to make that decision. Is that what you mean?
Patrik: No. No. Take the six-year-old boy, he wants to make a decision. If a six-year-old-boy wants to make a decision, I believe a 70-year-old man wants to make a decision.
Iyah: Yeah. That’s what I would want this to go. Is that a possibility?
Patrik: You wouldn’t know until you tried.
Iyah: Yeah. The thing is, like I said, with the children, if we don’t come to an agreement, can that be a possibility where we can’t do the end of life, and no one agrees to it? I mean, not everyone’s agreeing to it, and the next treatment needs to be a tracheostomy. So, then that gets done and then he can communicate on his own someday if he wants to continue or not. Is that what you’re saying that he would be able to make a decision on his own?
Patrik: I think with the added-on complexity that your family is not on the same page at the moment, I do believe that even strengthens the argument of your dad needing to make his own decision.
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Iyah: Okay.
Patrik: Right, because it sounds to me like you can’t come to an agreement as a family and it’s not good or bad, it just is, right?
Iyah: Yeah, and I’m torn.
Patrik: Yeah, for sure.
Iyah: I’m torn.
Patrik: For sure. And I do believe that strengthens the argument that he needs to make his own decision because you as a family can’t agree.
Iyah: That sounds great. I would want him to make his own decision. I don’t want that to be placed on the children.
Patrik: No, definitely not.
Iyah: So, that is an option then that we can demand.
Patrik: I think, Iyah, as long as you as a family haven’t appointed someone as a decision maker, I think the hospital will almost point you back to that. I think any reasonable and sensible person would point you back to that.
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!