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

Do Tracheostomy and Dialysis Mean End of Life for My Critically Ill Dad in ICU? Help!

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 in ICU, with tracheostomy, ventilated and on dialysis.  She is asking how long should her dad be on the ventilator for him to improve.

 How Long Should My Dad Be on the Ventilator in ICU to Improve?

You can also check out previous 1:1 consulting and advocacy sessions with me and Iyah here.

Part 1

Part 2

Part 3

Part 4

Part 5
 

Iyah: Hi Patrik, how are you?

Patrik: All good. So, yes, where did you want to start?

Iyah:  Yeah, just I don’t want prolonged suffering for dad. The tracheostomy scares me. I don’t know if it might be permanent long-term care needed. I don’t know how much more his body can handle all this on top of that, dialysis, and  his kidneys, his transplanted kidney from 23 years ago, shut. I did talk to his nephrologist today. He did say it’s gone to calcified or something like that.

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Patrik:  Right. So, he would most likely need permanent dialysis going forward if he survives, is that what the nephrologist is suggesting?

Iyah: Correct.

Patrik: Right. Okay. Do you think he could accept that?

Iyah:  He did tell me on his 23-year anniversary on November 2nd that it would kill him if he had to go on dialysis again. I’m just worn. I don’t want to look at my dad in his eyes and see a dead soul, who gets a tracheostomy and needs dialysis, and maybe he is suffering too much at that point.

Patrik: Right. Does your dad have an advanced care plan? Do you know what I mean by that? I think I asked you this.

Iyah: No, he does not have anything on paper, no.

Patrik:  Okay. Let me ask you another question, Iyah. Let’s just say you decide to go with no suffering and you decide to end his life, in 12 months’ time, would you potentially think, “What if I had stuck this out for a few more days or for a few more weeks and given him the chance?” Do you think you might come to that conclusion in 12 months’ time?

Iyah: Are you asking the possibility of letting him go?

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Patrik:  Yes. And then, in 12 months’ time, you might have regrets by wondering, “Oh, should I have given him more time?” And the reason I’m bringing this up is we have many, many people contacting us in those situations, where they say, “Oh, if I had only done my research then, now it’s too late, now my dad, my mom, whoever is gone.” I think it’s a very important question for you to consider, but I respect and I will help you with whatever you go with, but I do believe it’s a very important question for you to consider and for your family, I think too.

Iyah: Yes. Yes, definitely. I love my dad’s so dearly, I don’t want him to go, but I don’t want to have more pain.

Patrik: Yeah.

Iyah:  So, you’re saying if there’s a possibility that if things don’t go well down the road after a tracheostomy, we can also consider letting him end his life, is that what you’re saying?

Patrik: Well, it’s probably a bit more difficult than doing it now. Let’s call it for what it is. Once a tracheostomy, at the end of the day, can save lives. And let’s just say your dad would have to… but let’s just say your dad is having a tracheostomy, and things are not going well.  He can’t breathe off the ventilator.  He would have to have that tracheostomy removed in order to die, let’s call it for what it is.

But even now, Iyah, they would have to remove the ventilator, and the breathing tube, and then he would pass away. So, it’s the same principle. It’s the same principle. The other thing that I think is important to understand is just because you remove someone from the ventilator with a breathing tube or with a tracheostomy, there’s no guarantee they are going to die. There’s no guarantee for that.

Iyah:  Correct.

Patrik: The guarantee is that in some instances when you take someone off a ventilator that they might get some medication that helps them die like morphine, midazolam, fentanyl.

Iyah:  Correct.

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Patrik: But that could be perceived as euthanasia. Have you heard the term euthanasia?

Iyah:  Yes, I have.

Patrik:  Right. Euthanasia is illegal. By the same token, euthanasia happens every day in ICU all over the world. Just nobody says it, that’s all. But it happens all day, every day, all around the world. Knowledge can be power, but knowledge can also be a curse.

Iyah: Yes.

Patrik:  I’m educating you about the space, but it also brings more questions for you. I understand I’m not necessarily making your life easier with the decision-making, but I obviously know things about the area that I believe you need to know to make an informed decision.

Iyah:  Yes.

Patrik:  Another question, do you think it would be important for your dad to have a tracheostomy spend some time with you, and with other family members, and then make his own decision? Do you think that might be important for your dad or do you think you making a decision, you and your family making a decision on behalf of your dad is what he would want?

Iyah: The first.

Patrik: Right.

Iyah: I don’t want to make the decision for him. I don’t believe my siblings want to make the decision for him, but we’re perceiving what he may want.

Patrik:  Yeah.

Iyah: My sister is able to text me, but she’s saying try now and-

Patrik: We can try now if you like, try now.

Iyah:  Thank you. Yes, thank you.

Patrik: Give me a second. You know what I’ll do? I’ll just dial her and then I’ll dial you in because let’s just give me a second.

Patrik: How old is your sister, if I may ask?

Iyah:  She’s 42. I’m 46.

Patrik: Okay. I didn’t realize. I thought you might have a younger sister like maybe she’s 18, and that might be too much, but if she’s 42, she should be able to-

Iyah: Yeah, I don’t know. I don’t know. But anyways, she did text me a question she had, could we leave him on the ventilator to see if he improves and the answer is increased risk of infection, his tissue started deteriorating, so no.

Patrik: But the answer is yes, you can leave someone on the ventilator to see whether they improve. It’s actually a good question.

Iyah:But he’s still suffering so much right now. This moment, he’s suffering very much right now. His eyelids are swollen shut. His mouth is just going up and down, and his lips are getting very chapped.

Patrik: When you say he’s suffering, can you describe that a bit more?

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Iyah:   The look of his face. His eyelids are swollen shut now as opposed to just a couple of days ago. His mouth is just a constant up and down motion with the jaw, like a clock ticking, and it looks like he’s suffering.

Patrik: Right, okay. Okay. Well, I can tell you that most patients in the ICU do suffer temporarily, would be a lie to say otherwise. Okay. Yeah. It would be a lie to say otherwise.

Iyah:  Yeah. Her other question was, if not being on a ventilator for a prolonged time, is tracheostomy best?

Patrik:  Absolutely. You can only leave someone on a ventilator with a breathing tube for a period of time. You can’t leave them on a ventilator with a breathing tube indefinitely, but you can almost leave someone on a ventilator with a tracheostomy indefinitely.

Iyah:  Correct. Given my dad’s age, 72 years old, dialysis patient, kidney won’t bounce back, he hasn’t peed at all. Is this going to be too much for  his body if he gets a tracheostomy?

Patrik:  That is a very good question and a lot of patients in ICU have a tracheostomy and have dialysis, right? It’s not a unique situation. Can your dad’s body take that? We don’t know. What I will say is a lot of patients in the ICU have that situation where the kidneys are failing and they are on dialysis.

Iyah:  Yeah. My dad is definitely not the average person. He has a lot of-

Patrik: What makes you think that?

Iyah: He has a lot of preexisting conditions, had a stroke, left side weakness, a congestive heart failure now, diabetes type two, overweight.

Patrik: Okay.

Iyah: But the thing about the choice, end of life or tracheostomy with questionable quality of life, if we say end of life and he continues breathing, is there a way we can say if that happens, put a high oxygen nasal cannula on him to give him oxygen to breathe?

Patrik: Definitely, definitely. Look-

Iyah: That’s what I want.

Patrik: Yeah, I know, absolutely. Look, the reality is this, if you take him off the ventilator for end of life, and his kidneys are failing, and no one’s giving him dialysis, he will pass away at some point, right?

Iyah:  Yeah.

Patrik: But that may also cause suffering.

Iyah:  Yes, yes. So, when you say absolutely, that means the palette of people will have to-

Patrik:  Very much so.

Iyah: ..his wishes?

Patrik:  Very much so.

Iyah:  That is encouraging to hear because if he can avoid a tracheostomy and be able to continue with oxygen assistance, that would be the best-case scenario for me.

Patrik: Right, right. Just coming back to, what you mentioned a minute ago, quality of life, and I think that’s a very important topic and I also want to talk about quality of life. For me, maybe something my perception of quality of life, what’s acceptable for me might be very different compared to what’s acceptable to you, which might be very different compared to what’s acceptable for your dad. That’s all. I’m just taking out any judgment, just putting this out there, that quality of life is a very subjective term. It’s not an objective term.

Iyah: Correct, correct. And I believe if  he was given a choice being able to breathe again or not, he would want to breathe. I believe that.

Patrik:  Okay.

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Iyah:  So, have you experienced any patients that have gone through that scenario where the family members chose the end of life or the patient themselves and they had something in place where they said, “If I continue breathing without this ventilator, keep me alive?”

Patrik:  Yes. Yes, definitely. I think it’s important that if you go down that track that you talk to the doctors and say, “Look, what are the options? What can we have? What can’t we have?” Absolutely.

Iyah:  And I would love to have your advocacy for that.

Patrik:  Yeah.

Iyah:  Is that a possibility?

Patrik:  Absolutely.

Iyah:  Excellent, excellent.

Patrik: It all comes down to choice.

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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.

The 1:1 consulting session will continue in next week’s episode.

Kind regards,

Patrik

I only have one consulting spot left for the rest of the week, if you want it, hit reply to this email and say "I'm in" and I'll send you all the details.