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 one of my clients and the question last week was
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer the next question from one of my clients Steven, which are excerpts from phone and email counselling and consulting sessions with me and the question this week is
CASE STUDY: MY DAD’S BEEN IN ICU FOR SEVERAL WEEKS WITH ARDS, CARDIAC ARREST AND DIALYSIS! HE’S GOT A TRACHEOSTOMY, DOES HE HAVE A REALISTIC CHANCE OF SURVIVAL? (PART 4)
After I participated in a family meeting with Steven, his siblings and the ICU consultant, we evaluate the family meeting and his Dad’s options in today’s 1:1 counselling and consulting session with the ICU consultant and Steven!
Steven: Hi Patrick?
Steven: Hi, it’s Steven and Dr. Miles.
Patrik: Hello, how are you?
Steven: I’m good, thanks. Patrik was listening in. He wanted the family just to be there, but there were some follow up questions and also some other questions. The primary follow up question was around the Fentanyl, because the dose is extraordinarily high. The question becomes, if you’re trying to assess neurological, whether he’s able to understand if he’s feeling pain or not and it’s a big question mark for us. How do we do that when he’s on such a high dose of Fentanyl? Patrick, any other questions or thoughts on this?
Patrik: I was really concerned about what I consider as an unusually high dose of Fentanyl, with 300 micrograms an hour. One of the main side effects of Fentanyl would be respiratory depression. How do you want to wean him off the ventilator if you think it’s possible at all, and also how do you want to assess his neurological condition on, again, what I would consider an unusually high amount of Fentanyl?
Dr. Miles: Yes, yes. Basically, higher than we would normally use. Normally we would be using multiple medications. We’re using like Propofol and something else together. Yeah, I think he’s breathing … You know he doesn’t have respiratory depression like he is breathing five or six times a minute.
Dr. Miles: He’s usually breathing 50 times per minute.
Dr. Miles: And then he sort of had some periods of de saturation even today. He had to go from 55% and 20 at PEEP to 80 of FIO2 and 20 at PEEP.
Patrik: Right, Okay.
Dr. Miles: So basically he’s still got air, the ARDS is the problem.
Patrik: Yeah, yeah, no I understand that. But still, you know, I understand all of that, but with the stroke in mind that he’s had a couple of weeks back I believe or awhile back. You know the Fentanyl would mask any you know neurological signs he could give to the outside world you know it’s there.
Dr. Miles: The concern is really, we really want to try to understand if he is in pain. Because to make a decision about end of life treatment …
Patrik: Right. Okay.
Dr. Miles: Yeah, the problem is, at this moment if we tried to lower it or get rid of it, it would basically de saturate him, and we would probably either have to put it back, or he’d just die quickly.
Dr. Miles: ‘Cause even when we tried to lower the Fentanyl from 300 to 250, that he started getting very fast. De saturated, sometimes to the 70’s, so again, we could put him back on other agents, and probably sedate him less we put him on Propofol or something like that. But now his lungs are so bad that preventing his coordination is causing him to severely desaturate.
Steven: Oh, wow.
Patrik: Okay. No, no. That makes sense. I guess you haven’t from my perspective, you haven’t specifically brought up the topic of end of life care earlier. You haven’t mentioned … You haven’t used those terms even though I understand that this could well be what’s next on the list of topics to be discussed.
Dr. Miles: Yes. I would rather consider it when over all the medical pacts and everything first, and things like that. But there certainly are options, and you said you wanted to know about what the options would be.
Steven: The dilemma, or the predicament is making a decision like that, while not knowing truly how much pain he is in, what neurological condition is he in, can he communicate, can he nod, some of us think he can.
Steven: So it’s tough for us to even, let’s assume we can get to that decision.
Dr. Miles: It’s possible, we might be able to get there, but there’s also a possibility that we might never be able to get there. Because he’s totally off all medications for several days to see what his mental status is. But just to go over what the options could be, again.
So, starting from one end to the other basically. The first option is the exact thing that we’re doing now. And, then the option that would be next would be, all the things we’re doing now, but if he had another time like he had before, where his heart stopped.
Steven: Like a DNR.
Dr. Miles: Yeah. Would be DNR So that would be a next option. Another option would be to do all the things we’re doing now, but not to … What we call “no escalation of care.” So that right now, he’s on some fentanyl, dialysis, all those things, if a new thing happens to him and his blood pressure dropped very low, not to try to increase the basal pressures at that point but just to let that go.
- THE 5 THINGS YOU NEED TO KNOW IF THE MEDICAL TEAM IN INTENSIVE CARE WANTS TO“LIMIT TREATMENT”, WANTS TO “WITHDRAW TREATMENT”, “WITHDRAW LIFE SUPPORT” OR WANTS TO ISSUE A “DNR” (DO NOT RESUSCITATE) OR “NFR” (NOT FOR RESUSCITATION) ORDER FOR YOUR CRITICALLY ILL LOVED ONE!
Steven: Right, right, right.
Dr. Miles: I say again, it would probably be a new infection, we know, most likely, and basically not stretch any treatment options.
Steven: And in that case, you just … It’s far from…
Dr. Miles: Yeah, oh yeah, it wouldn’t be us doing it to him, but we would just let the natural process happen and then he would die from cardiac arrest.
Dr. Miles: Then the next option beyond that would be to do basically … Stop some of the things we are doing. And that could be really any of the things that we’re doing. Drawing his blood, giving antibiotics if he has an infection.
Dr. Miles: Stopping even dialysis if he gets intermittently. Things like that. If we say, stop dialysis, I would predict he would die, but it would be over some, one or two weeks period. Just right now he doesn’t need dialysis that frequently at the moment. But when he needs it, I’m not saying he wouldn’t need it. Then over a two week period, it wouldn’t be our summon, but he still could die without it.
And then the next option would be to actively withdraw the ventilator. If we did that, we would certainly make sure he had pain medicine and then he probably would need more than the Fentanyl and Propofol, and something like that.
Steven: Propofol, yeah.
Dr. Miles: Then make sure he really didn’t suffer at all while we’re doing that.
Steven: Right, right.
Dr. Miles: He would breath for some time, because we say he breathes but he would die without the ventilator. Could be minutes, or hours. Could be days.
Steven: Really, isn’t that suffering?
Dr. Miles: Yeah, basically what we would do, if he had any gasping breaths or anything like that we would keep increasing the medication, and eventually his breathing would slow down.
Steven: Yeah. Right. Right.
Dr. Miles: One thing that … We never give a medicine to cause somebody’s death.
Steven: Right. Like an opium.
Dr. Miles: Right, yeah. There’s no controversy about it, but most doctors and nurses don’t do that…
Steven: With cancer and tell me, if its not a stage four terminal that he has, but it’s an irreversible lung condition.
Dr. Miles: Yeah, exactly. That’s the problem that … If we had, let’s say somebody has prostate cancer that’s stage four, on average that person has this many months, you know, reveal that information.
Dr. Miles: And for some other diseases we have similar information, and we know that the … But again, we have reached that stage where, I think he could die within weeks or months, but fairly comfortable, but could he remain in this type of situation for months beyond that, that’s possible too.
Steven: Right, right.
Dr. Miles: Is he going to live 20 years? No.
Steven: Yeah, yeah. That’s out of the realm.
Dr. Miles: Yeah, that’s out of the realm. No possibility left.
There’s a lot of things in between. So it’s a little different. You know, where there’s some diseases we just look up. Liver disease, we know that if your labs say this, then this is what we would predict your mortality.
- PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE!
Dr. Miles: So, with that said. That’s in excess a little tougher absolutely.
Patrik: And if I may just ask Dr. Miles. Earlier in the meeting you mentioned something about options to move him out of ICU even on a ventilator. Did I understand that correctly?
Dr. Miles: Yes, yes.
Patrik: What are those options?
Dr. Miles: Well, basically there’d be two ways somebody would move out of the ICU on a ventilator and provide palliative care basically.
Patrik: Mm-hmm (affirmative).
Dr. Miles: The first would be to palliative care floor. Which would basically pick up. That would be … The philosophy would be very different than the ICU. It isn’t a medical floor. But that would be basically continuing medicines like fentanyl or any other medicine he needs for pain, but they wouldn’t be drawing his labs, they wouldn’t be drawing ABG’s, they, again take blood pressure, so they would leave that alone.
Steven: That’s end of life care.
Dr. Miles: That’s end of life care.
Patrik: Yeah, end of life care and comfort care.
Dr. Miles: In hospice, you would have to have less than six months to live, but usually if you are on a ventilator in hospice you’re talking about a shorter period.
Steven: Right, right, right.
Patrik: Oh yeah. Yeah.
Dr. Miles: Yes. That’s pure end of life care. That’s one way you could leave on a ventilator. The other would be to go to a regular medical floor on a ventilator. But that would only be in the state where he … Right now, his needs are too high. There’s again that one time where he almost felt good enough to go, basically, and then he had that step back and … But if he reached the stage where again, he was able to get doused with that every so often, and didn’t need medicine for his blood pressure, and if he’s on 80 percent and 20 peep he can’t really be on the floor.
Dr. Miles: If he desaturates its going to be the end of your life.
Steven: Right, right, right. That’s a DNR(=Do not resuscitate) situation right?
Dr. Miles: Yes.
Steven: If he gets to the floor.
Dr. Miles: Yeah, basically, generally moving to the floor would be a one-way move. With the hope that he keeps getting better. But there’s no way to say it can’t get worse.
Dr. Miles: At this point seeing that he even got worse with his oxygen at the end of day…
Steven: Right, right, right. Okay.
Patrik: Okay. I guess, from your perspective Dr. Miles, I mean I understand the severity of the ARDS with what you’ve described to me, and I think there’s probably very low chance of getting him off the ventilator. And you have been very compassionate I believe in your explanations earlier, and I think you are now too. It’s hard to sort of make a decision I believe especially, since I guess everybody’s trying to make a decision that he would make himself if he could. That is a decision that’s really a hard one. On the one hand nobody wants to give up hope, on the other hand, is there a case of where, everybody wants to try and minimise suffering as much as we can. Do you think that he’s suffering? What’s your feeling?
Dr. Miles: Well, I think Dr. Brechnatz said “There’s pain, physical pain that somebody might feel.” How much of that he could sense or not is difficult because the gold standard is usually say, for pain, we ask somebody “Do you have pain?”
Dr. Miles: And they say yes or no. Any other test we do is very indirect. And there certainly is a lot of things we do are painful, the tubes and things like that. Different kinds of procedures that we do.
Steven: Putting them on incredible pressure.
Dr. Miles: Yeah. Exactly. And there’s stress on his whole body. But to some degree, that’s un-knowable. Then there’s if he’s aware and understanding things, there’s what some people existential pain, or psychological pain. The feeling of, some people have religious crisis, why is this happening to me? Did I deserve this? Or things like that.
Dr. Miles: There’s the pain of seeing your family member. They look sad and then you feel bad because they feel bad. All of those are possible. And most people experience some certainly. When your very sick. You sort of go through all these things in your mind and even people say don’t worry about that, but they are natural thoughts that people have. So I think when I ask ICU patients who are able to say, or they recover and they say, they read the report. All of these things , to some degree.
Steven: Right, right.
Steven: In your IP of patients when you’ve experienced and they’ve survived, they’ve experienced some feelings of …
Dr. Miles: Yeah, they are really thankful and everything but they worried they were … How they had vivid memories and they felt bad because they saw their sister crying or something like that. And some people turn inward, and some people turn outward. And they start thinking about other people. And there’s no … I can’t give a medicine to treat that. And a lot of people do have that.
Patrik: I guess, you mentioned 55 percent of oxygen PEEP of 20, I don’t know how long he has to be under a PEEP of 20 for, but …
Dr. Miles: And that was earlier. I think he’s on 80 percent oxygen now.
Steven: He’s was on 65.
Dr. Miles: Oh yeah. Yeah. His chart goes up and down. So he’s on 65 percent oxygen now.
Patrik: And how long has he been on a PEEP of 20 for? For days?
Dr. Miles: Yeah.
Steven: A week. A week now.
Dr. Miles: Yeah.
Patrik: Right. Right, right.
Dr. Miles: He was getting better for a period of time and then he developed an infection and then cardiac arrest.
Patrik: Yeah, yeah.
Dr. Miles: Oxygenation requirements increased dramatically.
Dr. Miles: Yeah so, about … There’s that time somewhere between three weeks and two weeks ago. Which is sometimes an improvement but then since that two week period, he’s been on very high ventilator settings in general.
Steven: I’ve also got a question. Is there anything genetic about Interstitial Lung Disease? Like, should myself, my brothers and sisters …
Dr. Miles: It’s a good question. It’s not like some diseases where we have specific prognosis here, like your father has it, you can have it. On the other hand, any is like heart disease. It’s not like it goes in a gene from you to your but, but it’s more propensity type of thing.
Steven: Right, right, right.
Dr. Miles: And there’s a lot of diseases even though we have whole gnome now, there might be some small things that make it slightly more likely.
Steven: The opacity of something like that is higher?
Dr. Miles: Yeah, and the only … What could be called predominantly environmental exposure. It’s not like smoking causes lung cancer, this causes …
Steven: There’s no straight cause.
Dr. Miles: Yeah, exactly. So we recommend to anybody, don’t smoke cigarettes, don’t expose yourself to toxic fumes and stuff like that. And it’s likely that there’s some people that are just more likely to get infected.
Steven: Okay. Alright.
Patrik, anything else?
Patrik: No, I think now I’ve got a really good understanding and I think we might have to discuss when you’re ready.
Steven: Okay, alright, fair enough.
Patrik: Okay, thank you so much. Thank you. Bye-bye.
Dr. Miles: Bye.
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)
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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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