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 in this series of questions from our client Robert and the question last week was PART 5 of
You can check out last week’s episode by clicking on the link here.
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 1)
This week’s CASE STUDY is an excerpt of a 1:1 phone counselling and consulting session with me.
Steven’s Dad has been in ICU for several weeks now and he’s been battling ARDS/lung failure and he also had a cardiac arrest.
His Kidneys have failed and he now requires Heamodialysis for his failing kidneys.
Steven’s Dad is still ventilated and he’s got the tracheostomy to keep his airways safe.
Steven is obviously very concerned about his Dad and he wants to make sure the ICU is doing all the right things to maximize the chances of survival for his Dad!
Steven: So, I wanted to talk to you about my situation and talk to you about ways we can work together.
My father has been in the ICU now for several weeks. He’s in xxxxxxxx Hospital. So, this is what happened. On January 26th, he went to get a flu shot. The next day, he woke up and was having severe shortness of breath, slurring. My mother called an ambulance. We sent him to an ambulance to the hospital, and he was put on oxygen support, because they did the CT scan and discovered it was acute respiratory distress syndrome, ARDS.
So, he was at the hospital. He was at one hospital, which was a regional hospital for about a week. The regional hospital was taking his measurements, arterial blood gas measurements, seeing how he was doing on the ventilated. He wasn’t sedated at that point, or he wasn’t intubated at that point. Then they decided he needs to move to a more tertiary care facility. They sedate him, and then they transferred him. He’s been transferred to xxxxxxxx, which is a well known, large hospital in New York City, in ICU. He’s been in the critical care for about a month now in the ICU.
He has severe ARDS, and the critical care specialists here, and the pulmonologists and all of them were trying to do different things like prone positioning. Trying to do different techniques, and he was getting better. Then they did a tracheostomy, and he’s gotten the tracheostomy. He was getting better for some time, and then all of a sudden he developed a fungal infection. That set him back big time.
So, the fungal infection led to some other organs starting to have problems, so he went into cardiac arrest. Then he … they resuscitated him. His lungs went back to square one. For a period of time, he was on the ventilated, but on low oxygen, 40% oxygen, five of PEEP, but now he’s back to 75% oxygen and 20 peep.
The doctors … also now his kidneys are starting to fail. He’s having acute renal failure, so the doctors are trying to do dialysis to see if he can tolerate it, and remove some of the liquids. He’s fully sedated and he’s fully paralyzed with medicine. We have no way of communicating with him.
Today, the doctors had us meet with palliative care, because I think they don’t see … The doctors are saying this is very low probability he’ll survive. So I wanted to talk to you and see what your thoughts are, how we can work together, what you think I should be thinking through and questioning, and stuff like that.
Patrik: How old is your dad?
Steven: He’s 72. He’s going to turn 73 in April.
Patrik: I see ARDS … When he was in the first hospital, before he got transferred to New York, was he diagnosed with ARDS there and then …? Or is that a diagnosis-
Steven: Yeah. He was diagnosed the first night, because they did the measurements, and he was diagnosed with severe ARDS, based on … Initially they thought it was pneumonia. They gave him an ample dose of antibiotics and antivirals, and then did the CT scan as well as looked at his ABG reports, and then was diagnosed with severe ARDS.
They tried, the old hospital tried oxygen ventilator support to see if his lungs would get better, and then they decided he’s not getting any better and he should move to a better hospital, which is the one here in New York City.
Patrik: Just to give me, give the timeline again. You said he’s been in hospital since the end of January?
Steven: Yeah. He was first admitted to the hospital January 22nd with shortness of breath. He was intubated on February 6th, and February 7th he was moved to this hospital in New York City.
Patrik: And the proning* initially worked?
*proning= turning a critically ill and ventilated Patient on their abdomen and head down to drain fluids off the lungs as well as increasing lung perfusion by having the backs of the lungs free
Steven: Initially, the proning did work, and his oxygenation requirements started coming down drastically. So, he was initially on 75%, 80%, sometimes 100% oxygen. They slowly lowered it, and after proning it worked. A few times he moved down to 50% oxygen with five peep, all the way down to 40% oxygen.
Patrik: I don’t know whether that’s been discussed. Have you heard of ECMO?
Steven: They decided ECMO would not make sense for him, given at this point it doesn’t make sense, because of multi organ failure potential. In the beginning they decided, let’s try proning, and that seemed to work, so they didn’t want to do ECMO.
Patrik: Would they have had ecmo available in this ICU, or would they have had to send him out if they were talking about ecmo?
Steven: No, they had ECMO available in the ICU.
Patrik: Okay, that’s good to know. With palliative care, or with a referral to palliative care now … When did they first start talking about this?
Steven: Just a couple of days ago when his kidneys started producing not much urine, and his creatinine levels started creeping up. They started saying, “We don’t think he’s going to make it. We think you should start talking to palliative care.”
Patrik: Up until then, palliative care has never been mentioned? Withdrawal of treatment has never been mentioned? That’s new. That’s the last 48 hours basically have changed their communication, that he may not survive this. Would that be fair to say?
Steven: Yeah. I think last week he … What happened was he went into cardiac arrest. They resuscitated him, then it was back to square one. Then they started saying, “Look, he’s on full life support. He’s on ventilator support, and his blood medicine.”
Patrik: Is he still on that blood pressure medicine?
Steven: Yeah, he’s still on vasopressin and norepinephrine, because his blood pressure was fluctuating, getting low. So I don’t know. What do you think? Do you think his chances are low?
Patrik: Look, by what you are telling me, he’s not … he’s probably not doing great, but at the same time, in those situations, the challenge is always, will there be an improvement if they continue? Is your dad suffering? The other question that I would have is with the cardiac arrest last week, do they think there has been any brain damage done? Have they talked about that?
Steven: After the cardiac arrest?
Patrik: Yeah. So, what might happen during cardiac arrest is there may be a period of time where the brain is not getting enough oxygen profusion, right? Have they talked about something like that, or …?
Steven: No, they didn’t talk about that. They did say that … So, there was a period of time where they were trying to reduce the sedation. This was before the cardiac arrest. He wasn’t waking up fully, and so they did an MRI, and they discovered few minor strokes, including one, which they think is a minor stroke in the brain stem. Although he was blinking to us when we were telling him to blink. He was moving his shoulders and wiggling his toes when we were telling him to, so he may have had a minor stroke in the brainstem during the … They said that that happened probably at the onset of intubation, or sometime when they transferred him from hospitals.
Patrik: Right, right. Okay.
So, during a cardiac arrest, depending on how effective resuscitation is, there may have been some brain damage caused or may not. I guess that would be one question I would ask. I would continue to ask.
If they think the heart is so weak that he cannot survive this, then maybe a referral to palliative care may be appropriate. It’s sort of … I would need to know even more. You’re talking about … You have mentioned multi organ failure, haven’t you?
Steven: Yeah, I did mention that. They did say that look, his vascular system is in need of support. His lungs are in failure. He went into cardiac arrest. Now his kidneys are not working. They’re basically saying the kidneys are the big key. If the kidneys can’t tolerate … They haven’t started dialysis. If the kidneys cannot tolerate dialysis, they are basically saying there is virtually no chance he will live, because they need to remove the liquids out of his body. Vicious …
Patrik: Vicious cycle, yeah. Look, the dialysis, I can’t see why dialysis wouldn’t be working, right? I mean, there’s no indication from everything that you have described to me that dialysis isn’t working. The other thing that is important to know, the kidneys are probably the most forgiving, and I put forgiving in quotes, so the kidneys are the most forgiving organ in the body. 90% of patients who go on dialysis, their kidneys recover, right? So, I can’t see why they wouldn’t want to start dialysis in the first place. With-
Steven: They started it. Sorry, I should I mention, they started the dialysis yesterday. He was able to tolerate it for almost two hours, but then his heart rate started spiking up and down, so they had to stop it. They’re going to try again today. He’s on a dialysis, so …
Patrik: Right. With palliative care sort of coming in, or being referred to palliative care, have you spoken to palliative care as yet? What’s the way to go about this from … What have they arranged?
Steven: Yeah, so we had a meeting today with the attending as well as the palliative care team, just to start the dialogue and say, “Hey look, what are the different things and treatments?” My concern was, is this an issue that is terminal yet, or are they classifying it as a terminal case now. They said they weren’t willing to do that yet, because they want to see how the dialysis goes, but if they hit the wall, and the kidneys are not reacting to the dialysis, or the body’s not treating … tolerating the dialysis, they want to think about all types of palliative care that’s appropriate for based on the religion, based on all sorts of stuff.
Patrik: Okay. What’s your gut feeling?
Steven: I don’t know. I read so many cases about ARDS online, 80 year old patients have heart failure, multi organ, and they come out of it, even though it takes months. I don’t know. How many cases have you seen like this? There is some hope, but the odds are against him. They’re ascribing one in a 100 chance that he makes it.
Patrik: Look, I would always-
Steven: If he makes it, the quality of life is going to be very different than when he walked in. That I understand, and I’m okay with that, but what I don’t understand is … I’m just trying to get a grasp of what’s in the realm of possibilities here. Medicine is still an inexact science.
Patrik: Very much so, very much. A very inexact system.
Look, you’re absolutely right. There’s plenty of cases where people survive this. Other cases where people don’t survive. You never have that crystal ball in terms of what might happen next. I also see your dad hasn’t been on ECMO, which I see as an advantage, because ECMO can be very good, but at the same time it’s even more, what’s the word, it’s even more stressful for a patient to go through ECMO therapy, so I see that actually as a benefit that he didn’t have ECMO.
So, from my perspective, just by everything that you are describing me, on the one hand I think it’s good that they’re talking to palliative care to sort of have somebody on site if the worst scenario happens, but at the same time I think it’s premature to talk about stopping treatment or stopping life support. I’m pleased to hear that they did start the dialysis eventually, right?
What’s certainly concerning is the vasopressors/ inotropes, and I would also want to know what his heart functions shows. I’m sure they would have done an echocardiogram of the heart. They would have done some ECGs. They would have done some blood tests, so they would have an idea how severely damaged his heart is. Again, the next question then to me as well would be, has there been any brain damage caused during the cardiac arrest?
Those would be the questions that I would ask, and find out, okay, well, if your dad was to get through this, despite the prolonged induced coma that might impact on his quality of life in the future, are there any damages that have been done during the cardiac arrest that would almost prohibit from waking him up? Those would be the questions. I’m surprised they haven’t sort of brought this up already, especially with a cardiac arrest, but you know.
How I can help is certainly by talking to you and making sure you can ask all the right questions, but what I can do as well is I can talk to the doctors directly. I have no problem in doing that. I would also be very happy in talking to them in a family meeting, where you are present, right? I can certainly do that.
I can dial into family meetings with the doctors if you have any … That’s normally how it works, and that’s when I also find that we can do the best work, normally, by doing that.
Steven: So I know, what are your qualifications?
Patrik: I have worked … I’m an intensive care nurse. I have worked in intensive care for nearly 20 years. I’m still practising intensive care once a week, right? I do earn a living by doing, by consulting families in intensive care. What are my qualifications? Well, I’ve done a critical care certificate. I’ve worked as a nurse managing intensive care for more than five years, and I’ve worked in various countries, various ICU settings. That’s going from paediatrics, to cardiac ICU, to neuro ICU, trauma ICU. I’ve done the whole works, really.
You can also find my LinkedIn profile here
Steven: So based on what I’m telling you, what do you think his … I mean, you can be honest with me. I’m a strong willed person. What do you think his chances are of at least surviving? Forget about the quality of life for a second.
Patrik: I think the chances for survival are pretty good, and the reason I’m saying that is that the statistics in ICU say that 6% to 10% of patients in ICU die. That means that 90% to 94% of people survive. Now, that statistic is not talking about quality of life, right? That statistic is pure survival and leaving intensive care alive. I would never trust if somebody says, “Oh, his survival is one in 100.” Is that what you’ve mentioned?
Steven: Yeah, they think it’s less than one in 100.
Patrik: And how-
Steven: Given multi organ failure and what’s going on, but my point to them was if he had the cardiac arrest and he didn’t die. I mean he had all these problems. He went into … He had a fungal infection, and he didn’t die.
Steven: So, you know, if he didn’t die then, then what’s … Are you still saying he has a less than one in 100 chance of surviving? I don’t know. It seemed to be a little strange. Most ARDS patients, from what I read, they die within the first two … If they’re going to die, they would die in the first two weeks or three weeks.
Patrik: If ARDS patients do die, they do die relatively quickly. That’s correct. That’s certainly correct.
Steven: That’s right.
Patrik: Any ARDS patient who have gone through what your dad has gone through so far have certainly shown a lot of resilience. Yes, there have been some ups and downs, but on the other hand, from a family perspective, you want to make sure every angle, or your dad’s case is being looked at from every angle, and everything has been done to maximise his chances of survival. Would that be fair to say?
Patrik: Yeah, yeah. They’re now all of a sudden after more than a month in ICU, they’re now saying, “Well, he’s going into multi organ failure. He’s had a cardiac arrest. Now may be the time to get palliative care involved.”
As I mentioned before that may well be the right thing to do, to have them on site in case your dad is deteriorating even further. Then it’s probably good to have palliative care involved, but to not try in the first place would be futile I think.
Patrik: The other thing that you always got to keep in mind as well is that after more than a month in ICU, they’re now probably … They push for beds. They think, well, what if we treat your dad for another two weeks and nothing’s going to happen. He might die. That bed is being occupied, and other patients would have been treated by … Those things are certainly going through the mind of the ICU team, so you got to keep all of that in mind as well.
Steven: Yeah, as far as push for beds and …
Patrik: No doubt about that. No doubt about that.
Steven: He says … So, putting aside the quality of life, you still think he has a shot?
Patrik: Oh, absolutely. As long as he’s alive, there’s definitely hope. Just remind me, how long ago was the cardiac arrest again?
Steven: Cardiac arrest was last week. Last Thursday night.
Patrik: Thursday night, so it’s now Thursday, so it’s a week. Okay.
Patrik: Do you know if prior to the cardiac arrest whether he’s had vasopressors/inotropes as well? Do you know any of that?
Steven: I can find out if he had vasopressors/inotropes. I can find out. I know he did have some blood pressure medicine. I believe he did.
Patrik: Most likely he would have, most likely he would have.
Patrik: So, I can tell you we were working with a client before Christmas where the situation was very difficult, and the ICU was pushing towards withdrawal of treatment very early on. It was a different story, in there was no ARDS. It was sort of a bowel infection that led to a prolonged intensive care stay. That patient in particular was on vasopressors/inotropes for a long period.
When I first started working with his family, I really thought that patient would die. I really thought that, just by everything I knew, and when I was talking to the doctors and what not. I can tell you that the client stayed in ICU up until … from basically until the end of November until mid January and left ICU alive. So you never know what’s coming out of those situations. I would never promise-
Steven: What was the client’s condition? He was male or female?
Patrik: It was … he was 62. He was a gentleman. He went into hospital with a rupture of his bowels, and they had to do emergency surgery and what not. He ended with multi organ failure. He ended up on dialysis. He was on vasopressors/inotropes, and they maxed out vasopressors/inotropes at one point. I thought, okay, well, they’re doing everything they can, but they’re maxing therapy. Almost miraculously, he pulled through. He wasn’t probably the first candidate to go into hospital in the first place. So you never know what’s coming out of those situations. You just don’t.
I guess, just that statistic, that 90% to 94% of people survive ICU, should give everybody hope who is in a similar sort of situation. Right? Those are my thoughts.
Steven: This is a … I’m staying at the hospital every day. I’d like for you to at least talk to the attending doctor some time maybe today or tomorrow or something. Get a full understanding of the case and everything.
Patrik: Ok great, just let me know what time you want me to talk to them and I’ll call in!
Patrik: Again, it would also include if you had a family meeting tomorrow, and you wanted me to dial in at whatever it is, 4:00 p.m., then I’ll dial in. That’s not an issue. So, it’s really that type of service that you can get, and you know you can call me pretty much anytime. I can call them when you want me and that sort of stuff.
That’s really what the service is. Initially, it would really be me finding out what’s exactly happening, and then you know, I see this service also as an advocacy service, if I think that’s how you want me to talk to them, as an advocate. Again, I would need to find out a lot more about what type of vasopressors/inotropes he’s on, about his recent chest x-rays, about his ventilation settings, about what the echocardiogram of the heart shows, blood results. So getting the whole picture and making sure they are continuing doing the right thing.
Steven: Got it. Got it. Okay. All right, so let me talk to my family, and let me call you back. I’ll call you back soon, and we can figure out when to move forward and everything, okay?
Patrik: Fair enough, fair enough. Thank you so much.
Steven: All right. Okay. So I’ll call you back, okay?
Patrik: Yep, yep. No worries. Take care.
Steven: Okay. All right. Talk to you soon.
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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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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