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Sedation and immobility impact more than patient outcomes in the ICU. Family members also suffer the isolation, burden, trauma, and loss from sedation and immobility in and after the ICU. Families are also at risk of developing post-ICU syndrome themselves.

Nonetheless, they are left unprepared to care for their loved ones who are suffering the damage of sedation, delirium, and ICU-acquired weakness while struggling through their own personal trauma.

Stefan Becker, a professional psychotherapist, shares intimate insight into the journey he and his wife have suffered in the ICU.

Episode Transcription

Kali Dayton 0:05
This podcast has been dedicated to perspective changing our perspectives as clinicians through understanding the perspectives of patients and survivors. Another perspective that has admittedly been neglected throughout this conversation is the perspective of families families also suffer from Post ICU syndrome.

They are also deeply impacted and traumatized by sedation and immobility. And after the ICU, they are left isolated from their loved ones stuck with all the huge decisions of the ICU without input of their loved one, they often lose so much of the person they brought to the hospital and they are left in the dark solely responsible for trying to pick up the pieces of shattered brains, bodies, families and souls when they take their loved one home.

I’m so grateful for the insight of a brave family member Stephen Becker, who shares with us his experiences in this episode. Stephen, thank you so much for joining us on the podcast. I appreciate you reaching out and being willing to share your journey. Can you introduce yourself to us?

Stefan Becker 1:47
Sure. My name is Stephen Becker, licensed mental health counselor in Boston mass. And I’m also spouse slash caregiver to my wife, who’s double lung transplant recipient. And, and re recently went through a pretty critical pneumonia and was in the ICU for a long time. Other than that, there’s been really no not much critical illness since her transplant, which was 24 years ago.

Kali Dayton 2:24
Okay, so she had transplant 24 years ago. And then just recently she developed pneumonia, which can happen to anybody. Right. And she was intubated.

Stefan Becker 2:34
Yeah, she she was we knew about the pneumonia. We probably didn’t act on it as fast enough. On a medical floor first. You know, her ability to breathe was less than less, you know, after trying everything BiPAP. And, and it’s interesting when they when they said we’re going to transfer you to the ICU. And this was, this was her transplant doctors who I trusted.

I did not know what happens in the ICU, in terms of just because under hadn’t been on a ventilator, since the transplant, but I think they assumed we’ve been through a few times because lung transplant patients sometimes are on and off them. So they just say, you know, in the ICU, she’ll get better care. And then, you know, we got down there and well, I think within 45 minutes of trauma for me. She was ended up intubated. And then 14 days.

Kali Dayton 3:35
Yeah, she was automatically sedated.

Stefan Becker 3:38
Automatically.

Kali Dayton 3:40
Was there any discussion with you as far as the she wanted to be sedated? Or here’s why we had to sedate her here at the risk with the sedation.

Stefan Becker 3:47
None. The only conversation I had with the anesthesiologist was about, you know, allergic reactions. I think I think I was I asked about, I think, I told them, she doesn’t do well with general anesthesia.

And we’re always careful because of respiratory issues. So with smaller procedures, we try to avoid it. And I think he might essentially, you know, for this, patients are fully sedated. We’re not concerned about that she’ll have the shell of the breathing tube.

Kali Dayton 4:22
So we don’t have to worry about respiratory depression. That’s the only risk of those medications.

Stefan Becker 4:28
Correct. And the message to me was if we don’t if we don’t do this, we need to save her lungs. We need to do the breathing for her right now. Yeah, that is until they could figure out what was happening. We actually didn’t know what was, what the pneumonia was exactly what the bacteria was. All that

Kali Dayton 4:47
which is true. I mean, the ventilators are life saving, especially in that situation. To me that, you know, reveals this under this assumption that we have to turn off the brain to save the lungs all the time, every time no questions asked, Did they ever refer to this as sleep? sure that she was like me.

Stefan Becker 5:08
I think that I mean, there was the initial that night, you know, and kind of bringing me back in. And, you know, seeing her intubated, and just the assurance that she’s, the focus was on her breathing, and on the ventilator settings, but that she was comfortable, and that they that they had something, you know.

I don’t know, like hooked up that could kind of monitor brainwaves or brain activity to suggest whether she was in pain or having agitation or something like that. I’m not sure. And they said, so we can see whether she’s having pain, and she’s not she’s not in pain, and the focus was on her on her body, I’d say there were several nights where when I would call the ICU, like any nervous husband in the middle of the night, and ask how it’s how it’s going.

You know, it was always “she’s sleeping comfortably”, you know, there’s conversations about waking her or bringing her out of sedation, you know, down the road, I think they might have been trying. But I didn’t quite understand that they weren’t really explaining what that process was.

Kali Dayton 6:31
And were you allowed the option to stay overnight.

Stefan Becker 6:36
I was not. I would not have wanted to, it was so hard for me to see her on a ventilator, because I knew that that was her. Probably her worst fear just as a lung transplant, patient and just, you know, other transplant, friends and communities knowing that when you’re on a ventilator, it’s hard to get off.

And so that was her biggest concern, and that she did ever go on and on it would be for a second lung transplant, which he’s been followed for, for re transplant. So I knew that. While this was necessary, I was very conflicted, that she was on it that I felt responsible for. Even though they did ask her when she was conscious, you know, this is what we want to do. And there’s no choice.

Kali Dayton 7:33
But all the decisions from then on out were in your hands.

Stefan Becker 7:36
I think so yeah.

Kali Dayton 7:38
She didn’t get in those discussions anymore.

Stefan Becker 7:42
No, after that. After that kind of traumatic, right before telling her what needed to happen. You know, she’s like struggling on the BiPAP. And her breathing, oxygens. saturations low. After that, it was all me feeling my way through it. Any procedures that they did, you know, while she was sedated, I would love to approve.

The only thing that I kept saying was that if you guys are going to do anything, like waking her up, or whatever you call waking her up, I want to be there. And I like just Dr. So and so to be there. And I’d like this person to be there. You know, they need to be there when she wakes up or, or it’s going to be very traumatic for her.

Kali Dayton 8:34
And it’s likely to fail. That was good instinct. A lot of times when we do those waking trials, it’s five in the morning with no family present. So that was really intuitive of you to know that you needed to be there and make sense as a family member. But it goes against a lot of our routines and the ICU unfortunately.

Stefan Becker 8:56
I mean, I think they did do them. I wasn’t I wasn’t there. No, ultimately, I was, you know, still had to come in at the beginning of visiting hours, with the exception of a few mornings where I really push to get in there before rounds, because I wanted to talk to the team, or whoever the President was that we can start to feel out how this was working.

Kali Dayton 9:22
Yeah, you shouldn’t have to fight like that, you know, to navigate that. My vision for the future of critical care medicine is that we don’t have visitation restrictions and that families are part of rounds. There many teams are doing that, that the family is part of the ICU team and present during those discussions. Right.

Stefan Becker 9:42
And I probably could have navigated through that just with my own, you know, limited rest of pulmonary experience, but disability to kind of speak clinical language for my training, but I don’t know that I could have completely removed myself emotionally from the things I have to do.

Discuss in rounds, you know the options. Because I was also attached to what she was going through. I was very focused on what is she aware of? And is she struggling? So I had I have set up music playing in there all the time. And like constructed each I see new, I see a nurse if I felt like they were going to go along with it.

Like, okay, here’s here’s her. Here’s her phone, if you could play this music, or you can, here’s an iPad, you can play this movie in the background, just in case, you know, I think I had like her favorite like Teddy Bear there. And I just thought of it as being deeply asleep.

Kali Dayton 10:48
Yeah, that’s what you were told how? How would you know if they don’t know? How would you as a family member? Now?

Stefan Becker 10:55
The line that I kept hearing was sometimes patients remember things. So that was that would be the answer to any discussion about that. And so at some point, I started playing like, you know, mindfulness meditations and just playing them there. But I was very concerned about those weak trials. I wasn’t there when when they happened, and I know at least one or two of them didn’t go well. And then decisions were made about what was going to happen with her

Kali Dayton 11:35
wakening trials, right? That’s really common. We set them up in this way that the families aren’t there, there’s no way for them to really reorient or come back to reality and to not be agitated,

Stefan Becker 11:50
agitated, like, what exactly does that mean, from the clinical side? Clinical side because agitated and obviously aroused, aroused was the other. And so I thought, when they said, aroused, you know, we we tried to lower the sedation, and you probably know the things that they lowered, and they were looking for arousal.

And I thought, Is that are you talking about, like her nervous system? Like she’s starting to react to the tube in her throat? And they said, No, we’re looking for arousal of the body, like having a stress response her heart? Are there areas that we can indicate whether we should? Whether we couldn’t do the waking trial? They kept assuring me it’s not about consciousness, you know? Because that was my focus.

Kali Dayton 12:40
Yeah, this is where it gets. So sticky. If we’re looking at evidence based practice versus cultural understandings of what is happening, what should happening happen, different opinions about the objective of those awakening trials. So when I say agitation, I mean, what the literature says, which is, agitated is defined by a RASS greater than two, and that’s when patients start to pull out their tubes and lines, aggressive fours, when they start to try to hit other clinicians, they’re really getting into dangerous behavior.

But clinically, like at the bedside, culturally, we say “agitated” if they start to move, and they look uncomfortable. But the point is awakening trials should really should be, do they say physiologically stable? Once sedation is turned down? I mean, do they actually have movement

But if their heart rate goes up, it could be because they’re anxious because they’re scared, because they’re in delirium. And so just because our vital signs change doesn’t mean that they’re unstable. It can be a sign that they’re in trouble that we need to work them through that delirium, but that’s really misunderstood to a lot of our, our teams. So what happens is, we see changes on the monitor, and we turn sedation back on.

Stefan Becker 14:00
Right, like blood pressure and things that are not going the direction you want.

Kali Dayton 14:04
When, when really we should not be using sedation to control vital signs. That’s not an indication for sedation.

Stefan Becker 14:11
Right. So well, the other piece, yeah, just gonna say the other piece that I think was was explained to me is that when she does come out of sedation, she’ll still be comfortable because it will still be giving her things. I don’t know, just fentanyl or Dilaudid or something for any pain or just comfort. Yeah. So that was about the, I mean, I stopped looking for reassurances that this was going to be comfortable because I knew when she came out of this it was going to be I mean, ultimately, they didn’t bring her no sedation until the switch to a trach.

Kali Dayton 14:49
That’s very common. There’s a belief that we can’t or shouldn’t take sedation off until they have a tracheostomy that somehow this trick Yasumi makes this a safer, more feasible process. And that’s definitely something to be discussed because that I have a whole thought process on that. I mean, there’s not those. There’s no evidence behind that.

Stefan Becker 15:11
But I’ve seen that you made the point, though about being restrained. I want to ask you about that, because, because that became a focus of whether when they were going to try waking her, and I think I was asked, you know, multiple times, nurses, and then the fellow the next day and the president the next day, and then about, for what was my experience of her coming out of being on a ventilator in the past?

And did she try to rip it off? And so, first, we’d have to get through the she hasn’t been on one for at the time, 23 years. And they couldn’t understand that then. Then I’d say, so it was a very different system, different medication. It was the hospital across the street, not here.

I said, and from what I know, from what she’s told me, because I wasn’t with her, it was traumatic, she did try to pull it off, there was a she had a bad experience with a nurse. And that’s about all I remember. And they really took that information. And put started putting in a plan that like restraining that she was going to be this do that,

Kali Dayton 16:29
Like a high risk patient, we had to really prepare her to keep control.

Stefan Becker 16:34
And I did not want her to wake up restrained just psychologically. So I struggled with whether I should have shared that. Because it was a whole different experience. Like from like, she’s told

Kali Dayton 16:50
me they saw her. Her they ever talked to you about delirium.

Stefan Becker 16:59
Delirium? Briefly, they would reference it as if I already knew there might be some delirium. So it would have been it wasn’t there was never a discussion of like, your loved one is going to be in this state of delirium. And this is what you should expect. He was a lot more. What? Why is she behaving that way? Why is her mental status like that? What’s wrong with her eyes? Why can’t ….and then they would explain? Well, it’s still delirium. So I kind of learned as I went.

Kali Dayton 17:35
Was there any discussion about what that could mean, to her life psychologically, cognitively?

Stefan Becker 17:43
No. No, I wish there had been, I mean, I don’t know if that would have been the time and place for it. But it, you know, now, now that I know, the impact of delirium and the sedation. I mean, I already knew that she had had memory loss from the few times that she had general anesthesia procedures.

So for this, I assume there’ll be some there’s gonna be some kind of memory loss, or something. I had no concept of a brain injury, delirium? No, I just thought that that’s like a temporary state of coming out of a heavy drought. And then it clears up.

Kali Dayton 18:24
And that’s likely what your clinicians understood as well. I’m sure no one was trying to withhold information, or leave you unprepared or in the dark. That is what we believe at the transient confusion and agitation. And as they get better, the as their body gets better, the brain gets better. That is a common…

Stefan Becker 18:46
language…. something “the paralytic”, I had not heard that term before. That became part of every conversation, whether the paralytic had been lifted, or tried taking her off of it, and then putting her back on. I understood that that was I was more focused on how that was going to affect her body and like muscle loss and that not much No, there wasn’t.

I mean, they’re a great team, but there really is not much discussion about neurological impact. Now that the lungs right, everybody was focused on her breathing and the lungs. Exactly. I was concerned she wouldn’t quite know. I was concerned. She’d be confused when she woke up. So I went out of my way in the family like we plastered that ICU room with photographs of her life.

And, and I have to say there was some you know, case managers and people who didn’t understand her journey that she was still planning on getting another transplant that she was like fully functional before this. And they look at her chart and they think all This is a chronic ventilator patient, they must have one at home, or I guess she’s going to a facility after this. So I there was a lot of educating I had to do out in the hallway, and advocating of hers, her story.

And I put up all these articles that she had done interviews in town, they put them right on the glass doors, and just kept pushing to everybody, that she was a unique, you know, transplant patient. And this is just this was an interruption. This was not, she’s not an end of life. That those were some of the mornings that I went in for rounds, because I needed to speak directly to some of the team. Yeah.

Kali Dayton 20:48
And I, I certainly have been guilty sometimes of seeing a patient as a body in the bed. It’s so easy to turn into that, especially when you’ve worked here in COVID. And you saw so much of it. So that was like, again, really good instinct to try to help everyone understand who she is. And again, that vision of this is someone that lived a functional life before. And that’s what we’re trying to get them home to.

Stefan Becker 21:17
Yeah, I think they didn’t think that was possible. I mean, cystic fibrosis, you know, 23 years on, I mean, compromising drugs. I mean, sure, there’s, it looks bad on paper. But I really had to kind of fight my way in to stay on top of what decisions were being made. The ICU nurses were, were great, and that they were much more I had direct access to them, I could call them.

And they really liked me and the people we brought in. And they also all agreed to wear and 90 fives at a time when the team was past that COVID Rush, you know, our crisis. So they were not wearing those. But I needed to keep I needed to keep my wife totally protected. Because they were COVID exposures in the ICU, and I didn’t want her to be one of them. Because we had avoided it for three years, you know?

Kali Dayton 22:17
Absolutely.

Stefan Becker 22:18
But the I remember talking to some doctors who knew me and they are Stephen, you have to you have to trust that the team has, you know, done this and the they know how to handle like the, the plan for her after the ICU. And they’ve done this before. And you know, if her lungs are in this kind of shape where the pulmonary rehab will be and stuff like that. And I had to say to them, actually, no, I don’t trust them. I’m hearing that. She’s being portrayed as a certain kind of patient.

And what it was, was the ICU nurses were telling me that they were upset. I think they all got together and they had like a kind of morning meeting. And they couldn’t tell me directly what they did say, Look, we went to the case manager, and the charge nurse, and we said does not how we see her. She’s not one of those patients.

And I didn’t know quite what they meant, but I’m sure you do. And I said “yeah, she’s not one of those things.” And then I started like showing them videos of her doing six minute walk tests, like the day before we were in. You know, it was it was a battle. And in all that, I think I missed some of the delirium. Preparation, because I was so focused on honestly, is from saving her from certain directions.

Kali Dayton 23:51
Yeah, there’s so much going on that moment. This is probably one of your first times in the ICU. Totally new role for you and the circumstances it is absolute and life or death in that moment. And then, if the team doesn’t really know, the reality of all of this, how can they give you a heads up? We’re helping you understand what I mean? They’re calling it sleep, sedation sleep. They really don’t know what’s going on with with the brain during that time. So did she have delirium?

Stefan Becker 24:25
She had a lot of delirium. And she’s had a lot of memory loss. I mean, since then, changes in mood. I mean, things that things that in my field, we would say are like, personality related character character illogical. But these were changes in not just what she could remember, but the way she interacted her effect and things. But that was just I mean, that was I’m talking months after.

Kali Dayton 24:58
Right? Not when she first came out of sedation. In your first conversation,

Stefan Becker 25:01
It was just, she just looked Yeah, like she’s waking up, heavily drugged or drunk. But there was another thing going on, which was that the first thing she wanted to do when she woke up was get out of bed and walk.

And she conveyed to me that the only way she was going to survive, like she knows, you’ve got to start moving. So we started advocating for PT in the ICU, which was not like a thing they did. Like, they did start, right, they did some moving to the chair and using commode and all that. And then that’s it, you get discharged, and she wasn’t being discharged. So we started this whole campaign of getting physical therapy to go down there more times, I think, than they usually would.

Kali Dayton 25:47
Good.

Stefan Becker 25:48
And because she was there for so long, she did a lot of her PT in there. Which I could see what’s confusing to a lot of like, why is that patient still here? If she’s walking around the unit floor, playing her favorite, you know, mix, and the nurses are dancing with her while she’s still here?

Kali Dayton 26:07
When I post pictures of people on a group of 18, 100%, Walking on the unit, people say, Well, why aren’t they extubated? I have to, and I specifically will put those ventilator settings so that we don’t get those questions. It defies what they’re used to right? Being sick equals sedation equals a mobility.

Stefan Becker 26:25
Right.

Kali Dayton 26:26
But the fact that you can be sick, and so walk just hurts their brains and again, because we’re not trained that way. Mobility is not seen as medicine the way that it should be.

Stefan Becker 26:40
That’s, that’s interesting, because, you know, to the pulmonary team, that was the focus, “let’s, let’s test her lungs, let’s get her lungs functioning.” I will say at the end, what wasn’t focused on at all was the mental health status.

I mean, she had one focus whether she was having crazy thoughts or not what she’s told me now she said, she had awful, just like awful traumatic ideas of what was going on, including that I was coming in and hurting her.

And we would come in and just focus on “That’s great!” You know, “You’re moving or you did this, you did that.” And I think for her, it all became about getting out of here and doing as much movement as possible. And she didn’t tell anybody about her. She tried to tell people about the thing she was experiencing. No one understood.

Kali Dayton 27:33
what she was trached, could she communicate?

Stefan Becker 27:39
Not for three months. I’m so I mean, she could communicate. I had whiteboards everywhere, like everywhere, and they insisted they use them. And I brought in all types of other like adaptive things like an iPad with a voice. And I didn’t know that she wasn’t going to be able to lift her fingers to control it.

Kali Dayton 28:02
And your wife that you were just doing a six minute test, walking test right before. And so you expect her to just wake up and be herself and move.

Stefan Becker 28:17
Right? And take over her own. I mean, she’s, she has a lot of medical like agency. I mean, she knows her stuff. So it’s rare that I’m making decisions for her. I mean, we’re a team, but she makes the choices. And she knows the meds right. But this time, she couldn’t do that. So I couldn’t hand I couldn’t like hand it over to her. And there was this.

Yeah, I’m just curious of is she is her mental status clear enough to be making these choices? And I had TO really advocate. “Yes, she she is getting to that point.” Because she wanted to have some some say and where she What happened to her for her long term rehab, which was going to like a really well known.

I mean, there’s many small things all over Massachusetts. So you can say Spaulding rehab. But she wanted to have input about that. And I think it was questionable whether they felt her mental status was clear enough to advocate didn’t come out for the treat came out like five months later and I’d say at three months. You know, the ICU was about two and a half months. And then we went to you know, what do you call it

Kali Dayton 29:47
LTACH

Stefan Becker 29:47
thank you. And and honestly they neglected her there there was just really bad they they thought she was not ambulatory so they had her all set up for like no movement. And so her Peterlin life, they’re right on a special kind of like bed and like nothing was set up in the room, no chairs, nothing for moving.

And it took me like three days just to convince them that when she was at the MICU, she had been doing all these things, I had to show them videos of her moving and everything. And they, in those three or four days that she didn’t move, she developed a pneumonia, and then went back to the MICU.

I was so upset that the second time they wanted to discharge her to the same place. I forced everyone together on a Zoom meeting. And there’s a little bit tricky, because the sort of the rehab facility wanted a commitment that I for me that if she was coming back, that I actually knew that one of the possibilities was she would go home on a ventilator. And she wasn’t going to just be able to stay there. Because they had had families who leave their family members there. And there was going to be limited time for PT. And so you is a little

Kali Dayton 31:14
To preface… you’re going there. No intention is really to rehabilitate then just just know don’t expect us to actually get her better.

Stefan Becker 31:23
I couldn’t I didn’t understand because here she’s now traumatized. Like she comes back to the ICU. Yeah, crying and scared at night of things that happened at night. And the ICU nurses were saying like, “This is…. something like this was our patient two weeks ago, it was like, what happened? What did you get what happened to her? She’s very different now.”

And she’s very scared and they can stay started treating her as if she had been like traumatized. Things that went on over there in her delirium, but that I was somewhat aware of. And so the facility wanted to do like a telehealth session with me and a family member.

And I felt really overwhelmed and intimidated, like, this was gonna be a lot of administrative people, like just clinical. And I was gonna have to agree to things. And they also were going to ask me, what changes what I like when she comes back. So I had like, I shared the link was like seven people, to ICU nurses, like the director of pulmonary critical care, the director of the ICU, the director of the transplants division, like when that meeting started, there were so many faces, that they did all the advocating.

They had a list of things like here are the things that we need for Mrs. Becker. We need this kind of PT, we need this. In this we need this with medication and it was pretty powerful. Wow. Just to get her back, like all that happened, and when we got back there, so yeah, it was it was very different.

Kali Dayton 33:03
It would happen.

Stefan Becker 33:06
When we got back there was like, a solid mattress. There was a walker in the room, there was a chair there was already sessions for like, respiratory therapy, setup, physical therapy, setups, speech therapy, was all

Kali Dayton 33:19
focused on rehabilitation.

Stefan Becker 33:21
Thank you. Yeah, I was seeing all that focus. I wasn’t focused on her delirium, I was focused on like saving her. Like to get to the right place.

Kali Dayton 33:33
But you were doing the right thing. I mean, the physical part of it is such a key elements of delirium. If you hadn’t thought if she hadn’t thought to be moving in the NICU, you certainly wouldn’t be moving in rehab. But if you hadn’t been out of him for that, there would be no real tools to treat her delirium. Without that key mobility. Okay, me I see that. I see that it was prolonged and exacerbated her delirium to just be sitting in that bed with a plan to leave her as a chronic vent patient.

Stefan Becker 34:05
If she ever if she had known, that’s what they were thinking, like I had to I protected her from hearing that with the exception of one pulmonologists, who got past me 7am. You know, eventually she went over. The team at the rehab certainly liked her. And they started to hear her story, the pulmonologists were rotating. And so they wanted to invest in more PT you know, more movement. Taking out the trach just that whole process I had I was bringing our dogs there.

I like advocated and made them therapy dogs and got them like registered so they could come in. So, I think I told you that then I’m just two weeks ago, we were back in the The ICU she was in for sepsis, or septic shock. So here we are, like, I don’t know if you want this as part of the podcast, but I’ll just say that it’s been, you know, it’s been this year of learning about, first of all, learning what pics is, and having to, like keep telling the team. Now in an outpatient status, you know, we’re both struggling with post ICU syndrome, what services are you guys offering?

And they didn’t, they had closed down their huge program. After like post pandemic, they were, I guess just exhausted or providers needed to get back to their other work while other hospitals in the area still had the programs running. And I can see that, um, she needed. We’ve all seen what she needed to be meeting with people on neurology psychology, mostly.

Kali Dayton 36:06
You’re a psychotherapist.

Stefan Becker 36:08
Yeah.

Kali Dayton 36:09
What is it like for you to see? Like, what what kind of symptoms were you seeing in her? And what was it like to see that and go untreated?

Stefan Becker 36:17
That was very hard to see, go untreated. Because I knew that even just some talk therapy, just, you know, just being able to explore her experience, like in a safe setting with somebody, not just me, because I had a lot of baggage attached to, I mean, there’s, we would talk about it, but a lot of trauma was coming up for me.

And so I was doing my own trauma work and EMDR and things around what I went through because they they were affecting how present I could be with her. And when I looked to like, well, there must be programs that could give her some kind of support. You know, their program ended. And also I don’t think that she wanted to do it, because because they didn’t introduce it while she was in there.

And I know that other hospitals do. There was no continuity, like with the providers. And so when it was the idea of bringing it up later, was just a little bit traumatizing for her what something about the ICU? No, I don’t want to talk about that ever again. Let’s just move forward. And two of our pulmonologists were on the PICS team. They were running it.

And they I mean, they told me we’re sorry, you know, the funding the organization of it just kind of ran out. It’s there’s nothing happening now. She could schedule some appointments, outpatient with blah, blah, blah. And I say no, we need that we need the glue of what you guys created that whole thing. And then I and then I started trying to like get her into programs and other hospitals. But that would have made a huge difference. Like I had to learn all about post ICU syndrome online. And from books and podcasts. And it started I started to put together what was happening to her.

Kali Dayton 38:19
And how long after it was happening. And you guys were both

Stefan Becker 38:24
suffering while suffering. So this so So two weeks ago, she had a kidney stone, like blockage or kidney stone that was blocking her, you know, I definitely did not expect to be going to the the ICU like we had discussed how hard it would be just for her to resume outpatient visits. And every every thing we did was a huge moment.

Kali Dayton 38:56
Like a significant milestone she was facing

Stefan Becker 38:59
The first time driving up to the hospital. Yeah, the first time walking the halls the first time. Exactly. And I would say Luckily, she didn’t know she was going to end up in the MICU. Again. Yeah, see, I mean, our blood pressure was like 40 over 20. And there was gonna have to be this, you know, emergency surgery to put in a stent. And I immediately it was like, so we’ll be using general sedation and you know, there’s the risk of respiratory depression. And I said, “No, no, no, she doesn’t want that. I can tell you that she’s gonna want it.”

Kali Dayton 39:38
Local anesthesia because she’s done this in the past with other stones, or a spinal block or something, but no general, because then you might have to intubate. And one of the doctors in the ER said, Well, I mean, she’s going to the ICU. Anyway.

That way, “I know where that goes.”

Stefan Becker 41:07
This is such a complicated patient, so she has to go to the ICU. And we have to do what’s best for her. And I said, right, so also what’s best for her, I said, is not re traumatizing her. This is a patient who’s still just now hitting milestones with post ICU syndrome, suffering from a lot of c stress and in treatment for it.

So we’re not going to send it right back to the MICU and intubate unless it’s absolutely required. And that created, it slowed things down. And then and then there was like, word that family members refusing. And so then they started having that question that discussion with me, are you refusing, you know, this hasn’t she signed? And they asked her to, and she was in so much pain, you know, at the time, and the surgery went well, and when we got to the MICU, um, I just I could not believe we were there. Same floor.

I mean, we you know, after you’re in there for a while you have attachments with everybody. Like he really missed those nurses and stayed in touch with many of them. And they followed her on social media, and she wrote a blog about her experience. And so I thought, well, at least it’s familiar. And this has nothing to do with pulmonary. So there’s no reason there’d be any kind of talk about

Kali Dayton 42:38
The ventilator, or going back in there sedation, or right for

Stefan Becker 42:43
major sedation. And the whole night. I just kind of stayed on top of that. And I don’t know it was really strange Kelly because that night, I saw her after surgery and she was herself. I didn’t know they had used propofol and fentanyl. I would have asked not the proper false or would have she she would have said that too.

Kali Dayton 43:08
She seemed very lightly like like a colonoscopy. Probably.

Stefan Becker 43:13
Yes. Right. cystoscopy, I think. So I thought, okay, we made it. And then that night, the ice calls and says, they want to have the conversation with me about integrating. And they said that they had gone in and gotten her permission. And that was just like, it all came back. I think this time at least I knew how to advocate not to do it.

And when I went in the next day, that was the every resident and fellow who came by was concerned what why is the family member resisting sedation, and I used to say the same thing about pics. And I look at their faces when I would say, “post ICU syndrome. Yeah, that’s a real thing.” They say, “Yeah, that is a real thing. So what we’re gonna have to do…..” and like they would just move on.

It’s almost like, they can’t talk about it. I really felt like I wanted to talk about post ICU syndrome and how does re intubating her? How, how can we approach it differently? and that nobody wants to talk about

Kali Dayton 44:25
Because we hear these terms at conferences, we read it in journals. But that’s different than talking to survivors, being a family member, being a patient and survivor. Those are very different perspectives. And there’s a huge gap in the clinicians and the survivors. S

o you know, these organizations are pushing forward this awareness but it’s still not enough to really say, for clinicians to recognize the role that we play in causing that. Right there. I see it causing, they’re saying sedation asleep, and that it’s essential for anyone on a ventilator and that physical therapy for the back end only for rehab, they’re surprised that they really don’t quite understand

Stefan Becker 45:11
That we’d be like, “yes, you’re right. You’re giving me new patients saying that they’re suffering from post psychotherapy, trauma. And then I do the psychotherapy differently.” And then I will we cause the trauma like our fields caused it.

Kali Dayton 45:26
And you’re like, “Well, I don’t know what else to do? I mean, it’s just, I just have to therapize them that way. Because that’s the way I know.”

Stefan Becker 45:33
Yeah. And it’s very simple. What was going on that her kidney? What to call Hypercarbia like that…

Kali Dayton 45:43
co2 is high,

Stefan Becker 45:44
right there, co2 is high. And when we see those numbers, like we worry, like, it was really high. Yeah. And so immediately, they’re like, We need to intubate to save her lungs, we don’t want this to go to the heart or, and we’re trying to get a handle on the infection. Luckily, I knew a lot of the people. And I just started dropping first names all the time to interrupt the process. And I think I had like three outside the glass door discussions about holding off on intubating.

And that this was a patient, they were not going to be able to get off a ventilator easily. And that this was a patient also it was being followed, like for post transplant for another transplant. And and her transplant, pulmonologist didn’t agree that this needed to happen. And I kind of learned that there’s the McCue is its own entity here. A lot of power to in the can make things happen quickly, I think, which is great.

But they can also like, run the site themselves. And they did you know, a couple of times, right in the middle of a discussion, I would dial you know, the medical director of transplant, say, hey, you know, just this conversation is going on? Can you just join us with me? This is Dr. So what’s your name, sir? And then I put them on speakerphone, and they would immediately change their tune. And every time it was basically just kind of cordial.

Like, respect what you’re doing and then MICU, and why don’t we hold off on intubating? And try this in this? You know, or we’re watching her numbers over here. And we’re happy with this. We’re not concerned about let’s just not do that yet. And I, I did that quite a few times. Sometimes they knew each other. Were like, “Oh, hey, man, yes, me.” you know, they’d say their first thing like, yeah. And I still good, they know each other, they’re going to talk like common sense. And they’re not going to treat me as this crazy husband trying to stop this from happening. Definitely, I think it would have happened. Because that’s what they’re good at. That’s what made sense to them. Right?

Kali Dayton 48:02
That’s, that’s the conveyor belt. And it’s hard. It’s hard when you have a sick patient and you know there are risks for not intervening quickly enough and things like that there’s a lot of considerations and understanding that kind of history without an understanding picks, or delirium are the real repercussions of sedation and mobility. It’s really hard to make those decisions in an inappropriate way. When it’s just this is the band aid for now, without knowing all the complications they sign the patient up for do you make those decisions? And then as if a family member does understand that they get labeled as a “crazy person”.

Stefan Becker 48:40
right? And because we didn’t, because they didn’t know, it was questionable, like what was if there was a secondary infection. So there was the urosepsis. And the retreating that and blood cultures were negative, and then they’d be positive again. So there was a question about whether an infection had gotten to her brain.

And for each one of those things like MRIs or doing more tests, again, they would make sense to put her under General and a breathing tube. And so I’d have to weigh this post ICU experience with does she really need this intervention? And do a lot of like hurrying and rushing, trying to get people’s opinions and you know, ultimately, a lot of those things weren’t done, because they would have had the integrator for them. And ultimately, you know, it wasn’t meningitis. It wasn’t encephalitis. I mean, some of the procedures were done in but I was like, “Oh, my God, this is…”

Kali Dayton 49:45
You were the only one that saw those medications as dangerous.

Stefan Becker 49:50
Right. And the oh, they kept saying the reason we want to do this is because she shouldn’t be this delirious. It’s been three days we’re concerned about her mental status. It’s been four days. She’s in delirium. And I would go in and interact with her and yourself within her mental status was off. And they come in every morning and do the, you know, can’t tell me every day backwards after Wednesday, and you know, the mental status quick mental status exam.

Where are you? Who’s the president? What year is it? Days of the week. And sometimes she could not do that. And she was aware that she couldn’t do it. And she was upset. I couldn’t understand why she was still off. Some of them were saying delirium. And others were saying, “Yeah, but she wasn’t on a lot of sedation for that procedure. So why does she have delirium?” And they left it up to me. Right? So then others were saying, “Oh, there’s, there’s sepsis related amnesia, or there could just be delirium from the sepsis.” And I went with that. But they were like, looking for other things that would have led to,

Kali Dayton 50:57
It’s hard. Yeah. When you don’t? Even if when you do, there are so many things that can affect the brain during critical illness. It’s not that you don’t,

Stefan Becker 51:03
you’re like, “It’s so obvious. It was sepsis.”

Kali Dayton 51:06
Yeah… I just, you know, I get back into Southern Conference, we’re talking about the inflammation and crossing the blood brain barrier, and much makes sense why we see sepsis patients come out with delirium. So for me, that would be my first suspicion, but then meningitis can always happen. But delirium is much more probable and common.

But they’re probably used to having most their patients sedated. And we can just pin it back to the sedation. I mean, I appreciate that they would recognize sedation causes delirium, like that’s, that’s a good thing. A lot of teams that maybe don’t always recognize that.

So I get worked up when we write your rate and under diagnosed delirium. And it obviously, as you know, it’s life altering, and that we don’t respect it. And we don’t really we’re not panicked about avoiding or treating, it really frustrates me, because what is life like? Post delirium, post icu-acquired weakness, post ICU.

Stefan Becker 52:03
I mean, for us, it was, it was, see this is really difficult. And this is where people don’t appreciate what the survivor goes through. So everyone’s grateful that you’re alive. “You survived. You got out of the ICU, oh, my god, some miracle. You got out of rehab, oh my gosh, miracle. You should be grateful.”

When every day is just misery like, because you cannot move your limbs as like you could and your brains not working like it was in first and all the things all the post ICU, cognitive and psychological and physical changes and the loss that you have to accept?

Like, is this permanent? Is it not permanent? Am I going to get back to my pre ICU abilities? Or is this a new loss? On top of what happened, like my lung functions worse or? And I it was very frustrating, like some counsel around that. And how to cope with after ICU? I think it would have it would have saved us a lot of distress and figuring it out on our own.

Kali Dayton 53:25
Did you know if this was normal or not, did you even know?

Stefan Becker 53:28
No, I didn’t. So I would talk to other transplant lung transplant patients in the community. And everyone had a different experience. But I did start to get that they all patients and family, they all had this experience some kind of forgetfulness, or changes in their mood, or are, they’re angry all the time, or they can process this kind of stuff for physical abilities, but there was no general term for it. It was kind of like, well, individually, you’re either strong enough that you didn’t get messed up or it did mess you up. But again, make

Kali Dayton 54:11
You did have a diagnosis for it. You weren’t able to say “Hey, we’re on the PICs club.”

Stefan Becker 54:16
I wish I was gonna start a group for caregivers who were going through it, just like unofficially just so we can all talk. Thinking about it…. I think I will do I will do a men’s group.

Kali Dayton 54:36
And how has this impacted your marriage?

Stefan Becker 54:41
I mean, I think the marriage was directly impacted because we couldn’t couldn’t process the experience together. I mean, we each other individual trauma of being in there and A lot of them, a lot of my trauma is about what she went through. But like we couldn’t reasonably talk about an identify loss when she was still working through “Well, Is it? Is it loss? I’m just gonna take another week, and I’m gonna clear up or be able to do this again.”

But there were huge changes, and not because of the pneumonia. Like her lungs got better. She’s in chronic rejection, we knew that, she’s back to her same PFTs. Like her lung, her lung function improved, like a couple months later. So everything has been from being on the ventilator as to say that we’re struggling with.

Kali Dayton 55:50
and being sedated on the ventilator.

Stefan Becker 55:53
Right, so she couldn’t go back to work because she had a lot of difficulty working the computer and doing what she used to do, which a lot of graphic design. I saw that she just couldn’t process certain things that you like, you know, by heart.

Yeah, it’s kind of like this hidden, “We saved your life, or we saved your spouse, you know, don’t complain.” Now, when she woke up, not “woke up”, it got better. And they just so what happened was she was in the MICU and her transplant team decided her co2 was at a reasonable level, it was trending down.

They had ruled out enough stuff, let’s get her out of there. Like, “Let’s get her to a medical floor. “And I didn’t understand why. But they wanted to have I think, like full agency over her her care and get her on a pulmonary track.

And maybe stop the the use of sedation or the easy use of sedation.

So she did get to a medical floor. And as things as she got more clear, she started to she was upset that this was happening. This time, she has nightmares of a couple of nights there. Things being like, uncomfortable wearing a BiPAP mask and like asking how it taken off and it being forced on her then, you know, notes being written up that the patient was resisting and slapping the nurses hand away. And this all got everything got excused because of her mental status because of her delirium. In other words, there was no I mean, there were a couple of…. no

Kali Dayton 57:49
There’s to no validation, no support, no acknoledgement of what had happened.

Stefan Becker 57:54
Right? Because, because there’s tough nights for everybody in the ICU. You know, I look around like there’s, you know, 10 rooms with people on ventilators. And half of them might be you know, 80 years old. Or maybe there’s some COVID patients, and they’re young, but they’re not complaining as much as you guys are. I think one doctor said I was stepping in a little bit too much.

And I needed to let the there’s a difference between advocating Stephen and abstract questioning over the line. Because you want the team to you want them to listen to you and not avoid you. And I know, I know what happened. And I had emailed eight emails a attending clinician, just directly I got his email, and I just sent them an email. Because I was I was trying to connect everything I was trying to connect her outpatient psychiatrist with the MICU psychiatrist to specifically talk about her trauma and the effects of sedation. And why he would not want more sedation,

Kali Dayton 59:05
to the to teach the clinicians,

Stefan Becker 59:07
right, they wouldn’t. They just, it was really difficult to get them to reach out to look up that history. So yeah, I emailed a bunch of them and all on the same email. So they had to talk and then her outpatient psychiatrists talk to them. And then the next day, they said, so we talked with, you know, doctor so-and-so, that was very helpful. So we’re not going to do this, and neurology is not going to do this test.

And we’re not going to do that we were satisfied that some of this was already there. Neurologically, you know, she’s had MRIs in the past, some of this is neurotoxicity, from the medication, all things I was trying to say, but they had to hear it from another physician.

Kali Dayton 59:51
Right.

Stefan Becker 59:52
And I was like, “Good, we’re home free. Let’s just get her out.” And then I saw on the chart and I think it’s not a great thing that in my case, it’s great that I can see everything that happens now, in this chart, like you can see notes, moments after they’re signed, right. And in some ways, I was obsessed with those last year another way, I learned to read them intervene, where it was necessary.

And this time I had to check the notes to see whether they were changing the treatment plan and taking these things seriously. And then what I noticed was I kept noticing like hydromorphone, which I think is Dilaudid. And it was when she was getting it each day. And then I like looked into it, and she was getting it every two hours.

And I thought, “well, that’s…. I don’t know, isn’t that a lot? Just, she doesn’t respond well to that at home. I know it’s IV. Why is she getting that? She’s not in pain, right?” So I started asking. And they said, Well, she reported she using pain in her lower back.

So you’re concerned that it’s flank, flank pain, like kidney pain? Or do you think it’s just her lumbar pain acting up because she’s in a bad position? Or cuz we could put that lumbar pillow under her, maybe it would help. And they just said Either way, you know, the patient. We wanted her to be comfortable. So we just asked her and gave her some Dilaudid. And I’m not quite sure how it happened that it was supposed to be. You can correct me because the doctor said, the doctor told me Yeah, we get we wrote that for PRN. Not standing,

Kali Dayton 1:01:43
not like routine ordered

Stefan Becker 1:01:46
routine. She said I don’t think she’s been getting it every couple hours stuff. And I said, Well, I, you know, I’m not. I mean, I’m not an expert on the notes. I can see it’s been administered and the time and the nurse and who’s doing it. And it’s been three days she’s been getting it. And I would really like her mental status to be tested without so much Dilaudid in her system. And that went out like wildfire, the next day, it was stopped. And they were going to transfer out of the MICU. And,

Kali Dayton 1:02:20
Again, good instinct. This is why we need families in the ICU. This is why it’s invaluable to have a perspective with someone that knows them that’s looking at the holistic picture, the big picture that understands their history. Granted, not all family members are as knowledgeable and competent as you are in this setting. But they can change their total trajectory of their of their course and ICU in their lives. By being involved in discussion.

Stefan Becker 1:02:49
I can see how really upset family members, you know, can disrupt the process of Trium. Right. I’ve had respiratory therapists telling me stories about having stop family members from going and trying to adjust the settings, you know, because they wanted their family member was struggling at Air hunger or stuff like that.

But this was…. I just…. after when I saw what happened last year at the ICU, there was just no way. I was going to um, let her just be intubated or sedated more just because that’s what you do to do this procedure, that procedure and make her comfortable. And I really was like a broken record, about the PTSD around the last experience in the ICU. Because I had to say it in a way that “It’s not that you guys did anything wrong. Like it was a great experience for us. But she has this PTSD around it.”

Even at night, that I talked to the doctor about talking to her pulmonologist, about when I saw the hydromorphone or the Dilaudid, and I asked him any and then he said, so I said, “So what do…. what do we do?” And he said, “Well, Stephen, I mean, I mean, I can call and I’m gonna text someone because I know him who’s the attending clinician, but I can’t really I mean, I’d have to go to rounds tomorrow and be a part of the treatment plan and discuss and ask if this is necessary. ”

And I said, “Well,” I said, “What can I do?” And you said, “Well, you as a family member, you can just ask the ICU nurse to not give it to her.”…. Just one second. … And so I said, “Well, I’m not… I don’t want a confrontation, you know, about this.” I said, “Well, let me… I’ll just act like a I just came across it.”

And so then so then that’s what They did. I didn’t confront the nurse, called her and I, like, “hey, it’s Stefan, you know, the worried husband, blah, blah, blah.” And I just said, “I was wondering if tonight she could do me just not get dilaudid And let’s just see if that helps clear up tomorrow.” And they had said, “Well, she’s not getting that she hasn’t been getting it for a couple of days.” And I said, “Yeah, I think she has, I could be totally wrong. I think she’s been getting it every two hours…. I’ll ask tomorrow morning.” and then that was it. And then the next morning, I went in, and I don’t know if something was overlooked or what.

Kali Dayton 1:05:38
But it was offered to her mental status improved,

Stefan Becker 1:05:41
She was off and the nurse didn’t really want to talk about how much she had been getting. And it stopped and her status improved.

Can you hold on one second, Kali?

Kali Dayton 1:05:54
Yeah, totally.

Stefan Becker 1:06:02
So that was my wife. And that’s like, she couldn’t find the TV remote. And like losing the TV remote, is new. This is like post ICU she’s not…. she doesn’t have dementia. And um, the other thing I’d say that’s the deal is this nervousness. And she is scared easily.

So there’s like, I felt like not…. hypervigilance… but I don’t know, a little more timid, less brave than she was before. The ICU experience. And I think this last time, and obviously, she got home and like, the sepsis is better. And they found the right antibiotic, and we’re doing IV antibiotics at home. But this time, it really scared her.

And, and I know that I’m the way I’m talking about this is like I’m the I’m the guy, I’m the here or I’m the one who saved her. And in the end, it doesn’t, you know, and the providers keep saying that to her. Like you did great, but you know, it’s this guy is your husband, you know, he made those calls, and he stopped you from getting innovated, and there’s been a lot of that.

And I’m still, I’m just sad to see her kind of re traumatized by being in there. And whatever medication she was given, no one explained them to her. And she’s still trying to put it together. And yeah, she didn’t go on a ventilator. But she, a lot of other things. were put in her body that now she’s just mentally off. And yes, the post sepsis gait recovery,

Kali Dayton 1:08:03
She still had delirium. She had an assuault to the brain, there were still alternative experiences, it’s very justified that she’d be so impacted by it.

Stefan Becker 1:08:14
So they’re like, “You’ve got to follow up with neurology and get a scan.” But that was about, you know, the possibility of micro strokes, and hemorrhaging. Nothing was about follow up and see how you’re doing, cognitively. How you’re processing or, you know, processing short term memory, like, why isn’t any of that recommended?

Kali Dayton 1:08:37
They’re not aware of it.

Stefan Becker 1:08:39
Because the patient like the patient leaves, and there’s just not much contact anymore with the case.

Kali Dayton 1:08:45
When I tell clinicians that one episode of delirium increases the risks of long-term cognitive impairments by 120 times. They’re astounded. I didn’t know that, until I started this whole journey and started combing through the the research I happen to stumble across it, you know, this is not something that’s standardized in our education. It’s not known to other teams is not taught to the bedside. So of course, we can prepare you with knowledge that we don’t have ourselves,

Stefan Becker 1:09:15
Or our some are even afraid to. I mean, that’s, that’s the tool you use. I mean, that’s the tool use or how do you?

Kali Dayton 1:09:23
Oh, right. If we, right, it’s really hard to be so brazen about this when we feel like sedation is unavoidable for every patient on a ventilator. Right? So when we understand that most patients can’t be awake and mobile on the ventilator, then we’re going to really be frank about the risks associated with medications and why we’re going to avoid them.

But if we can’t avoid them, it’s just par for the course. But then, if it is unavoidable, we can really respect I think what happens is when people have see a contrast and outcomes when they see patients be calm, compliant, and stronger than it’s later that’s when they really see what all this research means. And they see the impact of sedation.

They can compare those experiences to what they’re used to. And they can say, well, it’s not just a critical illness. It’s not just the ventilator. It’s these medications. That’s when they really not just can recite statistics, but they can they’re converted to it, they understand sobered, they’re scared of these medications. Now, they don’t want patients to have the normal routine, right?

And then when it’s unavoidable, we can say, “I’m so sorry, it could cause this, and this is what could happen later on.” Or at least as you leave and say, “You know what, this is what’s happened. Here’s what you need to recover from this.”

Stefan Becker 1:10:42
Definitely the second part, because I would think that during COVID, you had a lot of people coming in who were healthy, who didn’t have complications, like my wife or other conditions, and then come out after the ICU having these other post ICU problems. You know, it was like a scientist, you know, or marathon runner. And how do you explain?

Kali Dayton 1:11:05
Well, the client at long COVID? And certainly, okay, yeah, I see, admission aside in the COVID patient can have cognitive impairments, we know that COVID can be neurotoxic, right, but we took a neurotoxic disease process, and we gave neurotoxic medications and a neurotoxic environment on top of it. So the question is, how much of this is just long COVID.

How much of this is the classic picks from sedation, delirium, immobility, it’s really hard to know. But we know that the same trends follow that patients that had improved care in terms of protecting patients from this had improved short and long term outcomes, even with the same disease process, but that’s very misunderstood with an ICU community.

And so you did play a huge role in your wife survival, avoiding more sedation. But what do you wish that we I mean, I’m sure this can be a whole discussion. But in summary, what’s your plea to the ICU community? How can we help our interactions with families be better, and our approach to caring for patients?

Stefan Becker 1:12:15
Psychoeducation about the impact of delirium of the sedation? Like separate, not just added on to discussions about whatever the critical diseases, right, but I’m just a part of like another consults or something that happens. So provider comes in the room and oh, yeah, I’m here from instead of like, you know, whatever, endocrinology or pulmonology.

“I’m here from psychiatry here just to talk about anything and prepare you for post-delirium.” I don’t mean, I don’t know how they would do it. But they should just get to be where they could do it. And it not be about like, I’m blaming the hospital for doing something that’s shouldn’t be doing, Or didn’t need to.

I think talk about it would have been very scary in the middle of the crisis. But after I mean, I’m, you know, we’re smart. Couple like in the medical fields, right, because we’ve been in it for so long. Yeah. And you didn’t know. And it is humbling. What that did, and I remember, the only concern was that if she’s sedated, so long, and on the ventilator before they tricked her that the concern was like protecting the larynx, and breathing. There was no talk about. We don’t want to keep someone’s sedated for so long. Or the paralytics was, you know, her, her body or muscle function, but nothing about brain.

Kali Dayton 1:14:07
It’s an afterthought.

Stefan Becker 1:14:08
And there was something I wanted to tell you, which is in the middle of it, I felt so lost that I went, I found that book by Eli.

Kali Dayton 1:14:16
Deep Drawn Breath.

Stefan Becker 1:14:17
Yep. So I started reading that to try to get an idea of what’s going on in there. And why is Andreea why is you know, my wife still sedated and and what’s the and I start I read all about his What are you seeing with post-ICU in patients? And I went in and I told the director of the ICU or a pulmonary pulmonary critical care.

I said something like, “Oh, yeah, I’m reading this book by Ely,” and he’s like, “Oh, yeah, that’s a great book. You’re reading that?” I said, “Yeah, I’m, I’m understanding more about what, how this all works. What goes on in here.” And he says, you know, he’s done a lot to change how we do things. And we’re trying to adopt some of that here. And that was all he said, you know, but then everyday in the hallway after that he called me by my first name and say hi. And I was reading a book on his level.

Kali Dayton 1:15:25
Instead, but then you had common vocabulary.

Stefan Becker 1:15:29
I had common vocabulary. What I was hoping in the book was there was going to be a little bit more like, how to cope with what happens after the icy Well, I know a lot of his focus was how do we, how do we approach patients, and what we’re doing?

Kali Dayton 1:15:43
I would recommend Dr. Jim Jackson’s book, Jim Jackson. His is more about how to how to recover cognitively, I think psychologically as well. From it was kind of for COVID, but it’s very applicable to any ICU patient. Okay. And I did episode with him in Episode 129, about his book, and so I and that’s, that is, yeah, that’s, uh, that just came out. Two months ago, it’s called clearing the fog.

Oh, great title will be that that could be something that we give, and we make sure that families have as they leave the ice to say, here’s something help guide your long road ahead. But I am hoping that in the future, that we have a much more standardized safety net for survivors that we have understanding in the ICU to prevent the harm.

But then also, it’s going to happen, you know, there’s, we’ll never totally eradicate delirium. So we have that we have the tools, the understanding the resources to say, here’s what you experienced, here’s what it may, what may happen afterwards, we’re gonna set you up. Anyone that has ARDS, you have a pulmonology follow up later, you have a kidney injury, you get nephrology follow up later, when it comes to delirium. Good luck, have a good life. That’s just a sign. Right?

Stefan Becker 1:17:08
It doesn’t make sense. And I think the fact that I keep bringing it up, I don’t know. They think I’m doing it because I work in the mental health field. Oh, like, I’m so focused on that. You know what I mean?

Kali Dayton 1:17:21
No, yes. I mean,

Stefan Becker 1:17:23
even even my wife starting to feel that even she’s feeling that way to like, you know, let’s focus on the other stuff like, keep bringing, you know, you don’t have to keep pointing out the cognitive challenges.

Kali Dayton 1:17:38
But the ignore the other way to where families are so unaware of the importance of the impact of cognitive impairments, the psychological trauma that they want to say, you’re here, so I’m talking about it, you survived, nothing else matters. So sometimes survivors have no support or validation. In those aspects of the recovery.

Stefan Becker 1:17:58
Well, I think there’s a lot of people who still think, as I did that delirium is like a serious hangover, and it wears off.

Kali Dayton 1:18:06
No, 95% of the medical community thinks that. So you are absolutely not alone, your concerns are valid. And an after the ICU, your concerns are valid. And I hope that this interview helps give the clinician side the ICU a little more perspective on the family side of all of this, that advocating is key and vital and that family members bring important elements to the plan of care and to the bedside.

Stefan Becker 1:18:37
I think that would be another thing that’s helpful is if the, if the providers asked, What does the family need, but more than like, what do you need, like, you know, apple juice or soda? Or do you need a room to sit down? But I mean, I don’t know. I advocated but I had to infiltrate, right to be heard and to learn what was happening or could happen with more sedation. It shouldn’t be such a challenge.

Like I said, I found a couple or one provider was very friendly and started use was very transparent and told me what was going on and even didn’t mind that I hung around. That rounds kind of listening in. But I do use all the techniques I have to get in there and most family members, I think cannot do that. Now, lobby just wouldn’t have that kind of access.

Kali Dayton 1:19:41
They are in enlarge part very shut out of the process and the discussions. There law allowed some scraps of information. That is not the ABCDEF bundle. That’s not evidence-based medicine that’s not families being engaged and immersed into the process.

And I hope that that changes and I would invite you to Continue your advocacy, get involved start a family support group, especially for men. Absolutely. There’s no safe place for people to talk and just be honest. Your profession, your skills can bring in a lot of guidance and support for people that you can understand need it. And I’m going to continue to utilize you to help bring kids into the ICU side. I’m optimistic for the future, I think we can and must learn from your journey, and that of so many patients and survivors and families. So thank you so much, Stefan.

Stefan Becker 1:20:32
Yeah, I’m optimistic that you are doing this as a podcast and that you’re on this path. I agree. And you’re welcome. Thanks for giving me like a space to talk about it.

Kali Dayton 1:20:47
Well, I think that more spaces will be created, and we’re going to reach the people that need it. Thank you.

Stefan Becker 1:20:52
You’re welcome.

Transcribed by https://otter.ai

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