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Families can advocate for evidence-based and humane care can deeply impact patient outcomes and truly save lives. Kerry shares with us her journey to saving her sister’s life.
Episode Transcription
Kali Dayton
Kerry, thank you so much for coming on the podcast. Can you introduce yourself?
Kerry
Yes. My name is Carrie Scarda. And I live in Baltimore, Maryland,
Kali Dayton
Tell us a little bit about your sister’s journey. What brought her to the ICU? And what was that like for your family?
Kerry
So my oldest sister, Donna, had an episode that they weren’t really sure what happened to her, she couldn’t breathe. And they, they rushed her to the hospital via ambulance and the hospital that she went to, didn’t have a bed for her. And so they actually had to airlift her to the hospital that she ended up in, a hospital which was in Maryland, which is actually a teaching hospital here in town.
And so, I found out about it, I guess, it maybe she was there for a day, before I found out about it. And I found out from her husband, who let us know that, you know, Donna was in the hospital, and this is what was happening. And so at the time, her husband was the only person that could see her, because it was a one visitor, one visitor policy. So I did go to the hospital to be with Him and to support him, but I wasn’t able to see my sister at the time.
So I just sat in the lobby, you know, and said my prayers, and saw my brother in law mark, and, and then I came home and of course, I was shaken up and concerned and worried. And a friend of mine who is a nurse, her name is Lorie. I was speaking with her about it. And just saying, “Hey, can you guys see some prayers for my sister? She’s in the ICU on the ventilator.” And Laurie asked me, you know, what was happening.
And at the time, I think we, we discovered that it was she had double pneumonia, which is why she was on the ventilator, not COVID related. And Laurie said, “You need to speak to my friend Kali, because you should help your sister with this.” And I really at the time, I had no idea what she was talking about. I just thought, “My sister’s in the hospital, it’s a reputable hospital, they have an amazing shock trauma unit, they must have a great ICU unit. And she’s fine.” You know, “she’s in good hands, my brother in law’s there with her.”
And so what happened was Laurie sent me your podcast, and put me in touch with you. And I listened to your podcast. And immediately, immediately I sent it out to my brother in law, and also my other sister, Shelly. And I said, please, I implore you to listen to this podcast. Because this is information that we did not know. We thought the Donna was okay. But we need we need to advocate for her.
And it’s funny because my middle sister Shelley, you know, she said, “Oh, Donna is in good hands. She’s in the hospital, she’s in the ICU every you know that they’ll take care of it, it’s fine.” And so I had to do a little extra nudging for her to listen to the podcast. And she did. And thankfully she did. And so then the three of us were able to be Donna’s advocate in the hospital.
But this this was probably like day, four at this point, or maybe day five at this point. And so, finally, we discovered that the hospital policy said you can have I could go in but it couldn’t be at the same time that my brother in law was there. And so at that point, you know, he was sitting by her side the whole time and and I said, “Let me give you a break. Let me go in. And let me see her.” And so I got to the ICU room.
And it was it was it was pretty devastating to see my sister in that state. Like I had never experienced that before. And you know, I had to take a minute when I went into the room because they wanted to talk to me right away. You know, “here’s here’s the rundown. Here’s what she’s doing…” And I just I just said “Please excuse me, that’s my sister. Can you give me a minute?” Man, I, you know, I can pose myself and I listened to what they had to say. You know, when I looked at all of the medication that she was on and all the drips and the tubes and the they had her hands tied to the bed with these big, almost like boxing mitts on her hands. She was completely strapped down to the bed.
And I just, it just seemed, I don’t know, I’m not going to judge but it just seemed wrong. You know, to me, it just felt really wrong. And they said, “Well, she gets, she gets very violent, she gets very agitated, you know, when she comes off of the sedation, and so we have to keep her safe. We can’t have her pulling it or tubes.” And I said, “Okay,” I said, “Well, can you can we please just take the mitts off. Like, I would like to hold her hand, I would like to rub her hand.”, you know.
And so I spent the day with her. I spent the day just just talking to her and touching her and moving her legs and you know, sitting with her and praying with her, and I put on some healing music, you know, healing music. And just try to keep it really calm there. I didn’t know what she was hearing. She wasn’t responsive. She really was not. And at some point, when she did wake up, I was there for maybe about two hours.
And then she woke up from the sedation, and she you know, she kind of opened her eyes and her eyes, my sister has the most beautiful blue eyes, like the the ocean. And her eyes were blood red, like all the white in her eyes were completely red. It was like her eyes were bleeding. And I just lost it. I was like, “What is going on?” Like, “Why are her eyes like this?” And they said, “Oh, it’s from her straining,” right? Because when she would wake up, she would arch her back because she wanted to get out of the bed. And so she would strain her back and push her head into the back of the bed.
And that was causing broken blood vessels in her eyes. And so I said, “Can you are you having someone come up and look at this?” you know, “Can someone please examine her like this?” You know, and her eyes were all goopy and, and it was just really very traumatic to see. And so they did have someone come in and look at her eyes. And I guess they gained that she she wouldn’t have any vision problems. It was just broken capillaries. So I started advocating for her when I was there I sort of talking to the nurses, and asking about the sedation and asking about the medication and asking, you know “What they were doing to start to bring her off of it?” And they were like, “What do you mean? This is this is how she has to be. She needs to stay calm. She needs to be sedated.”
Kali Dayton
“She’s on a ventilator. She ‘has to be sedated’,”
Kerry
And the nurse the nurse that was there she was she was beautiful, right? She was a young nurse. She I asked her I said How long have you been a nurse and she said she had only been a nurse like a year. And she wasn’t even an ICU nurse. But she volunteered to be an ICU nurse because they needed help. And so she was really a beautiful person.
And she you could tell that she wanted my sister to be comfortable. You know, she would she would pull her covers up and make sure her hands were all placed just just so and but that wasn’t really what Donna needed. You know, what she needed was to be taken off the medication. So what happened was I was there with her the whole day and just I kept talking to the nurses and I kept advocating, I kept saying, “Can we bring it down a little bit?” you know, and then I was talking to you through text and sort of show you shooting pictures of the monitors. And “here’s where she is.” And, you know, “this is her I think it was her peep level, her oxygen level” and things like that.
And you were guiding me of what the things that I should ask and things I should look for. And so what happened was my brother in law actually ended up coming in it was like eight o’clock at night. And we found out that we found out that somebody could stay the night with her. Like, we did not know that she kind of visitor 24/7. And so what was happening is that Mark was coming in staying with her all day or I was coming in and then leaving it like eight o’clock. And so as soon as we found out that because they don’t tell you, Oh, you can have somebody here all night, right? So as soon as we found out that we could be there all night, we started staying all night.
Because what we discovered is that all day, you know, we would work with the nurses to bring her sedation down to let her be out of you know at what they called thrashing around, which wasn’t really a sort of like, I mean, I hate to say this was almost like somebody it was almost like she was drunk, right? It was like she kind of moved really slowly and kind of lifted. Her leg really wasn’t thrashing. It wasn’t like she was going to hurt anyone. It was just It was kind of like she just was uncomfortable. She wanted to sit up, it was very clear that she wanted to sit up, but they wouldn’t let her.
Kali Dayton
And that’s so interesting because we do. I mean, some patients do thrash I mean, I’ve been kicked and head butted by patients. Certainly that can happen. But sometimes we use we as an ICU clinicians can use that word very liberally. We’re afraid that patients will get to that point. So if we see movement, we panic.
Kerry
Yeah.
Kali Dayton
Unfortunately, instead of recognizing, “okay, they’re confused. They’re delirious, they need to clear out the sedation and come back to reality.” And, yes, some agitation, some movement is going to be part of that. Rather, we say, “no, they’re, ‘thrashing’, we have to turn sedation back on, immediately.” But you helped her work past that, what did you guys do to help her work past that? When she was confused, kind of agitated, not thrashing, but, but active…
Kerry
So, as soon as she would wake up, so I think what would happen is, she would probably get to where they would have to suction her lungs, right? And so whenever they suction her lungs, which they had to do, periodically, she would “wake up”. What I mean is she would kind of sit up and, and sort of strain herself, and and then her legs would start to move, and she couldn’t move her arms because they were still tied down.
And so I would say to the nurse, “Let her experience this.” like, “:et her be out off the sedation and awake.” And I would hold her legs, and she would kick and I would kind of hold her leg for her. And then I’d bring it back down to the bed. And you know what I mean? And then she would, she would, she would kick again. And so I was trying to let her be in that state as long as she could, because I felt like at least she’s awake at this point. But she was not responsive. You talk to her, you squeeze my hand, there was no response whatsoever. And so myself and my brother in law Mark, we just did that every day, we worked with Donna and we worked with the nurses. And we just kept saying, “We need to get her off of the sedation.”
Kali Dayton
And you were finding that they would resume sedation at night when you weren’t there.
Kerry
Exactly. So what would happen is Mark would work with the nurse that was on the day shift all day, and they would bring her down, bring her down, bring her down, right? And as soon as he would walk out to go home, the night nurse would come in and Donna would wake up and it would be “BOOP”.. back on. He would come in the next morning and it would be dialed back up again. And then you have to start all over.
Kali Dayton
That is a very common practice. But something to be very aware of families to be aware of on my clinician podcast, we talk about that a lot, because dayshift wants their patients to be awake, active, hopefully. But nature wants to have a “quiet night”.
Kerry
Yes.
Kali Dayton
And again, it comes back to clinicians not understanding what delirium is, what sedation is actually doing… and all those problems. So, for families to be aware that that’s going to be something to address and make sure. Some day nurses will tell the next nurse, “When I come back in the morning, I want this to have stayed off and be off when I come back.” But I think families can do the same. But it is so much easier for the nurses as well to have family there to help with that phase of delirium.
Kerry
I think that we were definitely a vocal family. I’m not sure that they appreciated us very much. Because we were kicking you know, we were bucking the system, right? We were asking them to do things that they weren’t comfortable with. The nurses kept saying…. you know, the nurses were the ones there with the patient all day. The doctor comes in and spends two minutes, three minutes, maybe five at the most, and then they’re gone.
And so, you know, the nurses kept saying to us, “Well, this is what the doctor wants, well, this is what the doctor wants.” And so when the doctor came around, you know, we were there actually, Mark and I were there and the doctor came. And again, it’s a teaching hospital. So he was teaching- the whole crew of people came in, and he was teaching and talking, which is fine with me. I don’t mind that. I mean, teach, you know, nurses need to learn.
But we we addressed the doctor. You know, and we said, “This is not what we want for her. She has to come off this medication and this is what we’ve been guided to do.” And you know, he did. I think we sort of cornered him and he was around other people. So he said “okay”, because I think he you know, he has people around him at stake. So it was like he I don’t think he wanted to fight with patients family.
Kali Dayton
and he probably knew. This is not… Hopefully this is not new information. Especially to physicians. This is something that we talk about in national, international critical care conferences for the last at least 15 years. They should have some awareness that this is harmful. Now whether or not they’ve applied that to their practice or seeing what it’s like to have patients free of delirium and free of sedation on the ventilator? That’s another question.
But the very concept of what you’re advocating for, is based on the research. So speaking to a physician, there shouldn’t be disagreement as far as what is best for the patient. What will improve our outcomes. And that kind of situation, if you were to say, “Can you show me in the research, why my sister needs sedation? Or why sedation is a necessity just because she’s on a ventilator? Can you show that to me?” That would also corner him because that is that those are the kinds of discussions we have as colleagues in the ICU to say, as an ICU team, what does the research say?
Now that your family member on the ICU team, you can also ask, “Well, what does the research say?” And you can provide this the research as well. But that’s good that he didn’t fight you in that moment, and that you came to a consensus.
Kerry
He did not. And we were very lucky. I know that. I mean, I’ll just say this, I know that my brother in law did have an a altercation with a night nurse who wasn’t listening to him. Even though he was sitting right by her bed. She came in and she went right to the drip behind her bed, and she just dialed it right up. And he was like, “What are you doing?” You know, and that was not a good scene. You know, my brother-in-law is a pretty big guy. He’s a big burly guy. So I don’t, I think it was sort of known at that point that the my sister’s room was kind of marked, you know, it was marked, “Advocate Family Members in This Room”. *laughter*
Kali Dayton
And we want to keep this as peaceful as possible. In reality, if this was my loved one, and understanding that, that choice by that nurse meant moment would increase my spouse’s chances of dying, having permanent brain damage, PTSD, disability…. I would probably do whatever it took to make sure that they stayed safe as well.
Kerry
That was our MO That really was we were determined that we knew what was best for Donna, because of you, because of the help that you were providing us. And so we were successful in, you know, working with the nurses, working with the doctors. Dialing down the medication. The you kept encouraging us to get her to sit up on the edge of the bed. And I don’t think that…. I mean, that happened, but it didn’t happen like right away. I know that you had wanted us to get her setting up right away, and she just wasn’t responsive enough. So that took a little bit of time to make that happen.
Kali Dayton
And I’m coming from the perspective of a team that when patients are like that, we will, at least pre-COVID times we had more resources, we would have, you know, two or three people just holding her up in the front, someone’s supporting her in the back. And even though they’re rarely responsive, just that stimulation of being upright, helps them combat delirium.
But when you’re working with a team that is not comfortable with that, who thinks that patients must be reclined in bed… That is a whole additional barrier. So if I had been there, I mean, I would have been happy to help you guys get her up. But if that’s not feasible at that time, that’s understandable. But the fact that you kept asking, advocating every day, right, you were asking, “Can we do this?” That what made it happen as soon as it did.
Kerry
We were. And Mark again, he’s a big guy. So, you know, he would, even when they would bathe Donna, they would just, you know, wipe her down in the bed and everything. You know, he even helped with that. Like he was very much there for everything that had to happen with her. You know, changing of the pads and the sheets, and, you know, everything that that all the care that she had to have.
He was right there helping the nurses. And when I was there, I was helping them too. Because what I saw was, I saw really young nurses who it seemed like they were scared. You know, I mean, I don’t want to cast judgment, but I did, I saw sort of like, they they seem scared of my sister. Especially when she would come out of sedation. And it was, you know, four of them around her just roll her to, you know, change her her sheets and stuff. So I felt for them. You know, I really my heart went out to them. As feeling like were they not… Did they have the training that they needed? You know, again, it’s a training hospital, so I didn’t know what stage they were in as far as their training goes. But I really, I really felt for them.
Kali Dayton
And I think that’s important to understand their perspective.
Kerry
Yeah,
Kali Dayton
To understand that. This is how they are trained. They are trained to expect every patient on a ventilator to be absolutely comatose and not move a muscle. They are trained, culturally, subconsciously even outright- trained to think that that is “more humane”, it’s more “comfortable for the patient”, “safer”. They are trained to think that any patient will be trying to pull the breathing tube or, or “kill the staff” if they’re not deeply sedated.
So that is ingrained into their minds. So to have someone be free enough to move and awake enough to be a little agitated is terrifying for them. So you did the perfect thing as family members to support them to help them with those tasks, to hold your sister’s hand, and help her be free. The staff is really afraid if someone’s like that, to leave the room, because they’re afraid they’re going to pull out the breathing tube. But there’s comfort in knowing that you’re at the bedside that you’re going to hold her hand if she does get more wild. That breathing tube is gonna stay safe and that she’s gonna survive that. And then you guys are focused on the big picture, the long term outcomes, you want this bring the same person home, so that way, everyone’s working together to meet those same goals.
Kerry
Exactly. And so what you had told us, I think Donna was in for about…. I don’t know, it must have been it was at least five days. It may have been seven at this point. And then you and I talked about the plan moving ahead. So what had happened was… the medications were coming down, her her PEEP was at the level where she was breathing on her own. And I remember you said when her peep, I think it was five, I’m trying to remember …it’s been a little while. “But when her PEEP is five, she’s can come off the ventilator.”
And so we were watching that. And as soon as it went to five, we were like, “okay, she’s got to come off the ventilator now!” you know. And then we talked about, you talked about having a physical therapist come in, because you told us what we had no idea about- was that her muscles lying in a bed for seven days are going to become weak.
And she’s going to need physical therapy. And I certainly hadn’t thought about that. And I know Mark had not thought about that. So we requested that a physical therapist come in and start seeing her. But the hospital wasn’t doing any of that, you know. It was us asking, “Here’s what we need, can this person come in?”- just like when her eyes looked like they were bleeding? I said, “Can you have someone come in to look in her eyes to make sure that they’re going to be okay?” Maybe they’re just I don’t know, I don’t like to presume…. maybe they weren’t used to people walking out of there.
Kali Dayton
They’re not. So a lot of times… often…. I won’t say every time, like for your sister’s case, but many times. If someone is that deeply sedated for extended periods of time, one, it’s it could be that there have been their ventilator settings wouldn’t decrease to that point that quickly. But also, even if their PEP gets to a five and their oxygen is down to 40%…. If they’re deeply sedated, they’re not going to be awake enough to breathe on their own.
You know, they just then start to decrease sedation, you saw how long it took for her to come out of it. That could be another few days on the ventilator just to wake up enough. So medications like propofol or Versed or Midazolam. Those are very toxic to the diaphragm. Those medications themselves cause diaphragm dysfunction, and you can’t breathe without the diaphragm.
So by sparing her such high doses and duration of those medications, you likely help spare her diaphragm so that once her lungs- the infection- got better, she then had a diaphragm to breathe on her own. What otherwise could have happened is that she they may have switched her onto these settings like CPAP to see if she could breathe on her own. But her diaphragm would be too weak to dysfunctional, or even paralyzed, to breathe on her own. And they would then start talking to you about a tracheostomy.
Kerry
Right… yeah.
Kali Dayton
So by advocating by pushing, by being attentive, being there the whole time, you probably saved her a tracheostomy. So successes such as extubation- being able to take out the breathing tube on someone like that. It’s probably not very common. And when ICU teams don’t have the culture of having physical therapists work with patients on a ventilator. They’re probably not thinking “Okay, how do we keep him off the ventilator?” like she was weak. She could have ended up back on the ventilator just for that weakness.
Kerry
Right. Right.
Kali Dayton
So even though the ICU team didn’t have that culture, you had that understanding and you were able to request those things that eventually helped her get off and stay off the ventilator. That’s powerful, Kerry.
Kerry
Well we had them because of you. Because you were guiding us along the whole time. They also did have her on medications that she is allergic to, that at some point, they had her morphine. She’s highly allergic to morphine. So that probably contributed to some of her delusions.
Kali Dayton
Yes, morphine, um, opioids, narcotics- can cause delirium. We really want to treat pain in the ICU, if someone’s languishing in pain that can cause delirium. But I think an important point of the ABCDEF bundle is number one is A- assess pain.
But how can you assess pain if someone is deeply sedated? They can’t tell you. What I appreciate in my practice in an awakened walking ICU is- I can go in to a patient that’s on a ventilator and say, “Do you have pain?” and they can write, they can mouth they can text? “Yes, no”, they can give me a number. They can say what they want. Some people say, “I just want Tylenol” or this amount of “Dilaudid helps me”. If we can start very slow titrate up to what they need.
So to just assume a patient needs these high doses of narcotics or opioids, because that’s just what we do for patients on a ventilator is not customizing or optimizing care. That’s not assessing pain. That’s not treating pain that is setting patients up for a higher risk of the bad repercussions of those medications. When maybe it was never necessary. Maybe your sister never had pain. Right?
Kerry
Exactly. Yeah, exactly. So she you know, we I think she was on I don’t know the exact names of each one. Propofol. Oh, yeah, I knoe she was on that. Um, I know, at some point, I sent you a picture of all the medications. And I don’t know the names of them, but you do.
Kali Dayton
She was propofol, I think fentanyl. She wasn’t on the worst medications. And yet, clearly, they probably weren’t necessary. And they came with a price.
Kerry
Yeah. So eventually, she did, she did come out of they did dial down the sedation, and the fentanyl and the narcotics, so that she could wake up. They removed the ventilator tubes, they kept the feeding tube in. And they had her sitting up. And she was coherent. And she was angry. She was really, really angry. Like, she was just not herself. You know, she was saying really horrible things. And you could tell that it’s just wasn’t her. And so I think it took her a while to really get those drugs out of her system.
And then what happened was, what we found out is that when she was under sedation, and it could have been from her straining, the way that she was arching her back in the bed and pushing the back of her head into her bed. She had a stroke. She had a stroke when she was under sedation.
What happened is, after she got out of the ICU, she was transported to a rehabilitation facility that she then had to be in for, I think nearly a month after the ICU because of the stroke. And at this point, we weren’t really sure if it was one stroke, or if it was several mini strokes. But we knew that she had had that happen when she was under sedation. So that just added another level of complication to her healing.
Kali Dayton
And that’s such a clear case of what we talked about with immobility- meaning being left in bed and not being able to move, be active. That changes how your blood flows. And so when the blood is stagnant, it’s more likely to coagulate or create blood clots. So that puts patients at higher risk of having clots in their lungs, or in their brain, their legs, different parts of their body.
And when someone has a stroke, in normal life, you know, they’re cooking, they’re driving whatever and they become symptomatic. It’s very clear. But when someone is comatose under sedation, right, and you’re not doing breaks from sedation, they’re not trying to check their neurological status. How do you know when a patient’s had a stroke? So we’ve set them up for this situation, which they’re going to be at increased risk of having blood clots, and yet we’re not assessing their brain and make sure that they’re free of a stroke. So you missed the window in which you could treat that stroke.
Kerry
Right.
Kali Dayton
And so you provide another reason which we should and we have to be avoiding sedation, keeping patients active, and if they are sedated, actually taking off sedation and checking the brain.
Kerry
Yeah, it was so clear to me after, after we, you know, were educated by you. It was so clear to me what had to happen and what was happening and what wasn’t happening. And it just made me think that wow, you know, “I think so many…” I’m gonna say this I you can, you know, “so many COVID patients died unnecessarily, because they were not taken off the ventilator in time.”
You know, you heard during the first bits of COVID. You know, they never came off the ventilator. They never came off the ventilator. And it was like a light bulb in my head. I said, Well, I know why they never came off the ventilator now! Because they weren’t ever given a chance to come off the ventilator because they were probably sedated. And then their body probably shut down. And that’s why, you know, our loved ones didn’t come home during the first days of COVID. And even now, you know.
Kali Dayton
There’s so a lot of going on. I know when that first wave hit New York, they were so understaffed. I had colleagues go out to New York, and one of my intensivists came in there was one nurse to 13 patients on a ventilator.
Kerry
Wow.
Kali Dayton
And no families were in there. Yeah. So they were all all they could do was keep sedation running on these patients. They couldn’t, you know, there’s no way they could turn them, suction them clean their mouth out, do all that care, let alone have them awake and mobile, and work through that delirium. That wasn’t possible.
And so it was very clear that having patients sedated and immobile for that long is lethal.
Kerry
Yeah.
Kali Dayton
So even once their ventilator settings, IF their ventilator settings came down, they were still stuck on the ventilator because they didn’t have the muscles to breathe. And then care facilities couldn’t take them to rehabilitate them.
Kerry
Right!
Kali Dayton
And so, yeah, the early stages of COVID are prime examples of the lethality of what we do to patients on ventilators. I’m pretty convinced that if I, as a healthy 32 year old, went in on a ventilator for the next three weeks with deep sedation, that I would have bedsores, muscular atrophy, I would have new infections. I would, you know, have brain damage. Those things can be caused even without the first thing that puts a person into the ICU. Even without pneumonia like your sister had, she could have had those repercussions. Whe could have had a stroke just because of being immobilized.
Kerry
Like you said, you come out worse than you went in. It’s like yes, they got you out. But at what, what price?
Kali Dayton
And especially when, as demonstrated by your sister, sometimes that that price is avoidable. Yes, she had a stroke. But she didn’t have a tracheostomy. She could have probably spent five to seven more days, at least on the ventilator. Had you not been there. Had you not been advocating for those changes in sedation.
And then, if the team did have that culture of keeping patients awake…. if she was allowed to wake up right after intubation, and be walking throughout her time, the ventilator- could her stroke have been prevented? Could we have prevented that month of rehabilitation and the repercussions later? I understand that she had some scary experiences while sedated.
Kerry
Yes. So I’ve spoken to her about it. And because I was curious, you know, because it appears as though they’re just peacefully sleeping. And, you know, I learned from you that that’s not the case at all. And when I asked Donna about it, she she confirmed that, you know, she said that she had some horrific nightmares when she was she didn’t know where she was.
She felt like, at one point, she said, “You know, I was they had me in the basement. And I was on like a metal table. And there were all these people walking by. And they were poking me with things.” And… she was never in a basement. You know, she was never, you know, none of that was ever true. And she said she would just have these loops of, you know, these horrific nightmares of being in places that she didn’t want to be.
And, you know, the ones that she could remember, were were not pleasant. I mean, I can imagine the trauma that, you know, they caused her while she was under sedation. I haven’t spoken to her about them, since like if she still has nightmares, or if she’s still bothered by any of that. I kind of hasn’t haven’t because I didn’t want to bring it up again. You know, I didn’t want to put it in her mind again, so that I can’t report on whether she still has them or has memories of them now.
Kali Dayton
Yeah, I imagine that’s a hard spot for families when they realize the reality of what their loved ones may have or have endured. We don’t want to trigger the trauma but you also want to make sure that it’s a safe place for them to talk about it and receive validation.
Some survivors don’t talk about it for years, because they’re afraid they will be perceived as “crazy”. They’re, they’re personally afraid that they are crazy. They don’t know that sedation caused that they don’t know what delirium is. They think they have… that they are psychotic. And when they have flashbacks, panic attacks, they get lost back in those scenarios, again. They really are afraid that they’re psychotic. And they don’t want anyone to know. One survivor told me he was afraid he would be institutionalized if he told anyone about it. So he went three years suffering the severe PTSD without telling anyone. So I think it is important to let our loved ones know that you believe them, you understand, to a certain degree, that they may have had very traumatizing experiences in that coma. That when and if they need to talk about it, that you’re a safe place for them. And I’m sure that your sister absolutely understands that you are a safe person for her.
Kerry
She does. And she also knows very clearly that I believe we saved her life. I don’t believe she would walk out of there. Had it not been for meeting you and learning everything that we learned. And I think she was given a second chance. Thanks to you. Thank you.
Kali Dayton
I could just feel during that time, just so much love and concern for her. And I think you guys absolutely did the right things. You want worked mostly peacefully with your ICU team. And you were so attentive and there and everything that you advocated for were within your rights as a family, because you are part of the ICU team. And that’s something I really want…
Kerry
I will say that it, I think it does require constant advocation. When from the family, and you have to have strong people in your family to do that. I’m, you know…that’s my sister, that’s my family. So I’m not afraid of authority when it comes to that kind of thing. And I my brother-in-law was not either.
So, you know, I think having us on her team was really important. Now, there might be some families that just don’t have that kind of headstrong way about them, you know, I don’t know what would happen for them. But there has to be someone in your family that can really buck the system. You know, we really were pushing the nurses and saying, what, “this is not acceptable.” This is what we want to see. What we found is that, you know, the nurses were pretty accommodating. They were. They really were. They weren’t fighting us, they were just like, “okay… all right.” you know,
Kali Dayton
“It’s crazy… but it’s your sister.”
Kerry
Yeah, so I feel like families need to know that they do have a say. They do have a power, and it’s your loved one lying in the bed. Right? And so, don’t feel helpless. And really just don’t feel like the doctors or nurses know best. Because when you can get this kind of information that you provide in your podcasts, it’s so important for families to know it and everybody that I talked to you now- I tell everybody about this. I tell everybody that will listen, you know, because we have to spread the word.
Kali Dayton
It could be any of us. Any of our loved ones could be in the ICU at any time. I went to a local hospital here and said, “Here’s who I am. Here’s what I do. I feel a little uneasy, because I’m working with teams in Wales on this. And yet the hospital 20 minutes away where my parents could end up does not offer the process of care that I’m advocating for. So what can we do to make this happen so that if my parents end up under your care, they’re going to get the proper care.”
And they were a little dumbfounded. But that’s really what it is. I mean, these are our family members. And again, this these aren’t conspiracy theories. These aren’t… made up…. figments of our imagination. This is evidence based, this is the research. This is what medicine is about. We’re an evolving field in medicine. And so you can be part of that evolution. And you can advocate for evidence-based medical practices, that is within your right. And so by doing your own research, understanding these principles… I’m happy to support you. And having the confidence that what you’re advocating for is proper practice, that can give you confidence to have intelligent and productive conversations with your ICU team.
Kerry
Well, it’s funny, the one nurse that was just such a sweet, sweet person, that the one day that she was there and I was there with her all day. You could just tell where her heart was and I actually wrote on a post it note I wrote your name and your podcast and I said to her, “If you want to be the in the future of healthcare and the future of ICU, I suggest you give this a listen.” And and I was telling her about you. So I tried to plant the seed with her. It’s like, you know, “You can you can make change. You can be a changing change agent.”
Kali Dayton
What a neat experience for the medical team as well. Some other families that I’ve worked with, the teams will say, “Wow, this patient’s a miracle we’ve never seen the patient do so well.” But what an opportunity to give them that experience of having a patient be awake, mobile on the ventilator and see the difference in their outcomes. Then you’re helping change a team, a culture, and preparing the way for future patients to have better care and better outcomes.
And yeah, sharing my clinician podcast, giving teams the resources and access to the information so they can understand for themselves. You make such a good point. These are deeply compassionate, kind, nurses. I’m very biased because, I am a nurse, nurse practitioner, but nurses are the best kind of humans. And by helping them understand how they can help patients, then they will be your greatest allies in this mission.
Kerry
Yeah, we just have to get the word out. You know, it’s just they don’t know what they don’t know.
Kali Dayton
Yep. And it’s not their fault. And they’re not trying to hurt patients. They just…this is a systemic problem. This isn’t on one person or one discipline or one hospital. It doesn’t mean that you and your family have fall prey to those problems.
Kerry
Yeah.
Well, Kerry, thank you so much. Anything else you would add?
I don’t know. For me, it’s it’s sort of my philosophy is, you know, don’t believe everything you hear. It’s like- do your own research. And be your own advocate. No matter what, who you’re seeing, or who you’re talking to. You know, for yourself and for your loved ones. I mean, even with my parents who are older, my mom, just this year lost a lung. She had lung surgery, and they had to remove her lung.
Ask questions, like, ask a lot of questions when it’s yourself or a loved one, and they’re under medical supervision, just, you know, be a pain, it doesn’t matter. It’s ask questions, be a pest. You know, hopefully the good, the good doctors and nurses will will listen and try to answer your questions. And if they can’t answer your question, then you seek out the answer somewhere else. So I just think being an advocate for yourself and your loved ones is so so important.
Kali Dayton
And I think I found families are almost apologetic about asking questions. But the irony is, I’ve found that families that ask questions that are informed and updated on the situation, end up being the most helpful. Yes. So asking questions is empowering you to help and help the ICU team as well. So don’t hesitate. You’re not being a pest, you are preparing yourself to contribute.
Kerry
Well, remember the mindset though, the mindset of most people is that the doctors know best. Right? Certainly older patients, like my parents, they wouldn’t dream of challenging their doctor. Well, the doctor knows best, like, does the doctor know best? Or, you know, should we still ask these questions? So I’ve actually started going to my parents doctor’s appointments with them, because now I can listen to what the doctor saying. And if it doesn’t make sense to me, I can ask questions that they might not ask.
Kali Dayton
We are all products of our own experiences and training in life. And so understanding this aspect of Critical Care Medicine, understanding that this is very dictated by our training and experiences, can help you expose the teams to different information and different experiences that are probably better than what they’ve had thus far. So thank you so much for everything you’ve shared. I appreciate all that you guys did for your sister, and I think you’ve definitely saved her life. And that can be a shared experience and story of so many listeners. So thank you so much.
Kerry
Thank you so much for everything.
Transcribed by https://otter.ai
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