Transcript
Speaker: Welcome to Critical Matters, a sound podcast covering a broad range of topics related to the practice of intensive care medicine.
Speaker: Sound provides comprehensive critical care programs to hospitals across the country.
Speaker: To learn more about our programs and career opportunities, visit www.soundphysicians.com.
Speaker: And now, your host, Dr. Sergio Zanotti.
Speaker: Okay.
Speaker: For an unconscious patient, ma'am, go ahead.
Speaker: Hi, person won't wake up.
Speaker: Okay.
Speaker: He's making weird noises.
Speaker: Okay, is his breathing normal?
Speaker: No.
Speaker: Okay.
Speaker: No, he stopped breathing for a little while, and then he started again, and he's making weird, odd noises.
Speaker: Okay, how old is he?
Speaker: 34.
Speaker: Okay.
Speaker: And he's unconscious?
Speaker: Yeah, he won't wake up.
Speaker: Okay, I'm going to walk you through CPR instructions, okay?
Speaker: The heel of your hand on the center of his chest, right between his nipples, and put your other hand on top of that hand, and you're going to push down hard and fast at least two inches deep, allowing his chest to rise.
Speaker: That hand?
Speaker: Yes.
Speaker: Okay.
Speaker: Two, three.
Speaker: In today's episode of the podcast, we will focus on the forgotten patient, the loved ones and families of critically ill patients.
Speaker: We will explore the topic through the lens of a cardiac arrest co-survivor.
Speaker: Our guest is Kristen Flannery, a cognitive neuroscientist and social psychologist.
Speaker: Kristen is a co-survivor of cancer twice and a co-survivor of sudden cardiac arrest.
Speaker: She is the voice you heard on the 911 call performing life-saving CPR on her husband, Dr. Will Flannery.
Speaker: She's also known for her social media alter ego, Lady Glockenflecken.
Speaker: In 2022, Kristen co-founded Glockenflecken LLC, where she works to advocate for caregivers and co-survivors of medical trauma and critical illness, community CPR and AED use, and sudden cardiac arrest survivorship.
Speaker: She has written about her experience as a co-survivor in medical journals and has received an EMS cardiac arrest safe challenge coin, the Citizen CPR Foundation's 40 Under 40 Award, and the American Heart Association's Resuscitation Champion Award.
Speaker: We are delighted and truly honored to have her as a guest today.
Speaker: Kristen, welcome to Critical Matters.
Speaker: Thank you.
Speaker: Thanks for having me.
Speaker: So I think this is a topic that you have brought to my attention at a recent critical care conference and really talking about what it means to be part of a critical illness of a loved one and being a co-survivor of cardiac arrest and in your case also of cancer.
Speaker: And to some extent, it's a...
Speaker: For you as a personal story, I think it's a story of not necessarily what we would call post-traumatic stress, although there was a lot of that, but really post-traumatic growth because you really have taken that pain and channeled it into something positive.
Speaker: but really trying to advocate for families as yourself and really pointing to the medical community a big hole in our care that we are really forgetting about a very important part of the equation, which is the spouses, the kids, the parents of our critically ill patients.
Speaker: And that's what I wanted to talk about today.
Speaker: Yeah, it's great.
Speaker: So maybe we can start with a little bit of your personal history.
Speaker: And maybe we can start how you and Will met, I guess, at Texas Tech and what happened after that as you transitioned through his training and your training and how you unexpectedly at a very young age became a co-patient.
Speaker: Mm-hmm.
Speaker: Yeah, so we met in college at Texas Tech University in Lubbock, Texas.
Speaker: We were both part of the Honors College and we met in the Honors dorm where, you know, we had some mutual friends and that's where everybody would kind of hang out.
Speaker: And so it's a very nerdy meet cute, I guess, but yeah.
Speaker: We got to know each other and, you know, had a lot of similar values and sense of humor and ambitions.
Speaker: And so it just felt like a really comfortable, good match.
Speaker: So we met, I think the, let's see, it was the junior year.
Speaker: So we had a couple of years in college.
Speaker: And then, you know, our senior year, of course, it was time to figure out what was going to happen afterward.
Speaker: Um, and he wanted to go to medical school and I wanted to go to graduate school and our application timelines were completely different.
Speaker: The med school calendar was, you know, everything happened much sooner than for the grad school calendar.
Speaker: Um, and so he had already, you know, he had to pick where to apply and all of that before I even had any clue where I might want to apply.
Speaker: So, uh, towards the end of the med school application cycle, um, I, uh,
Speaker: you know, found out about this program and research area at Dartmouth and applied and I got in and I said, well, that's where I'm going.
Speaker: Do you want to come?
Speaker: So he applied, but it was so late in the cycle.
Speaker: I think they had already given away all but just a couple of spots.
Speaker: So long story short, it was a lot of, you know,
Speaker: Intense just waiting and hoping and drama, kind of last-minute drama.
Speaker: But he got the last interview spot.
Speaker: He got put on the wait list.
Speaker: And then two weeks, I think this was in –
Speaker: probably June, about two weeks before he was all set to move to Houston to go to medical school.
Speaker: He got the call that he had gotten in off the wait list.
Speaker: And so we switched gears and we moved to New Hampshire together.
Speaker: And the rest is kind of history.
Speaker: We got married during med school and grad school.
Speaker: I was in grad school for, as you mentioned, cognitive neuroscience and social psychology.
Speaker: And then I
Speaker: I graduated a couple of years before he did.
Speaker: So I thought, well, we're kind of out here in the middle of nowhere.
Speaker: There's not a lot of career opportunities for me at this moment.
Speaker: And so, you know, why not go ahead and just use this opportunity, start a family, because we knew that was something we wanted in our future.
Speaker: And so we did, we had our first daughter in the, I don't know, third or fourth year med school, all blurs together now.
Speaker: But, you know, we went against all the quote unquote good advice and had a med school baby.
Speaker: But it was a good thing that we did because when the baby was about a year old, Will was diagnosed with testicular cancer.
Speaker: And that of course was just a big shock, you know, to our system because
Speaker: even though it's one of the, you know, quote, good cancers.
Speaker: And I hate that term because no cancer feels good or is good, but it's a very treatable cancer.
Speaker: But even so, you know, that's a cancer that happens mostly to young people.
Speaker: And when you are in your mid-20s, as we were when that happened, you know, you still feel like your whole life is ahead of you and you feel a little bit invincible and you're healthy and in your prime.
Speaker: And, you know, you're not
Speaker: sore when you get out of bed yet, things like that.
Speaker: And so it really was a psychological shift.
Speaker: And, you know, it was difficult to kind of take on this new identity, right, of cancer patient and co patient that cancer was now a part of our lives.
Speaker: So that was really just mind altering, you know, it turned out,
Speaker: You know, best case scenario, he just had to have surgery and that was all that it required.
Speaker: So he had an orchiectomy.
Speaker: He did not have to have radiation or chemo.
Speaker: And that was kind of the end of that.
Speaker: We were told, you know, life will be able to go on pretty much as normal from here.
Speaker: So we just kind of put it behind us and moved on.
Speaker: And we had, again, against all the good advice, we had another baby in residency.
Speaker: So I had started my career at that point.
Speaker: I was working at a university in a center for gifted education.
Speaker: I kind of switched gears into the university.
Speaker: education administration kind of roles.
Speaker: And he was in residency for ophthalmology at the University of Iowa.
Speaker: And we had our second baby.
Speaker: And then when she was about a year old, so same as the first one, when she was about a year old, he got testicular cancer in the other testicle.
Speaker: And that was really a blow because
Speaker: for many reasons, you know, one is just so statistically unlikely, you know, there's already, you narrow the pool down to people who got testicular cancer once.
Speaker: And then within that pool, 1% of those get it twice.
Speaker: And it was not a reaction to any sort of treatment because all he had had was a surgery.
Speaker: He had not had radiation or chemo.
Speaker: So just luck of the draw, you know, got it again in the other testicle, um,
Speaker: So that time was more complicated to figure out what we wanted to do about it, because now, you know, you're talking issues of fertility and we were still, you know, late 20s, early 30s, somewhere in there.
Speaker: So we had to think about, you know, are we done with our family?
Speaker: We had to think about hormone replacement therapy and how would he, you know, be able to have access to the testosterone that he needed.
Speaker: And I learned all about why testosterone is, you know, important for so many things.
Speaker: I had no idea it had a big effect on so many systems, but I found that out the hard way.
Speaker: Yeah.
Speaker: So we, you know, dealt with that.
Speaker: And again, he just had surgery.
Speaker: He didn't need radiation or chemo again, thank goodness.
Speaker: But he did start hormone replacement therapy.
Speaker: And that has been just a decade long.
Speaker: I mean, that's still something that we struggle with.
Speaker: That is a really kind of, you know...
Speaker: not overlooked, but certainly not talked about as much, that aspect of things that, you know, that is a rough road and it's hard to get things right.
Speaker: And it's difficult on everyone.
Speaker: It's difficult on the patient.
Speaker: It's difficult on the people living with the patient, people who love the patient.
Speaker: Um, so that's been a whole journey as well, but, um,
Speaker: You know, he's pretty, pretty stable now.
Speaker: Probably still some tweaks to be done, but for the most part, everything's going pretty well.
Speaker: And he was able to graduate residency on time.
Speaker: And, you know, that was a concern for a little while, but thankfully his program was wonderful.
Speaker: um, about supporting him and, and kind of pitching in for him.
Speaker: Um, that could be a whole other podcast about how to have a good residency program like that.
Speaker: Yeah.
Speaker: Um, but yeah, he graduated and, and we moved out to the West coast and he started, um, work in a private practice out here.
Speaker: And, um,
Speaker: And life was starting again, right?
Speaker: Yeah, we were finally settling in and kind of starting on the life that we had worked so hard for, yeah.
Speaker: For sure.
Speaker: And through reading books,
Speaker: some of your papers and writing, it also is very evident that those two experiences that you described, and we talked a lot about the patient in this case, but also had an impact on you as a spouse, as a young spouse, and so many unanswered questions.
Speaker: And like you share with the hormonal therapy, so much that you had to find out the hard way
Speaker: as opposed to maybe the medical community facilitating some of this a little bit better, right?
Speaker: So I think it already puts you through a difficult position that literally millions of families go through on a regular basis.
Speaker: Mm-hmm.
Speaker: And it's a, it's a, it's an opportunity for healthcare, um, to do better for sure.
Speaker: But it just shows you like how complex, right.
Speaker: Things are, you're talking about, okay, we, we have a cancer and I have a recurrent cancer, but then there's.
Speaker: all the other entanglements of lifelong hormonal therapy what does it do at home how do you do it i'm sure also there's a whole another podcast in terms of getting that approved and getting that on time so insurance yeah
Speaker: Yeah, it just adds so many layers of complexity, and I think it starts to push us.
Speaker: And really what I wanted to focus about today, which is the forgotten patient, which I do believe that there are many, many clinicians listening to us who have the best intentions of being kind, of being compassionate.
Speaker: But yet, a lot of times I think families are blind spots for us.
Speaker: We might give them an update, right?
Speaker: I often hear, unfortunately, I hear comments and sign outs of, oh, that's a difficult family.
Speaker: And what I always try to remind people is that maybe you should be thinking that it's a family in a very difficult position.
Speaker: Right.
Speaker: And that how would you be in that position?
Speaker: And more importantly, what can you do to help them?
Speaker: Because, well, we'll talk about it a little bit later, but there's little actions and there are little things that people do that can make a huge difference, right?
Speaker: Yes.
Speaker: Yes, very much.
Speaker: So let's talk, Kristen, now of...
Speaker: May 20th.
Speaker: COVID is rampage.
Speaker: And that is the evening that we played the 911 tape.
Speaker: And tell us what happened and what was it for you to be the family member, the loved one of a patient who had a sudden cardiac arrest?
Speaker: Yeah.
Speaker: Yeah.
Speaker: Yeah, so that was May 11th of 2020.
Speaker: So it was right in the middle of all the lockdowns and kind of the height of the COVID scare.
Speaker: You know, we didn't know a lot about it yet, but it was starting to be rampant in the U.S. We didn't know if masks worked yet.
Speaker: We didn't have a vaccine yet.
Speaker: I mean, it was very much in that.
Speaker: time where everybody was, you know, scared and uncertain about things.
Speaker: It was the night after Mother's Day, actually.
Speaker: So we had a really nice Mother's Day and then went to bed and 445 in the morning, I woke up to him making these really loud
Speaker: sounds.
Speaker: And, you know, I was coming out of a deep sleep and was groggy and I thought he was just snoring.
Speaker: And so I kind of pushed him over a little bit, you know, tried to roll him over where he might stop snoring, but, um, that didn't do anything.
Speaker: And then I kind of, you know, shook his shoulder a little bit to see if I could wake him up.
Speaker: And, and he didn't respond in any kind of way that he normally does.
Speaker: He just kept making these sounds and,
Speaker: That's kind of when I registered that something was wrong.
Speaker: But I am not medically trained.
Speaker: I am not a physician.
Speaker: I am not in medicine in any way.
Speaker: And so I didn't know at the time.
Speaker: But of course, those were, you know, agonal respirations that I was hearing.
Speaker: And they sounded a little bit, you know, urgent in some primal way.
Speaker: I didn't know what they were, but I knew that they're not right.
Speaker: You know, something about this is bad.
Speaker: And so I called 911.
Speaker: And as I was dialing, I put my head on his chest to see just sort of, I don't know, out of instinct or because that's what you see in the movies or who knows why.
Speaker: But I did that and I registered with, you know, some part of my brain that his chest wasn't moving up and down and I didn't hear anything in it.
Speaker: No heartbeat that I could tell, you know, but it didn't really fully sink in.
Speaker: It was just sort of like a fact that I registered at that moment.
Speaker: And so then...
Speaker: I talked to the dispatcher, as you heard, and she's the one who recognized the signs and knew what to do about it.
Speaker: She knew that he was having a cardiac arrest and told me to begin CPR, and she instructed me on all of that.
Speaker: I had just had a cervical disc replacement a few months before, and he's about 13 inches taller and, you know, 100 pounds heavier or something or more.
Speaker: Um, and so I, I was really concerned about my ability to move him to the floor.
Speaker: She had asked me to do that.
Speaker: And I thought I can't do that without hurting both of us.
Speaker: Um, I didn't, I'm kind of glad that I didn't know at the time, you know, how, how, uh, how that decision might affect the outcome.
Speaker: Um, but thankfully we have a pretty firm mattress.
Speaker: Uh, so I did CPR on him for 10 minutes in the bed and
Speaker: before paramedics came and the dispatcher, her name was Lisa.
Speaker: She stayed with me the whole time, kept, you know, counting to help me keep pace, just started taking information, asking me other questions.
Speaker: So we would kind of alternate between the counting and the questions.
Speaker: And it was just the longest time.
Speaker: most agonizing 10 minutes of my life.
Speaker: And I was afraid, you know, my kids were sleeping in the next room.
Speaker: They were eight and five at the time.
Speaker: And I, my biggest fear was just that they would come in, you know, and see all of this.
Speaker: And so I was just hoping that they would stay in bed, stay asleep and not have to see their dad like that because I was watching him turn blue and then purple.
Speaker: And, you know, you all know very well,
Speaker: you might, I'm sure you're used to it at this point, but when you look at a human body that is, you know, dying, it doesn't move the way that you expect it to move.
Speaker: It doesn't have the color you expected.
Speaker: It just, it looks all wrong, you know?
Speaker: Um, and so when you're looking at a body like that and that body is your husband and your children's father and the person that you're building a life with, um,
Speaker: it's really traumatizing, you know?
Speaker: Um, and so I didn't want to, I didn't want to have the kids see something that they couldn't unsee.
Speaker: And so I asked the dispatcher to tell the paramedics that they were there.
Speaker: And, um, when they arrived, they shut the kid's door and thankfully they stayed put and they didn't see anything, but, um, they came in and they took him and they, they shocked him five times, I think before, um, his heartbeat started.
Speaker: It gave him
Speaker: I don't know, I think three rounds of epinephrine and a dose of amiodarone and probably other things I don't know about.
Speaker: I watched them take him down the stairs.
Speaker: And by that time he was gray, you know, that ashy gray color.
Speaker: And they laid him on the living room floor because it was hardwood down there.
Speaker: And I saw them get out.
Speaker: all their equipment and, you know, I saw the paddles and I heard a flat line and somewhere I registered, you know, oh, that's, that's supposed to be a pulse, you know, that's supposed to be a heartbeat and it's a flat line.
Speaker: Um, and then I saw that they were about to put the paddles on him and I couldn't watch and I didn't want to be a distraction.
Speaker: or lose my composure.
Speaker: And so I turned around and went up the stairs.
Speaker: And as I was climbing up the stairs, I heard them deliver the first shock and I heard his body just slam against our hardwood floor.
Speaker: And he is six foot four.
Speaker: So it's a big body.
Speaker: And to see him just, you know, laying there limp and gray and then hearing him slam against the floor, it was just...
Speaker: awful.
Speaker: The whole thing was, was extremely traumatic.
Speaker: And I'm so thankful that I, you know, was able to remain calm.
Speaker: And I just went into this kind of eerie place of just what needs to be done right now.
Speaker: You know, I just sort of went on autopilot or something.
Speaker: I don't know, maybe it's what you all experience in your jobs, but.
Speaker: you know, I wasn't really taking in the too much about the emotional aspects of it at that time, because I knew if I let myself think about that in that moment, that I may not be able to do what needed to be done.
Speaker: So I'm glad I was able to, to do those things.
Speaker: But, you know, it was the hardest experience of my life.
Speaker: And then
Speaker: You know, they took him to the emergency room once they got his heartbeat back.
Speaker: And then I had to do the next hardest thing I'd got in my life, which was to go into my kid's room and try to say something to them about what had happened.
Speaker: And at that point, I did not know.
Speaker: Would he be, would he survive first of all?
Speaker: And if he did, would he be himself?
Speaker: Would he remember us?
Speaker: Would he remember himself?
Speaker: Would he be able to function?
Speaker: Would, you know, what are we talking about?
Speaker: What kind of damage has been done?
Speaker: I didn't have answers to any of those questions.
Speaker: And of course, kids ask so many questions and you know, that's their daddy.
Speaker: So yeah,
Speaker: I had to figure out what to say.
Speaker: And I just said that he got sick and needed some equipment that we didn't have here at home.
Speaker: And so the paramedics came and took him to the hospital where they had that equipment.
Speaker: And, you know, we'll, we'll learn more later.
Speaker: That's kind of all I could say in the moment.
Speaker: I didn't want to lead them to any questions that I didn't have answers to or anything that was too scary before, you know, if it wasn't going to be necessary, I didn't want to
Speaker: them unnecessarily.
Speaker: So just tried to give them the information as I had it, but in a kid-friendly way.
Speaker: But, you know, kids are intuitive and they're smart and they pick up on, you know, people's emotions around them and they know when something's just not quite right.
Speaker: So, yeah, it was tricky.
Speaker: And then
Speaker: And there's no right answers there, right?
Speaker: I think that nobody has expertise on that.
Speaker: But you're right.
Speaker: I think with kids in critical illness, they pick up more than we think.
Speaker: And I think trying to explain things in the simplest but closest to the truth way is probably always best.
Speaker: And the one thing that I think a lot of our listeners or our clinicians can relate to a lot of the clinical aspects of what you're describing is
Speaker: But what probably very few of them can relate to is the setting.
Speaker: This is happening in your bedroom.
Speaker: And this is happening to your loved one.
Speaker: And that is something that clinicians, if some may have experienced, but usually it's a stranger in the hospital.
Speaker: And it's a very different context, right, of what you were going through.
Speaker: The other thing that you didn't mention here is...
Speaker: but I know from other accounts that you have shared is that while this was all happening, everybody in your house had a hazmat suit, mask, and you couldn't even see who they were, right?
Speaker: So it probably was a surreal situation on steroids because not only what's happening, but then all these people that seem that they came from out of space are in your house, right, working on your husband trying to revive him.
Speaker: So when he went to the hospital, I would imagine that because of the timing that you weren't allowed to go to the hospital or if you were, it was very briefly and you really had to wait at home for news.
Speaker: Is that what happened?
Speaker: Yeah, so I was allowed to go.
Speaker: I didn't.
Speaker: I didn't know why, because I knew, you know, it was all over the news that no visitors were allowed in the hospitals.
Speaker: And so I already thought that was unusual.
Speaker: But I wasn't going to say no.
Speaker: So I went.
Speaker: And then when I got there, I saw a sign on the door that said, you know, the three reasons why you could allow someone in.
Speaker: One of them, I think, was pregnancy.
Speaker: You could, you know, if someone was having a baby, their partner could come in with them.
Speaker: There was some other one.
Speaker: And then the only one that applied to me was end of life case.
Speaker: And so that's how I realized that.
Speaker: oh, wow, you know, just how serious all of this stuff was is end of life.
Speaker: I mean, I knew his heart had stopped, but then they got his heartbeat back, you know, and so I thought we were kind of at least somewhat out of the woods, but then seeing those words, end of life case, it just felt like, oh, no.
Speaker: And so I went in, and they put me in this waiting area that's in the radiology department,
Speaker: section.
Speaker: Um, I like to think that this will happen next was because of COVID and, and the protocols were disrupted and hadn't really been, you know, new ones hadn't really been well established yet, but who knows?
Speaker: Um, I think this kind of thing happens a lot because it's, it's just due to, you know, some overlooked details, but they put me in a waiting area in radiology where the patients who were waiting for a scan, um,
Speaker: would go after they had their gown on while they were waiting for someone to come take them back to get their scan.
Speaker: The problem with that is that in radiology, the walls are aligned with lead.
Speaker: And so it cut off my cell phone signal.
Speaker: So I'm already there alone because no one else can come with me.
Speaker: I'm not allowed to, or at least no one is taking me to wherever he is.
Speaker: You know, I'm not with him.
Speaker: I'm just standing there alone and in shock and, you know, shaking and trying to make sense of everything.
Speaker: And I'm also the liaison to all of our family members who, you know, like his parents and my parents and our close friends who I had let know what happened.
Speaker: And so I
Speaker: you know, they cut me off from my ability to share information with them.
Speaker: And they also cut me off from my support network in a time of my greatest need, you know, for support, for social support.
Speaker: Um, and so I, you know, I was supposed to wait in there and, and wait for updates from the various staff members who would come in and, and tell me what is going on.
Speaker: And, um,
Speaker: but I couldn't get any cell phone signal.
Speaker: So I would walk down the hallway and there was an area where I could still see the room to see if anyone was coming in to give me an update.
Speaker: Um, but I, it was closer to the waiting area.
Speaker: It was still on the other side of the waiting area, but, but over there I could pick up a little bit of signal.
Speaker: Um, and so I would just stand there and make my call or send my text or whatever I needed to do.
Speaker: And then I would go back into the room and wait until I needed to
Speaker: you know, check again to see if anyone had, had asked me anything or if I wanted to make a call.
Speaker: Um, and so I'd kind of go back and forth.
Speaker: I think I was there for about an hour and I got a few updates, um, during that time, but, um, which, you know, I could talk about that as well.
Speaker: That, that was a little bit tricky, but ultimately they, the lady who had let me into the hospital, um,
Speaker: came and found me and told me that I had to leave the hospital because I was making people nervous because they didn't know if we had COVID and that's why he had his cardiac arrest, right?
Speaker: They had done a test on him, but this was back when it took 24 hours to get a result.
Speaker: And so they didn't know yet.
Speaker: And I was wearing a mask, but again, we didn't know if masks were effective at that point.
Speaker: Um,
Speaker: And so they were nervous that I might be spreading COVID.
Speaker: And so they kicked me out of the hospital.
Speaker: And I just feel like, yes, that was during COVID and maybe it's an extreme example, but maybe not because that kind of thing of just not thinking about that there's no cell phone signal in this part of the building and how that might affect the patient and the family and, you know, all these other people.
Speaker: I think decisions like that get made all the time without even realizing, you know, that you're creating a problem.
Speaker: Absolutely.
Speaker: And I think what I always tell my kids and but I think it's true for life is that most people that do things that can be harmful and do it out of ignorance or blind spot more than deliberate right intentionality.
Speaker: But I think it points out to a big problem we have in healthcare.
Speaker: And I agree.
Speaker: I think that your experience probably was worse because of COVID.
Speaker: However, I think there's elements of the isolation, the lack of information, the lack of true compassion that would have probably been present even without COVID.
Speaker: And I think that's why what you're doing today and sharing your story is
Speaker: and being an advocate for families and patients as well is so important.
Speaker: So the good news is that he did great, right?
Speaker: He survived.
Speaker: He woke up.
Speaker: He, I presume, was on a ventilator, taken off the ventilator.
Speaker: He was neurologically intact as far as they could tell that time.
Speaker: And that all happened probably, from what I understand, within days, which is phenomenal.
Speaker: Eventually, he came home.
Speaker: you then had trouble, right?
Speaker: And you talk about or you write about the quiet place.
Speaker: Could you share that with us, Kristen?
Speaker: Yeah, so, right, as you said, so that was a Monday morning that he went to the hospital and he was home by dinnertime on Thursday.
Speaker: So, you know, that piece is just absolutely miraculous.
Speaker: And I have
Speaker: absolutely no qualms with the quality of the medical care that he received.
Speaker: And I am so grateful to the people that gave it to him and, and saved his life and brought him back.
Speaker: But once that crisis, you know, period was over where he was in the ICU and, you know, we weren't sure what was going to happen.
Speaker: And then we got little bits of information over the course of those days.
Speaker: And during that time, I just really had to stay focused on,
Speaker: the facts of the situation.
Speaker: And so it's kind of almost a little bit detached, you know, but then once he came home and that crisis mode was over and I could just relax theoretically.
Speaker: Yeah.
Speaker: I, I, something really weird happened where I just couldn't find any words, you know, I just, I, it was kind of like I was in shell shock then at that point.
Speaker: Right.
Speaker: And I just,
Speaker: I noticed because I did have training in cognitive neuroscience, so I'm nerdy like this, but I noticed that I was having a hard time finding words, using words, making sense of words, following conversations.
Speaker: And I thought, huh, that's curious, kind of interesting.
Speaker: But, you know, couldn't do anything about it at the time.
Speaker: But then later on reflecting on it, you know, I...
Speaker: I realized, you know, that was a trauma response and that is probably very common after many kinds of trauma, including medical trauma.
Speaker: Um, and I, I didn't know how to explain to people, you know, that my brain just wasn't working and I'm not myself.
Speaker: I am not okay right now.
Speaker: Um,
Speaker: And so I called it the quiet place because it just, it did feel, feel very quiet.
Speaker: I just had no language and I had trouble following language.
Speaker: I mean, I could follow the logistics and, and, you know, talk about just sort of the straight facts of the day, but anything other than, you know, things related to him and his recovery, it was just, I didn't have any access to any of that.
Speaker: And,
Speaker: conversations felt so trivial and unimportant and couldn't follow them, couldn't concentrate well enough.
Speaker: So I called it The Quiet Place.
Speaker: And the thing that really helped me come out of The Quiet Place was to find the words that were missing, if that makes any sense.
Speaker: So I didn't know this.
Speaker: I didn't know to do this.
Speaker: But just over the course of the next six months or so,
Speaker: You know, I found things here and there.
Speaker: One of the things that I found was a paper by Kirstie Haywood and Katie Dainty called The Forgotten Patient.
Speaker: And that title just jumped out at me because I felt like that is me, you know.
Speaker: And so I read that and they had words in there like co-patient and co-survivor and, you know, concepts like that.
Speaker: And I thought, how have I never heard of this before?
Speaker: You know, with the two rounds of cancer and everything before that, like this is what this experience is.
Speaker: is that represents, it captures it.
Speaker: You know, I'm not just...
Speaker: a family member.
Speaker: I'm not just someone on the side.
Speaker: This all happened to me too, you know?
Speaker: Um, so that felt really validating and it helped to have a name to call it because then you can start talking about it with people and explaining why these things are affecting you so much.
Speaker: And another thing I found was a lay responder, um, and bystander resource guide that was written by a paramedic in Canada named Paul Snowball and he works for the region of Peel and
Speaker: And since then, they've made this publicly available online.
Speaker: And he just worked with, he'd seen so many other people in my situation that responded to an out-of-hospital cardiac arrest, and he started to notice they all had very similar questions or things that were bothering them or, you know...
Speaker: he started to notice some patterns in all of this.
Speaker: And so he just put all of the answers and resources and tips and suggestions and things into a written document.
Speaker: And he's published that and it's available online.
Speaker: You can find it if you Google it, but it answers a lot of questions that lay people have.
Speaker: Like, what, what was that sound he was making?
Speaker: Why was he doing that?
Speaker: Why do they turn those colors?
Speaker: What is a cardiac arrest?
Speaker: I had,
Speaker: I'm a very educated person, but I'm not medical.
Speaker: I didn't know the difference between a cardiac arrest and a heart attack.
Speaker: And I think most people don't.
Speaker: So it, you know, explains things like that.
Speaker: And that helped to kind of close some loops, you know, that you just ruminate on of open-ended questions.
Speaker: It helps to tie up those loose ends and let your brain find a little peace about those.
Speaker: And then the last thing,
Speaker: I found that really allowed me to move out of the quiet place and start taking action was a book called In Shock by Dr. Rana Adish, who's a pulmonary and critical care physician.
Speaker: And she's also a patient of some very serious illness and has almost died a few times or maybe has died a few times.
Speaker: And she writes about the experience, you know, going through critical care and being in the ICU from both the
Speaker: the physician side and the patient side.
Speaker: And even though I wasn't, you know, the main patient with a capital P, a lot of what she described is what I experienced.
Speaker: And that really helped me feel like, okay, I'm not crazy.
Speaker: I'm not imagining this.
Speaker: I'm not just being too sensitive.
Speaker: This really is how the system is.
Speaker: And these really are problems.
Speaker: And I'm not the only one that sees them
Speaker: and thinks we need to do something about it.
Speaker: And so those three things together really helped me find my voice again and my thoughts again and kind of come out of that and move into advocacy.
Speaker: And I think that obviously hearing your voice has also made a lot of clinicians like myself rethink maybe some of our blind spots.
Speaker: But what's fascinating, Kristen, of your story is that there's universal themes here, right?
Speaker: So all trauma occurs to individuals who need to feel that it only happened to them.
Speaker: And when they find out that it's...
Speaker: prevalent among many others, it validates their experience, right?
Speaker: It's not only you, it happens to a lot of people who go through similar situations.
Speaker: The other thing is that in the ICU, we live in a very, obviously, it's high stakes, high acuity, very intense relations with patients.
Speaker: But a lot of times, I mean, somebody like a young person like your husband,
Speaker: leaves the ICU after a cardiac arrest and the ICU team is high-fying each other because they saved the patient, which is true, but we have no notion of the road ahead and how hard that will be, right?
Speaker: So we don't talk about it.
Speaker: We don't share with that.
Speaker: And slowly we've learned...
Speaker: that patients have what we call post-ICU syndrome, that there's a lot of trauma involved with being severely ill.
Speaker: But we've also learned more recently that families go through that.
Speaker: And there is science behind this, but we still need to make more and more clinicians at the bedside aware of this blind spot.
Speaker: And then obviously, which is more important is
Speaker: What can we do to move the needle?
Speaker: And we'll talk a little bit more about that.
Speaker: But before we go there, I know that we have some time constraints.
Speaker: One thing that caught me from your story that we were talking before we recorded, that is a theme I've seen in other situations.
Speaker: And I think it's important for clinicians, especially for all the physicians who are listening.
Speaker: We don't always value or we don't always appreciate what families really value.
Speaker: We obviously as physicians give tremendous value to our knowledge, to the capacity a team has to provide medical care.
Speaker: But when you think of this whole ordeal with the cardiac arrest, especially your heroes, um, are Lisa, Lieutenant Greg and Roger.
Speaker: You want to just say a couple of words about those people?
Speaker: Yeah, so Lisa is the 911 dispatcher that you heard on the call, and she's my hero because she just knew what to do.
Speaker: She knew the signs.
Speaker: Without her, I wouldn't have done CPR.
Speaker: You know, everybody gives me credit, but I give her credit because I didn't know to do it, and if it weren't for her, my husband wouldn't be here probably, and she did just an excellent job at walking me through that and staying calm and sharing all the information with the paramedics and just...
Speaker: you know, just was above and beyond anything you could hope for.
Speaker: I'm so glad she picked up the phone that day.
Speaker: Lieutenant Greg, he was one of the paramedics that came in and he, you know, as you mentioned, they were in hazmat suits and all I could see of people were their eyes.
Speaker: everything else was covered up and they had hoods on.
Speaker: And so, you know, even the eyes were hard to see because sometimes the hoods would fog up.
Speaker: But the thing that I remember about him, he was a liaison between the paramedics and me.
Speaker: And he would come up and tell me what was happening.
Speaker: And he would use, you know, plain language and
Speaker: that was really helpful.
Speaker: But the thing that really stood out and makes me still kind of, you know, tear up when I think about him is he had compassion for me.
Speaker: I could tell, right?
Speaker: He was being very clinical in his words.
Speaker: He was just being very, you know, this is the situation, this is what's happening.
Speaker: But I could see in his eyes, and that was all I could see of him, but I could see in them that he had compassion, that he understood the gravity of the situation, that he understood that those two kids were in that room.
Speaker: He told me later when we did a reunion meeting with everybody that he actually made eye contact with my older daughter,
Speaker: Before, so they shut the door, they came up and there's all the paramedics in their asthma suits and my kids were awake, but thankfully, they stayed in their beds.
Speaker: But he said he made eye contact with one of them and then the door closed and he said that moment just haunted him.
Speaker: You know, he saw those kids in there and he, you know, they come in your house and they see the intimacy.
Speaker: They see the family photos on the wall.
Speaker: They see, you know, the family together there and they see how vulnerable everyone is and how scared everyone is.
Speaker: And he responded to that aspect of it as well.
Speaker: You know, he showed me compassion.
Speaker: He I could hear it in his voice.
Speaker: I could see it in his eyes, the words that he chose.
Speaker: He offered love.
Speaker: every bit of support that he could.
Speaker: He would answer my questions.
Speaker: He gave me, you know, things in writing.
Speaker: He gave me, um, the slip to get into the hospital cause he knew I'd want to go with him.
Speaker: Just, he treated me like, you know, another human instead of just like some case he was responding to.
Speaker: Um, and he showed me a lot of kindness and compassion and empathy for
Speaker: And then Roger, a similar thing.
Speaker: Roger was one of the nurses that my husband had while he was in the ICU.
Speaker: I think he was the last nurse he had because even my husband remembers Roger.
Speaker: He was the only person in all of my experience with the hospital system between the first cancer, the second cancer, the cardiac arrest, everything, the emergency room, the ICU.
Speaker: He was the first person, and this is right before discharge, who ever asked me how I was doing.
Speaker: And just the fact that he knew to ask that, I mean, it's not hard to know, right?
Speaker: I mean, but the fact that he was the only one, just the act of asking that meant so much and showed so much compassion.
Speaker: And then, you know, he did things like...
Speaker: He understood.
Speaker: He said, this must be hard for you and your family.
Speaker: And do you have any questions that I can help answer?
Speaker: Or, you know, here's my cell phone number.
Speaker: If you would like any updates, please feel free to, you know, text me and I'll update you anytime.
Speaker: If you want, again, we were separated.
Speaker: So, you know, if you want to speak to your husband, I can set up a FaceTime.
Speaker: You just let me know.
Speaker: He, you know, he sat there with him and he I brought some photos, some family photos up to the hospital and he went through the photos with my husband and just asked him questions about him, but not in a way that was like.
Speaker: I need to assess your cognitive function and your memory.
Speaker: And so we are going to do this task together, right?
Speaker: No, he just made conversation and was a human talking to another human about their family, you know, and he's asking about where your kids go to school and what are they interested in and what are their names and how old are they?
Speaker: And, you know, just all the things where really he was assessing my husband's cognitive function and he was also helping him exercise his cognitive function.
Speaker: Um, but he did it in such a kind, compassionate human way.
Speaker: And I mean, there's example after example of things that he did, but, but that is the common theme with all of them is they treated me like a human, right?
Speaker: And I think, Christina, it just speaks to what we were talking about before recording that at the end, it doesn't really matter what you know, what you do.
Speaker: It only matters how you make other people feel.
Speaker: And they made you feel seen, validated, and cared for.
Speaker: And that is exactly why we're talking today, because I do believe there's an opportunity for all our listeners, all our clinicians,
Speaker: to do little things that will help other family members and co-survivors or even those i mean who don't survive right co-patients is called them of critical illness to feel seen to feel cared for and i i really appreciate all you're doing and telling this story because you you you both i mean do it in a great way very eloquently it's also funny but it's also very touching so um
Speaker: I know that your goal now in your efforts is to make medicine more humane.
Speaker: And I think we all should embrace that.
Speaker: Where can people find you online or where are you active?
Speaker: I know you also have a podcast.
Speaker: We'll link all these to the show notes, but I just want to share a little bit with our audience as we close.
Speaker: Yeah, so you can find everything we do at glockumflecken.com.
Speaker: We're also everywhere on social media.
Speaker: I think we're most active on Twitter and Instagram, TikTok and YouTube, but we are kind of everywhere.
Speaker: And like you said, we do have a new podcast.
Speaker: It's called Knock Knock High with the Glockum Fleckens.
Speaker: And our main focus is to show, you know, to show
Speaker: kind of highlight the humanity in medicine.
Speaker: So to, you know, everything from showing that doctors are humans, you know, and we hear stories from people about their experiences as doctors and, you know, it's a comedy podcast.
Speaker: And so a lot of the times the stories are from training because that's where all the good, funny stories come from.
Speaker: But we, you know, we highlight the humanity of doctors, but also the humanity that doctors should show to patients and to co-patients and family members.
Speaker: And we do interviews with interesting guests and we play games with them and hear stories and it's a fun time.
Speaker: So we talk about, you know, as you mentioned, we kind of talk about some serious topics, but in really funny ways.
Speaker: And sometimes we're just silly.
Speaker: And so it's a fun listen.
Speaker: Absolutely.
Speaker: We like to close the podcast by asking our guests a couple of questions unrelated to the topic and really digging into that humanity, like you said, or other aspects of life.
Speaker: Would that be okay?
Speaker: Yeah.
Speaker: So the first question is related to books.
Speaker: Are there any books that have influenced you significantly or that you have gifted to others?
Speaker: You could ask my husband.
Speaker: I have a real problem with books.
Speaker: I buy them too much.
Speaker: I love books.
Speaker: I mentioned it earlier, but the one that really has influenced me the most in recent years has been In Shock by Rana Adish.
Speaker: That just...
Speaker: There are so many layers to it, and she writes so beautifully, almost poetically, and just really illuminates a lot of really interesting and important things.
Speaker: And I think, you know, I always recommend that book to anyone who interacts with critical illness in any way, whether that's as a patient, a family member, a physician, a nurse, whoever.
Speaker: That I highly, highly recommend, especially for an audience like yours.
Speaker: I think it's required reading.
Speaker: Absolutely.
Speaker: The second question is, what do you believe to be true in medicine or in life that most other people don't believe or at least don't act as they believe it?
Speaker: I say a lot and I really, really believe this and have said this ever since my own husband was in training, which is before you are a doctor or a clinician, you
Speaker: you are a human, right?
Speaker: And medical training sort of teaches
Speaker: doctors to suppress their humanity to ignore their humanity put it in a box and deal with it later and you know I can kind of see the intention behind that of you you've got a job to do and you need to be be sure you can do it but I don't think it does anyone any favors to deny your own humanity or to deny you know your humanity to other people and your interactions with them
Speaker: It's a great point.
Speaker: I think Picasso used to say that every kid is an artist and education takes it away from them.
Speaker: And that is a little bit of what happens, right?
Speaker: Every first year medical student is a great human being and then training kind of chips away from it to the point where we forget.
Speaker: But I think it's a good reminder, great reminder.
Speaker: And the last closing question, Kristen, is what would you want every listener, our critical care doctors and APPs who are listening to know?
Speaker: Yeah, I would want them to know that, and I know they know this, but to remind them maybe there's more to medicine than science or disease or research or surgical skill, right?
Speaker: That you're not just treating disease.
Speaker: You're not just dealing with biology and chemistry and these things.
Speaker: You're treating a person, right?
Speaker: And that person is deeply connected to other people and to their environment.
Speaker: And it is crucially important to consider that context in your interactions with your patients and in your treatment plans with your patients.
Speaker: And that, you know, your patient is not the only patient.
Speaker: attached to that particular instance of disease.
Speaker: So they're more than a case.
Speaker: They're a person and they come with other people and the whole thing needs to be seen and understood.
Speaker: And I think it speaks very powerfully to the goal of being a healer, right?
Speaker: It's not only reducing disease, but healing people in many ways and it goes beyond the patient.
Speaker: Again, thank you so much for taking the time to share your story.
Speaker: As I mentioned to you, for me, it was eye-opening and very touching when I heard you talk at the critical care meeting.
Speaker: Thank you.
Speaker: And I'm grateful for all you're doing and for all you do to also bring some levity
Speaker: with will to the world of medicine, but more importantly, for really advancing the goal of making care for very sick patients more humane.
Speaker: So look forward to hearing what's new and what you put out.
Speaker: And again, thank you so much for your time.
Speaker: Thank you.
Speaker: Thanks for having me on.
Speaker: Thank you for listening to Critical Matters, a sound podcast.
Speaker: Make sure to subscribe to Critical Matters on Apple or Google Podcasts and share with your network.
Speaker: Sound's transforming the way critical care is provided in hospitals across the country.
Speaker: To learn more, visit www.soundphysicians.com.
