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Mark Hudson, an ICU survivor podcast host, is all too well acquainted with delirium. He has dedicated himself to advocating for fellow patients and survivors to prevent the torture of delirium. He tells it to us straight and guides us towards improvements.

Episode Transcription

Kali Dayton 0:00
Okay, a huge objective of this podcast is to keep patient perspective at the front of our minds. It is time to turn the mic back over to the balance survivors that are coming forward to teach and guide us in our practices. I am ecstatic to have Mark Hudson share his experiences and insights. Mark, I’m so excited to finally have you on the podcast. Do you mind introducing yourself?

Mark Hudson 0:52
Yep, so my name is Mark Hudson. I am an ICU survivor oppo at various other things I get labeled with titles that healthcare professionals like to give you a patient leader, patient representative and other things but I prefer just mark that. So I was an X ICU patient here and Scotland.

I was in ICU for three weeks and spent 17 or 18 days in an induced coma where I had initially flu based sepsis that became double pneumonia that then progressed to ARDS and experienced ICU delirium. While it was in ICU, I also experienced a second bout of delirium that was confirmed delirium last year while I had an infection due to my hydrogen, Titus suppurativa, which required surgical intervention. So I advocate for both ICU and delirium. So that’s me.

Kali Dayton 1:56
And you have your own podcasts. Now, please tell us a little little about that.

Mark Hudson 2:00
So my podcast is ICU life recovery, which is available anywhere where you pretty much listen to podcasts. And it was basically a byproduct of the pandemic I had, I had listened to this podcast, and I started to look around, and I saw that there were lots of podcasts from healthcare professionals, points of view, and on topics that healthcare professionals thought were important, but there was no patient lead, or even patient involved from the side of being hosting, I felt that there was a gap there.

And I felt that that it was an area that needed to be represented. So I thought it was beneficial in both ways, it gave me something to focus on as an immunodeficient person in the middle of a global pandemic. And it also allowed me to sort of channel issues that I felt that were important that weren’t getting covered, and pull in my groups of professional friends to talk about specific topics of their expertise that I thought were important.

Kali Dayton 3:24
And the timing was crucial, not just to you, but to the world as we have had millions of people in medically induced comas. But you’re right, we’re not hearing it from those that have lived it. People have said, well, survivors don’t come back and tell me that. But speak to that. What was your experience in medically induced coma? And why do you think survivors don’t always speak out about their experiences?

Mark Hudson 3:49
So that was that’s a very complicated thing. So in terms of survivors not coming back, is yeah, there’s there’s many reasons is one good, don’t you don’t ask, as as the big thing, if you don’t do follow up, however, they do think they’re just going to wander back into the ICU and, and tell you about the issue. If you don’t engage with patients after ICU, then you find nothing out.

And that’s, that’s the other thing. And if there’s no follow up, why are they gonna engage with you? If you have not cared for them beyond the door of your ICU, then there’s no relationship there? Because if they’re in an induced coma, they have no idea who you are. So why would they engage with you?

Secondary, this is a highly traumatic experience. A massive experience. This is why PTSD numbers and ICU patients are so high. This is a massive trauma. Not everyone after experiencing No massive trauma particularly wants to go back and, and review it. A lot of people want to put it in a box, don’t in the back of the mind and move on. And that’s perfectly fair. There is another section of people who have been so traumatized that they can’t, they can’t speak about the traumas source fear.

There is also a dynamic group of people who have been so affected by it, that they maybe lack physically abilities. So they’ve been cognitively damaged to the point that they no longer have the ability to speak about it. So all of these things, you’re starting to narrow down your, your, your pool of people that will be able to be reciprocating to your, to your, your sort of questions or inquiries or even be able to cognitively analyze their situation and then produce information.

And even then, you know, people that just don’t don’t want to, it’s, it’s the fact that not patients are not here to appease the health care professionals. They’re not our stories are not yours, you have no right to them beyond what we wish to share. And, frankly, there’s quite a hostile body out there. And quite a lot of, of healthcare professionals. Not a lot of people, not anyone I’ve worked with, because I don’t work with people who don’t respect me as that they think that their medical degree, their qualifications, make them more important.

And when you think like that, you will never get feedback, because no one wants to share with you, you don’t create a safe environment for them. So another reason why I share my story is there’s 1000s of people that are either dead, or not able to, for whatever reason to share their story. And I have had what is quite a severe illness. You know, lots of people with sepsis, lots of people with ARDS, have lost limbs, things like that the extent of my effect from that are have some cognitive issues.

They’re not insurmountable, they’re not terrible. I have some lack feeling and my fingers and some fake feeling and my feet. But relatively speaking, I’ve got a week pretty lucky. In terms of ICU, my little best of my health, not so much from other conditions. But in terms of my ICU life. I got pretty lucky. Considering what I suffered, I had very severe disease, I had very severe mental health complications, I had anxiety, depression, I had PTSD.

So I experienced the gamut of ICU health issues, both physically and mentally, I have the ability to analyze it still have the ability to convey that. So it is my duty, not because it’s particularly going to help me, but it’s going to help others and it’s to represent them. And that is my duty for those that can’t. And that’s how I see it. My job is to represent others, and particularly the people who suffered similar things to me that can’t, are unable or just feel that they really don’t want to because they don’t feel safe to speak about it. And because it needs to be heard. And for a long time, it wasn’t heard. Yeah. It’s uncomfortable when people need to hear

Kali Dayton 9:12
You make so many good points. I mean, we’ve been sedating people for decades. And just now we’re passing the microphone to survivors. And I’m so grateful that you are such a bold advocate will link your Twitter account into this episode so that people can follow you on Twitter, you post very profound things, really insightful poems. If you could give the ICU community a little glimpse into delirium. What would you share? How would you do that? If they if you could help them see it from the patient’s eyes? And that moment of being in a medically induced coma or delirious for whatever reason?

Mark Hudson 9:51
So I have a poem that I wrote and 2019 titled delirium. Bullet to the brain. And I think that that is and this is the one that that everyone thinks is so profound, they think that this is is the best one. So I would like to say that if anyone has any self harm triggers or suicidal triggers that you maybe don’t listen to what I’m about to say. So I’m going to I’m going to speak, map my poem and make not get through it in one go, because it’s very emotional to me.

So delirium is crazy, and picture and scene, believing things that make no sense. being hunted down worldwide by nameless foes, being held down and water, drowning to death, brought back to suffer some more. Cut open and made to bleep from my breast, suffering for information I would give, put in situations designed to cause harm, put in a freezer to try and kill me, shot probes in my arms to force the truth. And in my defense, I was absolute, I would not be treated the safety of my family, I would not give in to those who would harm me.

They have so much to live for and achieve so stalwart in my resistance and belief. The toll it was taken in seven years, poking at my weakness and vulnerabilities. Breaking me down with time I sensed, found a gun, put it to the side of my head, pulling the trigger, hoping for death, keeping my family safe with the last act, time slows the fire burrowing deep in my brain, then darkness for a second, then back to hell again. So this is for versus the basically sama by Delerium experience in ICU. And in the sort of just under three weeks that I was in any coma and experiencing, I felt that seven years had passed. And every single day, I was tortured in various ways, whether it be waterboarding, whether it be cut open things, shoved into a various other means of, of torture,

and trying to get information on the location of various members of my family. At a certain point, my, my brain knew that who’s going to squat to give up their permission, and the only logical situation was more, and one of the types that broke out of my prison was them painting a gun, because they knew that if if I was no longer here, then then everyone would be safe.

And this, this is purely a delirium experience, that there is no reality of the situation. I’ve never caused myself any harm in the real world. But the key understanding of this world, there’s a few things, one fiscal year, my experience was very much real to me. And since having mental health treatment, I have detached the trauma memories associated with it, which means I can speak about this issues a lot more freely than I would have.

Secondly, and this is extremely important to anyone that’s dealing with awake and aware patients post delirium, and in the ICU setting, and any of the step down stages, whether it be level two HDU, or ward level is that you’re unaware of the delirium experience is very much real, and seeing things like it was just in your head, or was a bad dream, or it was a nightmare, or wholeheartedly unhelpful, and create a hostile relationship between the patient and you, because the experience is very much real to the patient. And by belittling it, you create a barrier between you and the patient, and you lose trust that will be extremely hard to regain.

I would urge everyone and anyone to be thoroughly aware of this. And it takes very, very little understanding and sort of institutional understanding to create systems that codify delirium. So that is tagged in notes that the patient is either ie actively delirious, in which case certain behaviors should be done and certain behaviors shouldn’t be done. So people shouldn’t be getting restrained for having delirium.

But you’re not you’re just gonna, you’re just then we reinforcing the issue and you creating a secondary barrier. So until you experience where people believe you to be the enemy. Why would you think strapping someone down will help the situation? You’re reinforcing the aspect that you are the enemy. And secondly, the use of of anti psychotics, which generally from from my understanding of literature is that they do the work to make clinicians feel better. And this will always be my point until someone shows me some research that says it tricks till you equate stolen patience doesn’t stop to you not being able to hear them doesn’t mean they’re delirious. Yeah. So

Kali Dayton 15:48
You’ve made some really good points on Twitter, especially about your feelings about quieting down patients. And I think that’s a powerful position, you have to advocate for patients to say, don’t just shut us up, help us, don’t just mask our terror. Help us out of it. As you have been going to delirium conferences and such, and you’ve been hearing the clinician side, you’ve been hearing discussions about delirium. As you’re sitting there as a survivor, what do you wish you could say or clarify for the ICU community?

Mark Hudson 16:22
So to answer this, I’m gonna kind of take along, as I as I often do, so when I kind of joined Twitter and other things, and writing my blog that has sort of mutated more into poetry repository, and then a blog per se, as occasional blogs, but mostly has the has my poems, I started out mainly as a sort of ICU focused person. Now the big reason for that is while I was in ICU, and pretty much up until my follow up, deleting was never mentioned. It just wasn’t spoken about sort of, like maybe six years ago.

Delirium. Delirium was known in my trust. And I think from a clinical side, they were aware of it. And I think in terms of like doing things, or there were things getting done, mostly because I think we had a delirium nurse, one of the, like, extreme part of me, extremely rare things. And here believe there are two in the country. They exist who are specialists purely in delirium, we also had co chairs of the same guideline, which was the first guideline into delirium, but that came much later.

So delirium wasn’t talked about really existed in the clinical world. But I don’t think there was much in the way of traction or particular awareness outside of the sort of delirium experts. So you’re geriatricians, who saw it kind of day to day, probably a little bit in terms of things like cash flow from your detox errs, and then vaguely in the ICU setting. So I was mostly kind of I thought, ICU experience, that’s the thing that that I have, that’s going to be useful. And then doctor, who was one of the co chairs for the guideline asked me to speak at our local trusts conference.

So I explained what a trust is, because maybe there’s anyone listening and American maybe doesn’t understand what that is. So in our NHS system, it’s not like a massive national control. There are, there are certain guidelines and things so a national level, but each individual local area, so we are organized, sort of in a county system, so a group of hospitals and then a regional area, court a their resources to provide care to the sort of area so those trusts are responsible for a geographical area for providing services.

So our trust, hi, the delirium conference, because, you know, we had one of the delirium nurses and people that were highly focused on it, so I was like, Sure, I’d found out that had to had delirium, so and a spoke and the delirium community is far more welcoming and my experience than than other health care areas and I know this might cause some discourse.

But realistically, they be invited me to speak when other areas maybe didn’t particularly want to hear so from that point, but Mashery he recommended me to speak at the European Delerium Association’s training day for the conference, which opened up to a much bigger audience. And that was my first time sort of big conference. And what I would say is that the delirium community, whether it be pediatric intensive care, adult intensive care, or the medical areas, are all very passionate, and all very aware of like the patient experience, and in general, although not completely are very good.

They’re not they are they their fate in the good faith, they seem to understand the problem and are more willing to involve patients in the solution, or at least, that’s my experience. Now. There are a section of the community who still believe in sedating heavily and using things like anti psychotics which ARKS me. But no one’s opinion has shifted quickly, you have to fight against the universal, it’s how we’ve always done it thinking and that, you know, I’ve been doing it for for 20 years, and no patients ever came back to tell me that this was bad.

Well, there’s there’s two focuses in your in your argument there. The first is have you ever actually asked? And secondly, do people that have been traumatized, actually, you know, want to talk to you, if you’ve traumatized them to the point that they’ve had vast volumes of PTSD. And they go away, come back to the people that traumatize them? I don’t particularly think so. So I think there’s a lot of really great intensive care professionals out there that are doing absolutely fantastic work, who are actively engaging patients, and like all stages of research, not just being the sort of focus of the research, which has been the sort of way thing, you know, the patients are the, the target of the, of the research,

Kali Dayton 22:35
and is that we focus a lot on the problem, right? There’s a lot of discussion on what delirium is a little bit about, you know, what causes it. And now it seems like we’re starting to talk about how to prevent it, and how to treat it. but prevention is a big part of it. Now that you and I have discussed, and we’ve talked about, that the possibility of keeping patients awake and moving on the ventilator. As a person that struggles with being immunocompromised, what would you choose? And hopefully, you’re given the choice next time, if there isn’t next time that you’ve faced that situation? How would you advocate for yourself? Or what would your choices be now? As far as sedation and immobility?

Mark Hudson 23:23
So that’s a complicated, we have 5 million people, if you’re so the near, say, to me, Glasgow has three ICUs, which I think there’s like 72 beds. So that that’s the local, big ACO, but you know, those are for that areas, patients, but also for the extremely sick from the surrounding areas as well. So, kind of understanding that I am also aware that certain things won’t necessarily be accessible to me. So I would like not to be heavily sedated. That would be my preference. I am also aware that sort of mobilizing while intubated is not necessarily the most common practice here, due to sort of gay planes that exist with our system, and that there is not significantly strong enough data on the safety of mobilizing while intubated for

Kali Dayton 24:39
perhaps data they’ve been exposed to what has been data since 2007. And yet even it came from the states and even within the states, we’re vastly unaware of the proven safety and visibility of it and the low betters.

Mark Hudson 24:58
We have advocates for Are for for mobilization. And there certainly are other ways without physically moving patients that are being used to maintain muscle mass and other things. So I lost between 27 and 29 kilograms, which is between 61 and 64 pounds. So about a third of my, my way, and yeah, and two and a half weeks of being and just come up. So there’s, there’s a lot of complicated aspects of X year and mobilization.

So perhaps mobilization would have helped reduce that, my feeling is, actually probably not because my issue was, they couldn’t get a feat that would be tolerated within my ileostomy and my shortening a bowl. So that was probably a bigger aspect of the puzzle, and that wasn’t absorbing any protein. And if you’re absorbing any protein, then you’re going to maintain mass.

Kali Dayton 26:06
You had an exteremly complicated stay. And if you were to end up in the same situation, I hope that you will be able to advocate for your own preferences and treatment, everyone’s circumstances are different. Sedation isn’t always avoidable. And yet, I think we’re very quick to do it, which makes it almost necessary throughout the hospitalization once you started delirium, right, I hope you never end up there again, only to visit and to advocate and to teach and guide.

Mark Hudson 26:35
Yeah, so I would like to say that I will never be NICU again. But the cold reality as well. And you know, I’m 34 year olds, immuno deficient, the chances that I will manage to avoid in the rest of my life and infection that makes it to that point, again, would be dangerous to think like that. Hoping that the culture within ICU by the time that I’m in there again, will have shifted, but you kind of have to be pragmatic.

and how you look at the world and can’t expect of a six bedded ICU, the ability to deliver certain things and, you know, the the ICU that I was in, they are, you know, I would, I would put them against any ICU in terms of quality of care in terms of so we were one of the first sites outside of the main to have the Inspire ICU follow up clinic. Wow. So that was a five week follow up on which we receive input from psychology from pharmacy from various specialized services speaking with a attentiveness that was involved in your care telling you what happened while you were in an ICU.

So it’s, it’s not just and I had, I had a lower standard, a nurse from ICU following you from your exit of ICU, to your discharge, seeing your regular timings, whether it be aware what the what the timings are, but certainly more than minimum of once a week, in your in your trip out. So like, yes, we’re a district, hospital. But I think if you measure the quality of, of care and follow up, you would be hard to find sort of equal. So while you know, I’m not being negative of my ICU experience, I think in terms of what I received, I had some of the highest quality of care that is possible, but that I am not blind to the fact that not everything can be delivered, and in the type of ICU, and it would be silly to think things like ECMO and these other highly specialized things can be delivered to an ICU that’s not going to really have that many people and

Kali Dayton 29:28
I’m impressed that, I mean, maybe it’s even easier in a smaller hospital to set up that kind of protocol to have some continuity of care people that know you, people that have saw you in the ICU to see you after the ICU and to walk you through that recovery process. I love that that is what we that should be standard and it’s exciting to think that you are helping change the culture, bringing awareness helping to influence protocols that will hopefully provide a different experience and outcome if you were to be there again or for whoever else will be there next time.

Mark Hudson 30:03
Yeah. So, you know, Sir Isaac Newton’s famous saying, as “I see further because I stand on the shoulders of giants of those who…..”, who, who, like I am meeting a standard law and the work of lots of people who’ve done things before other patients, clinicians, health care professionals, researchers, I’m just pushing further forward.

So people will stand on top of me, and things will move further forward, things have got a lot better, certainly here and all that are government are investing in post ICU care, and that was that was progressing prior to COVID where the focus even became even more hyperfocal focused on ICU, you know, basically COVID has has shown that things in ICU maybe aren’t the way they should be. But maybe how we do things. And even how we have designed and built ICUs are not necessarily conducive.

So the lack of natural light, which is a big thing in delirium, they’re the sort of disruption of the circadian rhythm and the volumes of noise and weird noises. So if anyone has ever seen a chart of noise, and ICU, I think it’s, it’s above 70 decibels, which are almost all located around or behind the patient’s head, which is the equivalent to Jack camera. So people wonder why patients in ICU have such delirium, such incidences of delirium, the average sleep of patient daily in ICU is seven minutes.

So try going through a day, where your maximum interval of asleep is one minute, and you get seven minutes taught in a day and put a white noise machine on that’s at seven decibels for a large volume of that. See how you remember this? See, see how you feel which, but, you know, when an ICU patient experiences,

Kali Dayton 32:27
Going in to the “experiences”, I don’t want to call them hallucinations or nightmares, the experiences that you were having for weeks. I mean, that is so that sounds so far from sleep, let alone restful, restorative sleep, I don’t know how your brain doesn’t become broken?

Mark Hudson 32:41
Well, it doesn’t. Everybody’s brain that comes out of ICU is broken. And that sorry, everyone that has been in for a reasonable length of time, or has been ventilated and sedated. And that’s, that’s another point. sedation is not sleep people, pets, you know, it’s not just because they look like crucially pin doesn’t mean the are sleeping, and that thing, you know, that’s all of these things, or a delirium is so prevalent.

And ICU like there’s there’s cultural things that exist within healthcare that are not created for for the patient. So and these are just my thoughts if you are at home, and people kept barging into your room, without without anything, just walking, and started talking over here made loud noises, sort of things like dropping bedpans and other things and, you know, making noises from the ear prints, plastic aprons that are worn and things like that, you know, when you snap them, it’s a loud noise, you know, throwing things in bends all of these types of noises. How would you feel?

You know, you wouldn’t, you wouldn’t feel safe in that environment. Like, and yet again, this is not an attack at the ACU world. This is an awareness of problems that exist. These things contribute to why ICU patients don’t necessarily feel safe. in ICU. If you’re constantly bombarded by noises. If people are invading your your, your personal space without your awareness, you know that that makes you feel unsafe. It makes for a very difficult environment for healing I in my entire ICU experience.

Pretty much every member of staff was an enemy and my deal your state. They were either torture or jailer or some negative thing with the exception of one I’m a member of staff, one of the nurses whose name is no invading me. And he was somewhat on my side. And really your step. And what I became aware of when I became cognizant, and when I spoke to family is that he spoke to me. Every time that he was doing something, he explained things to me, he spoke to me, he like stopped disruptive things happening around me.

And I think that that penetrated into my my brain because I think delete in particularly in ICU, is trying to make sense of sensational experience without the cognitive brain being involved. So the reason why I felt arrests were being slept and made to believe it was because my breasts were being cut for arterial lines. So if you have vision and cognition, you understand what’s going on.

But if you take care of the ability to think, and you will have the experience of what you’re feeling, being cut open and having something shoved in your brain goes, we’re being tortured. someone’s pet pro-business, or in our thought my throat was being slapped, was?

Kali Dayton 36:25
A central line?

Mark Hudson 36:30
‘Central Line. Yep. What do you think the drowning was?

Kali Dayton 36:33
The ventilator?

Mark Hudson 36:33
Maybe my ARDS I would have have suggested that was my ARDS was a fluid overload my lung, when your brain doesn’t have any external input, and only has the internal feelings, it has to make up a narrative for. So the only reasonable explanation that my brain came up in the state was that was being tortured. Because all of these negative things that were going on, so I think that how you interact with the patient, even if they’re sedated, especially if they’re sedated, perhaps it’s really important. They’re not asleep. And, sure, I might not have been aware of 90% of the things that people said to me, while I was enter, I have

Very little idea of my my family speaking to me, I think there was some sort of things were penetrating because they were part of the delirious state, they were trying to save me trying to get me out. But I think a lot of the negative aspects came from them not directly engaging me not.

So I can, I can only guess I can make assumptions based off of the positive aspects of my bleeding, which sounds weird when I see it. And the negative experiences and what the differences between them were, the person who engaged me as a human being was a positive, well, maybe not positive, but a less negative aspect of my delirium. And people didn’t, were the negative, or they were the people that were cutting me open and torturing me.

And I think that those are not unrelated things. I think, the more would you do it that way? If they were unsedated. If you were speaking to a patient, who was if you had a patient in the bed, who was cognitively aware, and unsedated, would you just come in and cut them? No, you would be, you wouldn’t? Just fundamentally, you wouldn’t? Probably, at the very, very bare minimum, from a personal safety point of view, you wouldn’t do that.

Because if you go to cut someone, it’s a distinct chance that they’re going to respond by violent means. So why would you do it to a person with sedated? I don’t understand. Why do you treat them differently? Because they’re not they didn’t choose to be sedated? The numbers? No, they didn’t necessarily consent to that. They may have been so unwell that they weren’t, and I’m not saying we shouldn’t sedate without consent.

That’s let’s let’s let’s not try and frame it like that. I understand that in emergency situations, things have to be done. Where, you know, it’s where it’s reasonable. You know, I was saturating ATS. Right. The idea that you wouldn’t intubate me without consent is and I know that some people may try to frame it that way. That’s not worth seeing. Can Enough trying to get as,

Are you sedating patients? And are you treating them as sedated? Because it’s convenient for you? If that’s the case, you really need to have a look at what you’re doing. If you’re not doing because it’s beneficial to the patient. Why are you doing it? That’s, you know, are they sedated? Because it makes workload easier, which is maybe a natural thing, but it shouldn’t be. That shouldn’t be way you’re thinking about.

And I understand that in America. And this always scares me when I find out. There’s not one to one nursing and ICU. In the United Kingdom, you must have a minimum minimum of one nurse to one patient and ICU, that might go to two, or three, depending on the complexity of things that are needed. That boggles my mind that in America, they think a nurse can handle the totality of the functions of a human being into people that like, I do not understand that. Because that’s what you’re asking an ICU nurse to do. They are in complete control of a human beings bodily function.

Kali Dayton 41:30
Whether it be in survival.

Mark Hudson 41:31
Yeah, yeah. So beyond Yeah, yeah. So I understand that sedation may make things easier. And it goes back to like use of restraints. I’m very, very angry when restraints are used. There is very, there. There are situations where it’s where it is needed when a person’s being violent, or they’re ripping their hair out. But I would argue that why or the point? Or the highly delirious. yes, you’re, are you treating the problem? Are you treating the symptom? Is the banging out event, a symptom of delirium? Is the delirium, something you could have prevented? It’s not always prevent by an ICU.

And all people speak about deleting free world, unless something vastly changes, I don’t think I think we might be able to eliminate it from the rest of the hospital. I genuinely think we could eliminate it in surgical patients and medical patients in the ward. I think that this is something that’s a realistic goal, I find it hard to see it, how we can eliminate it from ICU.

I think we can get it to a very small number. But yeah, so it’s another case of if we do things right earlier, we’re going to get a lot less dilithium. In theory, we’re going to use a lot less sedation, we’re maybe going to have patients less heavily sedated. We’re maybe going to get people off breathing chips earlier. Or maybe we’re maybe then going to mean less people getting treat tricked, which is trauma to the throat. And although that may, particularly in the UK, make them more eligible to be mobile, which is a positive thing. So let’s get the ventilator removed. So

Kali Dayton 43:36
That’s a profound point. Yeah, we train them so we can move on. But what if we never let them atrophy so that they can get the breathing tube out and they can mobilize?

Mark Hudson 43:43
So I have a kind of story sort of related to that. So I don’t have a lot of memories of being in the ICU. But one of the profound memories that I have was being I remember hearing the conversation between the intensive care physician, and I believe it was one of the nurses and they said, you know, if he fails the sprint, I think we’ll have to take him. I remember my brain going all hell. No, you are not cutting my throat. I remember. And I believe through my own force of well, I managed to to pass pass the sprint to get extra baited because I think my my brain went well.

Kali Dayton 44:37
No, we I talked to Jeff sweat a few episodes ago and he talked about how much he wishes he had been present for his ICU stay because he knows he feels strong that he would have been off the ventilator sooner he wouldn’t have been trained. But he said, “I could have changed my outcomes. I could have participated I could have progressed I could have gotten better faster if I had been allowed to be a part Have it. So even your subconscious, that little part of you, I do believe that you impacted that decision in the moment.”

Why would we want to turn that off? Why wouldn’t we want patients who will to live will to fight the ability to function? Make choices be involved? Why would we take that away from patients when it’s not necessary? You make such a good point, you make so many good points, Mark. This is why we need survivors speaking to us. I want your voice to ring through our minds and our hearts as we’re intubating the patient and preparing them.

Let’s talk to patients, and be honest with them and tell them you know, if it’s not an emergent intubation, so if you were to be in the ICU with pneumonia, and you’re on a high flow nasal cannula, you’re getting you’re on high levels of oxygen, but you’re still with it. Would you rather us as IC community, give you that option and talk to you about it and actually give you an informed consent prior to intubation? If you’re not sat at 80%? And in an emergency, as you were?

Mark Hudson 46:08
So we’re, we’re touching on on a very long debate here in that is it possible to have true informed consent? As a layperson, can I really understand the the depths of of that probably interest? No, I am a relatively intelligent man who has a sort of level of medical knowledge that maybe doesn’t exist in the, in the normal community by by necessity, I have a knowledge from from a lot of places, and most of us put trust that the health care professionals know best. Now, I have a more than a few discussions or debates with, with doctors, or that that’s more on the point of non experts talking about is where my conditions give me knowledge that maybe they don’t have.

So I think it’s hard, because in that situation, if you’re very unwell first, are you really the best advocate for your care? You know, are you cognitively in the best place to make that decision? How are you? How are you going to really assess that? Because to provide that, you know, if you’re talking about someone that’s reducing, so you’re not talking about me a big grand drop, where the decision is very, very cut and dry, where it’s ventilator or death? That’s that’s essentially the discussion we’re having. If you’re talking about a slow creep down, where it’s much harder, nuanced decision, is it fair to leave early to allow more aggressive treatments to happen that will help you with recovery quicker?

Or is that keep on the path we’re going with the current treatments and hope that the treatments pick up and start to sort of effectively work before you hit a point where that aggressive treatment is the only option? The problem? And this is a very, very hard argument, there’s no, I can’t say to you, or this is definitely the way we should do it. And I don’t think anyone can is how do you assess that the patient is capable of making that decision? Is it safe to make that assessment?

Because the time that assessment takes well, they then reached the point of done so there’s there’s a lot of aspects to this. And I would like to give you a nice clean answer. But there’s no clean answer and may say the answer is, I don’t know. Is that is the long in that some of it is this is the problem with sort of theoretical points like this is there’s so many moving parts. So if you’re saying that the patient is cognitively aware, I think that they should be allowed to have an active part in it. I also think that their next of kin or their whoever they’re they’re chosen should also have an involvement.

Kali Dayton 49:43
And should we form them should we say? Let’s say, trying to think of situations which you’re able to talk to them?

Mark Hudson 49:51
There’s no situation I think there is zero situations where you shouldn’t be informing the patient of the condition. So if you like, I don’t care what the theoretical thing is, even if they are massively delirious, I don’t think that is a situation where you shouldn’t be telling the patient. Yeah, whether whether they’re their next their next of kin or their health proxy or whatever, I think they should also be there.

Because whether that person is capable of or not, they still deserve to be informed, whether that decision should be made by them by their next of kin medical proxy, or if for whatever situation, the medical proxy or the next can can’t be there and the patient isn’t able to. Whereas medically reasonable should be done by not paying any one of those stages, should the patient not be informed, or spoken to about what was going on.

Even if it is as simple as saying to the patient, we’re going to need to intubate, you know, you’re getting too sick, or whatever. I think that needs to be happen. And I think we need to remember that it’s humans in the bed. These are not cases, these are not these are people. And if you were in that bed, would you want everyone to be talking about you, but not to? My feeling is? Probably not. And I think that you would think that that would be a very offensive way of practicing.

Kali Dayton 51:35
Subconsciously, when people are not coherent.

Mark Hudson 51:39
Yes, and I think there’s a defense mechanism involvement from the healthcare professional as well, and that the ICU, more than anywhere else in the hospital is going to be exposed to dying patients, and dying family members other than perhaps palliative care where, where there’s a sore, but there’s a that time people are expecting today and the professionals that are kind of on the understanding that everyone is dying. At that point, we’re in ICU, you have an expectation of saving people, perhaps you know, you’re doing treatments to save people, you’re investing whether then progresses to palliative care, there is an emotional trauma there,

Kali Dayton 52:28
I had a nurse reach out to me saying I discussed these principles with my team members. And the nurses, pretty much all agreed that it would be harder to take care of patients that are awake, because they would actually get to know them. And then they would die. And this is the era of COVID when lots of patients are dying on them. And so I recognize that that is a barrier to treating patients as human and letting them wake up and actually getting to know them. And taking that risk of losing someone that you know, rather than losing someone that has been a body in the bed. That is different. That is so.

Mark Hudson 53:05
So I think COVID is a very unique situation, it has created a very unique situation. And particularly in the early times, with the fact that being a very novel, virus, we’d had no natural defenses to it, we had, we didn’t really understand how to treat it. And perhaps in the initial stages, things that we did treat it were, as we now know, not helpful, but at the time, there was no way of understanding that, that we we had an expectation that things that that had been used for similar things would be helpful and have been proven to be non helpful.

Things like Felker stem, which is an injection that I use to boost my immune system has been proven to be highly effective. And COVID, because increases bleeding increases cytokine storm and people that have COVID. So we now understand that and other things that work like that, why they’re negative, but we didn’t have that knowledge at the start. So things were done, bad things returned. They’re like 10, in hindsight, so all of these things, our lack of natural immunity to this type of novel virus meant that we had big death loads, we had high mortality to this virus.

We are now with vaccinations and better practices, kind of having less of a death toll percentage from it. So yeah. It’s kind of hard to think about pre COVID times and how the world was pre covered because COVID has had such a massive impact. And I think We will get back to a time was similar to that we’ll never get back to a time that was like that. But we shouldn’t let the massive negative aspect of COVID affect how we do. So the fact that there was lots of deaths due to COVID NICU shouldn’t make us shy away from the changes that should have been happening If COVID hadn’t happened. So the personalizing of ICU care, things like that should return,

Kali Dayton 55:38
I think that will be part of the healing is to connect with people, again, to re introduce the things that improve survival. So we knew far before COVID, that deep sedation, immobility, delirium, increased mortality, I would suggest that a lot of mortality from COVID was impacted by our sedation and mobility practices. So we don’t need to dwell on that. But we do need to face that, and recognize that we didn’t totally practice evidence based medicine during that time.

We went back to benzodiazepine trips, we went back to deep sedation and mobility, and not dwell on it, not use the negatives, to beat ourselves up about it, but to say, now we have seen for ourselves what that data means what the research has shown, we know that this is true, and use voices like yours, to reinforce the why we need to change and to bring that research alive and to humanize all of it. And I think as we make human connections with people will remember why we’re in medicine.

And as we implement practices that will prevent delirium, that will improve mortality, prevent infection, decreased time on the ventilator decreased tracheostomy is all those things, we’ll actually get to see patients get better and walk out the doors, and I’m doing an episode of some nurses that are talking about how much implement implementing these principles into their practices have changed their burnout, change their depression, because they’re actually seeing patients get better and be extubated, whereas they were not before. So thank you for your voice.

Thank you for inspiring us. Thanks for advocating for current and future patients to come. You are bringing the change into the icy community and helping us understand the reality of delirium and holding us accountable. We need that. Is there anything else you would add to that?

Mark Hudson 57:36
So you bring up an interesting point. I just want to add? Yeah, I think so. People think that ICU follow up is purely for the patient. ICU a follow up is for everyone, because of the pipe the brought up. ICU staff don’t, as a general thing, see the recovered patient or the recovering patient.

So the post ICU clinics are good for a staff, because they get to see that that patient, they had the bed. It’s not just alive, because when you know, when they’re wheeled out PICU door, that’s kind of old thing I understand is that that patient made it right, they get to see that that patient, that human being has recovered, and they’re progressing. And they get to see the impact that that has had. They no longer detach from the outcome. And I think that that is a sort of underappreciated aspect of follow up.

And that, you know, people like me are all great for the patient. This is why we should do it, because I have a vested interest in it. And I think we all are somewhat selfish and how we look at the world. And you know, people will say, Oh, I do great things that you know, like advocate. It is somewhat from a selfish point of view. I want to improve ICU because there is a realistic expectation that I will be an ICU again, but I think you have to understand that post ICU clinics are for the family of the ICU patient or for the ICU patient.

They are for the ICU professionals, whether they be intensivist whether they be nurses, whether they be physios or psychologists or pharmacists or any of the other professions that are involved. The idea that seeing these group of patients they had looked after when they were at their worst time in life, because no one goes to ICU. Because they’re all healthy and good. This isn’t a gash to a word where you’ve had some gastroenteritis. They says, you are dying. And that’s, that’s it, you have had some sort of trauma that is so severe, you can’t be managed anywhere else other than ICU. And it’s good for the staff, and the staffs family, because if that professional is healthier, but mentally from having seen that the patient has survived, and that is a positive thing.

It also helps their family’s life, because if they’re dealing better, they are positive and seeing all of these things that they have helped contribute to, they’ve taken someone from the brink, not just brought them back to sort of five from but thriving, that’s positive for them, which has a positive impact in their professional life, and their personal life. And that positive impact then has an impact on their family. And when you improve that aspect, you improve further beyond that.

And I get that this sounds like farcical. But it isn’t, because if you improve their lives, that improves the professionals lives, that will have an impact. Nothing in wildlife is isolated, impacts everyone. So when you have a positive impact environment, it radiates out. And and I think that we need to remember that it’s not just a positive impact on the patient. It’s a positive impact on staff. And that’s important too. And I think we’ve discovered this in the COVID time, with a massive burnouts and a massive mental health impact from staff that actually, maybe we need to think about them as much as we think about the patients. And it’s pretty hard.

Kali Dayton 1:02:11
Oh, absolutely. And I have not thought of post ICU clinics in that way. And allowing ICU providers to go in and see those patients. I know that pulmonologist often involved with patients after the ICU, the same ones that they’ve cared for. And that’s provided them I’ve interviewed some of our pulmonologist and they have a unique perspective because I see them the whole spectrum of survival.

But it would be so therapeutic and impactful to ICU care to have the whole team see patients after and have that closure and that healing. And to know that what they’re doing is making a difference and that they truly are saving lives and people and families. Thank you so much Mark for all that you’re doing out there. And for the listeners, please tune in to Mark’s podcast. I will put the link in the clip description, description of the podcast as well as on the blog. Thank you so much, Mark. We’ll be in touch. Thank you.

Transcribed by https://otter.ai

 

 

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