Acute Respiratory Distress Syndrome, Sepsis, and Cognitive Decline: A Review and Case Study
Southern Medical Association 2009

ICU Psychosis and Patient Autonomy: Some Thoughts from the Inside
Journal of Medicine and Philosophy
CHERYL MISAK
University of Toronto, Toronto, Canada

Reports of ICU patients (survivors of severe sepsis or septic shock) who filled in the IESR (Impact of Event Scale – Revised) questionnaire:

We introduced the questionnaire with the following words: ‘In the course of your disease you were treated on our intensive care unit (ICU) for a period of time. It may be that you had traumatizing experiences during your stay, e.g. night mares; strong pain; the feeling of helplessness; or other upsetting experiences.
We would like to ask you to tell us which traumatizing experiences you made during your stay at our ICU.

Following are examples of Delirium and Post-Traumatic Stress Disorder developed by Dr. Judith Rothaug, of the Klinik für Anästhesiologie und Intensivtherapie in Jena, Germany. NOTE: the IES (Impact of Events Scale) is a questionnaire for Post-Traumatic Stress Disorder or PTSD.

Female, 70 years: "In June 2003 I had a kidney taken out (tumor). I know that I had a cardiac arrest afterwards. I was unaware that I developed sepsis in addition. Often I had night mares, I did hardly suffer from pain, but I had this feeling of total helplessness. I can’t remember any upsetting situations, only the usual stuff, which is just normal after a difficult operation. However, one day something happened which still makes me angry even today. My mind was already working alright again: They put me in a room together with another woman, all beverages where taken away, nobody took care of us, neither ringing, nor knocking, nor shouting helped. I assume this was the room for the dying. We were cared for properly again the day after. Dying did not work out."

Male, 56 years: "Helplessness, being committed to pain, thought lots about my family, how things could go on, whether I will survive at all. I have a grandchild, he was about to have his first year at school in 2003, he gave me the strength to make it. My grandchild Matthias visited me together with my wife and my son at the rehabilitation center every weekend. They made me believe that I will make it. All this good support by my family, and friends, and physicians gave me the strength to leave hospital on October, 1st 2003."

Male, 37 years: "Strong pain, everywhere white ants on the walls; on my blanket; on my drinking vessel. I was floating weightlessly in my room, being unable to do anything against it. I heard voices which supposedly were not there. I heard disco noise in the middle of the night. Dizziness, felt like a carousel. Helplessness: being unable to attract attention to myself, or to try to talk to someone but I could not, everybody just passed by and ignored me. Anxiety states, dyspnea, disability to move, strong pain."

Male, 36 years: "After my accident I was in coma for 8 days. After waking up I was confused and could not deal with the situation to be in hospital. I was in this condition for over 2 weeks, they had to tie me to the bed. I can remember hardly anything.’
Male, 69 years: ‘During my 6 weeks stay on ICU I realized my surrounding only very fragmentary. I had very bad nightmares most of the time. I was locked in a submarine and could not breathe. I was tiny and had to detect whether bacteria attack the environment. I realized pain only for a short while. I was permanently helpless, which depressed me very much."

Post-Traumatic Stress Disorder
Male, 67 years, suffering from PTSD after cardiac surgery, reported his experiences during a psychotherapy session:
"On Sunday, I was on the ICU, where a horror ceremony like in a concentration camp was going on. 4 patients were executed. Laying in their beds, they received a death pill. I was one of them. … The hangman gave us the pill, with a blank face. In the background were two ladies waiting to carry away our dead bodies. … The torturers watched us all the time, they asked us: “Do you feel anything yet? How does your foot feel? How does your arm feel?” The scene went on like a horror film. The children of Satan were in command. They were dressed in green coats and had scary faces. They were waiting for our death. … Worst was, that I did not try to resist. How can a man throw away his life like that? Why me? Did they do a mistake during the surgery and try to cover it up by killing all of us? … The pills did not work. I did not die. So they tried it again with gas, pressing a mask on my face. …"

Patient testimonials

These patient perspectives were sent to us.
(Permission was obtained by the patients to post this information.)

Perspective from SB
About my delirium memories from the ICU, I have had few. The time I spent seems like it was in a huge, empty gray space, sort of like a monstrous underground parking garage with no cars, only me, floating or seeming to float, on something. Every once in a while I would get to an edge of something horrible and once I remember I thought, "if I just let go, then this horror will be over." But I couldn't, even though I remember telling Ben at one time, "I'm ready to die." And I remember him saying, "Oh, Mama, don't say that; don't say that!" When I try to write about that time (and I have tried over and over), words just won't come and in my line of writing, personal essays, if it doesn't just come gushing out, I have to stop. And that's where I am now. I just cannot write about.

One friend, a retired surgeon, told me I probably would see snakes climbing down the wall, or think one item is something horrible. Nothing like that has happened to me. I do remember thinking if I could only just bite through whatever that is in my throat, then I could breathe. I couldn't even swallow, that was one of the worst things. And not being able to breathe or to talk.

Even though I was only in one hospital the whole time, it seems to me I was in five different hospitals and one of them was on a train and one was in an airplane.

I survived and that is the main thing. And I am so grateful to God that I survived and am now off all oxygen and consider myself all well except that I can’t remember to take my medications.

My words just won't come. I did lose for some weeks a lot of my speaking words. For instance, when I went to say the cancer was negative, I said: the cancer was naive.

My brain rehabilitation has been the word game Scrabble. I beat my best friend at Scrabble last Sunday. She probably won't tell anyone, as she usually wins. We are so very competitive and have great and grand games now, but it took a long while to get that back.

SB

Quote from husband of 32 year old sepsis survivor:
“Doctor, she’s not all there. The wit, the comprehension, the concentration. It’s all haphazard at best. To most, it is unrecognizable. The best way to describe it is mental disorganization, like there is a connection missing or a synapse not firing.  It has been 10 months, and I just keep waiting for it to straighten itself out.  Is this it?”

Perspective from JD
Hello, I am e-mailing you after having read a NY Times article dated 10/17/07 on ICU Delirium. I am near tears as I sit at my desk and type this. I was intubated and admitted to the ICU with severe sepsis, ARDS and a ruptured bowel following a surgical injury after a laparoscopic outpatient procedure.

I was intubated and in the ICU for nearly 2 weeks. During that time I suffered sever delirium. The nurses told my family what was going on. My family in turn told me. I have been a social worker in health care for nearly 25 years. When I heard the term ICU delirium, I began refusing the sedating meds which I was offered on a regular basis. The absence of the drugs helped.

After being discharged home from a 29 day hospital stay, I noticed that I was having difficulty with concentration, word recall, ordering my thoughts, processing information, endurance and balance. All of these continue to be issues today. I have returned to work and have been able to continue to function independently. However, I just started another Masters program. I can do all of the necessary work, but during class discussions, when others can easily process the information and participate, it seems as though everything is stuck for me. I cannot process what’s going on in class, and make insightful, relevant comments. The best I can do is to restate what has already been presented. I simply have a real problem organizing and pulling up data in my head.

I also had to have a hysterectomy as a result of my injuries. When I brought these mentation problems up to my doctors (and to the surgeon who I worked for at the time) I was told it was 'normal aging' or related to menopause. No one took me seriously.

I am very, very interested in participating in your research in some way. Working with you in some way, somehow gives my whole horrible experience meaning. Otherwise, it's as though I suffered all of this horror for nothing. I am also interested in making contact with others who have had similar experiences.

Perspective from MA
I don't remember most of the 40+ days I spent fighting ARDS in the ICU. I do remember bits, like snapshots – my Dad's warm wave and greeting when he arrived; I remember my Mom and sister lovingly giving me a bed-bath; I remember Dr. Wheeler and others talking. I also remember being asked questions over and over and answering by squeezing the questioner's hand. And I remember having my chest tube removed.

Unfortunately, I also remember being so overwhelmed by anxiety that my feet were in almost constant motion, back and forth, back and forth. My family began to recognize that when I shook my hands like that with my fingers splayed it meant that I wanted medication to help me tolerate the anxiety. They couldn't always give me anything.

Part of the time, I thought I was being restrained by elastic bands that held me down so that I couldn't move. The walls around me looked like I was being held in a multi-level pagoda. In my mind, I was plotting my escape to home, thinking I could pick at the threads of the imagined sewn elastic restraints and set myself free. Randomly I saw small Asian people who wouldn't look at me and I saw a black cat and a black pot-bellied pig. All the while, I was so, SO consumed by anxiety. Just remembering brings back shadows of anxiety.

Perspective from LH
As birthdays go, this one was absolute rubbish. It was 8 o’clock on a May evening in 2007, and where I should have been enjoying an evening out with my husband and friends, here I was sitting in A & E with a broken nose, the result of the most mundane of domestic accidents – falling over some washing while I was completely sober.

Two weeks later I was summoned for day surgery to sort the nose out. My conversation with a porter about the next day’s FA Cup final, while making my way down to theatre, is the last memory I have before being plunged into the most terrifying experience of my life.

The next occasion when I had any perception of time was 12 days later, when I found myself being stared at by two middle aged men in dark suits and bright ties. One was busily explaining to me that I was in the Intensive Care Unit and that I was quite safe. However, I knew better. I knew they were lying. For me, the reason I was in a bed, on a ventilator, hardly able to move, was that I had been drugged and kidnapped. It had all started in Portugal; at least I thought it was Portugal, where I’d been abducted. At some point I’d managed to escape but was re-captured and taken to a hospital, a few miles from my home.

I knew that I must have done something wrong, to be held with no hope of escape, but I had no idea what it was. I’d tried on several occasions to pull the tube out of my mouth, but had always been instantly plunged back into darkness. It never crossed my mind that there might have been a medical reason for my predicament, and I had no knowledge that severe aspiration pneumonia following my routine surgery had landed me in ICU and was putting my family through hell.

What I did know with certainty though was that I would die. One particular doctor would visit me every time I started to wake. He always wore the same clothes and would always speak slowly and deliberately. “You’ve been dying to know what that sign on the wall says, haven’t you?”, he asked one day. He was right; I had wondered what it said but the problem was I could see two of everything and objects and people were frequently blurred so I hadn’t been able to read it. “I’ll tell you what it says”, he continued. “It says “moron”. We put it there so every time you open your eyes it’s the first thing you see; so that for every minute of every day you know exactly what you are. Unfortunately I’m not allowed to turn your ventilator off, but I want you out of here, and you will leave soon, in a body bag. You’re not going to live, but just remember every time you open your eyes you will see exactly what we think of you – moron”. From then on, that sign was the only thing I could see that wasn’t blurred.

The rest of my stay in ICU was filled with more incidents of despair, humiliation and terror. I saw a patient stabbed to death by his wife, and two people committing suicide. I witnessed arguments, in my mind all caused by me, and the pain I felt as my lungs started to recover was all part of a plan to give me pain inducing drugs – in fact I had seen doctors laughing about it.

The day after I was extubated I found myself in the High Dependency Unit, where the sheer terror of the execution attempts began. Initially I thought I was in the morgue as I was lying flat and was extremely cold. There was a plain clothes policeman watching me because I’d witnessed a murder on ICU. Someone spoke to me “I can control your mind” they said, and then proceeded to demonstrate they had power over me by causing me pain and by interrupting my supply of oxygen at will. The following morning a tall and distinguished looking man sat down and explained to me that I had Pershing’s Disease. This was a rare congenital heart condition that can lie dormant for many years. Once a sufferer shows symptoms, however, their life expectancy is less than a year. In my mind I might as well just die where I was, and the doctor encouraged me to do exactly that. Pershing’s Disease of course, does not exist, but just like everything else that happened to me, the hallucination I had where It was explained was so convincing that I was still trying to find evidence of its existence weeks later.

I was put into a side room in HDU, allegedly for infection control, but I knew it was for my execution. I’d heard the nurses talk about CTO, which was a Compulsory Termination Order, and one had been issued for me. As the blinds were pulled down over the room’s windows and door, smoke appeared through every vent. A voice told me it was cyanide and I would die more quickly if I relaxed and inhaled it. I watched it creep closer paralysed with terror, and all I could think about was that I would never see my family again.

Having somehow survived, the execution attempts continued. They included suffocation, poisoning, drug overdoses and being forced to hold my breath until 4 lights went out on my monitor. By the time I moved down to a respiratory ward I had given up trying to convince my family that the hospital staff were trying to kill me. I still had no idea of what was wrong with me, and when my husband explained, I was sure that all my problems had been induced and had not simply happened. It was then that I decided to keep quiet about my views as no-one believed me or was prepared to help me, so I planned my escape alone. By this time I could take some of my medications orally, so this gave me some element of control, as I would wait until the nurse left the room, then would throw the pills containing poison into the medical waste. I ate nothing at mealtimes, but instead stole pieces of cutlery that would help me pry my window open. I was utterly oblivious to the fact that I was four floors up. The hallucinations had stopped by now but were replace by paranoia and deviousness. The day I planned to leave via the window was the day I was discharged. That might seem lucky, but I spent the next few months wishing that I had died that day.

My physical recovery once I was home moved forward very quickly, but inside I was in meltdown. I couldn’t tell anyone how I really felt – my family and friends had been through so much already. My delirium and its consequences caused me to believe that I was still being poisoned, even after leaving hospital, so I stopped taking my medication. What do I wish had been different for me? Well, when I received a copy of my medical notes following a suggestion that it would help me to make some sense of what had happened, I read through the hundreds of pages that comprised a file 6 inches thick. Only once did I find a relevant reference. It was one about me being severely paranoid, and that note was made by a physiotherapist. Although I have no doubts whatsoever that the care I received was of the highest order, I still feel today that my delirium was seen as an acceptable side effect of my illness and treatment. Months later, during my ICU follow-up appointment, they were not at all surprised that I had suffered prolonged and extreme delirium; in fact they appeared to know I had. To them it was “normal”. To me it was anything but.

Two years have now passed since my experience of delirium. In that time I’ve been able to make sense of at least some of what happened to me. My mother reminded me that my belief I’d been kidnapped could well have been my brain confusing my situation with something that had been constantly in the news. Unfortunately, I’d shared my birthday, the day of my accident, with the day that Madeleine McCann was taken from her family’s holiday apartment in Portugal, and the tragedy had been at the top of every news bulletin leading up to the day of my surgery.

I know too that my almost total lack of memory for the routine events you would expect to experience on a hospital ward and which would have reassured me about where I was and what was happening, stopped me from challenging my warped and terrifying perception of the world. Whatever the future holds though, I’m never doing the washing on my birthday again.

"Perspective from LH" courtesy of Dr. Valerie Page, Watford Hospital, United Kingdom

Anonymous
I had numerous dreams but the one that I think about the most is one that my children were being forced to run drugs for smugglers and it was based by them swimming under water for an extended period of time holding there breathe to get into this underground mall after hours and they were locked up for training by these drug dealers. I actually seen body bags with my children's names on them. I tried to help them and tried to communicate this but with the trac I was unable to do this. My wife told me later that I tried to pull my trac out one night and I believe that this is the same night that I recall the body bags. The next day I was strapped down to my bed for safety reasons and I had the same dream the next night and I was dreaming that I got caught trying to help my kids and was tied to a bed so I couldn't help them. One of my nurses was the girlfriend of the main drug dealer who was in charge of getting all these kids to run drugs for him.

ICU and Beyond from LM
It's been two years and I'm still trying to sort out what was real and what wasn't. I still think about it several times a week and continue to ask questions of my family. I have a compelling need to know what happened to me. The final diagnosis was ARDS and Encephalopathy, however; they never determined the cause.

I was on a ventilator and heavily sedated for nine days. I experienced what I call a prolonged nightmare. The theme: I was in an experimental hospital to learn what it's like to be completely dependent on someone else. I am a nurse so figured it was my punishment. The nightmare seemed to go on and on with different twists and turns.

After I was extubated and sedation was discontinued, I continued to have paranoid delusions about the nurses wanting to harm me. I repeatedly told my family that when I was dead, the nurses were going to put my body in a large trash can at the foot of my bed. I was obsessed about it and no one could tell me anything to the contrary. I was hallucinating at times especially at night when I was alone. I saw outlines of skeletons on the wall, heard strange sounds, etc. I believed I had been moved into various parts of the hospital, including the basement. I misinterpreted environmental cues and attempts to help me were interpreted as meanness. At discharge, the Neuropsychological Evaluation (NP) revealed significant deficits. I have a history of depression which was also present at discharge.

I was never told by anyone what to expect. When I reported cognitive concerns to my neurologist at the follow-up visit he gave me a Mini-Mental which I could have passed in my sleep.

After 5 months I felt better and returned to work but was fired 10 weeks later. I was devastated because I am a successful professional and had never lost a job. At the same time, it didn't surprise me because I was struggling terribly. I couldn't organize my work; committed many errors in documentation; frequently lost things; forgot meetings, and did not manage my time well. I tried to hide it and compensate but to no avail. I also fatigued easily. At the follow-up NP evaluation four months after discharge (prior to returning to work), the report stated that I was "back to baseline," however; the written report noted numerous deficiencies. After I lost my job I called the psychologist who stated it was "semantics". I appealed to my insurance for a second NP evaluation by the psychologist at the hospital. It revealed deficits in attention and executive function. I experienced major depression which didn't resolve for 18 months.

I'm hoping to return to work in the near future, at least part-time but I'm very nervous about it. I think there's been improvement but I still experience difficulty in attention and organization and still lose things on a regular basis. I at least need to try.

Hearing about your research on NPR has been very validating for me. I'll continue to follow your research, and in particular any new developments regarding treatment or remedy.

Anonymous
I was stunned to see such a large group of medical clinicians openly dedicated toward examination of long-stay ICU delirium as a medical phenomenon which warrants study and development of treatment protocols during and especially AFTER the ICU patient has left the hospital. As some of your material on ICU delirium suggests, the experience of having been a 'chronic' delirious ICU patient was terrifying in the extreme. But for me has been exceeded by the ongoing ordeal of facing friends - close friends, along with spouses and siblings, who have not even the slightest clue that such medical conditions exist and that the long term repercussions are real and ongoing. I do not believe in alien abductions. However, the terrified fear that such alleged abducts speak of seems not at all unlike the way I feel about my ICU experiences. The difference between alien abducts and delirious ICU survivors is that the former have the benefit of a widespread network of support groups. ICU survivors seem not to receive support or belief or sympathy that they have any medical condition at all now that they have allegedly recovered (aka not died). You must, in addition to the research you do, design a public education program which at the very least frees chronic ICU survivors with the feeling that at least the occasional person OR PHYSICIAN has a clue as to why something should continue to feel so wrong for so long a time.