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Kali talks about what prolonged sedation is really like and survivors share their stories about what they really experienced under sedation.

Episode Transcription

Kali Dayton

Today I want to talk about what prolonged sedation is really like. A nurse once told me, “I love to get and give propofol”. So I asked if she had ever been sedated. And she said, yeah, when I have surgery, I wake up and I don’t remember a thing. I then realized that understandably, we easily relate our patients experience under sedation for days to weeks, to our own time, the OR for few hours.

Last episode, Susan East shared with us her three experiences with ARDS. She said that she was not afraid of intubation, ARDS are ventilators, but that she was terrified of sedation. She even had legal documents drafted protecting herself from being sedated ever again. It is probably surprising for a lot of us to hear that.

For decades, we have sedated any patient on a ventilator. Dr. Terry Clemmer explained to us the implementation of sedation with the first archaic ventilators. Yet despite the evolution of our ventilator technology, a lot of our sedation practices have essentially remained the same. Later, we will be diving into the long term effects of this, but I want to be clear on one thing: Sedation is given by nurses with intentions rooted in compassion.

If you’re not a nurse, or you don’t work with nurses, you may not fully understand. Nurses are some of the most sympathetic, ethical and humane people among us. nurses take their role in patient safety, comfort and success as sacred. If there’s something they believe will relieve and prevent suffering, that will be just as important as any other medical treatment to them. So when 68% of nurses still believe sedation is for patient comfort, they give sedation with the intent and understanding that it is sparing patients the struggles and stress of critical illness and online discussions.

Nurses have passionately told me, they personally would want to be sedated because they would rather be “asleep” than have to be aware of the breathing tube and machines. They explained to me that sedation is to prevent post-ICU PTSD. But is it really is it really asleep?

It makes us as providers and family members feel better to see them motionless with their eyes closed. But is that what the patient experiences? Are they truly free from memories, anxiety, or pain?

Studies posted on the blog, so a direct correlation between sedation and PTSD. This is likely due to the relationship between sedation, benzodiazepines, and opioids, and ICU delirium. The deeper a patient is sedated, as well as how long they are sedated directly impacts the development of ICU delirium. During ICU delirium patients experience hallucinations and alternative realities that are likely worse than the reality of the ICU. Additional studies have suggested that post ICU PTSD may be more related to the recall of delusions than actual unpleasant memories of the ICU.

In the research, it is speculated that having real memories and understanding of their ICU experience, though unpleasant, they actually be protection from anxiety and PTSD. But what did the studies really mean? What is actually going on when our patients are sedated? What is so terrifying and damaging that affects people the rest of their lives? The only way to find out was to ask survivors directly what they experienced during sedation. I invited survivors on Facebook ice survivor pages to share with us what they really experienced under sedation. They were eager to tell us how sweet their dreams really were.

 

survivor 1

My hallucinations while under sedation were mostly nightmares, revolving around suffering, abandonment, and general mayhem. Some of the nightmares were recurring. These are just a few examples that I can recall with clarity. During my four week coma one nightmare which troubled me for a long time after recovering was the kidnapping Have my two young daughters, I would get close to finding them, only to discover they had been moved on. And I would always be one step behind the feeling of despair and hopelessness and this nightmare felt so real.

 

Survivor 1

When they visited me in the ICU on the day after waking from the coma, I was in tears seeing them walking towards my bed. I still clearly remember them, asking their mother why I was crying. In another scenario, I was at a hospital when gunmen started attacking the building. And I remember running in fear, and physically feeling the bullets hitting me as they fired their guns.

When I awoke from the coma, I thought I was there because I’d been shot. I often wonder if the physical feeling of the bullets entering my body was caused by the procedures being performed on me while in the coma, like being put on ECMO, having chest drains, inserted, the Truckee ostomy blood draws, etc.

I also recall the feeling of solitude and isolation. In what I can only describe as a white space of nothingness. I would hear voices that were familiar to me. But I couldn’t place who it was talking. And wherever I looked, I couldn’t see anyone. As the voice was always behind me and out of sight. This would lead to an overwhelming sense of frustration, agitation, and loneliness that seemed tangible. Looking back, I believe I was hearing my parents, children or partner talking to me, this tells me that there is a certain level of consciousness while in the coma. But the brain is unable to correctly interpret events in the surrounding environment.

 

Survivor 2

I know that they’re not the dreams I had were seemed just they went on forever. And there were three distinct dreams all different, but sort of, you know, the same torture, all being held against my will all being unable to talk. The most prevalent dream was being a delusion, I think I should call him delusion was being held captive in hospital tied down to a bed that feel keep on my feet when a door was opened that I believed was a door that went to the outside that I could see.

And I can remember a feeling for nurses touching me and feeling pain. And not being able to speak and trying to communicate with the nurses with my eyes, which is interesting, because my husband said that a lot of the time that I was in the coma and my eyes were open, which was really strange. And I almost wish they would have closed my eyes because perhaps that was what was causing the distortion that I was like dizzy, and disoriented and drug that I do call like I remember hearing nurses speak to me, Hey, Katie, Katie, and saying my name over and over again. And back I was haunted by her saying, Katie, you know, and I really had to do a lot of work on that voice because I kept hearing it and it kept waking me up.

After I came out of the coma, I was completely delusional. When I came out of the coma where my family was looking at me and I was mouthing to them. They’re trying to kill me and basically trying to, and I couldn’t remember this, I expressed to them that they needed to get me out of there. And I remember my best friend who was there taking care of me. And with my husband and I and my family saying to me, “We can’t take you home because they’re they’re gonna we’ve got to get you better. You got it. You got to get home.”

and I remember being almost belligerent and angry and mean and grabbing her, which I interpreted as hard but I didn’t have any strength and saying “Get me out of here. They’re trying to kill me.” And her just saying “You need to calm down. It’s okay.”

And then as time progressed, I started telling them, “Listen, I need to tell you something. They’re watching me they’re, they’re trying to, they’re gonna hurt. They kept saying they have the kids.” and now I also really, you know, I think my friends were saying to me, “Tyler’s here”, which is my son. “Tyler is here and Ava’s doing well”, and they were talking about the kids while I was sleeping,

but I interpreted it into my dream as “Tyler’s here. We have him, we’re holding your kids, we’re going to hurt your kids if you don’t cooperate.” That was the kind of stuff that was going through my delusions.

And so when I woke up, I wanted to get out of there more than anything, and I kept trying to communicate this. I went through a lot of talk therapy and writing it down. And in fact, I have writings of the delusions, but I don’t really want to look at them, but I’d be happy to send them to you so that you can see the kind of stuff that goes through your brain when you’re under sedation, and that it between rem and between in your unconscious

The craziest part, the part of Gen Con Just trickles into one’s life when you’re on acid. The nurses were just annoyed with me because they thought I was being uncooperative or, you know, I was paranoid. And they kept dragging me more, which I think made me feel even more helpless. I went through a lot of talk therapy and writing it down. And, in fact, I have writings of the delusions, but I don’t really want to look at them. But I’d be happy to send them to you so that you can see the kind of stuff that goes through your brain when you’re under sedation.

 

Survivor 3

I thought I had been in an accident car accident. And I thought I was in El Paso, Texas, however, I was in Virginia, and my first hallucination was seeing two deer that had jumped through the wall, and their back legs were just sticking out. And they kept kicking and kicking. And I kept wondering why no one was helping them. And I kept thinking, honey, they were dying. And I kept thinking, Why isn’t anyone helping those dying animals.

And I kept hearing religious music. And I thought I was in a funeral home. And I wondered, I kept thinking, I was gonna be buried alive. And I couldn’t speak and I couldn’t move and effect was I have trach and I was paralyzed. And I thought they were going to bury me alive. And I kept thinking, I just need to open my eyes, open my eyes.

And I was terrified, they were going to bury me alive. And then one day, Elton John and Shaquille O’Neal came into my room, and Shaquille O’Neal never said anything. But Elton John, who was dressed from head to toe and pink sequins suit, I can still see he had all the top hat, Sequent top hat and a pink single suit and had pink sequins, shoes. And he told me he was a fan of mine. And he told me that I was going to be alright.

And from that moment on, I knew even though I was going to have a long road to recovery, I was going to be alright. But I still couldn’t speak. But I never knew Elton John was a fan of mine, but now I know. And but it turned out with the religious music that the nurses kept playing religious music, thinking that was going to make me feel better. But that terrifies me. Because it’s something that I would have never listened to.

My family had told them not to play that. But when my family would leave, they would turn it back on again. And so I thought that I was I was in a funeral home and I would see dead bodies going down the hallway. Part of it was hallucinations. And part of it wasn’t. And so to this day, when I go into a store anything, and I hear religious music playing over head just didn’t almost six years later, I have to wait. I can’t take it in it’ll trigger a panic attack. And so they think they were helping me but they weren’t. They were making things worse,

 

Survivor 4

I was deeply sedated and paralyzed for paralyzed like six days deeply sedated about 13 days event. I don’t recall exactly what my dreams were about. Although I will not call them dreams. I’ll call them more nightmares. They were very scary. I don’t have details about them. I just remember them being very scary and made up of monsters and Halloween type images.

If I tried to start remember them, then I started to cry. So I know they were terrifying. One day I’ll face them. But right now, just being six months out of the hospital, I just tried to suppress them as much as possible. Once I was excavated and woken up, I was in a horrible state of delirium for probably four or five days.

My main delirium was that I thought my mom who was the one that was on my side, the whole time I’m on my daughter. I thought my mom was trying to kill me by giving me pneumonia. And I thought that she had given me an ammonia three times over a year and a half. So I thought I was out had been out a year and a half and then she kept getting me sick with pneumonia, because she wanted me sick. I felt like the doctors and nurses were all trying to sedate me again.

So they would come in to give me just routine medications and I would go into a full blown panic attack. They were trying to sedate me again and put me on the ventilator again. I thought everyone was in on it together. My mom leading them and she got all the doctors and nurses on board and the rest of my family members and my daughter and my boyfriend on board to make sure I stayed sick and stayed sedated.

Those my main deliriums have tons of them. And that the funny thing is I can remember all or not all most of the delirium time when I was awake. They were very, very real. I had tons of deliriums and I could remember a lot of them if not all of them, I had no idea where I was who I was, why was there my date of birth, I could not get my date of birth right or where I was.

 

Survivor 5

Like it was 300 degree. My whole family extended was around me or Hey, nice lemonade. I was laying on the summit, literally frying an ambulance there. I heard alarms probably my turn. They refused to help me into the ambulance, or give me any lemonade. So I could do it myself. Hallucination clearer than day still haunts me. Still nightmares.

 

Survivor 6

I was traveling around the world, primarily in Africa, fighting animals. Right before they woke me up, I was in Africa or traveling back from Africa. And I just saved a purple pygmy gorilla. Lot of that were good memories. Some of them were not what I’ve learned is that even though we’re both sedated, we can still hear. So a lot of what the television was left. So we had learned or decided that they had left the television, the Discovery Channel, and this is why I have a lot of these memories.

Some of the other I can hear the head nurse and my family member discussing why I needed to stay sedated longer. And in my dream state, she was the head of keeping me a science experiment. And it was quite horrifying. And I was trying to come out of my sedated state, too, to reach my family member. That sometimes is still upsetting.

I have a lot of other, we can hear the doctors we can hear the family members. There’s fun, some fond memories when I’ve had other family members visit and I could hear their voices. And I’d have nice dreams about them. The delirium is just the in and out of consciousness.

 

Survivor 7

After I was woken from my coma, I was in the coma for 15 days, didn’t even know I was just charged and, and I had lots of hallucinations, like I was in a horror movie. And it didn’t matter whether my eyes were open, closed. If I was awake, not awake, whatever my status was, I was hallucinating. I would see horrible things. And I would see someone behind them being murdered or just horrible, horrible things that you would see in a horror film. And it was really scary to me.

And I thought my brain had slipped because all my other organs were just functioning, I thought, Oh, great. This is going to be my brain going and thankfully, it came back and it it went away after the second day of being home. There is no post help. First, that’s the there’s no support group. I’m basically Navigating on my own finding whatever I can on the internet on Facebook,

 

Survivor 8

Induced coma, whatever you want to call it for 12 days. And I had a dream that people were going away. And before they went away, they were going to have a Christmas party or party where people received gifts. And there was going to be fantastic food there. And I just kept seeing them walk back and forth, back and forth, back and forth. And I really wanted to go but I wasn’t invited.

 

Kali Dayton

So please, believe our survivors. These may sound like just really bad dreams to us. But do not misunderstand. To sedation survivors, these experiences were real. This was their vivid reality for days to weeks or more if we sedated them for longer.

If we ever use the word “sleep” in reference to sedation, let it be to remind ourselves that they are sleepless under sedation. Let’s make it clear: When our patients are unresponsive and “medically-induced comas”, they are not free from anxiety, pain or fear. They are trapped in it alone and unable to express what they’re suffering and therefore left without help.

In our well intended efforts to spare them horrors of reality, we have left them psychologically named with wounds that they will spend the rest of their lives trying to heal.

Before we automatically sedate every patient after intubation, let’s stop and ask ourselves each time:  Does this patient really need to be sedated? Is it in their best interest? Do the potential benefits outweigh the psychological and physical costs? Step into the patient’s hospital socks and see it from their eyes. Let us strive to truly prevent and treat pain, anxiety, and trauma in our patients. Not cause it

Transcribed by https://otter.ai

 

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