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hen his fever spiked, he thought someone was setting him on fire. When orderlies slid him into an MRI, he thought he was being fed into an oven. Frequent catheter changes seemed like sexual abuse. Dialysis? He thought someone was taking blood out of a dead woman’s body and injecting it into his veins.

The horrifying, violent hallucinations plagued David Jones, now 39, during a six-week stay in the intensive care unit at Chicago’s Northwestern Memorial Hospital — and for months after he was discharged. He thought he was going crazy and felt very alone.

He wasn’t.

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Recognizing the prevalence of the problem, doctors and nurses across the country are now pushing an ambitious campaign to change practices in intensive care units to reduce cases of “ICU delirium” — a sudden and intense confusion that can include hallucinations, delusions, and paranoia.

Anywhere from a third to more than 80 percent of ICU patients suffer from delirium during their hospital stay. And one-quarter of all ICU patients suffer from post-traumatic stress disorder once they leave, a rate that’s comparable to PTSD diagnoses among combat veterans and rape victims. Patients with ICU delirium are less likely to survive and more likely to suffer long-term cognitive damage if they do.

“This is a massive, massive public health problem,” said Dr. Wes Ely, a pulmonologist and professor of medicine and critical care at Vanderbilt University Medical Center in Nashville, Tenn., who was among the first to recognize the scope of the problem.

Ely is pushing his colleagues in ICUs across the country to reduce the use of sedatives and ventilators and push patients to get on their feet as soon as possible, in a bid to minimize delirium. The talks he gives to highlight the issue show patients talking and texting while on ventilators — a major break from the traditional practice of heavily sedating them. He also shows patients walking through hospital halls despite grievous injuries.

The “ICU Liberation Campaign,” which Ely cochairs, is organized by the Society for Critical Care Medicine, a professional group for ICU clinicians. If it works, it’ll both improve patient outcomes and lower hospital costs.

But it’s been a hard sell.

Despite its heavy clinical toll, ICU delirium is often ignored. Intensive care units are so stressful, so noisy, and so fast-paced that delirium is often overlooked.

“You may have one patient going into shock while another needs to be reintubated, so people get busy,” said Dr. Matt Aldrich, an anesthesiologist who has been implementing the ICU Liberation Campaign at the University of California, San Francisco, Medical Center, where he directs adult critical care. “Delirium has definitely taken a backseat.”

It’s not that clinicians don’t believe in the protocols, Aldrich said. It’s just hard to make time to implement them. “The challenge is to slow yourself down and do the things you need to be doing. It’s daily work. It’s maintenance,” he said. “It’s not letting little things slide and falling into old patterns.”

Keeping patients alive — but at a cost

In a way, ICU delirium is a problem born of success: Today’s intensive care units keep alive patients who would not have survived 20, 10, or even five years ago. ICUs have come so far in curbing problems like sepsis and acute respiratory distress syndrome that they’ve created a huge population of “ICU survivors” — those who make it out alive but end up severely impacted mentally and psychologically.

“We used to call it ICU psychosis,” said Justin DiLibero, a clinical nurse specialist working to reduce ICU delirium in the neuro and surgical ICUs at Beth Israel Deaconess Medical Center in Boston. “We knew it was common but thought patients got better when they got home. Now we know they come into the hospital as one person and leave as someone else.”

Family members are often the first to see that their loved ones “aren’t themselves.” Patients may act paranoid, lash out in anger, or simply seem quite silly, for example planning large galas while still intubated.

While the exact causes of ICU delirium are not fully understood, risk factors seem to include ventilation, which can reduce the flow of oxygen to the brain, and heavy sedation, especially with benzodiazepines, which can have neurotoxic effects. Immobility and physical restraints appear to contribute to psychological distress as well. The lack of sleep, noisy alarms, constant prodding by nurses and doctors, and patients’ inability to keep their hearing aids and glasses on may contribute, too.

“They come into the hospital as one person and leave as someone else.”

Justin DiLibero, clinical nurse specialist

The effects can linger long after discharge.

“As soon as I got home there were cognitive issues, really bad panic issues, flashbacks, all very gruesome,” said Jones. “I felt like I’d endured months of torture. I was scared to go to sleep. I’d wake up in a cold sweat.”

Jones had entered the hospital in 2012 with stomach pains that turned out to be caused by acute necrotizing pancreatitis. His pancreas was literally digesting itself; then his other organs started to fail. He was put on life support: On a respirator and dialysis, fed through a tube, the stocky and athletic Jones lost 70 of his 260 pounds. Nine days into his hospital stay, doctors gathered his family to say goodbye.

Thanks to surgery, a flood of antibiotics, and dedicated hospital staff, Jones survived. He’s incredibly thankful for the care he received.

But he’s also angry, now that he knows how widespread ICU delirium is, that not a single person talked to him or his family about the mental and psychological issues that so many ICU patients face.

“I thought, ‘Why in the world is this not included in post-discharge instructions?’” Jones said in a telephone interview from Chicago, where he has returned to work as a legal analyst. “They were so happy they had saved my life. But no one told me to expect any of this.”

A culture of ‘protecting’ patients with sedation

Ely has always been proud of the work done at his ICU. But in the late ’90s, he started to notice something deeply unsettling: Many of his patients weren’t doing well after they left the hospital. Some were severely impaired. Many couldn’t return to work.

“They couldn’t find their cars or balance their checkbooks,” he said. “We wondered, ‘What happened to them in the ICU? What went wrong?’”

Ely was shaken by the encounters, but when he tried to bring up the issue with fellow intensive care physicians, or critical care specialists, or even with the National Institutes of Health, he got no traction.

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His call to ease up on restraining and sedating patients butted up against what Ely says was a deeply entrenched — and deeply paternalistic — ICU culture. “The idea has long been: ‘We want to keep you unconscious so you don’t suffer.’” Ely said. “We thought we were ‘protecting’ patients.”

There were practical issues too: Heavily sedated patients are far easier for nurses to work with than patients who are frightened, agitated, or in pain. And it can be very hard to detect delirium in patients who are lethargic and seem unaware — but may still be delusional and suffering. “They told me I was in a coma,” Jones said. “But I was aware.”

Ely has spent the past two decades studying the issue and amassing the kind of data that are starting to convince his colleagues. A 2013 study, for example, showed nearly 75 percent of ICU patients developed delirium during their hospital stay. In roughly one-third of those cases, their cognitive problems were so severe that even one year after discharge, they mimicked mild traumatic brain injury.

To minimize such damage, Ely developed a protocol dubbed ABCDEF, with steps such as assess for delirium, choose sedation wisely, and push patients to early mobility.

When the procedures are implemented, they seem to work wonders.

At Beth Israel Deaconess Medical Center, care teams in the medical ICUs have reduced the number of delirious patients by 60 percent since 2012, at a cost savings of thousands per patient. They did this by carefully assessing patients for delirium, making sure multiple care team members agreed on those assessments, and then reducing sedation and particularly benzodiazepine use whenever possible.

“We discussed every patient every day, and delirium was part of the discussion,” said DiLibero, the nurse specialist who ran the project, which was funded by the American Association of Critical-Care Nurses, which recently issued a practice alert about delirium to its members. When nurses weren’t sure what to do, DiLibero said, they could call in “nurse champions,” who act as mentors and leaders.

Looking for delirium is especially important in elderly patients. Without a careful assessment, elderly patients with delirium may be misdiagnosed with dementia and sent to nursing homes unnecessarily.

The project at Beth Israel worked so well, it’s been adopted by other ICUs at other regional hospitals. But it wasn’t easy to get there. DiLibero has been working on the issue since 2010, his commitment sparked by seeing so many ICU patients, including his own grandmother, succumb to delirium.

“This is a massive, massive public health problem.”

Dr. Wes Ely, pulmonologist

“It’s taken years of concerted effort to get to this point,” he said. “It’s been about changing a culture.” That change is now palpable in his unit.

“When I started in ICU, anyone who was going to be intubated, they’d all be sedated, pretty deeply sedated,” DiLibero said. “Now some patients are completely off sedatives while still on a ventilator. I never thought I’d see that.”

While there is agreement that it’s crucial to prevent delirium whenever possible, many questions still remain on how best to treat it after it occurs. Vanderbilt is one of the few hospitals that offers a post-ICU treatment center; opened in 2012, it draws patients from around the country. At the center, patients are treated by a team that includes an ICU physician, nurse, pharmacist, case manager, and neuropsychologist who work together to help patients understand and alleviate symptoms.

Jones said therapy in Chicago was a great help to him, and included revisiting his ICU room to better understand his hallucinations.

He’s also committed to talking publicly about his experience in hopes others won’t suffer as he did. And he always carries a carefully worded life directive in his briefcase that makes clear that any intensive treatment he might need is provided in a way that is less likely to cause delirium.

“As bad as my illness was,” he said, “the post-ICU was more traumatic.”

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  • My father was in the icu from internal bleeding caused by warfarin. But they also stopped his sertraline, and there are bad side effects if you discontinue anti-depressants suddenly. After 5 days and suicidal dementia, I convinced them to put him back on it. He was immediately improved emotionally. No one had noticed any correlation. Abrupt changes in routine meds, especially in the elderly, may be a factor.

  • It’s a big push now and it’s right. I try hard not to slam my patients with drugs and not to restrain them. And I’ve paid the price for it too. Mobility is out of the question unless they protect staff from injuries and protect patients too.

  • I was sedated by dilaudid and was in the hospital for 8 day’s. I thought I was only there for 3 day’s. I thought I was in a nuthouse and everything was a toy, blood pressure machine to plastic pills and I didn’t trust the nurses and refused medicine and I Vs. I was very paranoid and scared. I called 911 and friends to come and get me outta there. It was a terrible experience for me and it still bothers me today. I’m very forgetful now and didn’t use to be this bad. I’m definitely not the same anymore. My doctor said she’s not gonna diagnose me with dementia just yet, however I know something is wrong with my thinking.

  • I have been there. It’s definitely the ventilation shock (a tube in your body!), the drugs, and the constant noise and light. Note that sleep deprivation is a torture method elsewhere. But the nurses don’t care, it’s their workplace, not your health. I only started to get better when they stopped the fentanyl and gave haloperidol for mental stability.

  • Debbie Tascone cont’d. Remembering no amount of technology will ever substitutes for the human touch. Holding a hand, explaining procedures in laymen terms and always being the patient advocate. I’m retired and I very much miss my patients , yes I still use the terminology “patient” who we are there to provide a healing, respectfull enviornment for. When I hear the term “customer” i think of buying a quart of milk. Godspeed. Debbie

  • I am a RN living with diffuse scleroderma. A number of years ago I had pneumonia and then bleed into my lung due to an anticoagulation reaction. I was transferred to Tertiary MICU, bronched, VAT Procedure chest tube insertion. Obviously I required intubation. My bfff’s and partner (all RN’s) were made aware of my wishes. With all due respect to the authors of the excellent articles on PTSD due to ICU ADMISSION, I do not choose to have a garden hose done my throat without complete sedation. I was intubated for eight days maintained on propofol as per policy. I was very fortunate to have a great team managing my care. I was an ICU Nurse and a damn good one. Some thoughts from the bed, stop yelling to a patient who is hypoxic, restless and scared to, “Calm Down”.

  • There should be some education available to the families and therapy for the patient before and after they get out of icu. I experienced some very strange hallucinations, if you will, while I was in ICU. My family was told by one of the nurses, “your mother is going nuts”. Yes she was laughing and joking with my son but it is still an inappropriate comment. I thought I saw (and still believe it to be true) a comedy show put on for the patients, thought I was moved to several rooms, one room was bright yellow with a floor made of small yellow storage containers the size of a coffee can, the walls were covered with the same containers, my friends child was behind the curtain making “curtain monsters”, my new embroidery machine was delivered to the hospital, and the donuts my friend brought for the staff were poisoned and someone died because of it, none of which was true. It was all very frightening to some of my family and to me. I was so upset by the donut deal, I begged for several friends and family to bring my attorney to the hospital. I was so upset by this issue, on a recent return trip to the hospital, I refused to go anywhere near the ICU part of the hospital. I was afraid they would see me and arrest me for the poisoned donuts. (there were no poisoned donuts)

    • I was given versed before my heart cath. Since my release from the hospital on July 18th, I have suffered from some memory loss. I have no recollection of anything that happened after I was asked to go wait to be called by the triage nurse. I have have trouble remembering things that have just happened a day ago. PTSD is a possibility since my release. I have since researched the drug and the results of my research are scary.

    • damn, this all sounds very familiar. I was in ICU recovering from surgery for a cortisone injection that became infected and soon went septic. I was put into a coma with fentanyl, and a cocktail of other drugs so I wouldn’t try to pull the tube out and would be unaware of its presence and would remember none of it. two weeks or so later I could breathe on my own so they removed the tube and eased me back into the world. I was still getting fentanyl and who knows what else intravenously. when I woke up and tried to examine my surroundings I quickly realized I was completely unable to move my arms and legs, and couldn’t speak because of a small tube that remained in my throat to help my breathing. it was pretty much my worst nightmare come to life. I spent several more weeks in that hospital in a severely delusional state. I thought there was a faction of the nursing staff whose only goal was ending my life. I had wild and frightening hallucinations and would start nasty arguments when my sister, who stayed with me every night for the first five weeks I was hospitalized, tried to tell me what really happened. I thought we were living underwater for awhile, was positive my hospital bed had wheels and an engine and I was driving it around the hospital. I was certain that when I walked up to the dispensing area to get my meds, the nurse on duty was keeping a share of the pills for her own use. never mind the fact that I was still several weeks away from beginning to walk with a walker. my belief in all these things and many more oddities and horrors was unshakable. I was hearing music where none was playing. having conversations with people who weren’t there. all night long I would try to dump the rocks I was holding out of my grasp and was shocked every time I uncurled my fist and found my hands empty. soon I was transferred to another hospital where they would get me healthy enough for the rehab facility nearby. this new hospital was a real shit show. horrible nursing staff. response time to a call light was ridiculous, especially during the night shift. worst example I have of this happened after I’d been on stool softeners for a couple days trying to get a break from the constipation the pain meds caused. I wake up during the night with an urgent need for the toilet, or at least a bed pans. I hastily hit the call button, after about 10 minutes it was over. I full on exploded, giant mess all over me, all over the bed, seriously nasty business. so, I hit the call button again. almost 30 minutes go by before my CNA makes his way to my room. I say hey, I called and no one came so I ended up having a bad accident, I need to be cleaned up. he comes over and takes a peek, tells me he has to grab some help but they’ll be back in 2 minutes. I wait 10 and hit the button again. by now it’s been 40 minutes since my bowels burst. this time the little bastards took 45 minutes to make their return. I was stuck in bed in a puddle of my own feces for nearly 90 minutes because these kids didn’t give a damn. they were probably laughing about the old guy laying in his poop. to talk to a doctor in this place you had to have a message sent to their pager. the response was always a positive I’ll be by before I go home for the night. this could mean you’re waiting 5 hours for him, and there was no guarantee he’d show up. just a couple tidbits to illustrate why I say the place was a dump. anyway, by this point I wasn’t hallucinating all sorts of madness, but I was still feeling some odd effects from all the drugs I’d been on. I couldn’t remember things I’d been told minutes before. names were nearly impossible to keep in my head. I found that by laying comfortably on my back with my arms crossed on my chest, I could close my eyes and these sort of movies mixed with visions would appear. mostly they revolved around friends and family, people and life in the hospital, just normal stuff. but after a few moments the video my brain was showing me would take a sudden violent turn. my best friend would suddenly produce a machete and start hacking my family into small chunks and I couldn’t help them because I was paralyzed, weird things of that nature and always rooted in something real. I started to dread closing my eyes at night but after a few rough sleepless nights I made a discovery. I wasn’t actually asleep so they weren’t really dreams and if I retained a bit of consciousness I could recognize these psychosis induced visions as something other than reality and to end the one I was watching at the moment I just had to open my eyes for a scant second. then I’d close them again and a new show would start. they mostly turned to a horror show pretty quickly, but maybe 1 in 8 or so would be fantastic with no ugly surprises. I got to where I could lay down and close my eyes whenever I had a spare 20 minutes and catch my own little show, I’d just keep flipping my eyes open and shut and wait for a good one to come along. occasionally I’d see something weird out of the corner of my eye but mainly lived back in the real world. finally got to the rehab center for 18 days of boot camp style therapy. the PT and OT I worked with were amazing. they worked my ass off and pushed to try things I thought were impossible, and most of the time I’d succeed which motivated me to work harder. they were also compassionate and concerned. when they saw the pain taking over or muscles giving out they’d stop and let you rest, bring some water and remind you to breathe right. the PT especially was also hilarious, she’d push me right to the brink and have me smiling and joking the whole way. the entire staff was very good to me. while I was there I’d do my work, eat my meals, and be so exhausted I’d be out in seconds. I was still struggling with names and had to check my daily schedule constantly to be in the right place when I was supposed to. most days I’d have a free hour at some point and lay down, shut my eyes, and catch a show. those were the only symptoms I had during that time. well my 18 days ended and I passed my tests and after 9 long and sometimes terrifying weeks I got to go home at last. that was 5 days ago. since I’ve been home and still can’t do many things that most people never think twice about my sister has come through again and is taking care of me while my rehab continues at home. this leaves me with a lot of time to myself and I’ve been spending more of it watching my little movie things each day. my sleeping pattern has dissolved into randomness. I find myself losing track of what pills to take each morning and evening and I have no idea when my appointments are. the depression I’ve fought all my life is pushing hard for a comeback. and I’m seeing things and hearing more things. at least 5 times today I caught myself responding to something I’d heard when I was alone in the room. weird music seems to be playing all around me but nobody else catches a note. when I’m alone friends and family members, and even our pets will come strolling silently into my room, stand there eyeballing me for a minute or two, and walk back out without a word being spoken. the strange feeling of rocks in my hands is back but this time there’s more variety. I’ll be thinking about getting some food and have a fork twirling around my fingers while I’m deciding what to have and I’ll feel the fork slip from my hand but it doesn’t clang when it hits the floor. I start looking around for it a bit confused by the lack of noise and after a minute it hits my like a train. I’m in the bathroom with my butt on the commode. all these things that show my mind has a blurred line between fantasy and reality, and the line seems to be fading. it might not do me any good in the long run but this article with the comments following have given a place to look for answers other than psychotic and schizophrenic. I’m starting to creep myself our a bit.

  • While a relative was in icu she was sedated. As the team was going to start the withdrawal from the ventilator, they wanted to introduce haldol and serequel. I said no. They used fentanol instead but enough to sink a battleship. Because I stayed in the icu with my relative she seemed to NOT have ptsd or delirium. On the other hand, I had the worst ptsd after leaving the facility and I was the healthy one. It took ME awhile to bounce back,

  • Up to 25% of women who have an unplanned c-section also develop PTSD but doctors never disclose this to patients. Even a regular birth can be traumatic – British researchers found that 3% of women who had an uncomplicated hospital birth displayed clinical symptoms of post-traumatic stress at 6 weeks postpartum and 24% displayed at least one of the three components of PTSD.

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