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When 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.

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.

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.”

  • I had a subarachnoid brain haemorrhage last year, in May. I was in ICU for about 5 days then a high dependency unit for 3 weeks. I was intubated and in a coma for about 3 days. I had delirium/ confusion/ hallucinations and lack of sleep for about 3 weeks! A combination of factors made it less frightening for me; unconditional love and calmness from my partner who didn’t react to the content of what I was saying or come back with logic or argument, but instead responded to my emotional state, he encouraged me to talk about what I was experiencing and didn’t make me feel judged or labelled. I’m an experienced meditator so I’m somewhat used to amazing phenomena and what feel like other dimensions and realities, and I, being a true scientist, keep an open and inquisitive mind about things which are not yet understood by science. I observed these experiences without judgement and allowed them to be, one, because I couldn’t stop them if I’d tried, and two, because I thought there might be useful communication from my unconscious at the very least which could help me to heal my own traumas.
    Even though I knew I was having strange experiences it didn’t stop them happening. I too saw dead people, and felt I was being harvested for my life force and I heard voices. There were a mixture of benevolent and malevolent characters in what felt like alternate realities, playing out simultaneously. Time loops happened, I saw visual hallucinations, some nice, including a winter wonderland scene and Faerie folk and some were scary, such as seeing the hand gel dispensers as the scream mask and a clown face rolled into one. The doors of the ward sounded like a giant toad belching every time someone came in or out! In my mind’s eye I saw other times, places and possibilities. I felt everything I was seeing, being ‘in it’ and watching it like a film. In some ‘dreams’ I had nice experiences, like visiting Russian and Siberian horse dealers and hearing their traditions and Faerie tales and in others, a nurse wanted to kill me. In others I was being told I’d be put in a taxi to die and they’d say I discharged myself in the middle of the night. It wasn’t until my sister visited and got the pharmacist to tell me I didn’t need to take any of the medications if I didn’t want to, that I stopped all my medication – fearing why she’d said that in my confusion… not very helpful in one way doing it like that, as I was on lifesaving drugs to stop vasospasm, a deathly complication of brain haemorrhage. But it meant a break in the codeine – an opiate – being given because of huge agony of intercranial pressure and blood all down my spine irritating the nerve endings. It made me ‘come back into my body’ – I remember thinking, oh I’m back, it’s too soon. The pain was horrific and caused all sorts of problems including blindness in one eye from Terson’s syndrome which suddenly got much worse. I literally got out of bed to relieve the pain and saw the faeries leaving the hospital and felt really sad about that. I got restarted on codeine but it didn’t affect me so much anymore mentally. I was put into a side room where I could finally sleep! Then I started getting better. I just accept that I experienced things I don’t understand and feel I don’t need to really, it is what it is. I feel my brain was trying to entertain me and was also processing the experiences in metaphors and dreams except I was awake and so pumped from adrenaline from being constantly prodded and poked, that it had to do it with me awake. Various fears came up and issues from my life, and I think I was trying to resolve them too. I do have difficulty now getting back to normal life but because of the lack of focus I have now.

  • I had 49 days in ICU after Septic shock Hospital induced after cardiac bypasses and thymoma removal , resulting in liver, respratory (hospital induced pnuemonia) kidney failure, renal failure, 5 intercostals, dermal emphysema, HITS, blood clots in lungs, intubated andon a ventilator for most of the time undable to talk or move due to being heavily sedated to the point I could not raise my hand more than an inch or two, I heard the nursing staff as referring to this combination of drugs as “handcuffs”. I was a fit and very strong man of 108 Kg’s and lost 18Kgs of muscle (it leaves the fat). I had never ending nightmares every night I tried not to sleep, hallucinations that still seem real (months later) I have many memories real and I would imagine imagined of the most horrific nature an dfind now that my personality has chnaged (I am on drugs to lower anxiety) and whilst working have problems with memory and am cocnstantly tired and often confused. I had no real acceptance of my issues in rehab and was told I ha dno cognitive legacy loss as I did not have a lot of oxygen deprivation to the brain.

  • My father had open heart surgery. He had complications afterwards that caused him to be on a ventilator and in a medically induced coma for 64 days. He told us in explicit detail everything that was done to him. He could hear the hospital staff talking about him and hear us crying, but could not open his eyes or respond. When he was released from rehab 2 years later. He made me swear to God to never have him resuscitated again. He was never the same person after that experience. We were thankful because we got 10 more years with him . But he was never the same, he could not sleep and had nightmares until he died . Because of his ICU experience.

  • One year ago I had open heart surgery and lung cancer surgery at the same time. Eleven hours on the table. I had everything from delirium to hallucinations. I kept asking them to let me die. I blamed my son for not letting me die. I was so angry. One year later I still have dreams, incontrollable shaking and anxiety when we get close to the hospital for follow up appointments. I am slowly working my way back from the torture chamber I thought I was in. Thank God for my family for their support. I certainly would never choose to do that again.

  • I went in for 2 major spine and body surgeries separated by 5 days of induced coma to achieve traction that couldn’t be achieved otherwise, it was a 3 tier, neck, body and lumbar scoliosis correction with rods from neck to pelvis… I was in this “twilight” as surgeon called it, but it was ketamine and trauma induced delirium, full of horror and torture and death, over and over… For 15 extra days, so 22 in all, then another 4-5 that I still felt unreal. I don’t know what to do to get better… My surgeon has acted like I am exaggerating, but I’ve said so many times, I’m not the same person… I don’t even have the same body. I’ve had to have 6 more surgeries since, to fix rods that have failed, and to see my muscles back down in my right side… All in 16 months time… I’m so angry, they messed with my brain and now I have memory loss and PTSD, panic attacks…. How can I get better??

    • Kelly my heart goes out to you. As I meditate which is the only thing that brings me peace in a life that has become chaotic, I will keep you in prayer. May the peace of God surround you as you journey out of this experience.

  • I was put in an induced coma in 2006. I was having crohns surgery and my liver was nicked. I have never fully recovered from my experience. October, November and December are my worst months of the yr as it’s the anniversary of the accident. I don’t remember what happened at the time, I just woke up with a tube coming out of me in a dark room with bleeping noises and people dying around me. Their children were crying. It was a long open ward in Birmingham England. My drs have never understood my PTSD and just throw antidepressants at me and hope I’ll shut up. My memory is so bad. I be confused. I’m not me. I’m lost in my own body. No one ever explained how I’d feel or cope. After 13 yrs I thought I’d get over it but my head remembers smells and noises. I remember being air lifted back home to ireland but I was treated so bad I just stopped going to drs. Could u please advise me on how to cope. On how to forget. On how to sleep!! My panic attacks are going to kill me. They’re worse now than ever. I’m not ME!

    • Totally went through the same thing… And the medical world just tries to ignore it away… My 22 days were 100 years of death and torture, have left me damaged, my memory, what I remember, the things that happened during my 22 days formed actual memories, they weren’t dreams… Have you found ANYTHING my friend?

      Kelly West

  • My sister is in ICU at the moment and is suffering badly with ICU delirium. They day after her tubes were removed and she was able to talk she wasn’t make any sense. They told us of ICU delirium and how they wanted to get her to another room asap. It doesn’t help also that she battles with depression. It’s sad to see and hear her saying things that are not true. I continue to speak positive words and paint a picture of happy visuals. I have faith she will be okay soon.

  • I too suffered from ICU delirium’s and had to go to therapy for ptsd afterwards. I have been thinking of going back to icu to help better understand what I went through . Knowing people do that helped. I also have problems with memory post and was grateful to know that is common too. Thanks for this article

  • You don’t have to be in ICU to have delirium. I had a difficult hysterectomy several years ago and have often felt like I had PTSD or something majorly wrong after. I felt like no one cared or understood what was happening to me, including my family.

    • Friends, my brother suffered from ICU delirium, and brain damage from high pressure vent.

      The two go hand in hand.

      When we did the research…and inquired with the medical staff regarding these two topics… we were met with surprise. And basically, no comment.

      This is a topic which will not be commented upon by your local med staff

      A no-no regarding discussion

      Status quo is, we saved them. Sorry if they incurred brain damage

      Leave the 1960’s

      It now is 2020

      May God Bless You and you Family Members

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