Undone in the ICU

From the Summer 2015 edition of Vanderbilt Medicine Magazine

Illustration by Yuri Lobo
Illustration by Yuri Lobo

“I was under the impression that I was being held prisoner. There were people I was aware of who would come into the room, in the outer areas, and they wouldn’t talk to me or look at me. I remember being aware that I couldn’t move my arms. I was being held somehow. I started picking at what I thought was a line of threads, thinking, if I could just get these threads loose, I can be free. I felt that I was a prisoner and I was trying to escape.”

Six years after being admitted to Vanderbilt’s medical intensive care unit (ICU) for acute respiratory distress syndrome, Melissa Akers, 55, still recalls with clarity the delusions she experienced while she was sedated and on life support. The images that haunted her as she slipped into a state of delirium over the course of six weeks in the ICU play on a continuous loop in what she refers to as ‘snapshot memories.’

“I remember to the left of my hospital bed there was a window that I thought was a dead end street with a Volkswagen parked in it, and I thought if my husband could just get me to it, I could get away,” Akers recalled.

Even more frightening than the hallucinations she experienced in the ICU is the cognitive impairment she has struggled with since she left.

“My brain changed incredibly. My short-term memory doesn’t stick. I am not back to where I was before I got sick,” said Akers, who could not walk, talk or feed herself after her lengthy hospital stay. “Learning to accept that I am disabled is something I struggled with and fought against. The words ‘new normal’ is the place I had to get to.”

Between 60 to 80 percent of ICU patients experience delirium, characterized by inattention and confusion and the inability to think clearly and make sense of what is happening. Delirium is typically caused by diseases like sepsis combined with the sedatives patients are given.

When critically ill patients experience delirium, which can occur over a short period of time, it is a predictor of longer stays in the hospital, higher cost of care, threefold higher likelihood of death by six months, and long-term cognitive impairment that looks a lot like dementia.

Akers prided herself on being a multitasker when she worked in the Medical Center’s development office. Her executive function—a group of thinking skills that help people plan, problem solve and set goals—spiraled to the ninth percentile following her ICU stay, and she was unable to return to her job.

Understanding the Scope of the Problem
Much of what is known about delirium in the ICU and its long-term impact can be attributed to the work of Vanderbilt’s ICU Delirium and Cognitive Impairment Study Group, led by Wes Ely, M.D., MPH, professor of Medicine and Critical Care, alongside an interprofessional team of other physicians, surgeons, nurses, psychologists, pharmacists, biostatisticians and health policy experts.

In the late 1990s, Ely, a critical care pulmonologist who specializes in geriatric problems, started noticing a trend among his patients who were lucky enough to leave the ICU alive.

“I started seeing patients, both young and old, come back to the clinic who couldn’t balance a checkbook, plan a party, remember where they parked their car, or walk without support. Sometimes they couldn’t return to work or school,” Ely said. “Patients and families ask ‘What happened, and what is this private nightmare I’m living now?’”

Photo by Joe Howell

In an attempt to measure delirium, he and his colleagues developed and validated the Confusion and Assessment Method (CAM) for the ICU (CAM-ICU), a 2-minute nursing bedside assessment based on one developed for elderly patients, and began training intensivists and nurses at Vanderbilt and around the country.

“So now people could measure something. It was valid, it was reliable. It meant something,” Ely said. “It quickly became an ‘if you build it, they will come’ sort of phenomenon. People all over the world started using the CAM-ICU and translated it into more than 25 languages.”

Vanderbilt’s ICU Delirium and Cognitive Impairment Study Group has spent the past decade connecting ICUs around the country, sharing information and collaborating to restore patients not only to good health physically, but emotionally and cognitively. The scope of the group’s work is voluminous with more than 150 peer-reviewed publications on delirium alone. (See sidebar)

“Delirium in critically ill, hospitalized adults is a serious yet understudied issue,” said Molly Wagster, Ph.D., chief of the Behavioral & Systems Neuroscience Branch in the National Institute on Aging, part of the National Institutes of Health. “These findings provide important evidence of the extent of the problem, the imperative for greater recognition and the pressing need for solutions.”

A 2013 New England Journal of Medicine study found that 74 percent of the 821 patients studied, all adults with respiratory failure, cardiogenic shock or septic shock, developed delirium while in the hospital, which the authors found is the strongest and most modifiable independent predictor of a dementia-like brain disease that can persist years after discharge from the ICU.

“As medical care is improving, patients are surviving their critical illness more often, but if they are surviving their critical illness with disabling forms of cognitive impairment then that is something that we will have to be aware of, because just surviving is no longer good enough,” said lead author Pratik Pandharipande, M.D., MSCI, professor of Anesthesiology and Critical Care.

Akers’ husband, Doug, said the hospital staff tried to prepare them for what lay ahead, including several months in rehab.

“It wasn’t the ARDS she was recovering from; it was the immobilization. Six months after rehab, Melissa still was barely able to go up steps. You might expect that with someone who has had a stroke, not just from lying in bed,” he said.

Escape Fire
Ely describes the standard of care that had to be overcome in order to effect better outcomes for critically ill patients.

“If a patient comes into the ICU and is dramatically sick, he is put on a ventilator. The old way of thinking was ‘You are so sick, we don’t want you to remember any of this. We are going to sedate you with drugs, tie you down, protect you from yourself; and when we think you’re better, we’ll wake you up, in six or seven days.’

“In the meantime the patient has now acquired brain disease and body disease; his muscles, brain and nerves are all screwed up, and it’s not just because of the disease he came in with. We created more of a disease for him by immobilizing him with both chemical and physical restraints. We actually poured kerosene on the fire and made things worse.”

Photo by Joe Howell
Photo by Joe Howell

The ICU Delirium and Cognitive Impairment Study Group, in collaboration with the University of Chicago and others and building on evidence published in major journals like the Journal of the American Medical Association, New England Journal of Medicine and Lancet, developed the ‘ABCDEF’ protocol to help patients “escape the fire of pain of suffering,” Ely said.

ABCDEF is a standard bundle of ICU measures that includes:

Assess for and manage pain; Both Spontaneous Awakening Trials (SATs) & Spontaneous Breathing Trials (SBTs)—i.e., turning off sedatives and the ventilator every day; attention to the Choice of sedation and analgesia; Delirium monitoring and management; Early mobility; and Family engagement.

“Now, instead of coming into the ICU and being thrown in the fire with the ventilator, sedatives and restraints, we’re going to assess every single day for pain,” Ely said. “We ask the families to keep us honest when we tell them we’re going to check their loved one every day for delirium, we’re going to stop sedatives and try to get them off the ventilator every day.”

ICU Liberation
Ely was recently tapped to co-chair the ICU Liberation Campaign, created and funded by the Society of Critical Care Medicine (SCCM) with a grant from the Gordon and Betty Moore Foundation. The campaign is designed to educate providers on the clinical practice guidelines for the Management of Pain, Agitation, and Delirium (PAD) in Adult Patients in the Intensive Care Unit. Timothy D. Girard, M.D., MSCI, assistant professor of Medicine, serves on the task force.

Vanderbilt will host a two-day conference in September with ICU simulation demonstrations that will teach implementation strategies and discuss application of the PAD guidelines. Additionally, there will be a collaborative process with 80 ICUs across the country (both adult and pediatric) to put the ABCDEF bundle into play.

“Hospitals across the globe are implementing this,” Ely said.

Gordon Moore, co-founder of Intel, prompted the addition of the “F” to the bundle for ‘family engagement’ based on his own experience of ICU delirium.

Having dedicated his career to improving the lives of patients not only while they are in the ICU but after they leave, Ely sums it up with what he calls his mantra:

“It’s about preservation of self-worth and human dignity,” he said.

“It is undignified to be lying in a hospital, suffering in pain. We have to show our patients that we know they have dignity. Historically, the ICU has not been geared to do that. In the past, providers did not care to look at how patients did after the ICU as long as they survived the life support,” he said. “The patients were telling us their lives are awful afterwards. This is unacceptable.”

To hasten recovery, Vanderbilt now follows ICU patients after discharge through the Vanderbilt ICU Recovery Center led by Carla Sevin, M.D., neuropsychologist James Jackson, Psy.D., alongside pharmacists and nurse practitioners.

Melissa Akers, who battled leukemia for two years before she developed ARDS that landed her in the ICU, can attest to the need for follow up.

“I never dreamed after leukemia and chemo that anything else could be worse. And this was so much worse—spiritually, emotionally, physically and intellectually—than cancer. Presented with ARDS or cancer, I’d choose leukemia,” she said.

  • Marc Williams

    There is no mention of monitoring the brain with continuous EEG during the ICU stay. It has been reported that some patients have subclinical seizures without having a history of them. These can cause its own damage in those areas responsible for memory and other functions. Maybe EEG should be added to the work-up and monitoring of these patients and see how the brain is doing.

  • This article points out what so many of us see and know to be true for our patients. Too often this goes completely unseen since so few of us follow patients post ICU discharge. It’s intensely powerful to read that this lady would choose leukemia and all that it entails over ARDS and its sequelae, delirium most particularly. This lady’s experience is in stark contrast to our traditional view that we ought to merely keep our ICU patients sedate and comfortable for their own good, and that delirium is merely a bump in the road, at times even mildly entertaining and humorous. This is yet another example of serious, avoidable harm that we must tackle. Kudos to Dr. Ely and his team at Vanderbilt from our ICU team at Southlake Regional Health Centre, in Newmarket, Ontario, Canada.

  • Ruby Reece

    Thank you for thoughtful article, I could sense myself in your place. My husband just spent 45 plus days in SICU in the VA hospital, Nashville. We were sent to rehab in our hometown in Dalton on August 14th. I didn’t really notice much until I got him home on the 26th. He will ask me to get him something, by the time I get back with it he has needed two or three more things he has wanted me to get/do for him. He seems frustrated when I don’t move /get items fast enough. He’s cranky, and short tempered, says things that I know is not “him.” I try to stay focused and not get distracted by his comments and actions, but they are sometimes hurtful. I have two children, but none that I can ask for the assistance of. My question is this: How long do I need to expect this to last, or is it longterm, and could it lead into Alzheimer’s? Your help in this is appreciated. Thank you.

  • Henrik Park Preisler

    Fantastic article. It really put things into perspective in the ICU setting.
    In my ICU Department we are actually right now conducting a study:
    DELIRIUM, ELEKTROENCEFALOGRAFPHIC CHANGES AND
    CORTICAL SPREADING DEPRESSION IN CRITACALLY ILL PATIENTS.
    It’s a ph-D study.

  • Polina Cherpel

    It would likely not be feasible financially. Even the smallest ICU has around 20 beds, with majority of patients being long term residents there. Supplying EEG monitor for each one would be costly, let alone the time required for interpretation of such voluminous amount of data, and special training for the docs. The idea is great though, although it would not be embraced in our imperfect world.

  • dwhit

    Thank you so much for the article. I also experienced delirium after being hospitalized for 21 days (10 days intubated and on a ventilator) in ICU for hospital acquired pneumonia and sepsis. Prior to my hospitalization I was working as travel registered nurse in Emergency Departments from Nome, Alaska to Yuma, Arizona. Following discharge I experienced severe deconditioning unable to perform ADLs, I participated in outpatient physical therapy and rehab and grew stronger rapidly. Three months after my illness I was still not able to work in the fast paced ER setting. I was unable to think clearly or quickly enough. It has been three years since my illness and I am still unable to practice in a clinical setting. My memories of time spent in ICU are still very vivid and I have recorded them. I felt I was being held hostage and I kept planning an escape. Please continue to study this problem and I still feel I have cognitive deficits. Thanks again.