"We need to strive to help patients be awake and alert during the day, even when they are very ill.”
-Karin Neufeld, director of General Hospital Psychiatry
He was handcuffed to a railing among the criminals in City Jail, fighting fiercely to free himself. Guards stood by ready to shoot him if he escaped. Panicking at 3 a.m., Robert (not his real name), a practicing private attorney in Baltimore, called his wife to pick him up immediately. He would be waiting outside on a bench, he told her.
“It’s OK. You’re at Johns Hopkins Hospital. In the ICU. Go back to sleep,” his wife said, trying to be comforting.
“Come now. How can you leave me here?” he pleaded.
Agitated and afraid, he called three more times that night.
Learn more about the Diary Project in the ICU
The 63-year-old patient, who had arrived in the Johns Hopkins Surgical ICU after surgery for a lung abscess with severe infection, was suffering from delirium, an increasingly recognized phenomenon found in patients with physical illness in hospitals across the United States.
As physicians develop more skills in technologically advanced ICUs, they are saving more patients from previously catastrophic illnesses. The other side of the coin: The sickest of survivors frequently experience delirium at some point in their course of treatment. The condition occurs in 70 to 80 percent of acute respiratory failure cases, according to a 2013 study in the New England Journal of Medicine. Among the elderly the ICU delirium rate is similarly at about 80 percent, experts say.
The fantasies that delirious patients describe are bizarre: children running around with animal heads; nurses who kill or rape patients; flying to Greece on a hospital bed; being immersed in oceans of blood and other scenarios straight out of a science fiction horror show.
Often these episodes may be misinterpretations of medical procedures or activities in the hospital. A male patient in The Johns Hopkins Hospital intensive care unit, for example, imagined that his penis was being cut off when he was catheterized. The lawyer with severe infection who was convinced that he was in jail was fighting bedside physical restraints.
As fantastic as these stories can sound, patients who experience such visions are convinced they are real. “It was in no way a dream. I was fighting. I felt it physically, emotionally,” says Robert, who has regained his health and forgotten most of the procedures in the ICU except for the jail vision.
Indeed, while the garden-variety nightmare or bad dream can be easily shaken off, the hallucinations that accompany delirium can linger for months. Delirium can also take the shape of quiet depression (going unnoticed as a patient slips into lethargic sleep), yet still have long-term impacts on health and healing. Studies conducted in recent years at Johns Hopkins and elsewhere have linked delirium to longer hospital stays, long-term cognitive dysfunction, post-traumatic stress disorder (PTSD)—and even death.
For older patients, relatively short-lived delirium can be confused with dementia, leading to unnecessary institutionalization in nursing homes. In children, there is concern that delirium observed in the Pediatric ICU can lead to cognitive impairments.
While delirium is known to accompany infection and even alcohol or drug withdrawal, its presence in the ICU has only recently become a red flag for other cognitive problems.
Psychiatrist Karin Neufeld, president of the American Delirium Society, is among those at The Johns Hopkins Hospital who are leading efforts at Hopkins Hospital—and nationally—to put delirium in the spotlight in hopes of improving efforts to prevent and treat it.
But that will require a culture change within the ICU, she says.
“There’s an old-fashioned assumption that if a patient is sick he or she should sleep, and that sedating patients when they are very ill is the kind thing to do. But we don’t want patients to sleep during the day,” says Neufeld, director of General Hospital Psychiatry. “It is possible that one of the reasons there are such bad outcomes associated with delirium is that people get weak from lying in bed and get all sorts of complications, including decreased ability to think clearly, even months after recovery."
"We need to strive to help patients be awake and alert during the day, even when they are very ill,” she says. Changing this attitude among health care providers must occur “unit by unit” in hospitals across the nation, she says.
A New Protocol
That effort at Johns Hopkins started years ago, thanks largely to research led by Dale Needham, medical director of the Critical Care Physical Medicine and Rehabilitation Program. In 2004, he began delving into the effect of delirium in acute respiratory distress syndrome (ARDS) patients, among the most severely ill at the hospital. “We had a large grant to study physical and mental health outcomes of ARDS survivors. We didn’t know much about these long-term outcomes,” says Needham.
“I began to look at the data and [saw that] our own patients were frequently getting delirium and receiving heavy sedation. In addition, we were seeing that many had PTSD, with horrible memories of nurses trying to kill them and patients thinking they had been raped and other things… I wanted to reconsider our approach to sedation and delirium in the ICU.”
Needham first looked at the amount—and type—of sedation that patients were getting. High doses of benzodiazepines and opiates appeared as culprits in delirium, often obliterating a patient’s memory of all real experiences in the ICU, which only leads to more confusion.
“We learned to change sedation,” he says. “This was a really big deal.” Based on Needham’s research, medical teams in the Hopkins MICU found that patients can be comfortable with only intermittent use of low-dose opiates as opposed to continuous infusions of benzodiazepines and opiates. “Our approach is to simply reduce, or where possible eliminate, the use of benzodiazepines,” he says—findings that are among those that have shaped guidelines now used by hospitals throughout the United States.
In a paper published last June in Critical Care Medicine, Needham and his colleagues reported on a new protocol for patients in the MICU. It calls for administering sedatives in smaller amounts, and only on an “as needed,” rather than continuous, basis. “Use of sedation infusions can be substantially decreased and days awake without delirium significantly increased, even in severely ill, mechanically ventilated patients with ARDS,” the researchers reported.
Needham has also found that exercise can improve a patient’s outcome—physical and mental. He and his colleagues developed exercises—including cycling in bed using a specially developed device and electro-stimulation of muscles in the legs. The goal: to prevent muscle wasting that depletes patients of strength and mobility.
"How do you get people back on the horse of life so they see the world as a less ominous place?”
-O. Joseph Bienvenu, Psychiatrist
Sleep deprivation is another modifiable risk factor for delirium, Needham reports. He and Biren Kamdar, formerly a fellow in Pulmonary and Critical Care Medicine and now at UCLA, developed an ICU “sleep checklist” for individual patients including no caffeine after 3 p.m., curtains closed by 10 p.m., eye masks, soft music and ear plugs, and a guideline for avoiding inappropriate medications for sleep.
At Johns Hopkins, ICUs located at the corner of the Sheikh Zayed Tower are filled with daylight and sweeping views of Baltimore City and the harbor to help orient the patient to day and night. Nurses play a key role in reorienting patients, whether by turning on The Today Show, a familiar morning ritual, or turning out lights regularly by 10 p.m., or keeping track of the patient’s sleep cycle and episodes of delirium.
Of course, in order to treat delirium, the critical care team needs to know when a patient has slipped into the syndrome. This isn’t always obvious, since some delirious patients—rather than being agitated—are calm and quiet. Thus, “we now we do a delirium assessment as part of routine care,” Needham says. This includes a screening tool, in which nurses ask seemingly simple questions—“Are there fish in the sea? Can a stone float on water?” During daily rounds, the medical team discusses results of the delirium assessment, and then determines the care plan based on the results.
Among elderly patients, it’s particularly important to differentiate between dementia and delirium, notes psychiatrist Karin Neufeld. Before surgery, older patients should be tested for pre-existing cognitive impairments; individuals with memory decline are more likely to have post-operative delirium and should be monitored closely.
When the Nightmare Continues
Even with new screening, prevention, and treatment procedures in place, some ICU patients will experience delirium and go on to develop post-traumatic stress disorder (PTSD). In the months after they leave the hospital, such patients avoid things that remind them of their hospitalization, have trouble sleeping, and generally feel that they are in danger, says O. Joseph Bienvenu, a psychiatrist at The Johns Hopkins Hospital.
Predicting who will develop PTSD is difficult, adds Bienvenu, who has researched and treated many patients who have been critically ill. In a study last year, he found that one in three patients with ARDS experiences PTSD a year after the medical event.
"We learned to change sedation. This was a big deal. Our approach [now] is to simply reduce, or where possible eliminate the use of benzodiazepines.”
-Dale Needham, Medical Director, Critical Care Physical Medicine and Rehabilitation Program
Bienvenu offers the case of Gary*, who came to Bienvenu for treatment. The father of two appeared in robust health from weightlifting and held a steady, demanding job as a grocery store manager until he contracted a debilitating lung disease that landed him in the MICU.
When he returned home from the hospital, he was surprised by the roadblocks to his recovery. “I had a lot of different kinds of dreams,” he recalls. “I would see blood circles. Kids running around with animal heads. … I thought someone had clipped my penis off. I thought these things were real. And [my family] looked at me like I was crazy.”
His lack of strength and memory difficulties also surprised and disheartened him. He couldn’t walk more than a few blocks. And he would lose track of business that had previously been routine. Cognitive problems kept him off work for a year.
Fearful of another traumatic experience, Gary became obsessed with his health and avoiding germs. At the first hint of a cold, he went to the hospital. He did not want to hug his children or get close to them. He talked constantly to his wife and other friends and fellow employees about how close he had been to death.
“How do you get people back on the horse of life so they see the world as a less ominous place?” says Bienvenu.
“It turns out that information seems to allow people to process what occurred and really reduces PTSD. It empowers the patient.” Cognitive behavior therapy, effective in helping war victims and veterans cope with PTSD, can help ICU survivors, Bienvenu has found, though the treatment should be geared toward what actually occurred.
“People like Gary are so appreciative of having someone to talk to about it,” says Bienvenu. He is working with Needham, Neufeld, and others to address the mental health needs of delirium survivors after they leave the hospital.
The Diary Project
In one such effort, Bienvenu is leading an ICU “Diary Project.” Beginning in late summer, all nurses in the MICU will chronicle—in plain terms—what the patient experiences each day, including providing pictures. Family members will be invited to write as well.
When patients can’t remember anything about their condition as a result of medications or illness, the ICU diary is intended to provide a starting point for coming to terms with their illness.
Used first in Denmark in the 1950s, and now throughout Scandinavia and England, such diaries have been proved to be a low-cost way to reduce the incidence of depression and anxiety—as well as PTSD—in ICU survivors. In a study in Critical Care, English nurse Christina Jones, who helped pioneer the concept, reported that only 5 percent of patients who kept ICU diaries had PTSD three months after release from the hospital compared to 13 percent who did not have the intervention. The diaries proved to reduce stress and PTSD in caregivers, as well.
At Hopkins Hospital the Diary Project is headed by nurse Rebecca Sajjad, who will be training nurses in the MICU to write chronological narratives about the medical treatments and conditions experienced by all their patients in critical care.
“We explain what is going on in nontechnical language. For those who have PTSD, it’s very difficult to convince them that their ‘visions’ were not real. That’s why the ICU diaries are so important. It makes it easier to explain why they have a hole in their neck, where that scar is from, why they feel weak,” says Sajjad. “It’s going to make a difference in how patients view themselves, how they recover.”
Ann Parker, a second-year fellow in Pulmonary and Critical Care Medicine, is working on a proposal for a different kind of follow-up intervention. Her plan: A physician will call the ICU survivor weekly for eight weeks to address psychological and physical problems related to their illness and treatment in the ICU.
“We want to give people tools to actively cope with whatever stressors they’re dealing with,” she says, “so they are able to be proactive in their own recovery.”