“They came in the room and were like, ‘Isn’t she going to die already?’ ” Johnson said.
The schoolteacher also saw a nurse poisoning her IV fluids and trying to steal her DVD player. Terrified, she began begging for help from people she thought she could trust. “I said, ‘Can you please just hold my hand and tell me how to die? I just can’t take this anymore.’ ”
Fortunately, Johnson’s experiences weren’t real. She was in the grip of ICU delirium, a condition causing terrifying hallucinations that often strikes intensive-care patients. When they arrive at the ICU, people with acute respiratory distress syndrome, such as Johnson, are particularly at risk. Studies have found that the condition occurs in 60 to 85 percent of patients who are on mechanical ventilation.
“Patients in the ICU have crazy experiences about blood coming out of the walls and nurses trying to kill them,” said Dale Needham, medical director of the critical care physical medicine and rehabilitation program at Johns Hopkins University. Needham led a study of survivors of acute respiratory distress syndrome and has studied ways to prevent ICU delirium.
‘A daily occurrence’
“ICU delirium has existed since ICUs existed,” said Needham. “We are doing invasive, painful procedures to patients while they are delirious. … If your thinking is confused, an IV becomes a knife.”
The ICU itself can be stressful. While healthier hospital patients convalesce in quiet wards not unlike dormitories, a modern ICU might look more like the bridge of the starship Enterprise.
Patients’ rooms typically surround a central station where vital signs are monitored on intimidating, sophisticated life-support equipment. Doctors, interns and nurses huddle around laptops that rest on rolling platforms, briskly conferring about life-and-death decisions. Family members, social workers and clergy come and go, often far beyond the hospital’s normal visiting hours. Humming machinery and beeping alarms contribute to an underlying noise level that one ICU nurse described as a “dull roar.” Many patients are hooked up to ventilators, which can be frightening, and many are on powerful sedatives that alter brain function. They are often disturbed or awakened — in some patients’ cases, hourly — for tests or personal care.
“It’s sensory overload,” said Arthur St. Andre, director of surgical critical care at Washington Hospital Center.
All these factors work on patients who are already desperately ill. “If they weren’t having a life-threatening situation, they wouldn’t be in intensive care,” said Needham. “This may predispose them to having a negative experience.”
ICU delirium is “a daily occurrence,” said David Hager, the director of Hopkins’s medical progressive care unit, who has studied ICU delirium. “We’re always on guard for it.”
And they do have to be on guard. Patients in the grip of what is called hyperactive delirium become noticeably distraught, even lashing out at caregivers. But St. Andre noted that he sees more patients with the hypoactive form — quietly disconnected from reality, sometimes without staff or family members’ knowledge.
“Delirium” isn’t the word a 78-year-old retired teacher from Washington uses to describe his experience last November, when he spent four weeks in the ICU at USC University Hospital in Los Angeles. The patient — who asked not to be named to preserve his privacy — suffered congestive heart failure while on a trip to California and had to undergo open-heart surgery.
“I had what would better be called elaborate dreams,” he wrote in response to a reporter’s questions. Because he is hard of hearing, he preferred to communicate by letter. He described baroque hallucinations — one featured “an imaginary search by train from Calif to Florida to Mexico then by plane to Canada to NYC looking to have my operation completed” — that he said reflected his worries about a surgical procedure that required his chest to remain unsutured for three days.
“The theme for all these dreams seems to have been a concern/anxiety about the care I was receiving from the hospital,” the retired teacher wrote. “Except they were markedly more elaborate, and memorable, and their fantastic unreality was not recognized by me immediately on waking.”
Recovering from her lung injury, Johnson also had a hard time discerning what was real. “I felt like I was in a submarine,” she said. Johnson thought that patients were executed in a death room if they were unproductive — a fate a mysterious visitor told her she could avoid if she married him and became “his slave.”
Recognizing how common ICU delirium is, hospitals are trying a range of strategies to combat it.
“Old-school physicians may say delirium is normal,” said Needham. “That’s not the case. It’s something we can prevent, and it’s important that we do try to prevent it.”
One tactic that works is managing sedatives. “There’s a paradox,” said Hager. “People come into the ICU and are put on sedatives to be comfortable, but then when we take them away, the patients go through agitation … and get more sedatives that precipitate delirium.”
Hager said that Johns Hopkins not only treats sedated patients with antipsychotic drugs but also tries to get them off sedatives as quickly as possible.
Needham said that simple things — making sure that blinds are open when the sun’s out to help disoriented patients differentiate night from day, and reducing the number of alarms and pages that patients can hear — help patients better understand what’s happening to them and remain calm.
At Washington Hospital Center, St. Andre said, it’s important to create the most “natural environment” possible — perhaps playing soothing music on headphones or, when patients must lie flat for long periods, mounting peaceful pictures on the ceiling.
Hager said the staff evaluates ICU patients for delirium each day and closely controls their environment. Staff and family members are told to ask such questions as “Does a stone float on water?” to assess whether patients are thinking clearly, and to take action if they are not.
“Rather than getting a psychiatrist to come and go through a rigorous series of tests, a nurse at the bedside can do this a couple of times a day,” Hager said.
This is especially important because the effects of ICU delirium follow patients out of the hospital. Needham said that as many as 30 percent of those who develop delirium have symptoms of post-traumatic stress disorder. And though delirium isn’t a recognized cause of death, patients who have suffered from the condition die sooner than patients who haven’t. According to a study published by the American College of Chest Physicians, every day a patient is delirious brings a 20 percent increased risk of prolonged hospitalization and a 10 percent increased risk of death.
Not all patients remember their delirium. But when they do, the memories can be terrible. It wasn’t until long after her release from the hospital in March 2007 that Johnson could discuss her hallucinations.
“I didn’t understand that the medicine played a role in this,” Johnson said. “I thought that if I told them [about the delirium] they would put me back in. I kept all of this to myself for a while.”
Last year, she mustered the courage to visit her old room. “I went back up and looked around and tried to see what it was like in a right state of mind — being better, feeling like I can stand on my own,” Johnson said. The experience not only eased her concerns but also inspired plans to visit ICU patients, even ones she doesn’t know.
“I know what helped me was that people loved me and visited me,” she said. “You feel like you’re fighting for your life.”