hospital patient
The ICU saves lives, but many patients leave with psychological scars. Doctors and psychiatrists are trying to change that.
Anthony Russo was sedated and paralyzed, his lungs filled with fluid. To observers in the intensive care unit at Sutter Solano Medical Center in Vallejo, California, Russo would have looked peaceful, if deathly ill. Inside his head, though, Russo was anything but.

Over the course of 22 days, as doctors fought to save him from H1N1 influenza, Russo was stuck in nightmare after nightmare. He was in Boston in the 1800s, witnessing plague victims being burned alive. He was in Oz under an orange-gray sky, watching leaves blow over the yellow brick road and knowing the Wizard was coming to kill him. He was on a tropical island with Bruce Springsteen, preparing to be euthanized.

"I watched my son die twice," Russo said in a talk posted on YouTube. "I watched my daughter die four times. One time, I caused her death."

These nightmares were more than mere dreams. Years later, Russo chokes up talking about the specter of his children's deaths. Even after he woke from his coma, he said, he didn't know if his daughter was alive. And long after his body healed, he remembers his ICU nightmares as if they really happened.

"I can still see them," he said in his talk. "They still come back."

Russo is not alone in experiencing hospital treatment as traumatic. Delirium is a common experience in intensive care, where patients are near death and pumped full of powerful drugs to keep them sedated and out of pain. By some estimates, up to 64 percent of patients who survive the ICU come out of the experience with symptoms of post-traumatic stress disorder (PTSD).

"Just like our kidneys cannot function well, and our livers cannot function well when we're really sick, the same thing happens to the brain," said Joel Bienvenu, a psychiatrist and associate director of the Johns Hopkins Anxiety Disorders Clinic who has studied ICU-related PTSD.

Researchers are now looking at psychological interventions to help patients cope. But even just being aware that ICU delirium and trauma is normal — not a sign of brain damage or a symptom of a psychological breakdown — can be a lifeline for people dealing with post-hospitalization PTSD.

"There is something about knowing that I am not alone and it isn't my fault that makes a difference," one patient wrote on ICUdelirium.org, the website of a study group centered at Vanderbilt University. "For the first time in the past five years, I believe I have a future."

The trauma of care

Research going back years has found high rates of psychological distress in people who have spent time in intensive care. One 2007 review, published in the journal Intensive Care Medicine, examined earlier research on people who had been in the ICU for more than 24 hours. The researchers found wide variation in rates, ranging from between 0 percent and 64 percent of patients reporting PTSD depending on the study and whether symptoms were evaluated by a medical professional or self-reported. In 2011, Bienvenu and his colleagues published research in the journal Psychological Medicine that followed a group of survivors of acute respiratory distress syndrome, sort of a "prototypical critical illness," Bienvenu said.

Acute respiratory distress can have many causes, but the bottom line is that a patient with the condition doesn't get enough oxygen, even with a breathing tube. In Bienvenu's study, 66 of 186 survivors of the lung condition had PTSD symptoms at one year post-illness, a rate of 35 percent. Of those who developed PTSD, 62 percent still had symptoms two years after their physical illness.

"These are not necessarily transient symptoms," Bienvenu said.

By definition, patients in the ICU are near death, whether because of accidental injury, violence or illness. That's traumatic enough. But the life-saving interventions performed in the ICU can be horrifying to those going through them. Sedatives and painkillers leave people in a murky state of consciousness. Russo described knowing that he was in a hospital bed, fighting for his life, but feeling as if none of that mattered, because his nightmare world felt just as real. When he recovered enough to go home, he was terrified that he was still in one of his deliriums. He'd imagined that his wife had moved to a Swiss chalet during his hospitalization and that he was unable to live at such high elevation, so his wife put him in an apartment, alone, to watch his family pass him by as they went up and down the mountain to their chalet. Even as he settled back in at his house, he thought the normalcy might be a trap, and that his family would stick him in that lonely apartment at any minute. He kept his terror to himself, for fear of sounding crazy.

"You live with it," he said, "and you don't say anything."

Some patients don't experience terrifying nightmare scenarios in the ICU, Bienvenu said. Even when delirium strikes, it might bring harmless hallucinations, like dancing blue dots. Other patients, though, feel an overwhelming sense of fear and can't make sense of what doctors and nurses are doing to them.

"There are a lot of invasive procedures that are life-saving for critically ill patients, but they are not recalled as life-saving procedures, necessarily," Bienvenu said. "A Foley catheter, or a catheter placed to collect urine from the bladder, could be misinterpreted as sexual assault and remembered as sexual assault, because patients are not able to really process things the way they would normally."

Healing body and mind

Providing psychological care to a comatose patient fighting for his or her life is a tall order. But psychiatrists and psychologists are searching for ways to lessen the trauma once patients wake from the coma. In 2007, Careggi Teaching Hospital in Florence, Italy, launched a psychological service for ICU patients. At a cost of 30,000 Euros a year, the hospital keeps clinical psychologists on-call to support conscious ICU patients. The psychologists offer educational materials, counseling and stress management techniques; they also support family members while patients are sedated.

A 2011 study of this program found that about 21 percent of patients who'd had counseling support ended up with PTSD symptoms a year after hospitalization — a significant drop from the rate of 57 percent seen before the program was implemented. Patients were also significantly less likely to need psychiatric medications if they'd had counseling support in the ICU, at a rate of 8.1 percent versus 41.7 percent for patients who had not had psychological help at the time they woke up.

There are still questions about who can most benefit from this psychological help, and how to target services to do the most patients the most good. Bienvenu and his colleagues are looking at another type of intervention: ICU diaries. These diaries are records kept by doctors and nurses during the ICU experience, explaining daily treatments and how the patient responded. The hope is that by reading back over this record, patients and their families can begin to process what happened, Bienvenu said.

"Patients can look at that narrative and try to match their memories to that narrative," he said.

Keeping an ICU diary might subtly alter how healthcare providers think about their patients as they're treating them, Bienvenu added. Clinicians generally care about their patients as people, he said, but the priority in the ICU often comes down to keeping the person alive, not worrying about their experiences under sedation.

"If one is thinking about the patients and their family members' long-term mental health, not just their ability to walk [for example], it could have some beneficial effect," Bienvenu said.

Russo says he's grateful for the doctors and nurses who saved his life. He and his family even gave a large donation to the hospital after his physical recovery.

But for Russo, simply an acknowledgement that his mind may have gone to dark places during his fight for life would have helped in the days that followed, he said. If someone had come to his room and asked him where his mind had taken him during his illness, he would have opened up, he said.

"Without somebody acknowledging that they kind of know what you're going through, you're terrified. I was," Russo said. "If I say something, are they going to think I'm nuts? Are they going to send me somewhere? ... I think it would be very helpful for patients to start to talk about it sooner, rather than later."