By Christina Bucciere

At just 37 years old, David Jones keeps an advanced healthcare directive in his briefcase at all times.

Should he be admitted to the intensive care unit, or ICU, again the Chicago legal executive wants to make sure his life support choices are known.

After surviving a near-fatal case of pancreatitis and multiple organ failure in 2012, causing turmoil and confusion, certainty and planning are more important to him than ever.

During his month in the Northwestern Medicine ICU, Jones experienced delusions about what was happening to him, a result of pain medication and a blistering fever. The 105-degree fever translated as actual fire, and the ventilator coaxing his lungs to breathe felt like violent strangulation.

Jones still fears a similar illness will happen again and he wants to be certain his wife and family know under what conditions he will or will not go through ICU life support again.

Jones stresses that the ICU staff saved his life, but he says he was depressed after leaving. He had flashbacks to the delusions and felt cognitively impaired.

He never knew an ICU stay could affect his mental health, he said, and he never thought to ask. He pursued his own research and visited a psychologist who officially diagnosed him with post-traumatic stress disorder,  or PTSD.

The risk of PTSD for ICU survivors is as high as for combat veterans, said Ann Parker, a fellow in pulmonary and critical care medicine at the Johns Hopkins Hospital in Baltimore.

Nearly one quarter of patients who survive a critical illness and a stay in the ICU experience PTSD.  And, at one year after discharge, one in five patients continue to feel PTSD symptoms, according to research Parker and her co-authors published this month in the journal Critical Care Medicine.

More than 5 million people are admitted to ICUs annually in the U.S., most with a critical illnesses, according to the Society of Critical Care Medicine.

Using something as simple as a diary to chronicle the ICU experience is a prevention tool, researchers also determined.

Many people don’t think a critical illness or a stay in the ICU can be traumatic, but both can be, Chicago experts say.

“Some of the psychological components of being critically ill could be similar to violence,” said Dr. Jesse Hall, professor of medicine and anesthesia & critical care at the University of Chicago. “Your body is invaded, and it’s a harsh environment that you’re in.”

The Johns Hopkins researchers reviewed 40 studies with 36 patient groups, surveying more than 3,000 patients who survived a critical illness and an ICU stay. A critical illness could be anything from respiratory failure to sepsis or an illness that requires life support.

They excluded patients who had suffered a trauma, such as a car crash or brain injury, because those patients’ injuries could affect their cognitive abilities rather than the illness or ICU experience.

And while it’s difficult to compartmentalize the exact origin of the PTSD—whether it comes from the illness, the ICU environment or otherwise—many ICU survivors do face PTSD symptoms upon leaving the hospital.

Many survivors may not meet the criteria for a formal diagnosis, but the symptoms can be treated, said James Jackson, a psychologist and principal investigator at Vanderbilt University’s ICU Delirium and Cognitive Impairment Study Group.

Once patients leave the ICU, their PTSD symptoms can cause haunting fears, such as fear of impending death, anxiety, depression, and flashbacks. The symptoms can range in severity as well, experts say.

The flashbacks can be even more problematic if they are referencing delusions a patient had while hospitalized, such as mistaking the insertion of a catheter as a sexual assault, Jackson said.

But the high prevalence of PTSD in ICU survivors can be predicted­—and possibly averted—because it is most common among people who share similar traits before entering the hospital.

The path to PTSD

The Johns Hopkins researchers determined three pre-existing risk factors that can increase the chance of experiencing PTSD: a history of anxiety or depression, heavy sedation while in the ICU and recalling frightening memories about the ICU stay after leaving.

Another risk factor for developing PTSD is youth, Jackson says.

“For people who are younger, this experience is much more traumatic because it’s much more abnormal,” Jackson says. “Mentally, they have not been prepared for this moment.”

Because sedation is a risk factor, the study’s findings are useful in showing that keeping patients completely sedated to avoid experiencing the ICU’s often-frightening atmosphere isn’t necessary. With less sedation, they are no more likely to acquire PTSD, Parker said.

This bolsters the importance of studies showing that patients who are awake and can participate in their ICU care have better physical outcomes after leaving the hospital, Parker said.

This is the reason the ICU staff at the University of Chicago Medicine tries to wake patients up for a few hours each day, if possible, to assess their capacity to breathe on their own and evaluate their need for sedatives.

Based on Hall’s 2002 research, having no memory of a period of a person’s life because they’re sedated, even if that period is experiencing a critical illness, can be unsettling.

Tiffany Taft, a clinical psychologist and research faculty member at Northwestern University, said when it comes to healing after a traumatic event, ignorance about what happened to you is not always bliss.

“When you’re dealing with a traumatic experience, sometimes some people will go to the dark side, if you will, the worst case scenarios,” Taft said. “They may be overly negative in how they’re filling in those holes. Some people don’t do well with uncertainty.”

People who have a history of anxiety, especially, may be prone to fill in the gaps with anxiety-provoking material, which can cause PTSD symptoms, Taft said.

PTSD after critical illness and an ICU stay can also affect a patient’s family. The risk factors and symptoms can be the same, especially regarding the patient’s age, Jackson said. It’s easier to digest losing an aging parent than a child who has barely lived.

A common family dynamic is when a family member is strong throughout the process and doesn’t present any PTSD symptoms until much later when the intensity has died down, Jackson said.

And while the concept of PTSD in ICU patients is well-described, the next challenge is learning how to prevent it, Jackson said.

Prevention through diaries

After analyzing the studies, the Johns Hopkins researchers also found that keeping an ICU diary is an effective way to prevent the onset of PTSD.

Keeping a diary, where nurses, friends or families chronicle a patient’s  experience while in the unit, is a common practice in much of Europe, but rare in the U.S.

PTSD symptoms evident at one month after discharge from the ICU were significantly reduced after three months if the patient had a diary, said Dr. Christina Jones of the University of Liverpool. She is a co-founder of ICU-diary.org, an informational site for healthcare professionals, and has studied ICU care for more than 20 years.

Jones said many European hospitals supply diaries to patients staying in the ICU for three days or more.

The diary should contain an entry describing the patient’s admission to the hospital, how they became sick and an entry for each day in the unit.  A photograph should also be taken at the start of the diary and at any significant points of change, such as when the patient becomes mobile again, Jones said.

Nurses and family are the main contributors to the diaries, although patients, if they are able, can contribute if they choose, Jones said.

The families are asked to write about what is happening at home, their daily lives and anything of interest to the patient’s normal life. The nurses write about the patient’s condition in non-medical language and their observations of the patient while in the unit, Jones said.

Peter Nydahl, a certified critical care nurse at the University Hospital of Schleswig-Holstein in Germany and member of the ICU-diary.org network, said he writes ICU diaries for patients regularly and they are most useful when written in a narrative format, including descriptions of sights and sounds.

“The idea is to tell the patient his story so that he can regain his own story and his development of becoming healed,” Nydahl said.

The Johns Hopkins Hospital ICU will begin using diaries soon, said Dr. Joe Bienvenu, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine.

Nurses will write daily entries, and other clinicians and family members will be encouraged to write as well, he said.

The diary is one form of preventive treatment for the onset of PTSD, but Taft says having a psychologist visit the patient while in the hospital if the patient is willing to talk can help.

“We become so focused on the medical aspects, fixing the physical, that the mental gets pushed aside, and I understand that, but I think we can intervene much earlier than we do,” Taft said.

Post-ICU treatment for PTSD is largely the same as treatment for trauma commonly associated with PTSD. This usually involves retelling the story repeatedly so as not to allow the patient to avoid the trauma, Taft said.

But once PTSD in ICU survivors is better understood, physicians could find ways to tailor the treatment to better fit the patients’ symptoms, Jackson said.

Where most people who experience PTSD focus on past events, Jackson said ICU survivors focus on both past and future events, such as worrying about re-emerging health complications that will force them back into the ICU.

Knowing how to treat PTSD in ICU survivors, however, requires more research and more resources, Jackson said.

Currently, there are only two post-ICU recovery centers in the U.S., one at Vanderbilt University Medical Center and the other at Eskenazi Health in Indiana.

“What people don’t appreciate is this idea that medical events can be traumatic, too, and drive the development of PTSD,” Jackson said. “There’s a broad recognition now in the psychological community that that can be the case.”

And Jones, whose PTSD symptoms have largely subsided aside from occasional flashbacks, says he wants others to be aware not only of ICU delirium, but of the potential for its lasting effects post-discharge.

“Just as we discharge someone from surgery saying to look for redness around the area, discharge ICU patients to look for disturbing thoughts or behaviors that you didn’t have before, and then have a resource.”