Mr. P. was 40 years old and healthy, but he developed a cough with fever, chills, painful breathing, and eventual shortness of breath. He went to the emergency room, where he was diagnosed with pneumonia and prescribed oral antibiotics. However, the next day, his breathing became more labored, and his wife drove him back to the emergency room. The doctors told him he was having to work too hard to get enough oxygen. They sedated him, and the room filled with doctors and nurses.

Everything was blurry, and he thought he was being experimented upon by sadists.

(Though he didn’t know it, he was in an intensive care unit, and the clinicians were saving his life.)

They had him strapped down and assaulted him both physically and sexually.

He saw his spouse, who he thought was in cahoots with the sadists, and he realized he was all alone, betrayed. Children with animal heads floated by.

He woke up in an ICU. His throat hurt, and he felt weak. The clinicians explained that he’d had a severe illness called acute respiratory distress syndrome (ARDS). He asked his wife what had really happened. That is, he remembered being raped, tortured, and abandoned. His wife was confused and upset by his statements. He gradually got stronger with physical therapy and was able to return home. However, memories of the nightmare he’d experienced intruded into his consciousness, and he felt vulnerable. What he remembered seemed so real, but he was reluctant to talk about it because he didn’t want to seem "crazy."

He didn’t want to visit with well-wishers who came to see him. He worried about cleanliness, since the doctors had said that an infection led to his critical illness; he washed constantly. He felt like he’d had 10 cups of coffee, even though he’d had none. It was almost impossible to sleep.

In recent years, critical care specialists have begun focusing on their patients’ longer-term outcomes – that is, beyond ICU survival. Unfortunately, ICU survivors are very often weak, cognitively impaired, and distressed by their experiences (which are often distorted by delirium). Importantly, the psychic distress (symptoms of depression and anxiety/posttraumatic stress) can be long lasting.

Imagine what critically ill patients face, physically and psychologically, in ICUs: respiratory insufficiency, painful procedures, systemic inflammation (with breakdown of the blood-brain barrier), activation of the hypothalamic-pituitary-adrenal axis (with reduced adrenocortical responsiveness), high levels of endogenous and exogenous catecholamines to maintain blood pressure, and delirium with associated psychotic experiences – all in the context of reduced autonomy and a limited ability to communicate. Critical illnesses are life threatening by definition, and critically ill patients often are unable to assimilate what is happening to them, and delirious from organ failure and sedative medications. Memories of their frightening experiences are distorted (for example, placement of a Foley catheter might be interpreted and remembered as rape).

Though this is a young field, and most clinicians don’t know much about it, researchers have begun examining ways to prevent adverse long-term outcomes in ICU survivors. For example, in the United Kingdom and Europe, nurses in ICU follow-up clinics make recommendations for recovery as needed. Such clinics have not been shown to improve long-term outcomes, but this might be partly attributable to the lack of familiarity that most clinicians, including mental health providers, have about the experiences of ICU survivors.

For example, if a psychiatrist receives a referral of a patient who has vivid but incorrect memories of being tortured and doesn’t know how to interpret this and reframe it for the patient (for example, as perceptual disturbances in the context of delirium), he might not develop an effective therapeutic relationship with that patient.

One promising recent trial led by Christina Jones, Ph.D., a psychologist and critical care nurse, investigated the utility of ICU diaries. An ICU diary includes photographs of the patient during his/her critical illness, with accompanying plain-language text noting developments on particular days (both nurses and family members contribute to the text).

Dr. Jones, who is affiliated with Whiston Hospital, Prescot, U.K., and her colleagues provided a group of patients ICU diaries 1 month after hospital discharge, and those patients had substantially fewer posttraumatic stress disorder (PTSD) symptoms at later follow-up, compared with a control group. Presumably, patients (and their family members) were able to process their experiences more effectively with the diaries (Crit. Care 2010;14:R168 and Am. J. Crit. Care 2012;21:172-6).

The investigators found that the incidence of new PTSD cases was reduced among patients who were provided diaries, compared with the control group. Presumably, patients and family members were able to process their experiences more effectively with the diaries.

Survivors of intensive care experiences need ways to make sense of their illnesses. ICU diaries are a way for these patients and their families to develop a narrative that truly reflects their experiences.

DR. BIENVENU is with the department of psychiatry and behavioral sciences at Johns Hopkins University, Baltimore.

ICU Diaries Can Help Patients Process Critical Illness