What is an ICU diary?

The intensive care unit (ICU) can be an overwhelming place, not just for patients, but for family, friends and visitors alike. Teams of doctors are constantly on call, monitors endlessly beep, and the whirring sound of machines doesn’t stop until a patient is discharged. With so much happening – and every second critical – it can sometimes be hard for patients and their families to know what’s going on around them.

This uncertainty, combined with the physical and emotional distress of being in the ICU, can sometimes cause patients to develop Post Traumatic Stress Disorder. This occurs after experiencing a traumatic event that inflicts serious physical or emotional harm. Not everyone who faces a traumatic event will experience PTSD, but according to the National Center for PTSD, seven or eight people out of 100 will experience this condition at some point in their lives.

“You can have all the symptoms of PTSD if you’ve been in the ICU for 48 hours or more,” says Dr. Amy Stewart, a trauma surgeon at Advocate Lutheran General Hospital in Park Ridge, Ill.

Symptoms of PTSD can include flashbacks, nightmares, trouble sleeping, startling easily, difficulty remembering key moments of the traumatic event and avoidance of thoughts, feelings, places, events or objects that remind someone of the traumatic event.

Stewart says trauma patients experiencing PTSD often become afraid of needles or hospitals without remembering what they don’t like about the hospital or why. Others have nightmares, panic attacks when they wake and don’t know where they are.

When trying to remember the ICU, “A lot of people remember feeling trapped or like they’re floating,” says Dr. Stewart. “Sometimes, they feel like they’re at work because of the machines beeping around them. They become frustrated when they can’t turn them off.”

Researchers, Dr. Stewart included, are beginning to look at ways to reduce PTSD in trauma patients. In Europe, the use of ICU diaries, journals that patients and their family members use to chronical a stay in the ICU, have proven effective. Through a grant from the Advocate Lutheran General Health Partners Endowment, Dr. Stewart brought the diaries to Lutheran General and is gathering data on their effectiveness.

The plastic journal is given to families upon arrival in the ICU. There’s a front pocket that stores the business cards of the care team and a page with instructions on how to use the diary. The diary is divided into two sections. The first section is private, filled with blank sheets of paper for families and patients to write about the ICU stay and how it makes them feel. The back part of the journal is used to communicate with everyone on a patient’s care team. Here, family members can leave questions for physicians and nurses, who can then communicate their responses when checking on the patient. Sometimes patients are rounded on while family is away or asleep and using the journal during these times keeps everyone in constant communication.

“The feedback from people in the ICU is that they see so many doctors that they don’t know what’s going on. Having a central place to write down questions, comments, or concerns to everyone on the team helps communication,” says Dr. Stewart. “Through the diary, families have a better grasp of the number of consultants involved in the case, what the plan is going to be and help them ask better questions.”

The diary also helps patients remember key moments of their stay, which can prevent symptoms of PTSD. Family members can use the front part of the journal to write down of what happens every day, such as today the doctor said it’s okay to remove the breathing tube. They also can use it to write letters to the patients to express their emotions of sadness, fear or happiness as the patient’s condition improves.

When the patient feels ready, family members can read the diary to them, or they can read it themselves. Reading about their experience helps them process their stay, which reduces symptoms of PTSD.

So far Dr. Stewart has collected a year’s worth of data on diary usage and is beginning to follow up with patients to see how using the journal helped prevent PTSD or helped them manage its symptoms. While the numbers aren’t in yet, Dr. Stewart has seen families respond well to the diaries.

“I have seen some families hold onto the diary with two hands,” says Dr. Stewart. “They grasp onto it like it is their lifeline.”