An innovative diary system has helped reduce the incidence of post-intensive care syndrome (PICS) at a California health system. Nurses keep diaries during a patient’s stay in the ICU to help him or her avoid problems that can be caused by the patient’s memory being incomplete and sometimes confusing.
PICS affects patients after their discharge from the ICU with weakness, cognitive dysfunction, anxiety, depression, or post-traumatic stress disorder. It is common among patients who survive a critical illness and symptoms can persist long after they return home, with half of affected patients not returning to work in the first year. The symptoms also can affect family members.
Nurses in the University of California, San Diego (UC San Diego) Health system devised a strategy to identify and treat PICS early, hoping to increase patient satisfaction and increase post-ICU referrals.
The project came about when nurses started noticing that individuals would visit the ICU after a stay and be thankful, but remember little of their experience there, explains Giang Huynh, RN, BSN, CCRN, an assistant nurse manager at Jacobs Medical Center, part of the UC San Diego Health system. They did not remember the stress of being sick in the ICU, but they also did not remember the positive parts of the experience, such as milestones in the recovery process or support offered by family and staff.
Diaries Introduced to ICUs
Family members, on the other hand, often remembered the experience in much more detail but, understandably, their memories focused on the fear and stress of seeing a loved one so sick. They also had no way to document their support and encouragement.
Huynh worked to address the issue with Heather Gunter, RN, MSN, MBA, CCRN, an assistant nurse manager at Sulpizio Cardiovascular Center, also part of the UC San Diego Health system. Daniel Walls, RN, BSN, also worked on the project.
The health system offers a post-ICU clinic to help patients and family members deal with the lingering effects of an ICU stay, so increasing referrals to that clinic was a goal of the project, in addition to identifying and mitigating PICS.
The nursing team created a series of classes to educate staff about PICS, the use of ICU diaries, and the post-ICU clinic. The diaries were a new process added to the ICUs, with nurses and family members encouraged to write in each patient’s diary about clinical progress and milestones. (More information on ICU diaries is available online at: icu-diary.org.)
“Diaries have been shown to help reduce patients’ memory gaps and distorted thoughts regarding the ICU stay, which helps reduce the overall risk and effects of PICS. The diaries can help patients who were heavily sedated or comatose reconstruct the narrative of their illnesses, which can be important because it is disturbing to have a gap like that in your memory, especially when it involved a critical time in your life and recovery,” Huynh says. “The diaries also help family members cope with the stress of having a loved one in ICU.”
The nurses conducted ICU diary workshops in May 2016 and had a diary initiation kickoff party on June 1, 2016. The program had to be approved by administration, particularly risk management, which had concerns about what information would be entered in the diaries. The diaries must not contain clinical information that would be more appropriate in the medical record, or any information protected by privacy rules.
Referrals Increase After Diaries
There were no ICU referrals in the pre-diary period of February 2016 to the diary implementation on June 1, 2016, but there were nine referrals from that date to Jan. 1, 2017. That represents a projected 108 visits per year and $10,152 in revenue.
Each diary is a 45-page spiral-bound notebook with an easy-to-clean plastic cover and the title “Your Stay, Your Story.” The diaries start with a letter addressed to the patient, family members, and friends, and there is an instructional page exemplifying the type of information appropriate to include in the diary, recommending that all entries use language that is personal and meaningful to the patient, with care taken to maintain the patient’s dignity. The diary provides 30 pages for daily notes, along with diagrams and explanations of medical terms for the patient and family members.
To be eligible for the ICU diary program, patients must be in the ICU longer than 48 hours, speak English, and have a positive score using the Confusion Assessment Method for the ICU (CAM-ICU) or have a Richmond Agitation-Sedation Scale (RASS) of -2 or greater during the ICU stay.
Nurses Write Each Day
ICU nurses are expected to write in each patient’s diary daily, but other staff are encouraged to add notes as well.
“They write notes [that] are very non-medical, in layman’s terms. The first entry might say, ‘You’re in the hospital because your breathing became difficult and we had to put a tube in your throat to help you breathe. Your family members are at your bed side and holding your hand,’” Huynh says. “It’s not clinical information about intubation and hemoglobin levels. Most important is the message of caring, and the staff’s excitement for the patient reaching a milestone like getting a foot out of bed for the first time.”
One note recounted how the staff put a basketball hoop in a patient’s room and celebrated the first time he made a basket from his bed.
Family members can use the ICU diary to note their positive thoughts and encouragement, with children and grandchildren writing notes on Father’s Day and other holidays, for instance. Some families use the diary as a scrapbook, and include photos and children’s handprints.
“Some of our patients are here for months and months, and they can go through a couple of diaries,” Gunter says. “It helps fill in the gaps of things they missed when they were sedated, and it creates a timeline for them. But it also gives this message of caring, a record of how much support they had during this period even if they were sedated and didn’t know.”
- Giang Huynh, RN, BSN, CCRN, Assistant Nurse Manager, Jacobs Medical Center, University of California San Diego Health. Email: email@example.com.
- Heather Gunter, RN, MSN, MBA, CCRN, Assistant Nurse Manager, Sulpizio Cardiovascular Center, University of California San Diego Health. Email: firstname.lastname@example.org.