Keeping a record of convalescence following a serious injury or disease can serve as an important step in recovery

By Cathi Douglas     9/6/2017

For many, if not the majority of patients, discharge from a stay of more than three days in an intensive care unit (ICU) is only the beginning of the healing process. What surprises most people is that recovery isn’t limited to the condition that led to the ICU stay. The medical community is beginning to address a severe and often debilitating psychological condition that is fairly common among former ICU patients. Confusion, delusions, hallucinations and memory loss can add a layer of anxiety to the challenges of physical recovery. 

For these patients, piecing together what happened in the days or weeks in the ICU can be difficult. Some patients have large gaps in memory while others experience delusions or hallucinations that can be frightening. While recovering physically, the patient sometimes has difficulty piecing together the facts. Known as Post Intensive Care Syndrome (PICS), the condition has been gaining the attention of medical professionals. 

RN Mary Kay Bader, Neuro Critical Care Nurse specialist at Mission Hospital, is part of a team that has studied the latest research on PCIS from Europe, which has been at the forefront of treatment. “We have long observed that patients after a long illness have a series of symptoms such as weakness, delusional memories and emotional problems that aren’t directly related to the medical condition that brought them to ICU,” Bader says. A condition that arises as a consequence of a previous disease or injury is known as a sequela. “Mission Hospital assembled a team of specialists who spent the past year looking at all the research and tools to address this issue to improve patient outcomes.” 

One of the most interesting and efficacious tools has been an ICU diary. According to a recent article in the Journal of Patient Experience, an ICU diary can “minimize the psychological and emotional sequelae affecting patients and family members in the months following the ICU stay.” As the name implies, the diary is a layman’s chronicle of what happened in the ICU, which is written by both the medical staff, and visitors. It does not fall under HIPPA guidelines as it is not the medical records but rather a chronicle of the experiences, conversations, and activity of a patient during the stay. The patient takes the diary home with them when they leave, and over time it helps them piece together what happened, and also what they missed in the outside world. 

“As an example, we had a young man who was on a ventilator, but not comatose. He swore there was a witch circling over his bed,” Bader says. “The vision was so real that after recovery he was compelled to revisit his room and discovered that there was a tree painted on the ceiling of his room.” In severe cases patients with PICS can become fearful of the world, avoid activities because they don’t understand what is happening. 

How does it work? Beginning October 1, Mission Hospital will be one of the first in the nation to introduce ICU diaries for patients who spend more than a few days in intensive care. The diaries are the patient’s property, and are hand written with no medical information included. Family participation is a very important part of the journaling effort. Medical staff explains the purpose of the diary, and then encourage families to contribute, beginning with an “all about me” section that gives staff information about the patient such as their interests, hobbies, sports teams and work. Even if the patient is comatose, families are encouraged to write family news and events, major news or sports stories that the patient can read while in recovery. This gives the patient a better sense of what happened and helps them put together their lives, especially if the hospital stay was long. 

According to Bader and the Mission team, “Having your life saved is a traumatic event, we are hoping that the diaries will mean the outcome for patients will mean greater quality of life after ICU. The diaries may mean less long-term stress, nightmares and better emotional healing.”