"So...this is the new normal."
Those were the words I heard recently from a survivor in the surgical/transplant intensive care unit (ICU) I work at in Emory University Hospital. It was National Nurses Week, and every day, there was another event to celebrate our nursing staff, who are the heart and soul of our ICU. The final day of celebration was to be both the most sobering and the most amazing.
A woman that we had taken care of a year and a half earlier had come back to speak to us. She had suffered acute hepatic failure and had spent over a month with us as a patient and now was returning to tell her story and answer questions from our staff. Each of us had taken care of her in the long days and weeks when she was ill. Yet, aside from conversations with her family, we had never seen her a healthy person. (Some, perhaps sadly, only saw her as "the acute hepatic" and not as a person at all.) Certainly, the vast majority of us had no idea what happened to her after she left the ICU. As always happens, there was another patient who needed our care, and our attention shifted elsewhere.
Yet this morning, during National Nurses Week, we all had the opportunity to pause, to hear directly from our former patient and to reflect on both the triumph and unrecognized downside of what we do. Prior to her hospitalization, she was generally healthy. She had a steady job. She went out with her friends. She had a loving significant other and loving parents. Suddenly, critical illness struck.
Thankfully, she remembers fairly little of her ICU course. Her loved ones remember her not waking up for days and the question about whether her cerebral edema was so severe that she might never wake up. Her loved ones also remember the amazing care she got from our entire staff, who were with her day and night. Her memories are, of course, quite different. Perhaps not unexpectedly, her memories of the ICU are hazy and somewhat disjointed. Some moments stand out clearly, some are vague and some never happened even though they felt real to her in an encephalopathic and delirious state.
Eventually, she was strong enough to leave the ICU. When she left the hospital, no one told her to expect life to be different, so she simply went back to work. And she rapidly found that she couldn't work full-time anymore. Mentally, concentrating for hours at a time simply wasn't possible. Even previously simple tasks took Herculean effort. Just thinking made her tired to the point that she would need to sleep for extended periods of time that she never had before. Fine motor skills had abandoned her. Even now, she cannot open a soda can on her own. Food tastes different. She is more emotional. And more than a year later, she has nightmares she cannot shake. There is, of course, tremendous richness in her life but it is not the same. She and her loved ones have adjusted to this new life, but, even as a "lucky" one who survived a brush with death, the reminders are everywhere that life is not what it used to be and may not ever fully be.
After hearing this amazing story, we started asking questions. In retrospect, what does she wish we had told her? "It doesn't end when you leave the ICU. And it won't end when you leave the hospital. You suffered a major injury, and it will take a long time to continue your healing.” Did she know that others had similar issues to her? "No.” Had she ever heard of post-intensive care syndrome (PICS)? "No." Would it have helped to know this? "Absolutely." Would a support group of others going through similar issues be helpful? "Yes!"
I have previously written about SCCM's new THRIVE Initiative in this space. While we have done a remarkable job taking care of the patient in the bed in front of us, we have frequently not recognized what happens to the person lying in that bed when they are no longer our patient. But that is changing. With our new attention to PICS, new research into PICS, and new support groups for PICS, we hope to transform the post-ICU experience. One day, I hope we will understand enough about the causes of PICS that we can prevent it totally. Until that day, our THRIVE Initiative is intended for those who have "a new normal," so that they know they are not alone. So that they know that together, we can create a better tomorrow for those who survive the ICU.