Life Life Rare

Hello, I'm Stephen Smith and today we're going to talk about how family is really the best medicine when you're in ICU. I can still see the images today. The noise was unnerving. The banging and the clanging reverberated throughout the dark halls of Trinity Medical Center in Birmingham, Alabama. This is where I'd been an ICU patient for weeks. It was early 2015, and from my bed, I caught glimpses of maintenance crews breaking down the nursing stations, loading panels of equipment on the long, flat carts, and wheeling everything into freight elevators. My mind raced with questions. "Where are they taking everything?" "Will they bring it all back before the morning shift?" And most alarming of all, "Will they remember that I'm here? Or will I be left behind with no one to check on me throughout the night?"

Well, of course, all this commotion, as if they were striking a stage production or something, it was, it was only happening in my mind. And although it'd be several months before I had words and context to understand it, I was suffering from ICU Delirium, fostered by a combination of factors such as sedation, immobility, and isolation. In Tennessee, the Vanderbilt University Medical Center, they have a Critical Illness, Brain Dysfunction, and Survivorship Center. And it focuses on advancing knowledge, education, and models for care for people affected by critical illness. Among the work the center does is the ABCDEF bundle, or the A to F bundle. This bundle is a framework for aligning and coordinating care for critically ill patients. Each letter represents an area of focus, with the F standing for family engagement and empowerment.

If you go to the CIBS center website, it explains it this way. "Good communication with the family is critical at every step of a patient's clinical course. And empowering the family to be part of the team, to ensure best care is adhered to diligently,will improve many aspects of the patient's experience. The F was recently added to keep patients and family as the center and focus of this care." Looking back, my ICU experiences in 2015 served as a study of the various approaches to family engagement. After a few weeks at Trinity Medical Center, I was transferred to the University of Alabama at Birmingham, UAB, Medical Center, where the visitation rules were considerably different. At Trinity, family visitation was restricted to four time slots per day, each one only lasting 30 minutes. This schedule was strictly enforced, except for the occasional nurse who would smile at my wife, Michele, and tell her she could stay a few extra minutes. This schedule created a sometimes dramatic emotional cycle for me with anticipation and excitement then relief, then anxiety, and then depression rotating throughout the day. Those 30-minute periods were blessings and curses, bringing joy at seeing my wife and sometimes other family members, then ending with a crash of loneliness and longing for the next visitation.

I'm sure at some point in the progression of medical protocols that there were many good reasons laid out for limiting family visitation. I mean, among them was likely a concern that visitors would somehow interfere with the health care provider's work of taking care of the patient. After all, ICU patients are critically ill, and the medical team needs to focus on caring for them uninterrupted, right? Well, in my experience, an assortment of monitors did a good bit of the work, and I was not surrounded by nurses and doctors around the clock. With all the time I spent alone in Trinity's ICU, there was no reason for such a restrictive visitation schedule. We were quite surprised when I was transferred to UAB. We were told that Michele could stay in the room with me around the clock. The only exception was a 30-minute window during shift change, when they asked that she go to the waiting room. And in subsequent ICU visits, we've learned that even that restriction has been lifted.

Did this change make a difference in my condition and recovery? Absolutely it did. Michele's presence grounded me, providing a point of reference that I could hold on to when my mind tried to create realities of its own. Now, there were likely other factors, including the approach to sedation and mobility, but I'm convinced that the greatest impact came from having my wife by my side. Not only did this ground me in reality, but it also took away the helplessness I felt knowing that she was having to navigate the details of this experience without my help. Did she have somewhere safe and comfortable to rest and stay? Did she have convenient access to food? How was she managing to keep clean clothes and necessary supplies across this extended stay? These sources of anxiety disappeared when she was sharing the ICU room with me.

And just imagine what this did for her. She was there when various doctors made their rounds, stayed better informed about my condition and plan of care, and felt comfortable knowing that she was nearby to help with any small needs that might go unmet in that more restrictive environment. During the spring and summer of this year, I've experienced three separate ICU visits at UAB, totaling 32 days. I was intubated during one of those stays, spending four days on a ventilator to help overcome a myasthenic crisis. Not once during those days did I lose touch with reality. And while I know several factors contributed to avoiding delirium, I credit much of it to having a familiar voice, a friendly face, and the presence of my life partner and best friend there by my side throughout the ordeal.

F may be the last and newest letter added to the A to F bundle, but it may well be the most powerful. I really hope more medical centers adopt this approach to family engagement and empowerment. It not only makes a difference while the patients are in ICU, but it can have a lasting impact on the health of the patient for months and years to come. If you're enjoying the Live Life Rare podcast, please subscribe to its companion newsletter at liveliferare.com. Thanks for joining us on this journey to discover and pursue what a rare life means to us all.