Is family the best ICU medicine?
How the presence of family helped me fight ICU delirium and forge a stronger recovery
The noise was unnerving. The banging and clanging reverberated through the dark halls of Trinity Medical Center in Birmingham, where I’d been an ICU patient for weeks. From my bed, I caught glimpses of maintenance crews breaking down the nurses' station, loading panels and equipment onto 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 through the night?”
Of course, all this commotion, as if striking a stage production, was only happening in my mind. Although it would 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.
The Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center at Vanderbilt University Medical Center focuses on advancing “knowledge, education, and models of care for people affected by critical illness.” Among its work is the ABCDEF (or A2F) Bundle, a framework for aligning and coordinating care for critically ill patients. Each letter represents an area of focus. “F” stands for “Family Engagement and Empowerment.”
The CIBS Center website 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 help to keep patients and families as the center and focus of 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 timeslots per day, each lasting 30 minutes. This schedule was strictly enforced, except for the occasional nurse who would smile at Michele and tell her she could stay a few extra minutes. This schedule created a sometimes dramatic emotional cycle for me, with anticipation, excitement, relief, anxiety, and 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 there were many good reasons laid out for limiting family visitation. Among them was likely a concern that visitors would somehow interfere with the health care providers’ work of taking care of the patient. After all, an ICU patient is critically ill, and the medical team needs to focus on caring for them uninterrupted.
In my experience, however, 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 and 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. (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 I could hold onto when my mind tried to create realities of its own. 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 she was having to navigate the details of this experience without my help. Did she have somewhere safe and comfortable to stay and rest? 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 she was nearby to help with any small need that might go unmet in the more restrictive environment.
In the past four months, I’ve experienced three separate ICU visits at UAB. I was intubated during one of those stays, spending four days on a ventilator to help overcome a myasthenic crisis. Not once during these stays did I lose touch with reality. 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 A2F Bundle, but it may well be the most powerful. I hope more medical centers adopt this approach to family engagement and empowerment. It not only makes a difference while the patient is in ICU, but it can have a lasting impact on the health of the patient for months and years to come.
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Question? Thoughts? Please share in the comments!
I appreciate you sharing your experience during what was undoubtedly a difficult time. I agree - having family with you during challenging health moments can make all the difference.