I had been assisting another therapist with a treatment session on the other side of the medical ICU when one of our unit clerks peaked her head into the room. “Kyle, I know you’re busy, but we need you out here.” Naturally, my mind begins listing every possible worst case scenario as if I’m about to walk into a corridor of unimaginable horror. “There’s someone here to see you.”
She was dressed nice and looked younger than her age. Her hair was full and well done. She was thin, but muscular. Very healthy looking actually. Walking, standing, talking, and smiling. Her face appeared eerily familiar, as if from a dream, but I immediately recognized her husband. Their names, initially escaped me, as names usually do. Her smile though, that I had seen before.
“I’m back for a one year follow up appointment.”
I couldn’t recall the details of her case, but I remembered she was in the MICU for a long time. She offered up that she herself remembered nothing from her ICU stay. Not uncommon, of course, but still a shock to hear directly. Especially as someone who spent, well resided really, in the ICU for over 6 weeks requiring prolonged mechanical ventilation. “Did I stand up while I was here?” Her husband, recalling more details than I, “Kyle held you up honey, your arms were around his neck. He basically lifted you into a chair.” At that time, she was maybe 90 pounds. She could stand for less than 2 minutes with maximum assistance and was unable to march, take steps, or ambulate.
To the casual observer her physical function was now normal, if not better. Well placed wrinkles covered a tracheostomy scar, and she moved without obvious, or discernable deviation. She reported she had been reviewing her medical record. “I was scared at first, because I had no memories of the ICU. But, also no nightmares. My doctor said that was rare.”
“I still get tired.”
“You know sometimes I go go in the morning and I just need to rest some.” Her husband chimed in “she tries to do it all you know.” She talked about the challenge of lifting her grandson “he’s a little chunk. And, he’s over a year so I need to get stronger to keep up with him.” Every limitation augmented by a goal.
In reflection, what was most unique about the case, beside her remarkable outcome in the face of a guarded prognosis, was the attitude and perspective of both the patient and her husband. Constantly positive, but realistic. Engaged, and focusing on the tasks to be done, what was improving and what could be controlled. Her husband, I recalled, was always hopeful, yes, but not blindly optimistic. Not every patient outcome turns out like this one. In fact, most do not. Exceeding the realistic range of possible prognoses involves the interplay of complex medical, physiologic, physical, environmental, psychological, and social factors. And, I’m a vocal advocate of clinicians focusing on the right process, and not validating their approach post hoc based on observed positive outcomes.
Despite this, it still feels good to encounter a success story. It’s touching of course and it’s motivating. As I shared with her, these patient stories, even the simple ones, “keep us going.” The patient and the husband exuded appreciation and satisfaction; his memory of people, names, events was remarkable. Flattered at the perceived impact, I couldn’t help but feel some guilt percolating under my pride. We should’ve done more, we could’ve started earlier, was I attentive enough to psychological issues? Did I “push” her enough physically?
But, it appears that this woman likely was to progress, to be “better” with, or honestly, without me. Her husband’s constant, but empowering support combined with her positive, focused attitude were the foundation for an outcome a few standard deviations or so from the norm. Not that I feel what I did, my role was insignificant. All I can hope is that I was a small part of nudging the momentum in the right direction. Or, at the very least, not a hindrance, an inhibition to her journey. I’m reminded of the often referenced idea that it’s not what you do, or necessarily even the outcome, but what the person experiences, their feelings that affect how they perceive events upon reflection. People don’t care what you do per se, they care about how you make them feel.
“I tried to get out of bed on my own at rehab. They got mad at me for that because, I fell.”
“She melted to the ground before 1 step.”
“I was trying to get out of bed to the bathroom.” She felt guilty and a burden ringing the call light then waiting for assistance. Especially the times when her ability to control her body were not as she would desire. “I felt so bad, I didn’t want to wet the bed.” Despite being unfortunate, my sense is the feelings she expressed are not uncommon amongst previously independent, newly debilitated patients. Her guilt and feeling of burden could break your heart. Are there means of improving our interactions to decrease this perception? Or, is this guilt, this desire to not be dependent upon others potentially a motivating factor; a goal in it’s own right?
One should never underestimate the power of a patient story. Clinicians of all professions and settings harbor them. Stories of loss, unfortunate outcomes, horrible situations, triumphs, system failure, lack of resources, personal failure, professional limitations, outcomes that defy explanation, and unimaginable bad luck. These plots impact us, because they force us to confront the longer term, the personal narrative and the very real and human enterprise of health care. And, after all we are human too. The illustration of one individual’s unique journey and the construction of a patient’s personal story, their illness narrative, is a vital part of coping, confronting, and rectifying experiences. It’s assigning meaning. These stories likely can assist other patients. And, maybe, they can assist clinicians by highlighting the potential power of our interactions. Our words, our demeanor, our interface with each unique psyche is an intervention.
It’s easy to forget the impact of clinicians on a patient, or even a family member. Fleeting and brief, even the unforgotten moments, the words we can’t recall, may be etched in stone within our patient’s nervous system. A memory, good or bad, helpful or harmful, that persists long afterwards. But, let us not be so naive to think the impact is unidirectional. At times we may forget names, or details, but the themes stay with us. Unscripted and subconscious lessons forged through the cognitively unseen process of emotion. Our personal experiences within this professional realm can simultaneously, and paradoxically, taint our future perspectives and motivate thoughtful change.