Category: Empowered Patients

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.

Some people utterly despise going to the dentist. I get it. The face and mouth are a locus of sensory innervation, and a dentist’s tools don’t exactly exude comfort. The grinding, the drilling, the scraping. Someone else’s hands in your mouth. Bleeding gums. Mouth held open, saliva building up, and plaque flying like saw dust in a wood working shop. Me? I actually enjoy it. At least the cleanings. The feeling of having my teeth scraped clean and polished is somehow satisfying. Afterwards, my mouth feels great. I’d go to the dentist every week, if I could. Recently, my dentist told me I needed a filling replaced. The current one was worn out, discolored, and not as smooth as the dentist desired. I’ll spare you the details. She informed me it would likely take less than 30 minutes. Not a problem I thought. So, I made the appointment.

Two days later, I sat into the customary recliner chair. A partner of my usual dentist would be performing the procedure. “Simple” he said. “I just need to numb that tooth and surrounding area and then we’ll get this done and get you out of here.” I panned to my right to see the syringe and needle.

And, that’s when things got interesting…

As a child, most (see almost all) of my baby teeth required extraction. Those experiences were not pleasant. In fact, quite the opposite. With merely a local anesthetic, I would pin my eyelids shut so as not to view the medieval metallic torture tools required to unroot the stubborn (and might I add inappropriately named) “baby” teeth. Not that I needed to see. The sensory experience of pressure, pulling, and vibration combined with the sounds of the tools upheaving teeth from my gums provided more than enough information for my young nervous system to make a judgement of the situation. This sucked. Plus, as I took my position into the torture victim’s dentist’s chair I didn’t miss eying the tools purposefully arranged in an evenly spaced row of exponentially increasing painful possibilities. At least so they seemed. The imagination may be the most frightening tool. I shuddered just looking at them.

My memories of those extractions are fractured, cloudy, and likely a bit inaccurate.

The build up was always horrible. I dreaded the waiting, the anticipation. Subsequently, I continually reassured myself as I received shots of numbing medicine. Shots in the cheek, the gums, and worst of all, the roof of my mouth. Those ones always hurt, that I did remember. I feared the procedure itself. It’s hard to express what in particular was so frightening.. Likely a combination of the unknown, the possibility of pain during (and after), and just the unsettling experience itself. It’s hard to recall the exact content of my self talk and inner experiences. Although, it felt like some type of duel or argument within me. It’s as if I had multiple inner agents all vying for control of reality. A teeter totter between feelings, assessments, and projections of the possibilities. I attempted to balance “being tough” with the acceptance of the reality regarding the horrible nature of the experience. Imagine someone grabbing you by the tooth with a pair of plyers and shaking your jaw about as if to scramble the contents of your skull.

In regards to both quality and intensity, I honestly can’t remember any pain. I do recall pain with pre-procedure shots in the gums and the roof of the mouth. But, no real details, no illustrative adjectives. I also remember a soreness and difficulty eating after the procedures. My most vivid memories are the experience and associated feelings of sitting in the chair prior to and during extraction. By far, the build up was worse than the actual event. I’m unsure how much explanation I received prior, whether distraction was helpful, or how my dentist even acted. But, I  vividly remember how odd the feeling of a numb mouth and cheeks. I couldn’t spit accurately into a sink for hours afterwards. But, boy could I ever drool down my chin and onto my shirt. The sensation of no sensation always amazed me. My cheeks felt as big as balloons.

Oddly, I’m not afraid of needles. When I have blood drawn or receive a TB test I actually watch the needle being inserted. It’s interesting to me, sensorily, visually, and cognitively. Although, on this day, settling in for a routine filling repair, the dentist informed me I needed to receive a shot of local anesthetic…I felt a rush of not just memories, but palpable states, from my childhood. My body tensed, my respiratory rate elevated. I’m sure my heart raced, and my mind immediately went into a manic panic. I was actually frightened. I tried self-talk, deep breathing, and cognitive re-assurance. These were mildly helpful initially.

Instantly, all the fears, feelings, and thoughts surrounding those previous experiences engulfed me. The intensity lasted but a few minutes. But, I definitely wasn’t comfortable. And, I definitely couldn’t escape. I wanted to ask if he was going to inject my gums or the roof of my mouth (I sure hoped not!). He grabbed my lip and cheek. “I’m gonna shake this for a bit then give you a few small injections around that tooth.” Surprisingly, they didn’t hurt at all. The dentist’s demeanor was friendly, calm, and reassuring. Not too upbeat, not too distant, not too involved in my experience, but present. He instructed me to signal to him if I was having any sensation during the procedure. Even in the moment, I was struck by simple behaviors that likely could be helpful to many patients. Explaining details. Laying out expectations and potential time frames. Gently probing for concerns. Allowing for expression. Listening. Despite his gesture of support, again, a sense of dread ballooned from stomach to throat. One of my extractions as a kid began prematurely without enough anesthetic. The sensation of cold steel gripping your teeth and gums followed swiftly by a downward tug will definitely make you appreciate the necessity of blocking afferent sensory information. But, none the less, I appreciated this dentist’s presence.

The filling removal and replacement proceeded smoothly. Sporadically, but briefly, feelings of anxiety or nervousness would creep into my chest. It wasn’t acutely distressing as much as interesting. I found it a challenge to balance experiencing those feelings, attempting to control them (futile), and analyzing them. Oddly, what affected me most profoundly were not the sensations or experience itself, but rather thoughts of my previous dental disasters and the unknown of upcoming future moments. Recently, Jason Silvernail, DPT, DSc, FAAOMPT stated:

If you’re in healthcare you should periodically be afflicted with something you provide care for. Just enough to keep you humble and patient focused. It’s done wonders for how I behave in the clinic over time.

Even though I am not a dentist, I reflect on my recent experience and am inclined to agree with Jason’s assertion. My experience, my “symptoms” were not a product of the pathology (failing filling) per se nor even specifically related to the procedure (filling replacement). This specific individual experience resulted from my personal past colliding with current events. I’m not convinced any specific intervention would have altered my experience. Although, in retrospect, I’d desire a more detailed explanation of the procedure. What locations would the anesthetic be injected? (Please don’t inject the roof of my mouth!) How many times? How much of my mouth would be numb? Straight forward and detailed (but not too detailed) information may have eased my feelings of unrest. Or, maybe they wouldn’t. I don’t know.

What can we glean from these personal events? Obviously, there are limits to what our first person experiences and observations can illustrate. Despite our intimate knowledge of health care, symptoms, physiology, and hopefully psychology, we may actually be prone to under appreciate the cloud of uncertainty and confusion swirling in a typical patient’s head when faced with common healthcare encounters, symptoms, and procedures. But, what insights do they provide about the patient in pain or distress? Those suffering with chronic pain or disability? The patient facing the unknown during a hospitalization? An individual awaiting a procedure? Those recovering from a surgery? Attempting to return to sport? Dealing with the trauma of an ICU stay?

Philosophers and scientists studying human consciousness continue to debate the role of first person experience in creating a framework and understanding of consciousness.

Each patient we see has a lifetime worth of memories that are going to color their experience on your treatment table. –Kenny Venere, PT, DPT

At the very least, our personal experiences may assist in caring. But, maybe there’s more. What would you want when facing the unknown during a hospitalization? What’s helpful when you are in acute pain? An awareness to the needs of the person, not the patient, might be honed through our own personal struggles and reflection.

Maybe first person inquiry, reflection, and patient narrative are integral to our practice? It may be time to sit with our patients, and ask. It may be time to rethink rehab.