The Perception of Perception

Recent experiences have left me with the troubling perception that a tool developed to open and enhance patient-clinician communication may have moved to being a shorthand replacement for such communication. Recently, I was hospitalized three times in quick succession for a total of 20 days for cellulitis with panniculitis complications—a painful combination of infection and inflammation. The pain was burning—a sharp pain alternating between a feeling of jagged glass being spun around inside my leg and a sense that lightning was trapped, richocheting around in my leg. My skin was exquisitely sensitive to any touch and the area raged with fever. A regular part of my care was pain level assessment using the numeric 0 to 10 scale with which the medical field has become so enamored. I do understand the romance of the scale. It is a way of validating that patients understand their pain better than anyone else. The pain scale was first developed as a well-intentioned effort to assist patients in communicating their pain levels to medical personnel. It gave the staff and patients common ground to discuss and validate a highly subjective experience. As such, it was a meaningful step in honoring the subjective experience of pain and validating patients’ perception of pain. As physicians began to recognize pain as an important area for clinical intervention, the pain scale moved into mainstream medicine. The intention was to give credence to the patient’s experience of pain and to provide the patient and the clinician a meaningful place to initiate discussion of and intervention in the pain process. It is a concrete acknowledgment that, while my crushed finger may look clinically just like your crushed finger, my pain response, my experience of the “crushedness,” may be very different from yours and that both are equally valid. This has served to enhance patient care, and I have no objection. Clinicians acknowledge the individuality of the pain experience. Patients have their uniqueness validated. They share an objective tool to evaluate a subjective experience. In Shakespeare’s words, “All’s well that ends well.” Or, maybe not. As Robert Burns noted, “the best-laid schemes o’ mice an’ men gang aft agley,” which brings me back to my recent hospitalizations. In response to the acute pain that accompanied the cellulitis/panniculitis constellation, nursing staff and physicians frequently asked me to rate my pain. I would begin to talk about and describe the pain as a process of investigating it with a mind to evaluating and understanding where I was in my tolerance of it, whether or not I was at a point of needing pain medication or if exploration might act as distraction or help me renormalize my pain tolerance. The staff would say, “No, don’t describe it. Rate it from 0 to 10.” Sometimes, these conversations were initiated by my pressing the call button on my bed because of pain. Other times, they were initiated by the staff’s responsibility to record my status. After I gave them a number, staff was uniformly responsive in offering me medications. No one challenged my number. Certainly, this validates the reality of my experience of pain and honors my autonomy. However, there was no apparent investment in processing my pain with me, in helping me to differentiate between tolerable and intolerable pain. What was an extraordinarily gray area for me was reduced to a black and white decision tree for the staff: how quantifiable is her pain? If medication is indicated, how much and of what kind? I appreciate that no one ever challenged me on my interpretation of the severity of my pain. However, I do wish that there had been exploratory, evaluative discussion that would have served as a model for me in long-term pain management. Thinking about that reminds me of how the hurts of my childhood were magically healed by a caring adult kissing it and making it all better. What those childhood encounters exemplified was the healing benefit of caring presence without the applications of any tinctures other than compassion. Sometimes, consoling presence is the needed medication—something I did not find in reporting and noting scores of 0 to 10. It seemed to me that the use of the 0 to 10 pain scale as a sole measure of pain assessment undercut compassionate communication. I understand that the pain scale is now a mandated part of record keeping to meet licensing standards. What is too bad is that, in that step, use of From the North Central Cancer Treatment Group Patient Advocacy Committee, Rochester, MN.