When Patients’ Pain Screams Their Symptoms but Physicians Don’t Hear It

A lot more needs to be told about Dr. Maddy’s story. It’s an indictment of much about modern medicine. I cried in front of him when I did his consultation and that is rare for me. He had the livedoid changes that are characteristic of vasculitis but it was some time before we were able to make the definitive diagnosis of cutaneous polyarteritis nodosa (C-PAN). I pleaded with the doctors who admitted him initially to use high dose steroids but they wanted to wait for confirmation (or it was not their specialty). If there is one kind of patient for whom we should understand the need for aggressive pain management, it is a patient with vasculitis. This case represents one of my greatest failures, but in my defense, it was a failure of our system. His story is made more ironic by the fact that his life has been devoted to studying the patient-physician relationship and yet for him, that relationship failed. I am not sure how we can deliver adequate pain management to those who require it in the midst of the opioid crisis, but we simply MUST get this figured out.—Caroline E. Fife, MD

I am by training and vocation a medical anthropologist. Among the many areas in which medical anthropologists seek to serve are those involving the interactions between healer and recipient of care. In some instances we may assume the role of “cultural broker,” offering interpretation between two parties who, due to societal misunderstandings, talk past one another rather than engage in meaningful dialogue. This is particularly interesting to me since my dissertation involved a detailed assessment of American biomedicine and its epistemological underpinnings.

When, therefore, I was confronted with what would prove to be a life-threatening medical condition, my perspective was divided between that of patient and that of participant observer: examining the patient, the healers, and the system in which all of the participants interacted.

At first my injury seemed rather innocuous. I had cut myself just below the left knee while cleaning out the garage. Because it was bleeding profusely, my wife took me to the ER. The laceration required 13 sutures and was awkwardly closed due to its irregularities; nonetheless, it appeared unremarkable. I was instructed to visit my primary care physician to have the sutures removed. I assumed it would heal completely in 2 or 3 weeks.

Due to the depth and irregularity of the wound, my physician removed the sutures a few at a time over a period of weeks. But the wound just didn’t seem to be healing; in fact, it appeared to be spreading down my leg. What resembled a large dark eschar formed descendent to the original injury. My physician was not concerned and prescribed a regimen of antibiotics, which produced no improvement whatsoever. The affected area became riddled with painful, oozing, cavernous sores.

Incensed when the physician refused to address the obvious—that something was terribly wrong here—my wife arranged for me to see a wound care specialist. Cultures first indicated the presence of Strep B; more antibiotics still effected no change in the progression of this flesh-eating condition. The left leg swelled to twice its size.

And then suddenly for no apparent reason, lesions began to form on the previously unaffected leg. Occasionally, without warning, blood would spurt out from one spot or another in a 24-inch arc, and the clear fluid from the lesions soaked 10 bath towels a day.

Meanwhile, the pain became unbearable. I slept only when I was so exhausted by the pain that I passed out. Elevating my legs elevated my pain, so I sprawled sideways on the bed with my legs hanging over the edge, feet planted on the absorbent towels, rocking and moaning until a thin veil of sleep overcame consciousness.

My situation continued to deteriorate, leading to several hospitalizations. I was in and out of university-affiliated tertiary care centers that specialized in what I had evolved into—an “interesting case.” Typically, 5 or 6 teams of physicians from various disciplines would see me, each offering diagnostic opinions. Each time, I received the same treatment—IV antibiotics—and each time, I pleaded for something to ease my intractable, excruciating pain.

Pain was, in fact, my primary complaint, but none of the entourage of physicians listened to me. The answer was always the same: “We’ll send a pain doc around later.” “Later” typically occurred in 2 days. At each shift change, I was asked the obligatory question: “On a scale from 0 to 10, with 0 being no pain and 10 being excruciating pain, how would you describe your pain?” I typically answered 14 or 15, the grimacing face on the wall chart was circled, and that was it until the next shift change, when the process repeated. Meanwhile, the excessive doses of IV antibiotics damaged my kidney function to the extent that I required dialysis.

During all of my hospitalizations—now up to 15—my wife had been tirelessly researching my condition. Before a final diagnosis had been suggested, she arrived at what she believed my diagnosis to be—a rare form of vasculitis known as cutaneous polyarteritis nodosa (C-PAN). Two weeks later this was the consensus of my medical team. Still, pain—my primary complaint—had not been adequately addressed.    

On my 16th hospitalization, my legs had devolved into two tibia and fibula shrouded with rotting flesh. I became delirious. In spite of rounds of antibiotics, most of them ineffective, I was in the beginning stages of septicemia. A surgeon took my wife aside and said, “We must amputate his legs above the knee immediately in order to save his life.” As she signed the consent form, I heard her say, “I can’t live without him.” She was my date at my high school prom.

As I sit here in my wheelchair, looking down at where my legs used to be, I reflect upon how fortunate I am to have had the support and tenacity of a wife who loves me. But I am haunted by memories of a medical system from which I sought relief for a horrible disease that decimated my legs with pain that defies description. The great 18th century Italian anatomist, Giovanni Battista Morgani referred to symptoms as “the cry of the suffering organs.” My pain was screaming my symptoms; my physicians didn’t hear. They were searching for a horse because they heard hoofbeats. I was a zebra.

I understand the reticence on the part of physicians to involve themselves in pain management in light of the opioid crisis. As someone who spent a little over a year in intractable pain with no relief, I have a different perspective. There must be meaningful dialogue between patient and physician. The subject of pain must be addressed with genuine concern, understanding, and action. Sanity must return to our treatment of pain, or patients will find other means of controlling their pain, some of which are extreme and permanent.

Richard E. Maddy, PhD, is a native of Waco, Texas and lives near Houston. His 30-year career in the pharmaceutical industry included positions as Regional Scientific Director and Field Medical Director. Dr. Maddy also taught both physical and cultural anthropology at the university level. He holds an undergraduate degree from Baylor University, as well as Masters and PhD degrees from Southern Methodist University.