Epistemic humility and empathic imagination

In my professional role as a clinical ethicist, I see cases where treatment of chronic pain (CP) poses ethical issues, both as a risk of its under-treatment, and as a potential source of iatrogenic harm. While I have heard arguments proffered by colleagues and in the literature, and know the science of the subject, my professional understanding is plaited by having lived with severe and intractable pain for 27 years—all my adult life. I was 19 when a catastrophic accident left me with a partial spinal cord injury, setting up a "cascading failure" of the spine, for which there was no cure.

It began in college following an injury incurred while unloading boxes from a truck. Initially I thought I was ok; while my back hurt, a doctor determined I had strained muscles and would soon recover. A week later, the pain was no better; another doctor recommended bed rest. The pain continued, and as weeks passed, sciatic pain emerged and worsened. I began to lose sensation in my left leg. I found myself having to make a conscious effort to initiate movement from my hip: swinging my left leg forward, planting it on the ground, and then stepping forward on my right. This new gait was initially subtle, but as it worsened a foreboding sense grew in the back of my mind that the doctors were terribly wrong. I saw yet another doctor, who, on a hunch, ordered an MRI.

I sat on an exam table in the hospital, the doctor studying my scans on the wall. He opened the door and called to a trio of doctors. Soon they were chatting amongst themselves, pointing at the films, folding and unfolding their arms, and rubbing their chins. "I've never seen anything like that," one of them said. When the others left, the doctor turned to me and explained the extent of my injuries were rare in someone my age, and were very serious. Immediate surgery was necessary to decompress the nerves before permanent damage was done. This was triage; they operated knowing it wouldn't resolve the problem permanently. I returned to school able to walk again, the sciatic pain and numbness in my leg having disappeared, but a locus of pain remained centered in my lower back.

The surgeon prescribed Demerol and I was glad for it during the surgical recovery. I was still in school and doing my best to keep up with my academic work. Demerol was not ideal for ongoing pain because its short half-life meant I was constantly on a rollercoaster; pain relief came on strong, but the analgesia didn't last. As with most opioids, Demerol numbs one's cognitive abilities, so I took as little as I could. When I had recovered sufficiently, I began physical therapy and stopped the Demerol, intent on getting back to my life as it was before.

The pain continued, but didn't seem to be worsening, so I focused on my studies. Unbeknownst to me, the nerves in and around my spine were slowly developing a chemical sensitivity to an enzyme that had been released when several spinal disks were crushed. The pain intensified as that sensitivity worsened. I began avoiding sitting upright and standing, both painful positions. I was slowly losing more abilities; I could no longer reach, bend over, or twist without stabbing, jarring back pain. I was worried, but optimistic and determined to overcome this malady.

In the midst of doctoral studies in philosophy, my condition declined precipitously. Now both my legs were bathed in the electric shocks of sciatic pain, and my motor control was weakening. I returned to physical therapy, but I hurt too much to move. It felt as if I was on a planet with many times the gravity of earth; the sense of carrying far too heavy a weight, of being crushed.

By this point, I couldn't walk unassisted or sit for more than a few minutes; attempting either was immediately met with a staggering agony that crumpled me into a ball. Wincing and gasping to catch my breath, I would try...