Norman A. Paradis is director of emergency medicine research at New York University-Bellevue Hospital in New York City. This article appeared recently as an OP-ED piece in The New York Times.
It has been more an a year since my father died, and I have come to believe that the circumstances of his death demonstrate much of what is wrong with our medical system.
As I grew up, I heard so much about what a good and gentle physician my father was that at first I ran from the idea of becoming a physician myself. But at 35, I was well along in my own medical career and with pride brought him to Britain to hear me deliver a paper. He had trained there and wanted to find out what had become of his classmates. He seemed to lose some vitality when he heard they were all dead. In perfect health his whole life, he began to complain of back pain.
In the United States, he was examined by several internists. All his blood tests were normal, and they declared him healthy. Yet the pain persisted. We felt it might be spinal irritation and arranged for a neurologist to see him. This doctor said his CAT scan was normal, and he was reassuring; it may just be a pinched nerve, he said. “Your father is 75 years old, but doesn’t look a day over 50.” How could he know that just months earlier he had looked 40?
My mother called regularly, “He doesn’t look well and has no appetite.” Relatives agreed. His physicians did not. Then he developed a blood clot and was admitted to the university hospital. Blood clots are a sign of cancer, and I insisted that they work him up from head to toe. Another CAT scan showed a lesion in the pancreas, and others in the liver. Waves of pain passed over me as I realized that back pain, weight loss and blood clots were the classic triad of pancreatic cancer.
I flew to his home to see him. Years of training did not prepare me to see my father ill. He looked old and frail. I went to radiology to see the CAT scan. When I put it in the light box, I knew that my father would soon die.
I asked the rest of the family to step outside so he and I could be alone. I could not stop my tears. He held me and whispered that everything would be O.K. “Norman, I have been a surgeon for almost 50 years, he said, “In that time, I have seen physicians torture dying patients in vain attempts to prolong life. I have taken care of you most of your life. Now I must ask for your help. Don’t let them abuse me. No surgery, no chemotherapy.”
I assured him I would take care of everything. Before returning to New York, I thought I had made our wishes clear to his doctors: treat the clot, get a biopsy if possible, but, above all, make him comfortable. Almost immediately, a series of surgical and radiological procedures started.
When hysterical phone calls from my mother began, I quickly realized what was going on. Consulting surgeons get paid thousands of dollars an hour when they “decide” to operate. So that was what they were deciding to do. It’s an old story of inflated fees charged by sub-specialists with procedure-based practices.
When I finally got my father’s physicians on the phone, I insisted that he be cared for only by internists who had no incentive to do anything but make him comfortable. They assured me they understood my concerns and would keep in close contact. I never heard from them again.
My mother continued to describe procedures that were draining his energy. When my brother, a lawyer, arrived, he found our father in a hallway, where he had been left after “a test.” He pleaded: “They are treating me like an animal. Please get me out of here.”
With difficulty, my brother contacted the physicians in charge and was assured things would improve. We said legal things about performing procedures without consent, and thought the problem was solved.
I can’t describe the anger I felt when my mother called to say that they had continued the endless procedures as soon as we left. My father had been in the hospital for two weeks. He had spent most of that time receiving unnecessary “billable” high-tech therapy that could not possibly cure him or relieve his pain. Many things had been done to correct problems caused by earlier “therapies.” When my mother put him on the phone, he was incoherent.
We arranged a conference call with the hospital administrator and chief of staff. The surgeons were “too busy” to come to the phone. “Despite our clear instructions, you have continued to perform invasive procedures on our father,” my brother said. “He is now incompetent, so we are involving our power of attorney and explicitly forbidding you from doing anything that is not directed at relieving his suffering.”
After my mother called the next morning to say he had again spent the night undergoing surgery, I called almost every other hospital in his state trying to arrange a transfer. Again and again, I was assured that he was “in the best of hands” and that I must be mistaken in describing his therapy as unacceptable. Each time we arranged to move him home or to a hospice, a test or procedure would be performed, making him temporarily too unstable to be transported.
When I again flew down, I found my father alone in a hallway after an ultra-sound exam. He was skeletal and barely arousable. I moved him back to his room. Within hours, my sister and I had him moved to a nearby hospice. He died the next morning.
For months, I lay awake trying to understand what had gone wrong. If a doctor and a lawyer could not get decent care for a doctor, what chance does the public have?
When I asked my mother if the hospital bills were a hardship, she said Medicare had paid for the whole thing – more than $150,000 on a patient who needed only a bed and some morphine. I called the Medicare inspector general’s office. It agreed that if the hospital had billed for unauthorized procedures, it was possibly a violation. “In that state, we have so many fraud cases over a million dollars that we wouldn’t even investigate one involving only $150,000,” I was told.
Our health care system is structured to meet reimbursement rather than patients’ needs. Tremendous amounts of money are spent prolonging death, not life. If the story of my father’s suffering can help improve our medical system, it will have been worth telling. Though I was unable to get him the care he deserved, I believe he would forgive me.