He was dying. There was no cure for his pancreatic cancer, no way to halt the inevitable, so he lay in his hospital bed and waited, day after day after day. Every three days or so he received a blood transfusion. His initial surgery for the cancer, performed two years earlier, included the removal of a section of his small intestine. This was followed by radiation treatments that damaged the area where the intestines were sewn back together, causing a large, bleeding ulcer.
Under normal circumstances an ulcer like his would be treated with surgery. Terminal pancreatic cancer is not a normal circumstance so the decision was made to treat him with periodic transfusions, keeping him alive until the cancer killed him. In addition to bleeding the ulcer also prevented him from eating a normal diet. He was severely malnourished and his strength had faded away. His weakened condition made it difficult for him to walk and his need for repeated blood transfusions rendered him too sick to be discharged from the hospital. He was resigned to spending his remaining days in a hospital room, occasionally moving from his bed to a chair. It wasn’t much of a life but he didn’t have long to live anyway.
He was in a VA hospital, transferred there after he reached the lifetime maximum on his private insurance plan. He went from the personal care of a private hospital to the impersonal care of the Veterans Administration. At the VA inpatients did not have a personal physician. They were cared for by a team of doctors in training. The team consisted of a third year Internal Medicine resident, two Internal Medicine interns and two medical students, all supervised by an attending physician. On the first of every month the team changed and the patient was introduced to a new group of doctors, all of whom were new to him, none of whom had ever read his chart. As he was a chronic patient his chart was several inches thick and contained over a year’s worth of his medical information. It was so thick that no one bothered to read it.
I took over his care in January 1989, my final year of medical school. After hearing his story form the other doctors on the team I expected him to be the stereotypical grumpy vet. He was anything but. He was kind, appreciative and gracious. He had accepted his fate and come to terms with his condition. He expected little from the care team and was grateful for any conversation. I genuinely liked him.
One night when I was on call I decided to be the first person to read his entire medical record. It was a slow night so I poured myself a cup of coffee and started flipping pages. I reviewed the records of blood transfusions, lab results and the portion of physician notes that were legible. As I thumbed through the pages I came across a pathology report from the Mayo clinic. As I reviewed the report my jaw dropped and my heart skipped a beat.
He didn’t have cancer. The pathology report from the Mayo clinic was a second opinion on the specimen from his original cancer surgery. The expert review stated that the correct diagnosis was chronic pancreatitis, not pancreatic cancer. He did not have a terminal disease, he had not needed the surgery, nor the radiation. He had been completely misdiagnosed. Even more troubling was the date on the report. It was over 2 years old.
I sat back in my chair and wondered what to do. All of the treatment decisions and recommendations for the last two years had been based on a lie. He had been told he was incurable so he had never been offered curative treatment. He had wasted away from a bleeding ulcer because he was told he would soon be dead from cancer. He didn’t have cancer, which meant that if he regained his strength he could have surgery to treat the ulcer. If the ulcer could be treated, he would no longer need blood transfusions. If he no longer needed blood transfusions, he could go home.
I called my senior resident and showed him the report. “We have to tell him,” I said, “this changes everything!”
His response stunned me, “You can’t tell him,” he said firmly. He explained that the decision would be up to the attending physician as he was the one who would be held responsible and liable for the information and its consequences. The resident was concerned about malpractice liability, afraid that the patient might be angry when he learned of the misdiagnosis. He did not want anyone mad at him for informing the patient and he did not want me to inform the patient either.
I was not at all happy with his response. It seemed to me that the patient had a right to know the truth and that we had an obligation to tell it to him. In my mind there was nothing to discuss or debate. I shared these feelings with the attending physician at rounds the next morning. He was as unconvinced at my argument as the resident had been. He felt that the patient had potentially reached the point where he was not going to survive, with or without cancer, so there was nothing to be gained by telling the truth.
I refused to accept his answer. I knew they felt that it was not a medical student’s place to challenge the opinions of superiors but I felt responsible to the patient. I pushed for additional review from the hospital ethics committee. My persistence paid off. An ethics consult was requested.
Later that evening I found myself with 7 physicians crowded into a room that comfortably held 5 people. I was the least experienced person present but I was the one presenting the patient’s case to the ethics committee of the VA hospital. They listened attentively to all I had to say as I presented the patient’s case to them and as they listened to the concerns of my resident and attending. It did not take them long to reach their decision. The patient had a right to know everything about his care and diagnosis.
The next morning I told the patient his correct diagnosis. I told him that he did not have cancer and that if he regained his strength he might be a candidate for surgery to cure his ulcer. He was appreciative and gracious. I ordered a nutrition consult to see what we could do to improve his overall health.
It was too late. The patient died a few days later.
Although my efforts did not change the course of the patient’s treatment or the ultimate outcome my experience with him did have value. It changed me forever. I made myself a promise that what had happened to him would never happen to a patient under my care. I vowed to be thorough, to be complete and to be diligent. No chart would be too thick, no history too exhaustive, no patient too complicated to ignore or dismiss. I realized that there would be patients for whom quality care would require uncompensated hours of chart review and I promised myself that when those patients came to me for care I would invest those hours.
Almost 20 years have passed but I have not forgotten my promise. Two weeks ago a new patient came to see me for the first time. He brought with him a list diagnoses that included congested heart failure, diabetes, hypertension and chronic pain along with an extensive list of medications. In keeping with my promise, I scheduled him for an hour long appointment. During that appointment I logged into the hospital system and reviewed his lengthy history. Halfway through my review I came across an echocardiogram report. The report described a perfectly functioning heart. The diagnosis of heart failure, one that he had carried with him for 8 years, was incorrect. The diagnosis had been handed down from one doctor to the next, unquestioned, for all of that time. I did not hesitate to tell him what I had found.
I ordered additional testing and referrals so we could plan a new course of treatment. As I filled out the referral request and entered the medications into his chart I was again reminded of the patient from the VA, and I was grateful for the lessons he taught me. Good medicine takes time. Good doctors invest as much time as is needed.
-Bart
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