My father died 30 years ago today

My father died 30 years ago today.

In the picture above, he’s 60 years old, holding my second son less than an hour after his birth. That baby is now a lawyer and married. My father missed it all. He was dead less than 5 months after this picture was taken, although we had no idea at the time that the cancer that would kill him was growing wildly in his chest and had been for months.

Any illusions that I had about the practice of medicine died with him.

Many people confuse my condemnation of the pseudoscience of natural childbirth, lactivism and attachment parenting with blind support of the medical profession. Nothing could be further from the truth. I’ve seen the glaring deficiencies of medical practice up close. My father died at the hospital where I had trained, where I was on the staff, where I had convinced him to switch his medical care. He died after a major medical mistake and, but for my aggressive intervention, would have died in agony while my colleagues looked on as if there was nothing they could do to ease his suffering.

I know what bad medical care looks like, and I know how common it is.

My father had a chest X-ray on November 1, 3 months after the photo was taken, and the day after he first coughed up blood. He had a fist size cancer in the middle of his chest. I got the message as I was finishing up in the operating room and hurried to meet him at the office of the chest surgeon. I didn’t have to go very far; I simply took the elevator.

During the appointment, I listened as the surgeon explained the various grim possibilities: lung cancer, lymphoma, etc. They scheduled a biopsy procedure for two days later and the surgeon asked if my father had any questions. He had only one: How could he have a fist sized tumor in his chest if only a few months before (March) he had been in this same hospital to have bladder stones removed, and his pre-op chest X-ray had been normal? The surgeon was sympathetic; sometimes tumors could grow so fast that it they could be too small to detect even a few months previously.

The biopsy revealed adenocarcinoma with an unknown primary. In other word, the cancer was so aggressive that it had lost all the features of the organ where it originated; it might have been lung cancer, but it easily could have been a metastasis from prostate cancer, or indeed any other cancer.

At some point during those days, I thought to look at the original chest X-ray, the one that had been done routinely in March. I wanted to see if, knowing what we knew now, the cancer could be detected in its earliest stages. I went down to the radiology department and requested the film. I was an attending physician at the hospital and had worked there for years. They handed over the film without question.

It is difficult to capture the sense of shock and horror that I experienced on looking at the X-ray. The cancer had been diagnosed on the pre-op film. Ironically, the diagnosis had been very skilled. The cancer was small and indistinct on the original x-ray, but the radiologist had found it anyway and prominently noted it in the written report. I immediately called my father’s primary care doctor to ask if he was aware of this. He admitted that he had known since November 1, as had the chest surgeon. The surgeon had simply lied when he had he led my father (and me) to believe that the original chest X-ray was clear.

Why had they failed to tell my father of the cancer on his original X-ray? Every doctor had thought that the job of telling the patient belonged to someone else. The radiologist thought that the urologist would tell my father, since the urologist had ordered the x-ray. The urologist thought that the radiologist would alert my father if there were anything abnormal on the x-ray. The anesthesiologist was aware that the chest x-ray showed a small cancer, but assumed that either the urologist or the radiologist had told my father. The radiologist actually sent the urologist the x-ray report, which mentioned the cancer, but the as the urologist admitted at trial years later, he had never looked at it.

Why did the doctors lie about it? When I confronted the primary care doctor he claimed that they did it to protect my father. They didn’t want to “lower his morale.” Obviously it was because no one wanted to admit what had happened, and because they wanted to protect each other. I can’t imagine how they thought they would keep it a secret. I worked at the same hospital. I had complete access to all the records, including the X-ray, yet somehow they convinced themselves I would never look.

Despite multiple types of aggressive chemotherapy, my father died 8 weeks to the day after the diagnosis. I wish I could tell you that his last day was a revelatory experience, that I had never realized how poorly dying patients were treated. Unfortunately, I knew better, and therefore was prepared to fight on his behalf.

Oh Christmas evening my mother called me at home to tell me that my father was in agony and no one would help him. I nursed my infant son to sleep and headed for the hospital, my hospital. When I saw my father, I was appalled. He was sitting bolt upright in bed, gasping for air, and clutching his chest.

I paged the intern myself and demanded his presence. The intern, to his credit, was abashed. He acknowledged that my father was clearly in terrible distress, and we agreed that morphine would ease his agony, but the intern refused to order the morphine because it “might hasten” his death.

My father was dying. Every treatment had failed and there was nothing left to try. There was no hope of recovery. And we were going to withhold pain medication … why? To prolong his death?

As you might imagine, I did not take “no” for an answer.

It was well after midnight at this point when the intern woke up his resident. I could hear that the resident was unwilling to order the pain medication, and I grabbed the phone. The resident insisted that he didn’t have the authority, only the oncology fellow could decide.

So I called the oncology fellow myself and woke him up. He couldn’t possibly order pain medication in this setting, because it might slow my father’s breathing and thereby hasten his death. Only the attending physician on call had the authority to issue that order.

Then I called the attending at home and woke him up. He listened and replied, “Look, Amy, I know you’re upset, but it’s the middle of the night. Why don’t we wait until morning when your father’s own doctor will be back and he can make the decision?”

By this point, I may, possibly, have raised my voice a bit, and a crowd of nurses and support personnel had gathered to watch from a discreet distance. I demanded that he appear in person to tell me to my face that he would not order the pain medication.

He relented and I handed the phone to the nurse so she could record the order. I started to relax.

The nurse hung up the phone and I looked at her expectantly.

“I can’t give that morphine,” she said. “I’m not comfortable with giving medication to a patient so near death.”

“You’re not comfortable?” I may, possibly, have yelled. “Not comfortable? Do I look like I care about your comfort?”

I threatened to break into the narcotics cabinet myself and get it, and then report her to the hospital administration for failing to follow an order.

She, too, relented and hung a morphine drip. Within 5 minutes my father began to ease back against the pillows. After 10 minutes, he looked at me and smiled. “I feel great!” he said. “I haven’t felt this good in months. This is terrific.”

He died less than 24 hours later. Throughout the day, he kept telling everyone how wonderful he felt. The rest of my family kept thanking me for demanding what I should not have had to demand: adequate pain relief for a dying man.

And so my beloved father died in the hospital — my hospital — where they had made a dreadful mistake and where they nearly got away with denying him the pain relief that was the only thing they had left to give.

It’s been 30 years and I miss him every day. Believe me, I have no illusions about the state of contemporary medicine.