We lied and the patient died

chemotherapy

While I have lots of unpleasant memories of my training, I don’t have a lot of regrets. There is one case, though, that I cannot forget: I went along with care that I believed to be unethical. I can rationalize it by taking into account that I was the most junior member of the team, with no authority to countermand the patient’s primary doctor or anyone else. I can rationalize it by acknowledging that even today, decades later, I don’t have any better idea of how I should have handled it. Nevertheless, I can’t help thinking I will always regret my participation.

I was on the medical service at the time and was taking call on a Saturday. I was paged to the Emergency Room to bring up a new patient. Mr. Rivera (not his real name) was a 38 year old Hispanic man who had come to the ER for a simple sore throat, and gotten a devastating diagnosis.

Mr. Rivera had had lymphoma when he was 18 and had been treated aggressively with chemotherapy. He was a success story; the chemotherapy had put him into remission and he had lived the intervening years free of any health problems. That’s why he was not particularly worried about his sore throat. He thought it might be due to strep.

The sore throat was caused by strep, but during the evaluation, a routine blood count was dramatically abnormal. Mr. Rivera had a very aggressive form of leukemia, a known long term side effect of his lymphoma therapy. Given the nature of his leukemia, the chances of remission, let alone a cure, were very remote.

Mr. Rivera had always known that leukemia was a potential side effect of his successful treatment. He also understood that it was an extremely serious disease. That’s why, in our very first meeting, Mr. Rivera wanted to discuss his prognosis and insisted on making clear his wishes about treatment and death.

Mr. Rivera had lived through multiple rounds of aggressive chemotherapy to treat his lymphoma. He dreaded more chemotherapy, but if there was a reasonable chance that he would go into remission, he was willing to undergo more chemotherapy. However, if, as he suspected, the prognosis was grim, he would refuse chemotherapy so he could return to the Caribbean island where he had been born, and, as he put it, “die on the beach with his family around him.”

I was not encouraging in the least about his prognosis, but I would not make a definitive statement because, as an intern, I was not allowed to interfere with the primary physician’s relationship with the patient. All information about treatment recommendations and prognosis was to be left to the primary physician. In this case, since the patient had had no contact with any oncologist in the previous 15 years, he was assigned an oncologist from our staff.

I was relieved that I was under no obligation to give the patient the grim news. It was early in my career, and I had no experience telling a patient that he was probably going to die. In my naivete, I assumed that the oncologist would tell the patient the truth, and that the patient would soon be heading to the Caribbean to live out his remaining days with his family.

I had not reckoned on the fact that oncologists can often be very unrealistic. Some oncologists believe very strongly that even the most remote chance of a remission should be pursued aggressively. That generally dovetails nicely with the fact that most patients are desperate to live and are willing to undertake any treatment, not matter how painful or difficult.

Mr. Rivera had already made it clear, though, that he was not desperate to pursue any chance. He understood what it meant to have a potentially fatal illness; it had happened to him before. He understood was aggressive treatment meant; he had already experienced it once before. He was adamant that this time he was not willing to grasp at a tiny chance or remission and probably die in the hospital due to the effects of the cancer and the chemotherapy. If the chance of remission was very small, he wanted to go home and die with his family.

Visiting Mr. Rivera the next day I intended to discuss his plan to forgo chemotherapy and return home. I was completely unprepared to learn that his oncologist had told him that he had an excellent chance to be treated successfully and that it would be a mistake to refuse treatment. As Mr. Rivera recounted this information, he watched my face carefully to see my reaction. He was clearly suspicious of the information he received from the oncologist.

I knew what was coming next and I dreaded it. Mr. Rivera asked if I agreed with the oncologist. Remaining carefully impassive, I told Mr. Rivera that I didn’t know nearly as much as the oncologist and therefore, I couldn’t really answer the question. He seemed unsatisfied, but he did not press me.

I sought out the resident physician, my immediate superior, and confronted him. Wasn’t it true, I demanded, that Mr. Rivera’s prognosis was exceedingly grim? The resident acknowledged that the chance of remission was remote. I wanted to know what we should do next. The resident was shocked. What did I mean by “what we should do?” We shouldn’t do anything. It was not up to us to correct the oncologist or, worse, to undermine him. This oncologist was known to be extremely aggressive and there was nothing we could do about it.

I argued, but he had an answer for every argument, reminding me that we could only get into trouble for pursuing this issue. To my everlasting regret, I took his advice.

Mr. Rivera had a rough time with his first course of chemotherapy. He was very sick and his immune system virtually shut down. As a result, he developed an abscessed tooth, and despite powerful antibiotics, the infection spread deep into his jaw. He was in terrible pain, poorly controlled with large amounts of narcotics.

As the days went by, Mr. Rivera spent his time vomiting, shaking with chills, and writhing in pain. Because of his damaged immune system and the chemotherapy, he was unable to fight the infection and it spread further even though we were treating it as aggressively as we possibly could. Ultimately, the infection spread to bloodstream, and three weeks after he was admitted, Mr. Rivera died without ever leaving the hospital and without ever saying goodbye to his family.

The oncologist felt that we had treated Mr. Rivera appropriately. We had given him every chance to go into remission and have a longer life. I thought we betrayed Mr. Rivera in the worst possible way; we lied to him and we deprived him of the opportunity to die the death he wanted, surrounded by the people who were important to him. What really happened is that the oncologist had substituted his preferences for Mr. Rivera’s preferences. The oncologist simply could not imagine or understand that Mr. Rivera could want something different than he would want in the same situation, and so he ignored him.

In the grand scheme of things, Mr. Rivera would have died anyway, and I was a minor character in the drama that played out. But I cannot help but think that I colluded in a theft. We stole Mr. Rivera’s dream of a peaceful death and replaced it with vomiting, fever and pain. We had no right to do what we did; we were guilty of a terrible crime, not a legal crime, but a crime all the same.

  • AlisonCummins

    I hadn’t realized that being unrealistic is a common trait of oncologists. My mother’s oncologist lied to get her to accept treatment she didn’t want; it was the intensivist who told us it was futile care. I thought it was that particular oncologist, or perhaps a conflict of cultural backgrounds and the value placed on life.

    Interesting.