Living All the Way
For a dying patient, a prescription of silence
Op-Ed—The Los Angeles Times
In medical school, doctors are taught not to withhold information or to be "paternal" in making decisions for patients. In the real world, it's not so simple.
May 16, 2013|By Susan Partovi
His wife was a patient at the clinic where I worked in my early days as a doctor. I saw her regularly for hypertension. But on one visit, she was more concerned about her husband — let's call him Pedro. He was having stomach pains and difficulty swallowing. I told her to make an appointment for him with me.
When I saw him, Pedro explained that he had lost weight and was having trouble swallowing solid food. A barium swallow study confirmed my fears: He had esophageal cancer. Another doctor at the clinic received the report before I saw Pedro again and made an urgent referral to surgery. He was whisked off to the land of surgeons before I had the chance to tell him he had cancer.
I didn't see him again until a couple months later, when I ran into him and his wife strolling through the hospital arm and arm. He was eating popcorn.
"How did it go?" I asked.
"Great!" he exclaimed. "I can eat anything now." He seemed so nonchalant, which was admirable given that esophageal cancer is almost always terminal. I reminded him to make an appointment with me.
Soon after that, I saw Pedro's wife at the clinic for a regular visit. Pedro was scheduled to come in the following week, and his wife had something she wanted to tell me in advance of his appointment.
"Don't tell Pedro that his stomach was removed," she said. "It's OK to say that they removed part of his esophagus, but not the stomach."
I'd never had a request like this before. "Why," I cautiously asked.
"He'll lose his will to live if he knows that his stomach was removed. He thinks he had surgery to remove the obstruction."
"Did anyone tell him that he had cancer?"
"No, and I don't want him to know," she insisted.
I was perplexed. In medical school, we were taught not to withhold information from our patients or to be "paternal" in making decisions for them. We internalized the idea that fully informed patients are better equipped to make treatment decisions. And with patients likely to die of their diseases, discussing the prognosis frankly would allow them to say goodbyes, get things in order and prepare advanced directives for what kind of interventions they did and didn't want.
But Pedro's wife was adamant. "He will lose his will to live if he knows he has cancer. And he will then die even sooner."
When Pedro and his wife came the next week for his appointment, I asked Dr. Castro, one of our attending physicians, for advice. I had just graduated from residency and was staying on as chief resident, but I needed help. Was it ethical to do as Pedro's wife asked and not tell him he was likely to die soon?
He told me to consider the patient's cultural background. "We need to understand what death means to this family," he said. Before he even finished, tears were rolling down my cheeks — for my own father, who had died two months earlier, just before my residency graduation, of lung cancer.
I had learned a lot about the cultural norms of Persians around death as I watched my family holding vigil over my father day and night, unwilling to give up the fight to keep him alive. Death was the enemy.
Being a physician, I knew he wasn't going to get better, but that wasn't anything my family could accept. How can I help Pedro's family figure out what death means when I don't even know what it means? I thought.
When Pedro arrived, Dr. Castro walked into the room with me to talk with him.
"Do you want to know the details of your illness?" he asked. "For instance, if you were dying or had cancer, would you want to know?" Without missing a beat, Pedro said, "No." The clouds had lifted. What had seemed so complex now seemed simple.
I continued to see Pedro. I didn't tell him he had cancer, but I always searched his eyes to see if he had caught on. He never did, and I grew more comfortable with his willful denial.
Then came the crisis. Pedro's wife brought him to the clinic because he was having trouble breathing. He was obviously in distress. I quickly evaluated him and asked Dr. Castro what I should do, reminding him of our secret. With grace, he turned to Pedro's wife in confidence,
"Do you want everything done to keep him alive?" Her face showed pure panic, "Of course! And don't forget your promise. You heard him. He doesn't want to know that he has cancer."
Taking extraordinary measures to prolong Pedro's life wasn't what I would have chosen for him. He was dying; why not let him go in peace? But we called 911 and paramedics whisked him off to the emergency room.
I ran across the street to the hospital to update the ER docs about his case. His portable chest X-ray, on the view box behind his bed, showed his lungs completely "whited out" from the cancer's spread through the lymphatic system.
He was sitting upright in the bed fighting for breath. "Dr. Partovi, what's happening to me?" he asked, sounding desperate. I caressed his head, combing back his hair. "Your lungs are filled with fluid. We are giving you medicine to help you breathe."
But I kept my promise to his family and to him and didn't tell him how dire his condition was. He died that week in the hospital, surrounded by family members who had reminded Pedro's caregivers repeatedly that they wanted "everything done" and that no one was to tell Pedro he was dying or that he had cancer.
No one did.
Susan Partovi is an instructor at UCLA's David Geffen School of Medicine and the medical director for Homeless Health Care Los Angeles.