Should I Have Lied?
The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit jco.org.
It was four summers ago when my mother mentioned in passing, “Your father is so irritable these days. It must be his chest pain.”
At the time, my father was 82 years old, long retired from his days as an intimidating school principal in an elementary school where the kids called him the tiger teacher. The passing of time, however, did not wear away his charisma or his stoic appearance. He was a man of few words, unyielding, austere, quick to rise to temper; he had high expectations and showed no mercy when he was wronged. For these reasons, his chest irritability, which he had had as long as I could remember, was thought of as psychosomatic. I replied to my mother nonchalantly, “Mom, he’s always had a stuffy chest. And you know how his temper can be. You can take him to a nearby hospital if his pain gets worse.”
Two months later, when I visited my parents, my father told me how the prescription pills from his psychiatrist did not make him feel any better and that his chest x-ray had not revealed anything significant.
“You’re fine, Dad.”
I didn’t think much of it. And he did not talk about his pain after that day.
A couple of weeks later, I swung by my parents’ house late at night. I entered the dark living room to an odd sight: my father sleeping upright on the sofa. It was so bizarre that I momentarily stopped and stared at his seated figure in the dark. Finally, I gathered myself and shook him awake.
“Shouldn’t you be sleeping in your bed?
“Lying down hurts my chest. I’ve been sleeping like this for a while now.”
I immediately went into physician mode. His legs were swollen, and he seemed to be dyspneic. I admitted him to the hospital where I worked as a thoracic oncologist. After a pleural effusion was suspected on his chest radiograph, I ordered a computed tomography scan. As I watched the scan in real time, I noticed the abnormal interstitial thickening associated with the pleural effusion that occupied about one-third of his left lung. An immense dread started to creep up on me, but my vocational habits kicked in, and I mechanically proceeded to obtain a thoracentesis for cytologic examination.
Delivering Bad News
THE NEXT EVENING, the bad news arrived from pathology. My father had adenocarcinoma. Additional imaging studies confirmed stage IV lung cancer. Determining who would be his primary oncologist was not even a matter for discussion in my family. It seemed only normal that the eldest son took care of the father; I became his attending physician. Quite frankly, I had always thought that should my father ever become ill, I would rather his illness fall into my expertise than not. And now that it actually had, I was relieved that I could be fully in charge of the situation to ensure thorough and high-quality care for him. I was sure that no one else would be cut out for this job. My father was a difficult person to deal with, even for me.
I spent the day brooding over how much information about the diagnosis I should share with him. I thought about the emotional distress I would cause him if I explained the full breadth of his illness. On the other hand, I was afraid that if I skipped any important details, he would be enraged if he found out about it later. Reluctantly, I walked into his room to deliver the news. He sat waiting for me. My mouth felt heavy. I slowly began, “Dad, you have lung cancer…. You’ll have to go through treatment from now on.”
“My initial sense of comfort about taking care of my own father slowly turned into an uncanny and familiar feeling of not being good enough for him.”— Hyo Jin Ryu, MD, and Jeong-Seon Ryu, MD, PhD
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“I quit smoking 20 years ago. Is it because I have an infection?”
“No, it’s caused by tumor cells.”
“How bad do I have them?”
I used a whiteboard to explain to him how tumor cells develop. Unshaken, he quietly listened. I continued on to my usual explanation of the different stages of cancer and current treatment trends.
“You have stage IV disease.”
“I trust you and your treatment. I’m relieved you are my doctor. I’m sure I’ll get better soon.”
He ended the conversation. Despite having told other patients this news innumerable times, this time was different. This time, the patient was my father, who had entrusted his son with his life. It was obvious that he had high expectations for a positive outcome, as did my mother and siblings. Leaving the room, my initial sense of comfort about taking care of my own father slowly turned into an uncanny and familiar feeling of not being good enough for him, a feeling with which I had always struggled growing up.
A few days later, I explained to him that his tumor did not have any druggable mutations, so his best treatment option would be chemotherapy with carboplatin and pemetrexed (Alimta). I could not muster the courage to tell him his expected survival, but I knew that if I did not tell him about the seriousness of his condition, he would not agree to see his relatives. Since the diagnosis, he had stubbornly insisted on not letting anyone know about his illness, let alone come to see him, not even his brothers. I asked him if he would like to receive family visitors. He shook his head. I had to voice my opinion.
“I think they should know about your cancer. How would they feel if they found out later?”
He quietly thought for a moment and nodded his head.
“Okay then. Let them know, but only when I have a few days left.”
During his chemotherapy, I would visit his room after work and talk to him throughout the night. He whispered to me many stories about his life that I had never heard before. I felt a strange sense of happiness and privilege in sharing this level of intimacy with my father, the strictest and quietest person I knew.
A Good Enough Doctor?
ALTHOUGH MY FATHER did not experience any adverse effects from two cycles of chemotherapy, his anxiety and dyspnea worsened, and he was readmitted to the hospital with a recurrent pleural effusion and new malignant ascites.
“Dad, I think the chemotherapy that you’re currently taking has not helped that much. We’ll have to find a different treatment.”
“Okay. If we change the treatment, the bacteria will die, right?”
It seemed like he did not understand his condition. A hint of annoyance slipped into my voice.
“How many times do I have to tell you that it’s not bacteria? It’s tumor.”
“Why am I not responding to the treatment?”
As if he were one of the thousands of patients whom I had seen before him, I reported in a matter-of-fact fashion the probabilities of a successful response to treatment. But there was a voice growing inside my head that became louder every second: “You failed him. You are a disappointment. He regrets you being his doctor.”
I prescribed erlotinib, and he was discharged. Every day, my telephone was flooded with voice messages from my father:
“Are you sleeping over tonight?”
“When are you done with work?”
“Why didn’t you stop by yesterday?”
He became more and more anxious and constantly wanted me by his side. I drove endlessly back and forth between my house, his house, and the hospital. I could not sleep and was immeasurably tired. I was tired of feeling sorry, feeling that I was not good enough, disappointed about not being able to help my father get better. As the days passed, his dyspnea continued to worsen, and his chest pain recurred. He was readmitted to the hospital and required multiple paracenteses. His frustration grew, became more vocal, and was increasingly directed at me:
“Why is my breathing not getting better?”
“Are you doing your job right?”
I could not help but feel offended. I had heard these types of comments too many times growing up. I did not know how to feel or how to respond. I felt completely helpless.
Nearing the End
“The professional distance I maintained as his physician kept me from emotionally immersing myself in this experience with him, never fully embracing or acknowledging his feelings.”— Hyo Jin Ryu, MD, and Jeong-Seon Ryu, MD, PhD
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MY FATHER’S CONDITION quickly deteriorated. He ate less and lost weight. He slept most of the day, and we were barely able to wake him. He lost sense of day and night. Sometimes, he did not know where he was. One morning, his awareness came back. He asked me if I could stay with him instead
of going on my morning rounds. I was torn, but ultimately, I refused his request rather coldly. That was the last time he asked me for anything.
A few days later, he could no longer eat anything, and I had to stop giving him erlotinib. I asked him, “May I tell your brothers that you’re in the hospital?”
“I guess that means I don’t have many days to live. Yes, please call them in.”
I was shocked by his response. He clearly remembered our earlier conversation and knew that I would only call his relatives if he were in critical condition. The next day, his relatives came to visit him. He asked the nurses to sit him up straight. He greeted them properly with his unfaltering stature, as if he were not sick at all, as he would have done before his life in the hospital. Throughout the visit, he was his old self, austere and charismatic. Two days later, he died.
Professional Distance, Emotional Disconnection
TO THIS DAY, I cannot stop thinking about how different things would have been if someone else had been his attending physician.1 Would I have better supported him as a son? The professional distance I maintained as his physician kept me from emotionally immersing myself in this experience with him, never fully embracing or acknowledging his feelings. I still remember his poise when I told him about the seriousness of his illness and when he asked to see his relatives, acknowledging that he had only a few days to live.
Was I too cold, direct, transparent? Should I have lied? Should I have allayed his fears and anxiety with white lies about the gravity of his illness and his chances of getting better? The fear, pain, and depression that he never explicitly showed me during his life have haunted me since his death. And every day, I am reminded of the white lies I could tell when a patient’s family asks me, “Dr. Ryu, would you treat my dad as if he were your own?” ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Hyo Jin Ryu was practicing at the University of California, Los Angeles, and Dr. Jeong-Seon Ryu was practicing at Inha University Hospital in Incheon, South Korea.
1. La Puma J, Stocking C, LaVoie D, et al: When physicians treat members of their own families: Practices in a community hospital. N Engl J Med 325:1290-1294, 1991.