Not Done Yet: Searching for the Limits of Patient Ownership As a Medical Student

The first patient I ever lost was not actually my patient. He was a 65-year-old white male with a 40 pack-year smoking history, who presented with a 6-week history of sweats, shortness of breath, a distended abdomen, anorexia, and fatigue. He had lost 15 pounds in the month before presenting to his primary care provider, who immediately arranged for him to see a gastroenterologist for a liver biopsy. At that time, I was a second-year medical student, but I knew that the results would be bad news. We awaited the results together. The suspense kept me awake at night, so I did what little I could for this patient: projected positivity and optimism, tried to answer his questions, offered suggestions for alleviating his discomfort, and validated that he could rest as much as he needed. I scoured every resource I could think of, hoping to discover some rare diagnosis whose recognition would save his life. The patient’s primary care doctor called me and told me the news, “Your dad’s pathology report came back and it showed small cell carcinoma.” Somehow I was still shocked. “Do you understand what this means?” I did. “I’m very sorry that it took so long to get in touch. I’ve known your dad for years. He is my patient, and I didn’t want him to get the news from anybody but me. When we spoke, he asked me to call you to discuss his diagnosis. Please call me any time if you need anything.” I spent the rest of the day learning how to break bad news. I started with my mother: “Yes mom, this means dad has cancer . . . No, this is not the kind of cancer that they can operate on . . . Maybe 8 to 12 months if we’re lucky.” A month later, when my wife and I traveled to see my parents for Thanksgiving, my dad was cachectic and frail. “Dad, I made some calls, and I’ve found doctors at Walter Reed, Georgetown, and the National Institutes of Health who would be willing to see you. I’m sure we can get you into a clinical trial.” “I trust my doctors. I think they’ll take good care of me. We can wait on that trial stuff.” I asked him how he felt about his diagnosis and prognosis. He shrugged and simply said, “I don’t like it, but what can I do now? I smoked. Now, I just have to deal with it, and hope for the best.” Following our trip, he developed nausea, vomiting, and diarrhea, which his oncologist dismissed as a normal reaction to chemotherapy. Within a few days however, he was taken to the hospital by ambulance in the middle of the night. Once he was admitted, I called the hospitalist assigned to him. “I’m told my dad has an infection. Is he septic?” “Yeah. He’s septic.” “I’m also told that he has quite a bit of pain. That’s new. Where is the pain?” “He has pain.” “Yes, but what is causing the pain? Where is it?” “I think your dad has cancer? Maybe it metastasized or something.” “Please put my mom back on the phone.” I was frustrated. My dad could no longer speak, my mom did not understand what was happening, and I had nothing to tell her. “Mom, I support whatever you feel like you have to do now.” I hung up the phone and sent my dad a text message. Then I called the rest of our family, and told them that it was time to say anything to my dad that they felt they needed to say. Fifteen minutes later I called everyone again to tell them that my dad had died. Within a month I was back at school with my classmates, preparing for our clerkships. I began to develop an appreciation for what my dad’s primary care physician had done when he called to tell me the bad news, and that the care he gave my dad was founded on his strong sense of ownership and responsibility for him as his patient. The next few months were both chaotic and reaffirming, and I soon grew comfortable with the routine of taking care of patients in the hospital. I thought frequently about my dad and about the differences in how his doctors conducted themselves. As I did, I became less concerned about my capacity to care for my patients and instead began to wonder where my responsibility to my patients ended. Uniformed Services University of the Health Sciences, 4301 Jones Bridge Road, Bethesda, MD 20814. doi: 10.7205/MILMED-D-15-00003