The Soul of a Doctor

by Gordon Harper

  Hours after the exchange, I wanted to kick myself for suggesting we “go visit” the patient someday on the way home. What a ridiculous, naive medical student answer. Next time I would know to hold my tongue. But now I am not so sure that it was all that ridiculous. If the choices were dishonesty, no solution, or being forty-five minutes late for dinner one night, then maybe we could all benefit from a little naïveté. Being content with no solution certainly doesn’t convince me I am successful in remembering what this “patient-doctoring” is all about.

  An Emotional War on the Wards

  David Y. Hwang

  ALTHOUGH MEDICAL SCHOOL can be hard work at times, the most memorable learning experience of my first year occurred when I was a completely passive observer. Nothing that I had previously learned in my eighteen years of schooling had prepared me for it.

  I had approached a medical school professor about the possibility of my shadowing doctors specializing in palliative care. At the time, I did not know much about end-of-life care, but I had an innate conviction that it was important. As a first-year student, I was both grateful and surprised that the specialist and her fellow had actually indulged my request. A few weeks later, I found myself on rounds with the fellow and an oncologist in one of the local teaching hospitals.

  I followed them, both young doctors just shy of forty, into a hospital room. We greeted the female patient and her husband from the foot of her bed, and the doctors sat down next to the patient. I assumed an inconspicuous position in the corner of the room—trying to do my best fly-on-the-wall imitation—while taking a good look at the patient. Sitting up in her bed, she was completely engrossed in a coloring book, using a large set of crayons. So absorbed was she in her coloring that she barely acknowledged us. None of this behavior I would have found peculiar, if it were not for the fact that she was between thirty and forty years old. Had I not otherwise known a rough estimate of her age, I would have guessed that she was fifty, based on her haggard appearance alone.

  Because the palliative care fellow had earlier given me a briefing, I was familiar with other aspects of her life. I knew that her husband was an officer with the U.S. Marines. I knew that the couple had two small children. I knew that she was suffering from cervical cancer, which had already spread to other parts of her body. And I knew that this marine and his ailing wife were possibly about to hear the worst news of their entire lives—that her kidneys were only 25 percent functional and that chemotherapy was no longer a viable treatment option.

  What I did not know was how the young oncologist would break the bad news to the couple with clarity and compassion. As I watched the oncologist gather her thoughts, it occurred to me that she too was probably at a loss for the proper words. I had assumed before entering the room that as a trained medical professional, she would know exactly how to blend the hard truth of prognosis with empathy. Now, with her initial greetings aside, I could sense her uncertainty as she took a deep breath.

  Contributing to the awkwardness of the situation was the fact that no one in the room was successfully making eye contact with anyone else present. The husband focused his laser-beam stare at the two doctors as the oncologist carefully began describing the extent of his wife’s renal failure. The doctors were attempting to see eye-to-eye with the patient as the oncologist continued to explain why no more treatment plans were available and why the palliative care doctor was present to discuss other “options.” Despite the literally life-and-death importance of the news to her, the patient herself looked neither at her angst-ridden husband nor at the uncomfortable doctors; instead she continued to focus on her coloring book, giving no sign of comprehending anything the oncologist was saying. Nothing going on in the hospital room seemed more important to the patient than making sure she did not miss any spots while coloring.

  The lack of eye contact in the room abruptly ended, however, as the husband’s previously silent angst materialized into vocal anger. Both doctors turned their heads and met the marine’s intense gaze as he began to yell a series of questions. Why had no one in the hospital noted his wife’s kidney status before it became too late? Wasn’t this hospital supposedly one of the best in the nation? Had there not been a team of doctors responsible for monitoring his wife’s care around the clock? How could they have let her reach this desperate state? Why could they not cure her? Even as an observer, I became a bit frightened at the sheer force of his rage. Medical school had not trained these young doctors for the boot camp of unanswerable questions they now faced.

  The palliative care fellow gave the questions her best shot. Looking directly at the angry marine, she began to explain how doctors had tried their best to monitor her kidneys but that unexpected events sometimes occur in the course of cancers. The best that the doctors could offer at this point, she continued, was to lay out all the options available to his wife so that they could make the best-informed and most appropriate decision about how to spend the time she had left. Before I could see the marine’s response, the patient herself interrupted and spoke for the first time since we had all greeted her. Without looking up from her coloring book, she calmly explained that her situation was a complete misunderstanding. She was not terminally ill. She could not be terminally ill, she reasoned, because her husband was scheduled to go to Afghanistan in a few weeks to fight the Taliban. Someone would need to take care of their two children at home while he was away indefinitely. Being terminally ill was therefore not an option. The only option was to get better, and as far as she was concerned, the discussion of end-of-life care plans was a waste of time.

  The marine began to weep uncontrollably. Unable to contain his shock, aware of his wife’s complete denial, agonizing over the care of his kids, he cried like a child. A crying marine is much scarier than a screaming one—a brave soldier, assigned the task of protecting our nation from terrorist threats, in a complete state of hopelessness and distress. The palliative care doctor scrambled to find tissues to give to the soldier. I could see in the oncologist’s face that she was both concerned and frustrated with the turn of events, her delicate explanation of the prognosis not having connected with the patient at all. And then I watched as the patient calmly picked a new color of crayon out of her box. To her, there was no reason to get upset—no one in the room was really dying.

  As the marine began to gather himself together once again, he fought back his tears and politely told the doctors that he needed some time to speak to his wife alone. Both doctors nodded their heads; the oncologist told the husband that she was terribly sorry about the news, and that she would be willing to discuss questions at any time. As the doctors got up to leave the room, the palliative care fellow added that she would be available whenever they felt ready to discuss their plans.

  As strange as this whole experience had been, I did not know that perhaps the strangest moment of all was about to come next. This same husband, who minutes earlier had been consumed with rage and distraught with grief, thanked the doctors for doing their job well and for giving his wife’s prognosis in a humane and honest way. He said that he was very sad about his wife’s situation but that he appreciated the doctors’ clarity and empathy; giving bad news about patients was one of the most difficult tasks he could imagine, and the doctors had done well. As I watched the doctors thank him, I thought about how profound that comment was, especially from a man assigned to fight in Afghanistan in the coming weeks.

  Since then, I have been able to shadow palliative care staff a few more times, and every patient that I have met has been unique in his or her own way. However, my first encounter with the emotions surrounding the terminally ill introduced me to the tragic ironies that arise in the practice of medicine. I will never forget hearing a grown woman talk about taking care of her children while working on a coloring book. Never again will I see marines on the news and think that these tough men are incapable of crying. As I walk around the wards of the local teaching hospitals and see patients lying in their beds, I realize that pa
tients may pay doctors for diagnoses and cures, but they know that sometimes a doctor’s care and gentle words are all that are available. Although a doctor may think that the lack of a cure means personal failure, a family member of a dying patient may see a doctor’s kindness and understanding as the gold standard of the profession.

  The greatest irony is that, as a complete stranger, I witnessed one of the most vulnerable and personal moments for a family that I may never meet again. As I continue to “play doctor” with my classmates as a second-year student in our case-based curriculum, I can only imagine the true stories that are behind each anonymous “patient” we discuss. To be entrusted with a role in these stories, whether as an active participant or a passive observer, gives me a sense of awe and responsibility more foundational to my becoming a physician than anything I have been taught in class.

  Giving Bad News

  Amanda A. Muñoz

  THERE WERE FIVE PATIENTS waiting for us in the emergency department. My giraffe-size resident raced through the halls at an Olympic walking pace; I tried desperately to keep up while being careful not to twist my ankle on my clogs and fall down. The woman we saw was groaning on the stretcher, her husband apprehensive in the corner. She was intensely nauseated. We interviewed her briefly and then mashed on her belly. I started to think about what would be at the top of my list of differential diagnoses. Before I got to the third item on my list, my resident dashed out of the room. I pushed the curtain aside in an attempt to follow him, only to have him race by me in the other direction, holding a nasogastric tube.

  “We’re going to put this down into your stomach so that you feel better while we’re waiting for that CT scan,” he said. “Does that sound OK?” He was already dipping the tube in lubricant.

  The woman had trouble sitting up because she was so nauseated. “I’m going to pass out. I’m going to pass out,” she chanted. “I’m going to lose my water. I’m going to lose my water.” She lost control of her urine all over the gurney. “I can’t sit up, I can’t sit up.”

  We yanked her up by her elbows and forced her chin to her chest, and I put the tube in her nose and asked her to swallow. She groaned, but we got it down. We jammed it into the wall suction and ran out of the room. Her husband stroked her foot as she lay silent, her eyes closed.

  “Lena, sit up,” he said, his voice pleading. “It’s OK.”

  We ran to the ICU to check on our other patients. We hustled back to the ED, trying to make stealth consult visits so as to avoid the questions from the ED docs that would inevitably develop into more consults. We sprinted to radiology. Her scan showed a small bowel obstruction but also found a large mass on her right kidney, which the radiologist deemed “almost surely a renal-cell cancer.” We trucked back into the room.

  “You’re going to have to stay with us tonight,” my resident said abruptly. “There’s something blocking up your intestines and you have a big old tumor on your kidney, and we have to figure it all out.”

  “I have a tumor? Is it cancer, Doctor?”

  “We don’t know yet. We’ll have to talk about it later, OK?”

  “Oh, OK.” She closed her eyes again.

  Again we ran out of the room, flipping the curtain closed behind us. I turned my head to make sure it was closed while trying not to lose too much ground behind my resident. Lena’s husband stood at the foot of the stretcher, gently stroking his wife’s foot while she rocked back and forth, eyes closed, groaning, with our tube in place and her new diagnosis.

  As we ran down the hall toward the OR, I felt terrible. There was so much that had gone wrong about the situation. Five months of clerkships had shown me that the ideal patient-doctor relationship, taught in classrooms and acted out on videotapes, crumbles under the demands of ward work. I had already begun to place my efficiency, interests, and performance ahead of the patient’s feelings and questions. Even so, I felt ashamed that we had neither listened, nor made her feel comfortable, nor prepared her in the slightest for a diagnosis that we knew she wouldn’t understand.

  And yet I felt hesitant to blame my resident. He was in an impossible situation; every call night, I trailed him and witnessed the volumes of patients and problems about which he would be required to speak confidently the next morning. Additionally, I saw what was said to him when he wasn’t able to cover all his bases. Who could blame him for not being compassionate when he had too much work and too little time?

  Neither I nor anyone on my team ever saw Lena and her husband again. A couple of days later, I wondered what had happened to her. I thought about looking up her results on the computer, or walking by her room after checking to see if she was still in house. I decided that I was too busy; there were too many other things to get done before rounds started again. I too had put efficiency before interest and was already following in my resident’s footsteps.

  Straight Answers

  Ari Wassner

  JM WAS AN OLDER MAN admitted to the inpatient neurology service around the middle of my rotation. For the past year, he had been experiencing progressive leg weakness and difficulty talking and swallowing, which his neurologist believed was due to amyotrophic lateral sclerosis (ALS, sometimes referred to as Lou Gehrig’s disease). Earlier in the week, he had shown up for an outpatient neurology appointment complaining of an awful taste in his mouth. For the past two weeks, all of his food and drink had tasted terrible, to the point that he had eaten and drunk almost nothing for several days. He had become more and more depressed in the past month as the motor symptoms progressed and activity became more difficult for him. “I wish I was dead,” he said. Concerned by his deep depression, suicidal thoughts, and especially his inability to take in any kind of nourishment, the neurologist had him admitted to the hospital.

  I was the first person assigned to see him when he arrived on the unit. Going into the interview, I knew pretty much only what was written in the referral note, namely that the patient was a sixty-seven-year-old man with ALS, presenting with depression and an altered sense of taste. JM turned out to be a very engaging, very nice gentleman, and he tearfully described his distress over the awful taste in his mouth, which made all his food and drink taste like wet, mushy cardboard. We talked about his weakness and trouble swallowing, and he then admitted that in general, he had felt very depressed recently. When I asked him why, he said, “I’m afraid I might have ALS.”

  What was strange about this statement was not the reference to ALS, of course, but the word “might”: as far as I knew, this man had already been diagnosed with ALS, presumably some time ago. It quickly became clear that JM had never been told of his diagnosis. As far as he was concerned, his diagnosis was still being investigated, but the specter of ALS still hung menacingly in the front of his mind. Suddenly uncomfortable with this change in the parameters of our discussion, I beat a hasty retreat and scuttled back to the office.

  I looked back through the records of his recent neurology visits to see what his doctors had of late been thinking. It turned out that only a month before, JM had been described in his physicians’ notes as a patient with “progressive motor symptoms.” In subsequent notes, the mention of ALS became more and more frequent, culminating in a two-week-old report from an electromyogram (a test of nerve and muscle function) that declared his findings to be compatible only with ALS. Finally, the referral note for his current admission described him as a “67-year-old man with ALS presenting with …” Throughout this process, nowhere was there any record that the possibility, then probability, then near certainty, of the diagnosis had been discussed with the patient. He had effectively been diagnosed with a terminal disease more than a week earlier, and no one had told him. Not only that, but from my discussion with him, it was clear that much of his fear and depression stemmed from uncertainty about this looming possibility.

  I struggled to understand why it was that of the four of more physicians he had been seeing, all of whom had apparently concluded that JM had ALS, none had actually discussed t
hose conclusions with him. If they were convinced enough to write the unqualified diagnosis in his medical record, why did they not say as much to his face? When, or how, were they expecting him to find out this information? It seemed odd to think that the physicians were protecting JM from the diagnosis; given the distress that grew out of his uncertainty, it seemed that giving him some answers would have alleviated some of his difficulties rather than exacerbated them. Who were the physicians protecting, the patient or themselves? Whether it was the emotions involved, or the complexity and time demands of the conversation, JM’s doctors had avoided telling him what was going on, perhaps in the hopes that someone else would eventually address it.

  The irony was that JM was not fooled. On some level, he knew what was happening, what it meant that no one would give him a straight answer about what was wrong with him. When I checked in on him on his second day in the hospital, his first question for me was, “What is ALS?” No one had told him what he had, but he knew it was something bad—something so bad, in fact, that the doctors themselves couldn’t manage to talk about it. I explained ALS to him a bit, but I still didn’t tell him that was his diagnosis; it didn’t seem like my place to give the final pronouncement. Or perhaps, as I later thought, I had fallen victim to the same kind of rationalization as his physicians.