Writer’s Comment: This assignment for UWP 104F (Writing in the Health Professions) required a dramatic narrative detailing a patient case study that illustrates a larger issue in medicine in a style similar to Dr. Atul Gawande’s Complications. As such, the decision to write about my brother was an easy one. Just months removed from the incident, the events of that chaotic month were still fresh in my mind. Initially, I began by making a list of moments during those couple of weeks that I found to be the most memorable. At this point, I did my best to cut out as many items as I could to help ensure the narrative moved along at a reasonable pace. When I finally began to write, I chose to describe each of the events separately, almost as if I was writing a journal entry, and then to go back at the end to tie them all together. However, regardless of method or strategy, the process of writing this paper proved to be fairly easy solely because I was able to write on something I truly cared deeply about.
Instructor’s Comment: My wife works in the health business, and she says that the single most important skill in medicine is taking good patient histories. For that reason, in my UWP 104F course, I assign two case studies based on interviews with people who suffer an illness or other condition. In the first, when the students write up their findings, they keep the tone cold and clinical, as in a case study for a professional journal. In the second, they write more informally, using popular medical authors like Atul Gawande as models. Further, they need to explain the condition for a nonprofessional audience, quote written sources directly, and also quote the people involved in a manner that sounds like real speech. The students are essentially asked to write like professional writers, and with some feeling—a tall order. Jon fills that order in this essay, and goes further. He writes with emotion about his brother’s medical condition, but he also backs away from his personal grief and uses his experiences to comment on how contemporary medicine works—and also fails to work. The essay is, in fact, operating on so many different levels I am not sure I can count them all. A bravura performance.
—Scott Herring, University Writing Program
Shadows began to creep across the grassy field as the sun disappeared behind the hills in the distance. After nearly four hours, there had been few, if any, signs of progress. A palpable sense of anxiety filled the air as imminent darkness loomed over the horizon. The calming effect of the picturesque scene briefly alleviated the tension of the moment. Suddenly, a sharp crack reverberated through the warm, summer air. The crowd sprang to its feet in anticipation as the runner on second headed home. The outfielder raced to the ball and fired a strike to the catcher with the runner still ten feet from the plate. Undeterred, the runner charged full speed towards home plate and lowered his shoulder into the chest protector of the catcher. The violent collision knocked the opposing player several feet backwards as the ball went flying into the air. “Safe!” the umpire shouted as cheers erupted from the crowd. Instantly, the winning team burst out of the dugout and piled on top of home plate in celebration.
“Are there any questions?” the presenter politely asked. The field had vanished. I quickly straightened my back against the chair. The only source of light was a projector displaying slides on a screen at the front of the room. I couldn’t stay focused. The onslaught of information was too overwhelming. I would have given anything to be able to go back to that day just one week ago.
In the aftermath of the celebration, a reporter from a local newspaper asked my brother, “How does it feel to score the final run to win the California High School championship?”
“It feels like a dream,” he replied.
Today we were living a nightmare.
“Doctor, when will we know if the tumor is malignant?” my mom asked.
It was hard to believe it had come to this point. Four weeks ago, my 18 year-old brother found a golf ball-sized lump on the side of his recently shaven head. At the time it had seemed almost comical, as if it were straight out of an old Looney Tunes cartoon. Several of the parents and players on the baseball team had even started calling him “Fudd” as a result. However, when the “swelling” didn’t subside, he decided to see a doctor.
“After surgery we will send a sample to our pathology lab for tests. The tumor has begun to protrude into the brain, but I will say that no headaches or blurred vision is a good sign,” Dr. G, a neurosurgeon, answered. “However, for the next week he will need to remain in the hospital.”
“Why? Do I need more tests?” my brother asked wearily.
He never said it, but it was clear that he had had enough. And after enduring a seemingly endless array of medical tests who could blame him? It certainly wasn’t a matter of toughness. After all, during the playoffs, he had received multiple painkilling injections in his severely sprained ankle. But in the course of a couple of days, my brother had undergone blood tests, physical exams, X-rays, an MRI, a full body imaging scan, vision tests, and a bone marrow biopsy requiring a needle the length of half a pencil and a deep stab in the buttocks. Yet, in spite of all this, we were no further along now then we were a few days ago. We knew everything it wasn’t, but no one could tell us what it was. Things had almost reached the point where it seemed the doctors were ordering more tests just to provide the illusion of progress.
“No, I believe we’ve run all the tests we can,” Dr. G replied. “Now, as difficult as it may be, we can only wait.”
“Is it because I could have a seizure?”
“No. Look, you can stay home, but then you’d have to wait another month for surgery.”
“That’s not an option,” my dad interrupted.
“I know, but it still doesn’t make any sense. Why would the surgery be delayed just because I stayed at home?” my brother questioned.
“I’m sorry it’s just the standard procedure,” Dr. G explained.
Apparently, it was also “standard procedure” to admit a patient into the pediatric ward if his physician on record was a pediatrician.
As we made our way towards the pediatric oncology unit, I attempted to ready myself for the assuredly harrowing experience ahead. Nothing, however, could truly prepare me for the sight of emaciated children fighting death or of their parents facing their worst fear. It quickly became clear that the oncology ward is a unique place where the intensity of sorrow and anguish are matched only by the tenacity of its inhabitants. Suddenly, the worries of everyday life seemed trivial by comparison. Across the country, millions of Americans, oblivious to our suffering, went about their daily routines on what was an otherwise beautiful summer afternoon. And yet here we were, fearing for the worst, on the day we thought we would be celebrating my brother’s high school graduation with friends and relatives. I couldn’t help but wonder if the other families in the ward offered a glimpse into our own future.
When we finally arrived, we found a room whose deteriorating condition reflected the glum nature of the ward. The peeling linoleum flooring surrounding the hospital bed revealed a dark concrete slab underneath that matched the walls. The room had an old TV and a small bathroom, neither of which worked properly. My brother’s room belonged in a prison, not a hospital.
A couple of minutes later, a nurse named Sarge entered the room. A former army officer, he was a 6’5” mass of muscle and intimidation. Immediately, he outlined the rules of his barracks: “No visitors after seven...” He paused as the buzz of electric saws and hammers thundered from above. “Renovations,” he said. “You’ll get used to it. Okay, lights out at 10…”
“Ten?” my brother asked.
“Correct. Lastly, patients can’t travel outside of the room without a wheelchair.”
One week ago, my brother was playing baseball, now he couldn’t walk out of his room.
Despite my desire to become a physician, I admittedly know little about the practice of medicine. But in this moment it became clear that there had to be a better alternative for treating a patient suddenly faced with his own mortality.
Medicine, being a primarily scientific endeavor, is governed by numbers, both statistical and financial. Each year, the government allocates millions in research grants to identify medical patterns in groups of patients participating in clinical trials. Collectively, these findings serve as the basis for differential diagnoses and novel treatment regimens. Almost without exception, these advances are aimed at treating the disease, not the patient. This statistical approach is engrained in prospective doctors throughout their medical school education and residency. In his book How Doctors Think, Jerome Groopman, a professor at the Harvard School of Medicine, writes that medical students, interns, and residents are “being trained to use statistics that can only embody averages, not individuals. Their all-guiding data, and care guided solely by the numbers, cannot substitute for seeing and probing the person before them” (2007). As such, while the effectiveness of medical treatments has improved dramatically, the quality of patient care remains unchanged (Groopman 2007).
The reason for this discrepancy is two-fold. First, it’s easier. We can measure a heart rate or note a change in temperature, but addressing a patient’s emotional concerns is a challenging and time-consuming task. Not to mention the fact that doctors receive comparatively little training in patient communication (Groopman 2007). The second factor is an increased prevalence of unnecessary tests, hospitalizations, and procedures performed to protect a physician from legal action. According to Robert Aseltine, a researcher at the University of Connecticut, in the United States “83 percent of the physicians surveyed reported practicing defensive medicine” (2008). Similarly, Aseltine found “an average of 18 to 28 percent of tests, procedures, referrals and consultations and 13 percent of hospitalizations are ordered for defensive reasons” (2008). Although an unwarranted hospital stay may not cause physical harm, one cannot dismiss its effect on a patient’s psyche. Sitting in a hospital gown—the ultimate symbol of human vulnerability—while seemingly indifferent strangers in white coats poke and prod can be unquestionably intimidating and frightening. Ironically, the key to limiting malpractice claims is far simpler. In a study examining malpractice lawsuits, Dr. Charles Vincent, a psychiatrist at St. Mary’s Hospital in London, found that “patients taking legal action wanted greater honesty, an appreciation of the severity of the trauma they had suffered, and assurances that lessons had been learnt from their experiences” (1994). Ultimately, patients just want to be treated with compassion and respect. Even in medicine the Golden Rule still holds true: “Treat others as you would like to be treated.”
Being diagnosed with a serious illness is arguably the most trying moment in one’s life. Unfortunately, this difficult situation is exacerbated by a medical community that generally approaches a troubled patient as merely another puzzle to solve. For a hospitalized patient, the feeling of helplessness and isolation can be unbearable. It is enough to break the spirit of even the strongest man or woman. Fortunately, my brother was determined to ensure this would not happen to him.
“Yo, jack that,” my brother whispered as the two of us headed towards the hospital’s atrium.
“Right there,” he replied, pointing to an abandoned wheelchair down the hall. “I have a plan.”
After an hour spent trapped in the hospital room, my brother and I had decided to go out for some fresh air. We both just wanted to escape. At the time I had thought nothing could be more depressing than that room. Evidently I was wrong. The garden, roughly the size of a basketball court, was completely devoid of any signs of life. The only hint of color came from the weeds sprouting out of cracks in the concrete path. It was hard to have faith in a hospital that couldn’t even keep its plants alive.
“You ready?” he asked.
“We’re racing. Get in your chair. Alright, ready…go!” And with that he took off down the path with a smile on his face for the first time in days. In this moment it felt like back when we were kids racing our bikes around the block. As we sped around the course, these childhood memories provided a brief respite from the burden of a prevailing sense of uncertainty and anxiety. But I knew it couldn’t last.
That night our house phone rang at midnight. Instantly, I knew something was wrong. I got out of bed and pressed my ear against the wall.
“Whaddaya mean you lost him!?” my dad roared. My heart stopped as I sunk to the floor. I couldn’t believe it. How could this have happened? He was fine this afternoon. “I’ll find him myself if I have to.”
Find him? Still half asleep, it finally hit me. He escaped!
I quickly grabbed my phone off the table and sent a text asking where he was. “Chillin in the garden. Haha guess nobody saw my note,” he replied. Sure enough, on his bed was a crumpled napkin explaining his disappearance:
Bored as hell. Went to the atrium to
look at the stars.
The scheduled surgery finally arrived on what was coincidentally Father’s Day. That morning as we drove to the hospital a solemn silence filled the car. No one spoke, but I knew we were all thinking the same thing. According to the neurosurgeons, it was a relatively simple operation with a low risk of complications. But it was still brain surgery, and thus thoughts of everything that could go wrong weighed heavy on our minds. By the time we arrived at the hospital, my brother was already prepped for the operation. It seemed like only a couple of minutes had passed before Sarge interrupted to tell us it was time to take him to the O.R. We briefly said our good-bys, careful not to make it seem like this was the end. But as they began to wheel him away, thoughts from earlier in the day started to creep back into my mind: Would I ever see my brother again?
Two hours later, I found myself alone in the atrium. I just couldn’t take it anymore. Every minute spent sitting in the waiting room felt like five. My heart raced with every turn of the doorknob in the brief second before the intruder revealed his identity. Each time the door opened, I pictured Dr. G walking in with a somber expression and words of empathy for our family. And if it was, I knew I didn’t want to be there when it happened. No matter how hard I tried, I couldn’t shake the feeling that this was all my fault.
“Damn! Take it easy.”
“I didn’t do anything. You need to stop moving your head,” I said as I turned off the razor and cleaned tiny droplets of blood oozing from a small cut on the side of his head. “This is ridiculous anyway.”
“No, it isn’t. Jack shaved his head three weeks ago and we haven’t lost since. Can you imagine a full team of us out there like that? We’ll be unbeatable. We’re going to cruise through the playoffs.”
“And you believe that?” I asked as I turned the razor back on.
“Of course I do. If you’re so sure of yourself let’s make a wager.”
“I’m not going…”
“Grow a pair. When we win the championship I’m shaving your head. You don’t even have a choice.”
“Fine, but if you don’t then…What the hell is this!?” I asked as a patch of falling hair revealed what appeared to be a substantial bump protruding from the side of his head.
“It’s nothing. I think I got it from a foul tip off my catcher’s mask. It doesn’t even hurt that much.”
“How long has it been there?”
“I don’t know, I think I noticed it a couple of days ago. Why Doc, do you think I need to get it checked out?”
“That doesn’t get old? I mean haven’t even finished my applications yet. And if I was you I wouldn’t bother going in, I’m sure the swelling will go down in a week or two.”
And that was it. I might have prevented this whole fiasco just by telling him he needed to see a doctor. Instead, I had switched the razor back on and finished the job I had started without giving it a second thought. As the weeks passed, the urgency of the issue was somehow lost in the midst of the chaos created by the playoffs and final exams.
Now I couldn’t help but wonder if he had seen a doctor a month earlier whether the tumor would have still penetrated the skull and entered into his brain. As the oldest, I had always thought of it as my responsibility to serve as my brother’s keeper. When we were in elementary school I stood up for him when kids in my grade picked on him. Whenever he needed help with homework or sports, I made a point of being there. I would have given anything to take his place. Yet in the moment he needed me the most, I had failed him.
After all, I was the one who was supposed to be in medical school next year. How could I treat my own patients if I didn’t catch something as simple as a tumor sticking out of his head? Looking back, I knew I should have suspected something, but at the time my brother’s explanation seemed perfectly reasonable. If things took a turn for the worst, I knew memories from that day would haunt me for the rest of my life.
Vrmmmm! Vrmmmm! I reached down into my pocket and turned off the alarm on my vibrating phone, surprised to learn that four hours had already passed. If everything went as planned, the surgery should be ending. I tried to ready myself as I made the short trip back to the waiting room.
“Come on in,” Dr. G said as I entered. “I was just telling your parents that everything went well. The tumor was a little larger than we had expected, so we ended up excising a portion of skull about the size of a baseball. It took about fifty staples to close the incision, but I’m very optimistic that we removed all of it.”
“So does this mean he will always have a weak point in his skull?” my mom asked.
“No, not at all. We replaced the removed bone with a chemical that forms a matrix with the existing bone and is able to maintain the structural integrity of the skull. He’ll lead a perfectly normal life.”
“When will we know whether or not the tumor was benign?”
“We’ve already sent a sample to our pathology lab. The results should come back in a day or two. In the meanwhile, he will be placed in the ICU for the next couple of days. You should be able to see him in a few hours.” The news was certainly a relief, but we weren’t celebrating. Not until we knew whether or not it was cancer.
“How ya feelin’?” Dr. G asked as he walked into my brother’s room in the ICU the next day.
“Been better I suppose. I could certainly do without the piping in my schlong,” my brother replied as he motioned towards the catheter tubing at his bedside. Throughout the entire ordeal, this was the only time I heard him complain.
“Sorry ‘bout that,” Dr. G said as tried to hide a smile.
“What is it?”
“Nothing, it’s just that being a neurosurgeon most of my patients typically complain about the incision spanning their head.”
“Well, I guess we all have our priorities.”
“I hear ya, but I do have some news that should hopefully make up for it. The results just came back from the pathology lab and the tumor was benign.”
We let out a collective sigh of relief.
“The condition is called eosinophilic granuloma. The cause is unknown, but the prognosis is very good. There’s less than a 3% recurrence rate.”
And with that, our nightmare had ended seemingly as abruptly as it had begun. Suddenly, the stressful days and nights of worry and regret seemed unwarranted. But one critical question still remained unanswered.
“Summer ball started last week, will I be able to play at all?” my brother asked.
“Yeah, you just gotta give your incision some time to heal. I’d say you should be good to go by next week.”
“A week?” my parents and brother replied in unison, albeit with a differing level of enthusiasm.
“Absolutely, just make sure when you go outdoors you keep your head covered to avoid sun damage.”
“Good deal. Am I free to go then?”
“We’ll keep you here for the night, but tomorrow morning you can return home.”
“We can’t thank you enough doctor,” my mom said.
“Don’t mention it. It’s always a pleasure to be able to deliver good news. Well, I should probably get going. If you have any questions later please don’t hesitate to ask,” Dr. G added before he left.
That was the last we ever saw of him. In his eyes, my brother was just another one of the thousands of patients he had treated during his career. The majority were successes; too many were not. In a couple of months he likely wouldn’t even recognize us, but we would always remember the man who saved our family. Never before have I felt more indebted to another human being.
In the ensuing hours, we made countless phone calls to family and friends to share the news. This was the happiest moment in my life, yet in the back of my mind I felt guilty knowing many of the families we met in the ward would never experience our joy. Unfortunately, I had learned that too often situations similar to our own ended in tragedy. Later that night, I went to sleep feeling fortunate that our family was one of the lucky ones.
As we headed out of the pediatric ward the following morning we heard a voice bellow from behind, “Hold up!” It was Sarge. Slowly, he approached my brother and gave him a hug and said, “Good luck man.” In the end, Sarge wanted nothing more than the best for his patients. Like other medical professionals, however, at times he just had a hard time showing it.
That day, we left the hospital with a newfound appreciation for the frailty of life and the importance of family. Although my brother may beg to differ, I truly believe his tumor proved to be a blessing reminding us of the uncertainty in life and the need to always cherish the time we spent together as a family. Ultimately, I felt I had learned more about life in that one week than in the past twenty years. Eventually my brother’s incision would heal, but I knew each of us would carry lessons learned in that hospital until the day we died.
Aseltine, R. (2008, November 17). MMS First-of-its-kind Survey of Physicians Shows Extent and cost of the Practice of Defenisve Medicine and its Multiple Effects of Heath Care on the State. Retrieved November 15, 2010, from the Massachusetts Medical Society: http://www.massmed.org
Groopman, J. (2007). How Doctors Think. Houghton Mifflin Company.
Vincent, C. (1994). Why do people sue doctors? A study of patients and relatives taking legal action. PubMed , 1609-13.