Living and Dying in Brick City (18 page)

These were the right medications for a throat infection, I thought to myself. Before I could even note the medications on my chart, Michelle was on the attack: “Look, you
better
do something!” she snapped. “He’s sick, and these so-called medicines ain’t working! The other doctor said these would make him better, and they clearly haven’t.”

Her voice was raised, her eyebrows were wrinkled, her nostrils flared, and her right index finger waved in the air for added effect. Michelle was only a few inches shorter than me and built like a high school football player, with a certain swagger. But it was important
for me to stay calm. A nurse, apparently hearing Michelle’s raised voice, peeked into the room to make sure everything was okay. I signaled to her that I had it under control.

“Why is it so slow here?” Michelle continued. “We’ve been here for hours and nothing’s been done to help us.”

“I understand your frustration,” I said calmly, then turned to her father and asked about his medical history. He told me that although his throat had been bothering him for around a year, the symptoms had worsened in the week since his previous hospital visit. He had no medical insurance, but his daughter had insisted he go to another hospital, this time Irvington General.

“You say you’ve had throat pain for about a year?” I asked, trying to make sure I’d understood correctly.

“That’s right. It comes and goes, but lately it’s been here all the time.”

“Do you smoke?”

Mr. Tate nodded yes.

“Do you drink?”

“Well, Doc, I used to drink in my twenties and thirties, but not anymore, especially since my throat has been bothering me. I’m trying to quit smoking, too.”

“How many cigarettes would you say you smoke a day now?”

“About three, but I used to smoke maybe a pack, a pack and a half.”

Michelle interrupted: “Stop lying, Daddy. You still smoke a whole pack.”

I continued my line of questioning: “Have you experienced any weight loss?”

“Yes,” he said reticently. “I have.”

Throat pain off and on for a year. Weight loss. Swelling on the side of his neck. My concern was growing.

“Dr. Davis, I think I’m losing weight because I can’t eat. It’s the
pain in my throat that’s causing all of this. It hurts a lot. Believe me, if it wasn’t for the pain, I wouldn’t be here. I hate coming to these hospitals. You doctors always want to cut somebody, and you always talk over patients’ heads, like we understand all that fancy medical talk.”

I promised him I would do my best to be clear and make sure he understood everything that was going on. “If you have any questions at all, don’t hesitate to ask,” I said.

“I’m just afraid you’re gonna tell me something I don’t want to hear … And whatever it is, there is no way in the world I’m going to allow you to cut me,” he added. “See, I’m okay with whatever happens. I’ve lived my life. I take my herbal medicines and pray. That’s what I believe in, and that’s all I need.”

It saddened me that at age fifty-five, Mr. Tate thought he’d lived a full life and was ready to give up. How had any doctor diagnosed him with just a throat infection without doing further tests? Either the doctor hadn’t bothered to look at him closely or had simply instructed him to follow up with his primary physician. I hoped Mr. Tate’s lack of medical insurance, his distrust of the system, or his lack of understanding hadn’t caused the other doctor to just dismiss him without the same care that may have been provided to a better educated, better insured customer. I had my suspicions, though.

“Don’t worry,” I said. “I have no plans to cut anyone who doesn’t need surgery, and I’m not here to try to alter your beliefs.”

He eyed me suspiciously. “They sure are making you doctors younger and younger,” he said. “I hope you don’t think that I’m a guinea pig or something.”

Guinea pig—I’d heard that term many times from black men and women of Mr. Tate’s generation, and they were only half kidding. Many of them were old enough to remember hearing in 1972 about the infamous government-sanctioned syphilis experiment
at the Tuskegee Institute, a historically black college. The U.S. Public Health Service was rocked by scandal when it came to light that its doctors, working with Tuskegee, had in the 1930s recruited 600 sharecroppers from Macon County, Alabama—399 who were already infected with syphilis and 201 who were not—for a study of the progression of the disease in black men. To the participants, who were poor and mostly illiterate, the offer to receive free medical treatment for “bad blood”—a term that the local black residents often used to refer to a variety of illnesses from anemia to venereal diseases—must have seemed like a stroke of good fortune. After all, they were also promised a hot meal on their days at the clinic, free medical exams, free treatment for minor ailments, free transportation to the clinic, and free burial benefits. But the participants were never told that they had syphilis. Even worse, they were denied treatment when penicillin became widely available in 1947 as a safe and effective cure. The study was finally forced to shut down in 1972 when newspapers broke the news. By then, just 74 of the original 399 men were still alive, and massive damage had been done. Twenty-eight of the men had died of syphilis, another hundred had died from related complications, forty of their wives had been infected, and nineteen of their children had been born with congenital syphilis. The fear that resulted from this abuse by the medical establishment has reverberated among African Americans ever since.

A similar but lesser-known controversy erupted in more recent years when syphilis experiments by U.S. doctors in Guatemala between 1946 and 1948 were exposed. As part of that study, doctors deliberately infected nearly 700 prisoners, soldiers, and mental patients with syphilis (and in some instances gonorrhea). Some Guatemalan health officials approved the study, but none of the patients gave their consent. The Guatemalan study was supervised by Dr. John Charles Cutler, a Public Health Service researcher and
former assistant surgeon general who was also involved with the Tuskegee experiment in the 1960s. In October 2010, the U.S. government officially apologized to Guatemala for the controversial study.

The more well-known Tuskegee experiment is often cited by medical professionals as the primary reason that minorities still fear the medical establishment and are underrepresented in clinical trials for new medications and treatments, as well as in bone marrow, organ, and blood donations. Some minorities even believe that HIV is disproportionately high in African American communities because it is actually man-made and was part of some kind of deliberate extermination plot.

Though the fear and conspiracy theories still linger, there are hopeful signs that the passage of time has begun to change things for the better. In November 2006, the
Journal of Health Care for the Poor and Underserved
published the results of a survey entitled “The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research,” which questioned 1,133 black, white, and Hispanic adults about their possible participation in medical research and their associated fears. The survey showed no measurable difference by race in participants’ willingness to participate in medical research. However, black men and women were nearly twice as likely to report the fear of being used as a “guinea pig.”

I had no idea whether Mr. Tate knew anything about the Tuskegee experiment, but his fear was real. It had kept him from seeking help when his symptoms first appeared, and now I dreaded what the result of that might be. I did my best to reassure him that my only intention was to discover the source of his pain and help him feel better.

“Mr. Tate, I’m here to help,” I said. “You remind me of my father, and I’ll give you the same care that I’d give him.”

With a tongue blade in my hand, I asked him to open his mouth. I took a look at his teeth, gums, and the back of his throat. As soon as he said “Ahh,” I could see that the entire left border of his tongue was eroded. It appeared as if small bites had been nibbled out, and the color had changed from pink to dark brownish red. Next, I examined his neck. There, I felt a hard, golf ball–sized lump to the left of his Adam’s apple.

“Okay, we need to order some tests,” I said. I spoke slowly and clearly. It was important to me that he fully understood the steps we were about to take.

“What do you think is going on?” he asked, his eyes probing mine for answers.

“I’m not totally sure,” I responded. “That’s why we need to order the tests.”

Mr. Tate sighed; it sounded as if air was being let out of a balloon. “There you go. You doctors always want to find a way to drive up the bill. I don’t want any tests.”

Michelle, who to my amazement had been entirely quiet for the last several minutes, chimed in: “Can’t you just give him some medicine that works, so we can get out of here?”

“I assure you the tests are necessary,” I said, writing on his chart my orders for blood work and a radiology study. “It’s the only way to find out exactly what’s going on. I understand your situation and I certainly don’t want to waste your time.”

Mr. Tate nodded reluctantly.

I left the room and asked the clerk to put in an order for a CAT scan of Mr. Tate’s neck. (Most people are more familiar with X-rays. By comparison, if an X-ray is like regular TV, a CAT scan is high-definition TV. It allows doctors to visualize the bones, muscles, blood vessels, and any abnormalities of a body part. In Mr. Tate’s case, I was hoping the CAT scan would reveal the source of the lump.) When I returned to the room, Mr. Tate was sitting on
the stretcher, and Michelle was pacing. Both looked intense and worried.

“You’ll be going over to radiology very shortly,” I said, trying my best to explain things simply and keep him informed at every step.

It wasn’t long before an orderly arrived with a wheelchair to take Mr. Tate for the scan. The study was completed in about twenty minutes, and I noticed him in the hallway as he was being wheeled back to the department.

“Hey, you’re back,” I said. “How did it go?”

“Not bad,” he responded. “It was quicker than I thought. How long before you have my results?”

“Not long. I have to wait for the radiologist, the doctor who reads the films, to take a look. But I’ll let you know as soon as I hear.”

“Okay, then.”

Half an hour later, the results began coming through the fax machine. I’d prayed my suspicion was wrong. Unfortunately, it wasn’t.

The paper read: “Cancerous necrotic lymph nodes.”

The cancer had probably spread from the vocal cord area of his throat and now involved the mouth and lymph nodes, too, which explained the raspy voice. The poor guy most likely had been living with it for a while. In a way, my job was done. I had discovered what was wrong. But for him, the ordeal was just beginning. I dreaded breaking the news to them. Moving slowly to room 5, I thought to myself,
This isn’t what I signed up for when I decided to go to medical school
.

Once inside the room, I moved toward the familiar worn green chair in the corner, deliberately avoiding eye contact with both Mr. Tate and Michelle. I had to take a seat for this one.

“Okay, I have your results,” I said.

Mr. Tate looked up, and I stared directly into his sunken eyes. At this stage it’s always better to come right out and say it, instead of prolonging the agony. “I’m sorry, Mr. Tate, but the CAT scan shows a very progressive form of throat cancer.”

There. I’d said it. Now I steeled myself for one of the most difficult parts of delivering this kind of news: the patient’s reaction.

Silence followed. The news had knocked the wind out of Michelle for a second. She screamed and then looked at me with a mix of fear and anger. She seemed to be trying to process the diagnosis: “What does that mean?”

Mr. Tate immediately diverted his attention to her. “Sweetie, don’t worry. I’m going to be all right.”

“No, Daddy, I want to know!”

I was amazed. The man had been hit with the worst news of his life, and his first reaction was to comfort his daughter. Michelle took a deep breath and asked again, more calmly: “What does all of this mean?”

I began to explain, “The treatment—”

She cut me off: “Is my daddy gonna die?”

The question stunned me, but I should have guessed she would be direct.

“Well, as I was about to say, the treatment for this kind of cancer is a tracheotomy and an artificial voice box, along with both radiation and chemotherapy to manage the tumor. It is somewhat difficult to estimate how long your father has to live. Depending on the stage of the tumor, it can range from months to years. I have to be candid with you. I believe that due to the mouth and lymph node involvement, the cancer has already spread, which isn’t a promising sign. At this stage, his life expectancy depends on how well he responds to treatment.”

“You still haven’t answered my question,” Michelle persisted. “What I’m asking is, is my father going to die?”

I never like playing God, telling a terminally ill patient or that patient’s loved ones how much time is left. I’ve seen patients live far beyond any of the experts’ time estimates, and I’ve seen others die when I thought they would live. But I also believe that my patients deserve to know as much as I can tell them about what they are facing.

“Not immediately,” I responded. “My best guess is that he has a year or two, maybe three. But no one can say for sure.”

Michelle wiped her tears. “My God, Daddy, why didn’t I bring you sooner?”

“Baby, you know how I feel about hospitals and doctors,” he answered. “Plus, I don’t have insurance, and I already depend on you too much. It isn’t your fault.”

Something exploded in my mind. I was suddenly furious. America, a nation with incomprehensible wealth, did not provide affordable healthcare for everyone—an issue that the administration of President Barack Obama has fought hard to address. While there are free community-based clinics, the demand so exceeds the need that patients sometimes have to wait upward of six months for an appointment. Mr. Tate was dying for many reasons; his lack of medical insurance shouldn’t have been one of them. The man hadn’t been to a doctor in years. His cancer most likely would have been detected earlier if he had been under the care of a primary doctor. But his fear of doctors, coupled with his lack of insurance, had stood in the way of him getting the help he needed. Of course, his smoking habit didn’t help either. But my guess is that there weren’t too many people around him who enforced the need for him to stop. That’s a doctor’s job; that’s my job. At this stage, though, the damage had been done, and it was irreversible.