Doctored (33 page)

Chester was diagnosed with heart failure when he was eighteen years old, but as is so often the case with this disease of manifold etiologies, we never figured out how he got it. He was a student at a community college in Brooklyn when I met him, though he dropped out when his condition worsened. He had short, curly hair and gold wire-framed glasses that rested on the bridge of a wide nose. Despite the setbacks, he was a model patient, coming in diligently with his mother for weekly appointments, eliminating salt from his diet, taking his medications regularly. “May God bless you,” his mother often said to me. “You are doing such a wonderful thing for my son. You will be rewarded.”

As Chester's condition deteriorated, he started going frequently to the emergency room with abdominal pain. “I was having the dry heaves,” he once explained when I admitted him to the hospital. “Sometimes I wonder whether it's psychological. My stomach gets full, the whole abdomen gets hard, like I had nine meals,” a result, no doubt, of fluid buildup caused by his weakened heart.

Eventually I referred Chester to a transplant center in Manhattan, where he went for evaluation and frequent follow-up visits. He had to lose weight to qualify for a heart transplant, and by the time he did, his lungs had become so waterlogged that he was suffering from severe fatigue and shortness of breath.

Two weeks before his twentieth birthday, Chester attended a weeklong religious retreat with friends in Kentucky. His doctors, including a transplant cardiologist, had strongly discouraged him from going, but he had insisted. He left by car on a Sunday. The following Friday, he died alone in a hotel room in Lexington.

His mother called to tell me the news. Voice breaking, she thanked John and me for treating him over so many months. She invited us to the funeral.

The church, in Jamaica, Queens, resounded with lilting hymns as we arrived. Inside, men were dressed in cream-colored suits and women in Sunday finery. An organ was playing eerie music in the high-ceilinged chamber. Two men stood in front of the coffin, which carried a portrait of Chester wearing a pinstriped suit, looking debonair, unlike the debilitated state in which I remembered him. As we took our seats, a man in a yellow suit got up and started tap dancing, exhorting the crowd to come up and dance with him. A woman carried a shrieking toddler to the back of the room.

Soon people were clapping on tambourines and playing harmonicas in fast, crazy rhythms. Men came up to praise Chester. “He walked with God … He is in a better place … He never did nothing the wrong way.” One person confirmed what I'd always known about Chester: “He believed in order and had no tolerance for cutting corners.” A few folks were dancing wildly as Gospels were shouted. “Speak praise of the Lord,” someone bellowed. “You can hear me say it now: the Almighty himself will lead you down the path of the true and the righteous.”

Chester's uncle, a bishop, stood up and delivered the main eulogy. In soaring oratory he declared that Chester had had an unshakable conviction that God would save him. “Even in his worst sickness, when he had to tell his brothers to give him a few minutes because he could not get up from a chair—even then he had faith.” The audience roared its approval.

“Ticktock!” he screamed into a microphone, which reverberated in dissonant feedback. “Your time is coming, too. Keep on with the insults, the small-minded bruises and disputes. Ticktock! Your time is coming, too.” Murmurings swelled to shouts of support. Someone opened the coffin. Chester lay in repose, his skin gray, his eyes closed. A shiver spread across my chest.

“Ticktock!” Again and again he shouted these words as I sat transfixed, my eyes filling with tears at the spectacle. I thought of my trip to Fargo and all the silly acrimony with my father. What was the point of it when our time together was going to end anyway? How strange this existence, I told myself. It is the finitude of life that keeps us going, and yet it saps meaning from our lives if this is all there is.

The sermon then took on a more subdued tone. The uncle recalled how Chester had been adopted as an infant. (I had not known.) He said Chester had taught himself Hebrew and liked being called T.R., for Temple Rabbi. (Another thing I hadn't known.) Then he said, “Forgive me, but I want to focus on the lighter side of my nephew.” He told how Chester enjoyed wearing stylish clothes. He recalled Chester's youthful indiscretions. “Chester loved White Castle cheeseburgers.” I did a double take: Cheeseburgers loaded with sodium? Chester had always denied such improprieties to us. “And chicken rolls with soy sauce. Whenever he was with me, we would always stop for takeout.”

I looked at John. He had the same disbelieving look I must have had.

“Chester did not like taking his medications,” his uncle went on, as if speaking to me. “I'd remind him to do it, force him to, but he would avoid it because they didn't make him feel good.” I shifted uncomfortably in my seat. “And you all know he never wanted a heart transplant. He never would have accepted one.” (That was news to me, too.)

Afterward, John and I were asked to say a few words. John recalled how much Chester loved pens, how John always gave him a fancy pen when he came to see us. (I'd had no idea.) He said he believed that God had put us on this earth for a reason and that Chester had fulfilled his purpose in this world. Then it was my turn. As I walked up, I thought about the signs I'd missed while taking care of Chester. I thought about how easy it is to ignore social milieu, habits, the sorts of things that make a patient into a real person—and vice versa. Undoubtedly, such information would have helped me treat Chester while he was alive. Standing behind the podium, I told the crowd that Chester was brave and vibrant. I called his death a tragedy. Then I thanked his adoptive mother for inviting me. I had learned so much that day.

After the service, John and I went to a nearby deli for lunch. “There is always someone who has it worse than you,” John said after we sat down. “No matter how bad things get.”

I nodded and took a bite of my pastrami sandwich. I was hungry.

“People don't take the long view,” John went on, uncharacteristically philosophical. “We worry about so much trivial stuff.”

I smiled at John's gravity, but he was right, of course. We so often waste our borrowed time. I had seen so much death the past four years, seen so many patients come and go. A few weeks prior, when I had been in line at the hospital deli to buy an iced coffee, a woman in front of me paid for her drink, picked up a laptop computer and a sheaf of papers, and turned to me in my white coat and said, “He's probably dead by now, my husband,” and walked out. It had been overwhelming at times—I could never forget the horrible ways by which Joseph Cimino and Lily Dunhill had died—but I had become almost inured to it, and I didn't feel so afraid of it anymore. I often thought of a letter I'd received from the mother of another young patient of mine, a man in his early twenties who'd been born with severe congenital heart defects—a large hole between the upper cardiac chambers, an incompletely formed left ventricle—requiring multiple surgeries. She'd written:

All of life is snatched from death. Our responsibility is to fully taste it. I believe that we each live many lifetimes, that none of us is a stranger to the other. I believe that temporal time, as we perceive it, is an illusion. And so the part of me that is not the grieving mother knows deeply in her heart that the duration of this lifetime of Jack's is not what really matters. And that any attempt to cling to it only ends in despair.

It was impossible, with all the death I had witnessed, not to think about how I was eventually going to die. Was I going to cling to life in desperation? Would death happen suddenly, as for my grandfather? Would it drag out, with me helpless at the epicenter, like Lily Dunhill? Or would I accept it with equanimity like Leonard Sullivan? Sullivan, a patient I took care of for almost three years, loved the sea, loved to sail his little catboat on Long Island Sound. “I must go down to the seas again” is the beginning of “Sea Fever,” a poem his son, a college professor, told me he recited countless times, sometimes to express his sense of awe about the sea and sailing ships, sometimes to express his frustration that he was living in a home in suburbia rather than leading the sailor's “vagrant gypsy life.” When he entered the terminal phase of his disease, his wife insisted on the most aggressive treatment possible, but Sullivan rejected it. After he died, his son wrote this letter:

Near the end of his life, when he was no longer responsive, when the “death rattle” began in his breathing, I read “Sea Fever” to him. As soon as I started reading the poem he rose up in bed and started turning his head from side to side and up and down. What I witnessed I will never forget. We had been talking to him for the last several hours but he seemed not to hear us. But I know he heard that poem, something familiar, something from his past, something etched in his memory and dear to his heart. What I believe, what I want to believe and yet, what I do believe, is that hearing this poem took away my father's fear of death, and that this is the reason why, just five minutes after reading him the poem, he passed away. And what I want to believe is that he passed away, beyond the horizon, on a tall sailing ship, listening to the song of the wind, the seagulls crying, amused by a merry yarn from a laughing fellow rover, feeling the kick of the wheel and the shaking of the sails, living at last that vagrant gypsy life for which he longed so intensely his entire life, and finding, at the end of life's long trick, a quiet sleep and a sweet dream.

 

SIXTEEN

Follow the Money

I am dying from the treatment of too many physicians.

—Alexander the Great

Pia was born on July 1, the date that medical school graduates start their internships. When people ask me if she is “Daddy's girl,” I am reminded that human relationships are constrained by biology. Girls so often fancy their fathers. Even my sister, Suneeta: though she spent so little time with my busy father growing up, she still adored him. Dad always says how wonderful it is to have a daughter. Girls are more sincere, he says. And loyal.

Our baby girl and her accoutrements quickly swallowed up the little remaining space in our apartment. We put her crib in Mohan's room and had him sleep with us, throwing off his schedule, which started to conform more and more to ours. It was a subpar solution, but there was little else we could do. The hourglass had turned, and Sonia and I both knew our time in Manhattan was coming to an end.

The prospect of suburban living created a peculiar polarity in my mind. I feared the loneliness and insularity of the suburbs—was there anything more depressing than the manicured patch of lawn in front of the local bank?—and yet my remembrances of my suburban upbringing were mostly fond ones. (Or had I just filtered away the terribleness?) I'd grown up in Southern California, at the edge of the desert—a wasteland, and not just because of the cacti—and though I now fancied myself an urban guy, I had vaguely happy memories of my childhood: dirt biking on the dunes behind the train tracks, catching crickets in the backyard at dusk, playing touch football on the street at night, scuffing my knees on the gray asphalt.

Of course, it was a very different time from today. There was little parental supervision; mothers and fathers didn't feel compelled to be their kids' best friends or social secretaries. Nowadays there is such little tolerance for ignorance about our children's whereabouts, but back then, at least in our middle-class neighborhood, it was the norm. Most of the moms had full-time jobs. My friend Billy's dad worked nights at the printing press, so though he stayed at home during the day to supervise, he slept most of the time—he was morbidly obese and had sleep apnea to boot—and we were left largely to our own imaginations. We'd thumb through Stevie's dad's collection of
Playboy
s and
Penthouse
s. We'd ogle our friend Sammy's older sister, Jessica, sunbathing topless (or so we wanted to believe), through a hole in the fence. We scaled a hundred feet up the exterior of the clock tower at the local university. Once, we even considered jumping off Billy's roof into his swimming pool, desisting only after Carl, a kid from up the street, deemed it a bad idea. But moving out of the city wasn't about nostalgia or reliving a lost time or providing a more natural place for my children to grow up. It was essentially about a lack of space, and the lack of money to buy more.

*   *   *

Because insurers had been slashing reimbursement rates, that summer my LIJ colleagues and I were told we had to increase our “relative value unit” collections, or RVUs (the currency of medical payment). With all the cuts in reimbursements over the prior few years, academic medical departments across the country had suffered sharp downturns in revenue. Some physicians had responded by upcoding—claiming greater complexity in patient encounters than was in fact the case—and fraud investigations at some centers were under way. Obviously I wasn't going to upcode, so what the department's directive meant for me on a practical level was that I had to see more patients. I reduced the time in my schedule earmarked for new patients from sixty minutes to forty and for established patients from thirty minutes to twenty. With administrative tasks, conferences, teaching, chart reviews, and letters and phone calls to physicians, hospitals, and pharmacies increasingly gobbling up my day, I began to rush through visits, hurrying patients along in subtle and not so subtle ways. I stopped making small talk. I interrupted histories after a few seconds to get patients on point. I even urged my patients to breathe a little faster when I was listening to their lungs. “Doctor, I just want to know…” “One second, ma'am, please, one second…”

With the added density in my schedule, I started to cut corners. I discovered that one of my patients had herpes zoster—shingles—which would have fully explained her chest pains. The ER didn't pick up on it, and neither did I or two cardiology fellows who examined her. She noticed the telltale rash only while she was bathing, after undergoing a costly and unnecessary cardiac workup. “It's pathetic,” I wrote in my journal. “We don't open our eyes, and what did I do with the next patient? I still didn't disrobe him to examine him properly. I can't believe I've become like this. I hate myself for not trying harder.”