Managing end-of-life care is never straightforward. It forces a physician to recognize, and sometimes to adjust, his most fundamental professional and personal values. It often involves competing ethical imperatives—patient autonomy, physician beneficence, social justice—that are sometimes in direct conflict. When I think of how Joe Cimino succumbed, I remember what Rose Crespo, the elderly woman with terminal heart disease who asked me to help her die, told me: “My husband said the hardest thing to do is to die; I always thought it would be easy.”
SEVEN
Hatching a Plan
The bleeding always stops.
—Norman Shumway, cardiac surgeon, Johns Hopkins University School of Medicine
Every death leaves a residue, and my patients’ deaths were no exception. Like waves lapping at a shoreline, they took away as much as they left behind. Some succumbed quickly, while others lingered painfully. Heart failure was the common final pathway, yet each death was unique. And each affected me in its own way.
An old man in the CCU. A few days into his hospital stay, he whispered to me, “I am going to die here,” as if letting me in on a secret. I tried to reassure him; on the scale of disease I normally treat, his case was relatively mild. But then he became sicker. His bloated legs dripped fluid from the pores, soaking his bedsheets and puddling on the tile floor. His blood pressure dropped. He became delirious. I was perplexed by the precipitous downturn. What did my patient know that I did not? After several days of keeping around-the-clock vigil, his wife could no longer bear his suffering and requested palliative care. Several hours before he died, groggy from morphine, he managed to summon a few moments of lucidity. Gripping his wife’s hand, he said to her, “You’re doing the right thing.”
A few weeks later, a frail middle-aged woman. She told me calmly on morning rounds that she had a feeling she was going to die that day. Several hours later she complained of belly pain, and when a tube was inserted through her nose and into her stomach, old digested blood—resembling coffee grounds—from a gastric hemorrhage came up. Her blood count plummeted, and within a few hours she had spiraled into shock and multiorgan failure, even before we could get a CT scan to see what was going on.
I don’t know how these patients were seemingly able to predict their own demise. They experienced a feeling of impending doom. Perhaps high levels of circulating adrenaline caused a reaction similar to a panic attack; I don’t know. But I quickly learned to take such intuitions seriously.
Morbid instincts sometimes derive from other sources. In 2007, The New England Journal of Medicine told the story of a cat named Oscar who lives in a nursing home in Providence, Rhode Island, and seems to have an uncanny sense for when elderly residents are about to die. He goes to their rooms, curls up beside them—even those residents in whom he has previously shown little interest—and purrs. Staff members at the facility witnessed this behavior in the deaths of at least twenty-five patients. “This is a cat that knows death,” one doctor said. “His instincts that a patient is about to die are often more acute than the instincts of medical professionals.”
The disease always wins in the end. You don’t always know how death is going to occur—sudden arrhythmia, cardiac failure—but it is written in the epidemiology, the statistics. The course is often tragically stereotyped; there are few surprises and no miracles. Knowing that the outcome is ordained, that it won’t change despite anything you do, can actually sometimes be liberating. It relieves some of the pressure to follow established protocols, allows you some latitude to put more humanity into the decision-making. You know the end result; you just don’t know the precise path. And you become humbled by the vastness and mystery of it all.
One misty evening in December 2005, a few weeks after Mr. Cimino died, I phoned my father. I had just finished my daily jog. I was running a lot that winter, fighting an enveloping gloom. After exercise I felt different: more confident, relaxed, alive. In physics, kinetic energy must be added to get a particle out of a potential energy well, and so it was with me and running. In my office I’d sometimes run furtively in place with the door closed before making rounds. The relief was dose dependent. If I could manage twenty minutes, it would be six hours before I needed another fix.
The trees in Central Park that evening were glistening, as if a glaze had been applied. Leaves had collected in heavy, sodden piles; an occasional single leaf would get whisked away by the light breeze. Warblers were calling out mournfully in the distance. The anxious thudding in my chest had by then become a familiar sensation.
“Our trip to India was amazing,” my father told me as I ambled down a paved path near the Great Lawn. “I was honored in so many places. Keynote lectures, plenary lectures—”
“What did you talk about?” I asked, interrupting him.
“Oh … biotechnology,” my father replied. “Genetic enhancement. Plant breeding. But I also talked about India and how the country is doing, and what we can do to bring it to the level it deserves.” My father’s patriotism for his homeland was leavened with a certain ambivalence. His hatred of Western imperialism, still central to his politics in the postindependence era, was eclipsed only by his disdain for India’s continuing fecklessness and third-world corruption.
“I got some bad news, though,” my father quickly added. “You know my cousin Vikas? You may remember him. I couldn’t see him this visit. Then I got a call. He died. Just like that.”
Like most of my father’s relatives, Vikas was someone I had apparently known as a child growing up in India but had no recollection of ever meeting. “That’s horrible, Dad,” I said, stopping momentarily.
“Yes, well…” His voice trailed off.
“How did he die?”
“I don’t know. Must be something.” For a moment he was silent. “All my friends are dying off,” he went on. “I went to see someone in Delhi, a professor, a class fellow. He was dead, too. Sometimes I think I’d better clear my desk and get rid of all these papers.”
The thought of my father’s eventual death—that such a terrible experience was in store in my future—erased the good feeling from the run. I hesitated. “Are you afraid of dying?” I asked.
“I am not afraid, but I don’t want to die,” he replied without missing a beat. “Too much to do.”
I had to smile. So typical of my father, I thought. Even his existential fears were rooted in real-world practicality. “So what do you think comes after?” I asked. “Do you live again or is this it?”
“As far as I am concerned, this is it,” he replied grimly. “I don’t know if there is anything afterward. There might be. No one knows.”
The light was shrinking fast. A group of teenagers were sitting on a massive boulder, giggling and blowing smoke into the haze.
“Are you satisfied with how your life has turned out?” I asked.
“Of course!” my father replied, as if it were the most ridiculous question. “Good career, good children, a decent wife. Success is judged not by the position you reach in life but by the obstacles you have overcome. When my father died, we didn’t have electricity. I studied under streetlamps. Now if I sent you the letters I get after my talks, they would amaze you.”
My paternal grandfather’s unexpected death when my father was thirteen years old opened a gaping hole in his life that had never been filled. Dad called it his greatest loss, one that left him rudderless and impoverished and undoubtedly contributed to his lifelong struggles and failures. When I was growing up, my father’s moods determined the atmosphere. We could laugh only if he was happy. The rare gaiety in the house was usually my father’s.
“But what’s the point if this is all there is?” I pressed him.
“Your reputation will live on.”
“But you won’t know about it, so what’s the point?”
“Still”—my father cleared his throat, a sign he was uncomfortable—“what you do lives on.” I knew the talk wasn’t going much further. Dad’s intellectualism was secula
r. He never gave much credence to an inner metaphysical life.
Changing the subject, he asked about my job. Things were getting busier, I told him. However, money was still tight. And Sonia was still pushing me to consider private practice.
“Live within your means,” my father intoned with his usual shopworn wisdom. “And try to be happy.”
“I am happy, Dad,” I replied, forcing myself to sound cheery.
“Okay, that’s good,” he said, though he sounded skeptical. “I don’t know how long your mom and I will be around. We just want to see you settled.”
* * *
That spring the most dreaded announcement from Sonia was “We have to talk about our finances.” It produced an almost instantaneous tightness in my chest, a jackhammer pounding, and for good reason. Our expenses were outpacing my hospital salary, and whatever little savings we had—wedding money, a bit saved up from our residencies—was dwindling rapidly. Sonia’s father had offered financial help, but I had turned him down—at least at first—hoping to maintain the semblance of self-reliance. (And once I said no, the refusal assumed its own momentum because I felt that if I relented, he might think I had been insincere all along.) “I just want you guys to be comfortable,” he said on more than one occasion, urging me to consider his tender. “I can explain the way of the world. Maybe you think it is hocus-pocus, but how can you say a song is bad if you don’t listen to it?” Eventually I was forced to give in, but I hated to do it. I wanted to show that I had married Sonia despite her father’s wealth, not because of it.
The arguments over money took a toll, eroding my peace of mind. I started going to work later and later and holed myself up in my office to call private cardiologists, who (perhaps self-servingly) told me there wasn’t much money left in private practice anyway, unless you were willing to do unnecessary testing. My father was adamantly opposed to private practice, too. Apart from the insecurity—medical practices were failing all over the Northeast because of rising expenses and decreasing reimbursements—I’d have to give up my job, an academic title (assistant professor of medicine), and a certain degree of status. Did I really want to become another private practice grunt, overtesting, kissing ass for referrals, fighting insurers to get paid, depressed that medicine wasn’t the way I’d envisioned it in medical school?
Things came to a head when my parents visited Long Island in the early summer of 2006. As usual, I drove from Manhattan to see them, this time without Sonia and Mohan. We spent the morning at a Hindu temple in Hicksville, where we attended puja. Priests with shaved heads and powdered faces were clanging bells and chanting fervently. Sanskrit syllables were shooting off their lips like bullets. I knelt on the stone floor and, for the first time in at least a year, whispered a prayer. As with many people, my relationship with God was complicated, ranging from quiet skepticism to outright atheism, with occasional forays into foul-weather faith.
Back at Rajiv’s house, the mood was somber. The following day my parents were flying back to Fargo, North Dakota, where my father worked at a government agricultural research station, and we were all waiting on tenterhooks for him to bring up my career plans. In the kitchen, I rinsed out a glass and let the faucet run for a few seconds, checking the temperature of the stream with my finger. Then I filled up the tumbler, gulped down the water, and slammed the empty container on the counter. “You look so much like Dad when you do that,” Rajiv said, watching me. “It’s unreal how much you guys are alike.”
In the living room, my parents were sitting together on the plush sofa, their dry heels propped up on the coffee table. The window blinds were closed, though it was midafternoon, and a lamp bathed the room in a depressing glow. My father was looking over some pictures of my brother’s children. “What happened? You didn’t have color?” he said.
“Black-and-white is prettier,” my mother said scoldingly.
“I don’t know,” my father replied, unimpressed. “I prefer color.”
I sat down to watch television. “Did I tell you that your mom went for blood tests?” my father said as I flipped through channels. “They were normal.” Though my father’s blood pressure was now better controlled since his stroke scare two years prior, my mother’s pressure had become labile, and the medications for it were making her fatigued and her joints achy. My father had been asking why doctors couldn’t fix the problem. He kept telling me and Rajiv to arrange a conference call. I had told him it wasn’t that simple.
“All the tests were normal,” my father repeated.
My eyes stayed glued to the television. “So what does that mean?” I said.
“The X-ray was normal, too,” he added.
“So what did Dr. Williams say?”
“She said she doesn’t know what’s wrong. She suggested taking that medication you suggested.”
“Ibuprofen.”
“And she said if it doesn’t get better, to go to a rheumatologist.” He said the last part with a flourish, as if he had just made his point. “These doctors will shunt you back and forth. They don’t have a clue what’s going on. Still, she sent us a bill—”
“So what do you expect, Dad, that a doctor shouldn’t get paid for seeing you?”
“That’s not what I said. I just don’t think that should be her primary consideration.”
“What makes you think it is?”
“Many doctors are more interested in money than health! Remember that doctor who wanted to cut my foot? By God, I would have lost my foot! Now I do exercise, and I am completely cured.” He looked at my mother, who stared at him blankly. “Dr. Williams gave your mom the results but didn’t even write a report! She doesn’t want to write anything down. She will protect herself first.”
“Whatever, Dad.” I was in no mood to argue against his paranoia.
“She kept us waiting for forty-five minutes.”
“So?”
“That means she is an irresponsible doctor!”
“Not necessarily. I am always running late.”
“She never once addressed me as Dr. Jauhar.”
“So what?” I cried.
“She saw your mom for two minutes and said she needs an antidepressant. Talk to the patient first! If I had listened to her doctors, she would have been on an antidepressant ten years ago.”
“How do you know you made the right choice?” I shot back angrily. “Maybe she would have had a happier ten years.”
“Antidepressants will make you happy?” he said incredulously. “You think a medication will change her basic nature? Like you, she is not a happy person.”
The wrangling elicited a half smile from my mother. She almost always deferred to my father in such conversations unless she felt he had crossed a line. We remained seated in silence while I seethed. My brother popped in and out. He could never sit still when my parents were around.
My father leaned forward, arms crossed. The veins in his hands were prominent. “So what is going on?” he finally said.
“With what?” I replied, feigning ignorance.
“With what? With your job!” As the patriarch of a traditional Indian family, he took it as his right to speak out about our problems, no matter how uncomfortable it made us.
“I already told you, I’m trying to figure things out.”
My father leaned forward, hiking his fraying trouser bottoms over his hairy shins. “Don’t do private practice,” he whispered ominously. “We know so many doctors in Fargo who are having a rough time. Vijay Malhotra joined an oncology group that cheated him out of so much money. Now he is doing shiftwork in Boise on the weekends. His wife was crying to your mom.”
My father’s horror stories didn’t carry much weight because I had heard enough of my own, about senior practitioners taking on young associates, exploiting them for cheap labor, and then firing them when they were up for partnership. I remembered a private cardiologist at a medical school mixer bragging about hiring fresh graduates, running them into the ground for two years, then letti
ng them go and enforcing a no-compete clause in their contracts if they tried to set up offices nearby. He had done this many times.
“I have to pay my bills,” I said quietly.
My father turned to my mother with a disbelieving look. “I think he is obsessed! He never used to be so money-minded.”
“What is he supposed to do?” my mother cried in Hindi, rising to my defense. “He can’t cover his expenses!”
My father opened his briefcase, took out a notepad, and with my input wrote down a list of outlays: rent, nursery tuition, car, insurance, parking, gas, tolls, taxi, cable, cell phone, groceries, credit card, and miscellaneous. Then he wrote down my monthly take-home pay. I was about $2,000 short a month, a deficit that Sonia’s father had been covering.
“What did I tell you?” I said angrily as my father studied the paper. He shook his head in disbelief.
Rajiv, looking bored, urged us to come out with him to the backyard. My father and I followed him out the sliding glass door, up the sloping lawn, past the swimming pool, to a stone patio behind the tennis court abutting the neighboring horse farm, where we watched him shoot baskets.
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