Doctored (19 page)

“Well, I guess that's it, then,” she said after a minute, as if she had finally crossed over the shadowy boundary to acceptance. She made to leave, then turned back to me. “There was so much fluid in his belly, Doctor. If we had come earlier, would he still—”

I assured her that it would not have made a difference.

“Just look at him,” she said, pointing at her husband from the doorway. “His face is so swollen.” The straps of the oxygen mask were digging into his cheeks. “Why does he look like that?” I told her that his kidneys had stopped working, so any fluid going into his body was accumulating there.

“How long, Doctor?” she asked. “Will it be today or tomorrow?” I told her it would happen within a few days. “That's okay,” she said, stifling a sob. “I will be with him. I will stay with him till the end.”

Before Cimino was discharged home with hospice arrangements, a cardiology fellow came by and deactivated his defibrillator. At that point there was little reason to keep it on. Cimino was suffering terribly, and a sudden arrhythmia would have been a merciful event. I thought of my own grandfather's death in New Delhi in 1995, on a September morning after his eighty-third birthday. He woke up complaining of abdominal pain, which he attributed to an excess of food and Scotch the night before. After a few minutes my grandfather bellowed a loud groan and went unconscious; just like that, he was gone. He almost certainly had a massive heart attack, but that wasn't what killed him. It was the ensuing arrhythmia—the ventricular fibrillation—that prevented his heart from sustaining blood flow and life. When I talk to my mother about his death, she says she is sad that he died so suddenly. But she is thankful, too.

I often wonder how hard I should push patients with severe heart failure to get implantable defibrillators. When it comes down to it, perhaps the biggest sacrifice patients make when they get a defibrillator is the uncertainty over how they're going to die. Sure, defibrillators prevent sudden death, but they also take away the sudden death option, which for many patients has a romantic, if not practical, appeal. Defibrillators are also enormously costly, $20,000 or more each. In the United States, more than five million patients have heart failure, and half a million new cases are diagnosed each year. If even a small fraction of these patients were to receive this device, the costs could reach billions of dollars. It makes sense to implant a device in the chest of a fifty-year-old with a good life who is providing service to society, but what about a seventy-year-old debilitated by heart failure and living in a nursing home? That patient might benefit the most in terms of reducing the risk of life-threatening arrhythmias, but would also probably get less benefit in terms of “quality-adjusted life-years.” Advances in medical technology, especially end-of-life treatments, raise all sorts of moral questions. Who should get care? How much is society willing to pay? Are some lives “worth” more than others? All a reminder that though medicine provides awesome technology, it does not tell us how to use it.

I received a message from Mrs. Cimino about a week later asking me to call her. I got through to her husband's voice mail. “Joseph Cimino … is not available. At the tone, please record your message…” I hung up and called an alternate number.

When I finally reached her, she said, “The hospice people have been amazing. They are doing for money what his family won't do for love. Don't get me wrong—our sons are very close to their father. But one is in Minneapolis, and the other is in the hospital with an infected foot. He wants to be here—he loves his dad—but he just can't.”

She cleared her throat. “Meanwhile, I just”—I could hear her sobbing—“hate to see him suffer. Anyway, Doctor, I appreciate your call. I don't know what I was trying to achieve when I called you. Maybe there was something else we could do.”

Joseph Cimino died the following morning. His wife called again the next day after he'd died. “I want to thank you for everything you've done,” she said, sounding relieved. “There is no doubt in my mind that you added months to his life, and for that I will always be grateful.”

I asked her if there were any lessons she had learned that she could share with me. With so many of my patients dying, it was hard not to think about my parents'—and even my own—mortality. She did not immediately respond. “Just that life is finite,” she finally said. “No new lessons, I suppose.” I asked if she believed in an afterlife. “No,” she replied. “I'm an atheist. If there were an afterlife, he would have gotten in touch with me by now.”

In the United States, patients with terminal illnesses often spend a large part of the end of their lives in the hospital. At NYU Medical Center, where I trained, patients spend nearly thirty days of their last six months inside the institution. Eighty-five percent of Americans die in a hospital or nursing facility, and a third of all health care dollars is spent on patients in their last year of life. Nearly every doctor I've talked to recognizes that this wastes precious resources and prolongs suffering. But they—I—have not been taught a different way.

Hospice is one alternative. The word “hospice” derives from the Latin word
hospes
, which means “to host” a stranger. The modern hospice movement started in 1967, when Dame Cicely Saunders, a nurse, opened St. Christopher's Hospice in London. Saunders formulated three principles for easing the process of dying: relief of physical pain, preservation of dignity, and respect for the psychological and spiritual aspects of death. In the beginning the majority of hospice patients had cancer, but in recent years cancer patients have actually been a minority. (In contrast, the number of patients in hospice with end-stage heart failure has doubled.) Today pain, nausea, and shortness of breath are properly recognized as scourges of the terminally ill and are aggressively treated. The number of American hospitals offering palliative care, which spans the spectrum from simply providing end-of-life counseling to full hospice care in the facility, has nearly doubled since 2000, growing to nearly fifteen hundred programs—that is, the majority of all hospitals. Perhaps the most surprising finding from these programs is that hospice patients live a month longer on average than similar patients who do not receive such care.

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.