Being Mortal: Medicine and What Matters in the End (23 page)

“We started him on hospice care,” Block said. “We treated his choking and kept him comfortable. Eventually, he stopped eating and drinking. He died about five days later.”

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SUSAN BLOCK AND
her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or traveling or enjoying chocolate ice cream. Few people have these conversations, and there is good reason for anyone to dread them. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.

I spoke to an oncologist who told me about a twenty-nine-year-old patient she had recently cared for who had an inoperable brain tumor that continued to grow through second-line chemotherapy. The patient elected not to attempt any further chemotherapy, but getting to that decision required hours of discussion, for this was not the decision he had expected to make. First, the oncologist said, she had a discussion with him alone. They reviewed the story of how far he’d come, the options that remained. She was frank. She told him that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor. She had looked for experimental therapies, and none were truly promising. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family.

He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. Gradually, he began to ask about what would happen as the tumor got bigger, what symptoms he’d have, what ways they could try to control them, how the end might come.

The oncologist next met with the young man together with his family. That discussion didn’t go so well. He had a wife and small children, and at first his wife wasn’t ready to contemplate stopping chemo. But when the oncologist asked the patient to explain in his own words what they’d discussed, she understood. It was the same with his mother, who was a nurse. Meanwhile, his father sat quietly and said nothing the entire time.

A few days later, the patient returned to talk to the oncologist. “There should be something. There must be something,” he said. His father had shown him reports of cures on the Internet. He confided how badly his father was taking the news. No patient wants to cause his family pain. According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.

The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father that he needed to understand: time with his son was limited, and the young man was going to need his father’s help getting through it.

The oncologist noted wryly how much easier it would have been for her just to prescribe the chemotherapy. “But that meeting with the father was the turning point,” she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focused on being together, and it proved to be the most meaningful time they’d ever spent.

Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise. This certainly is a factor. But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.

The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.

More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the incurably ill, is a train you can get off at any time—just say when. But for most patients and their families we are asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.

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SARA MONOPOLI HAD
had enough discussions to let her family and her oncologist know that she did not want hospitals or ICUs at the end—but not enough to have learned how to achieve her goal. From the moment she arrived in the emergency room that Friday morning in February, the train of events ran against a peaceful ending. There was one person who was disturbed by this, though, and who finally decided to intercede—Chuck Morris, her primary care physician. As her illness had progressed through the previous year, he had left the decision making largely to Sara, her family, and the oncology team. Still, he had seen her and her husband regularly and listened to their concerns. That desperate morning, Morris was the one person Rich called before getting into the ambulance. He headed to the emergency room and met Sara and Rich when they arrived.

Morris said that the pneumonia might be treatable. But he told Rich, “I’m worried this is it. I’m really worried about her.” And he told him to let the family know that he said so.

Upstairs in her hospital room, Morris talked with Sara and Rich about the ways in which the cancer had been weakening her, making it hard for her body to fight off infection. Even if the antibiotics halted the infection, he said, he wanted them to remember that there was nothing that would stop the cancer.

Sara looked ghastly, Morris told me. “She was so short of breath. It was uncomfortable to watch. I still remember the attending”—the covering oncologist who admitted her for the pneumonia treatment. “He was actually kind of rattled about the whole case, and for him to be rattled is saying something.”

After her parents arrived, Morris talked with them too, and when they were finished Sara and her family agreed on a plan. The medical team would continue the antibiotics. But if things got worse, they would not put her on a breathing machine. They also let him call the palliative care team to visit. The team prescribed a small dose of morphine, which immediately eased her breathing. Her family saw how much her suffering diminished, and suddenly they didn’t want any more suffering. The next morning, they were the ones to hold back the medical team.

“They wanted to put a catheter in her, do this other stuff to her,” her mother, Dawn, told me. “I said, ‘No. You aren’t going to do anything to her.’ I didn’t care if she wet her bed. They wanted to do lab tests, blood pressure measurements, finger sticks. I was very uninterested in their bookkeeping. I went over to see the head nurse and told them to stop.”

In the previous three months, almost nothing we’d done to Sara—none of the scans or tests or radiation or extra rounds of chemotherapy—had likely achieved anything except to make her worse. She may well have lived longer without any of it. At least she was spared at the very end.

That day, Sara fell into unconsciousness as her body continued to fail. Through the next night, Rich recalled, “there was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”

Her father and her sister still thought that she might rally. But when the others had stepped out of the room, Rich knelt down weeping beside Sara and whispered in her ear. “It’s okay to let go,” he said. “You don’t have to fight anymore. I will see you soon.”

Later that morning, her breathing changed, slowing. Rich said, “Sara just kind of startled. She let a long breath out. Then she just stopped.”

7
• Hard Conversations

Traveling abroad sometime afterward, I fell into a conversation with two doctors from Uganda and a writer from South Africa. I told them about Sara’s case and asked what they thought should have been done for her. To their eyes, the choices we offered her seemed extravagant. Most people with terminal illness in their countries would never have come to the hospital, they said. Those who did would neither expect nor tolerate the extremes of multiple chemotherapy regimens, last-ditch surgical procedures, experimental therapies—when the problem’s ultimate outcome was so dismally clear. And the health system wouldn’t have the money for it.

But then they couldn’t help but talk about their own experiences, and their tales sounded familiar: a grandparent put on life support against his wishes, a relative with incurable liver cancer who died in the hospital on an experimental treatment, a brother-in-law with a terminal brain tumor who nonetheless endured endless cycles of chemotherapy that had no effect except to cut him down further and further. “Each round was more horrible than the last,” the South African writer told me. “I saw the medicine eat his flesh. The children are still traumatized. He could never let go.”

Their countries were changing. Five of the ten fastest-growing economies in the world are in Africa. By 2030, one-half to two-thirds of the global population will be middle class. Vast numbers of people are becoming able to afford consumer goods like televisions and cars—and health care. Surveys in some African cities are finding, for example, that half of the elderly over eighty years old now die in the hospital and even higher percentages of those less than eighty years old do. These are numbers that actually exceed those in most developed countries today. Versions of Sara’s story are becoming global. As incomes rise, private sector health care is increasing rapidly, usually paid for in cash. Doctors everywhere become all too ready to offer false hopes, leading families to empty bank accounts, sell their seed crops, and take money from their children’s education for futile treatments. Yet at the same time, hospice programs are appearing everywhere from Kampala to Kinshasa, Lagos to Lesotho, not to mention Mumbai to Manila.

Scholars have posited three stages of medical development that countries go through, paralleling their economic development. In the first stage, when a country is in extreme poverty, most deaths occur in the home because people don’t have access to professional diagnosis and treatment. In the second stage, when a country’s economy develops and its people transition to higher income levels, the greater resources make medical capabilities more widely available. People turn to health care systems when they are ill. At the end of life, they often die in the hospital instead of the home. In the third stage, as a country’s income climbs to the highest levels, people have the means to become concerned about the quality of their lives, even in sickness, and deaths at home actually rise again.

This pattern seems to be what is happening in the United States. Whereas deaths in the home went from a clear majority in 1945 to just 17 percent in the late eighties, since the nineties the numbers have reversed direction. Use of hospice care has been growing steadily—to the point that, by 2010, 45 percent of Americans died in hospice. More than half of them received hospice care at home, and the remainder received it in an institution, usually an inpatient hospice facility for the dying or a nursing home. These are among the highest rates in the world.

A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals—and millions of them are seizing the opportunity. But this is an unsettled time. We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase. However miserable the old system has been, we are all experts at it. We know the dance moves. You agree to become a patient, and I, the clinician, agree to try to fix you, whatever the improbability, the misery, the damage, or the cost. With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time. And that would include me, whether as a doctor or as simply a human being.

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MY FATHER WAS
in his early seventies when I was forced to realize that he might not be immortal. He’d been as healthy as a Brahma bull, playing tennis three days a week, maintaining a busy urology practice, and serving as president of the local Rotary Club. He had tremendous energy. He did numerous charity projects, including working with a rural Indian college he’d established, expanding it from a single building to a campus with some two thousand students. Whenever I came home, I’d bring my tennis rackets and we’d go out on the local courts. He played to win, and so did I. He’d drop shot me; I’d drop shot him. He’d lob me; I’d lob him. He had picked up a few old-man habits, like blowing his nose onto the court whenever he felt like it or making me chase down our errant tennis balls. But I took them to be the kinds of advantages a father takes with a son, rather than signs of age. In more than thirty years of medical practice, he’d not canceled his clinic or operating schedule for sickness once. So when he mentioned the development of a neck pain that shot down his left arm and caused tingling in the tips of his left fingers, neither one of us was inclined to think too much of it. An X-ray of his neck showed only arthritis. He took anti-inflammatory medication, underwent physical therapy, and took a break from using an overhead serve, which exacerbated the pain. Otherwise it was life as usual for him.