Being Mortal (22 page)

To understand La Crosse, Thompson said, you had to go back to 1991, when local medical leaders headed a systematic campaign to get medical people and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted living facility to sit down with someone experienced in these conversations and complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:

By 1996, 85 percent of La Crosse residents who died had a written advanced directive like this, up from 15 percent, and doctors virtually always knew of the instructions and followed them. Having this system in place, Thompson said, has made his job vastly easier. But it’s not because the specifics are spelled out for him every time a sick patient arrives in his unit.

“These things are not laid out in stone,” he told me. Whatever the yes/no answers people may put on a piece of paper, one will find nuances and complexities in what they mean. “But instead of having the discussion when they get to the ICU, we find many times it has already taken place.”

Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease. But in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear. When wishes aren’t clear, Thompson said, “families have also become much more receptive to having the discussion.” The discussion, not the list, was what mattered most. Discussion had brought La Crosse’s end-of-life costs down to half the national average. It was that simple—and that complicated.

ONE WINTER SATURDAY
morning, I met with a woman I had operated on the night before. She had been undergoing a procedure for the removal of an ovarian cyst when the gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could be done. I removed a section of her colon that had a large cancerous mass, but the cancer had already spread widely. I had not been able to get it all. Now I introduced myself. She said a resident had told her that a tumor was found and part of her colon had been excised.

Yes, I said. I’d been able to take out “the main area of involvement.” I explained how much bowel was removed, what the recovery would be like—everything except how much cancer there was.
But then I remembered how timid I’d been with Sara Monopoli, and all those studies about how much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. “We’ll bring in an oncologist,” I hastened to add. “Chemotherapy can be very effective in these situations.”

She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. “Am I going to die?”

I flinched. “No, no,” I said. “Of course not.”

A few days later, I tried again. “We don’t have a cure,” I explained. “But treatment can hold the disease down for a long time.” The goal, I said, was to “prolong your life” as much as possible.

I have followed her in the months and years since, as she embarked on chemotherapy. She has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They didn’t remember them very fondly. “That one phrase that you used—‘prolong your life’—it just …” She didn’t want to sound critical.

“It was kind of blunt,” her husband said.

“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.

I spoke to Susan Block, a palliative care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”

One basic mistake is conceptual. To most doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. We focus on laying out the facts and the options. But that’s a mistake, Block said.

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.

There is no single way to take people with terminal illness through the process, but there are some rules, according to Block. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them their best chance of achieving it. This process requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.

The words you use matter. According to palliative specialists, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like you’re distancing yourself. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”

Block has a list of questions that she aims to cover with sick patients in the time before decisions have to be made: What do they understand their prognosis to be, what are their concerns about what lies ahead, what kinds of trade-offs are they willing
to make, how do they want to spend their time if their health worsens, who do they want to make decisions if they can’t?

A decade earlier, her seventy-four-year-old father, Jack Block, a professor emeritus of psychology at the University of California at Berkeley, was admitted to a San Francisco hospital with symptoms from what proved to be a mass growing in the spinal cord of his neck. She flew out to see him. The neurosurgeon said that the procedure to remove the mass carried a 20 percent chance of leaving him quadriplegic, paralyzed from the neck down. But without it he had a 100 percent chance of becoming quadriplegic.

The evening before surgery, father and daughter chatted about friends and family, trying to keep their minds off what was to come, and then she left for the night. Halfway across the Bay Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he really wants.’ ” He’d made her his health care proxy, but they had talked about such situations only superficially. So she turned the car around.

Going back in “was really uncomfortable,” she said. It made no difference that she was an expert in end-of-life discussions. “I just felt awful having the conversation with my dad.” But she went through her list. She told him, “ ‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’ ”

“I would never have expected him to say that,” Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical,
because after surgery he developed bleeding in the spinal cord. The surgeons told her that in order to save his life they would need to go back in. But the bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever. What did she want to do?

“I had three minutes to make this decision, and I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the okay to take him back to the operating room.

“If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he was faced with a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.

During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. Eventually, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, just a few months before I’d spoken with Block, her father decided to stop the battle and go home.

“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.”

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.