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.