Better (18 page)

O
NE DAY MY
wife's New Hampshire cousins called me about their twelve-year-old daughter, Callie. A little over a year earlier, she began to feel unexpectedly short of breath. A chest X-ray showed a mass filling her chest. It was a lymphoma--not unlike the one Peter Franklin had got as a medical student. This one was the non-Hodgkin's type, which doctors can cure in more than 80 percent of children at her stage of disease. Callie was given a standard six-month course of chemotherapy. Her hair fell out. Her mouth blistered. She became weakened and nauseated. But the cancer disappeared. Then, several months later, her tumor was found to have grown back, just as big as before. When a lymphoma returns after chemotherapy, the textbooks do not give statistics. They only say, "The prognosis is poor." Callie's oncologist had treatment options, though. She and the family decided to try a new chemotherapy. But after the initial dose, Callie's white blood cell count dropped alarmingly. It took her weeks in the hospital to recover. Her oncologist discussed further courses of action with Callie and her family. Together they decided to press ahead with yet a different chemotherapy. Again, her white blood cell count fell alarmingly. The tumor did not shrink a centimeter.

That was when her father, Robin, and I spoke. He did not know what to do. The cancer had grown despite three different chemotherapy regimens. Callie had had to have a half-inch-thick tube put into her chest to drain the fluid accumulating from the cancer. She was unbearably nauseated again. Her vomiting made it difficult for her to eat. She was
exhausted and emaciated. Between the chest tube, the cancer, the needle sticks, and the bandage changes, she felt pain almost every hour. There were options still left--other chemotherapies, experimental treatments, possibly even bone marrow transplantation. But how real were her chances, Robin wanted to know. Should they put her through yet more of this? Or should they take her home and let her die?

Many talk about the border between what we can do and what we can't as if it were a bright line drawn across the hospital bed. Analysts often note how ridiculous it is that we spend more than a quarter of public health care dollars on the last six months of life. Perhaps we could spare this fruitless spending--if only we knew when people's last six months would be.

In the absence of certainty, the truth is we want doctors who fight. Through a friend, I met Watson Bowes Jr., a nationally known professor of obstetrics, now emeritus, from the University of North Carolina. We got talking and I asked him what he was most proud of in his career. I expected to hear about laboratory discoveries or obstetric techniques. He had done foundational research on how oxygen is carried to the fetus, and he had been among the first in America to learn how to give blood transfusions to fetuses. But what made him most proud, he told me, was an experiment he had done as a young obstetrician at the University of Colorado in 1975. At that time, babies born two months prematurely or more were considered to have almost no chance to survive. Little, therefore, was done for them. For one year, however, he decided to treat those babies as if they would live--no matter how blue, how weak, how small. The doctors on his team used no new
technologies. They simply did everything they would normally do for a full-term baby. If the baby had trouble in delivery, they did a C-section, when before they would have spared a mother the surgery for such a hopeless child. They used fetal heart monitors when they usually wouldn't have. They put in intravenous lines and placed the babies on respirators, however limp and lifeless they seemed. And they discovered that the vast majority of these premature babies, babies only two or three pounds in size, could survive to be normal and healthy--just by the doctors' fighting for them.

Even when we don't know that a patient can be completely normal and healthy, we want doctors to fight. Consider again the wars in Iraq and Afghanistan, where military surgeons have learned how to save soldiers who have never been saved before--soldiers with almost a hundred percent of their bodies burned, soldiers with severe and permanent head injuries, soldiers who have had abdominal injuries and three limbs blown away. We have no idea whether it is possible to live a good life with no arms and only one leg. But we don't want the doctors to give up. Instead, we want them to consider it their task to learn how to rehabilitate survivors despite the unprecedented severity of their injuries. We want doctors to push and find a way.

We also want doctors to fight even in the most mundane of situations. My ten-year-old daughter, Hattie, has had to deal with severe psoriasis for a long time. It is hardly life-threatening. But the condition has left her with thick red itchy and scaling patches all over--on her knees, her back, her scalp, her face. The dermatologist tried stronger and stronger steroid creams and medications. These damped the disease down
somewhat, but only some of the angry patches went away. This was about as good as we could do for her, he said. We would just try to control the disease and hope Hattie outgrew it. So for a long while we lived with her condition. But she hated it, and she hated the eruptions on her face most of all. She kept asking her mother and me, "Please, just take me to another doctor." So finally we did. The second dermatologist said she had something else she wanted to try. She put Hattie on amoxicillin, an ordinary antibiotic. It doesn't work in adults, she said, but sometimes it does in kids. In two weeks, the patches were gone.

The seemingly easiest and most sensible rule for a doctor to follow is: Always Fight. Always look for what more you could do. I am sympathetic to this rule. It gives us our best chance of avoiding the worst error of all--giving up on someone we could have helped.

I have a friend whose elderly grandmother went into shock from gastric bleeding from taking ibuprofen for a backache. The bleeding was torrential. She had to be given multiple blood transfusions just to keep up with the hemorrhaging. The units of packed red cells and plasma were put in pressure bags to pump them into her frail veins as quickly as possible. She underwent emergency endoscopies and angiograms, and after many hours of effort the bleeding vessel was found and stopped. But she did not do well afterwards. She remained in intensive care for weeks, unconscious, on a ventilator. Her lungs and heart went into failure. She eventually required a tracheostomy, a feeding tube, an arterial line in one arm, central venous lines in her neck, and a urinary catheter. More than a month went by with no sign of improvement. The family
agonized about keeping on with the treatment. The likelihood of her recovering a life she would find worth living seemed dismal. Eventually, the family went to the doctors and told them they had decided it was time to withdraw life support.

But the doctors balked. Let's wait a while longer, they said. "They were solicitous but quite firm," my friend says. They didn't want to hear about stopping. So the family bowed to their will. And ten days or so later, my friend's grandmother began to improve dramatically. The team was soon able to remove her tubes. Her tracheotomy healed over. She turned the corner, and although it took still more weeks of recovery, she got back to her life and enjoyed it for several years after. "She told me repeatedly how glad she was to be here," he says.

So maybe we should never hold back, never stop pushing. In the face of uncertainty, what could be safer? It doesn't take long to realize, however, that the rule is neither viable nor humane. All doctors--whether surgeons, psychiatrists, or dermatologists--have patients they are unable to heal, or even to diagnose, no matter how hard they try. I have several patients who have come to me with chronic, severe abdominal pain of one sort or another. And I have tried all I can to figure out the cause of their pain. I have done CT scans and MRIs. I have sent the patients to gastroenterologists, who endoscoped their colons and their stomachs. I have ruled out pancreatitis, gastritis, ulcers, lactose intolerance, and lesser known conditions like celiac sprue. But their pain has remained. Just take out my gallbladder, one patient pleaded with me, and even her internist joined in. The pain was in the exact location of her gallbladder. But the gallbladder looked normal on all the tests. So do you take out the gallbladder on the off chance it is the
source? At some point you have to admit that you are up against a problem you are not going to solve and that, by pushing further and harder, you might well do more harm than good. Sometimes there is nothing you can do.

I was walking down the hallway one day, when Jeanne, one of the intensive care unit nurses, stopped me, visibly angry. "What is it with you doctors?" she said. "Don't you ever know when to stop?" That day she'd been caring for a man with lung cancer. He had had one of his lungs removed and had been in intensive care for all but three weeks of the five months since. A pneumonia that blossomed in his remaining lung early after surgery had left him unable to breathe without a tracheostomy and a respirator. He had to be heavily sedated or else his oxygen levels dropped. He received nutrition through a surgically placed gastric tube. Sepsis claimed his kidneys and the team put him on continuous dialysis. It had long ago become apparent that a life outside the hospital was not possible for this man. But neither the doctors nor his wife seemed capable of confronting this truth--because he did not have a terminal disease (his cancer had been removed successfully) and he was only in his fifties. So there he lay, with no evident hope of progress and his doctors simply trying to keep him from falling back. This was not the only patient Jeanne had like this, either.

But as we talked, Jeanne also told me of doctors she thought had stopped pushing too soon. So I asked what she felt the best doctors did. She thought for a while before answering. Good doctors, she finally said, understand one key thing: "This is not about them. It's about the patient." The good doctors didn't always get the answers right, she said.
Sometimes they still pushed too long or not long enough. But at least they stopped to wonder, to reconsider the path they were on. They asked colleagues for another perspective. They set aside their egos.

This insight is wiser and harder to grasp than it might seem. When someone has come to you for your expertise and your expertise has failed, what do you have left? You have only your character to fall back upon--and sometimes it's only your pride that comes through. You may simply deny your plan has failed, deny that more can't be done. You may become angry. You may blame the person--"She didn't follow my instructions!" You may dread just seeing that person again. I have done all these things. But they never come to any good.

In the end, no guidelines can tell us what we have power over and what we don't. In the face of uncertainty, wisdom is to err on the side of pushing, to not give up. But you have to be ready to recognize when pushing is only ego, only weakness. You have to be ready to recognize when the pushing can turn to harm.

In a way, our task
is
to "Always Fight." But our fight is not always to do more. It is to do right by our patients, even though what is right is not always clear.

C
ALLIE'S DOCTORS COULD
not say exactly how slim her chances were once the rounds of chemotherapy had failed. Who knew what an experimental drug or a yet different chemotherapy could do? There were still possibilities for success. But her doctors also made sure that Callie and her parents knew that it was all right if they wanted to stop.

As I talked to Robin, her father, who was in agony and trying to understand what should be done, I found I could do little more than confirm the choices her doctors had laid out. He wanted hope that his daughter would live. But he did not want to subject her to fruitless suffering. If a further treatment could save two in a hundred children but would subject ninety-eight of them to a painful death, would that treatment be worth trying for Callie? I had no answer. Callie and her parents were left to sort through the questions by themselves.

Not long after we spoke, Callie's mother, Shelley, sent an e-mail to relatives and friends that began with a quotation. "'We must eradicate from the soul all fear and terror of what comes to us out of the future,'-" it said. Two days later, on April 7, 2006, Callie's parents brought her home. On April 17, Shelley wrote again: "Callie died peacefully at home shortly after 1 a.m. Easter Monday. We are all fine. Our home is filled with incredible peace."

A
t
5:00 A.M.
on a cool Boston morning not long ago, Elizabeth Rourke--thick black-brown hair, pale Irish skin, and forty-one weeks pregnant--reached over and woke her husband, Chris.

"I'm having contractions," she said.

"Are you sure?" he asked.

"I'm sure."

She was a week past her due date, and the pain was deep and viselike, nothing like the occasional spasms she'd been feeling. It seemed to come out of her lower back and to wrap around and seize her whole abdomen. The first spasm woke her out of sound sleep. Then a second came. And a third.

She was carrying their first child. So far, the pregnancy
had gone well, aside from the exhaustion and the nausea of the first trimester, when all she felt like doing was lying on the couch watching
Law & Order
reruns. ("I can't look at Sam Waterston anymore without feeling kind of ill," she says.) An internist who had just finished her residency, she had landed a job at the Massachusetts General Hospital a few months before and managed to work until she was full term. She and her husband now sat up in bed, timing the spasms by the clock on the bedside table. They were seven minutes apart, and they stayed that way for a while.

Rourke called her obstetrician's office at 8:30, when the phones were turned on, but she knew what the people there were going to say: Don't come to the hospital until the contractions are five minutes apart and last at least a minute. "You take the childbirth class, and they drill it into you a million times," Rourke says. "The whole point of childbirth classes, as far as I could tell, was to make sure you keep your butt out of the hospital until you're really in labor."