by Atul Gawande
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.
CALLIE'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 th
e 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."
PART III
Ingenuity
The Score
At 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."
The nurse asked if the contractions were five minutes apart and lasted more than a minute. No. Had she broken her water? No. Well, she had a "good start." But she should wait to come in.
During her medical training, Rourke had seen about fifty births and delivered four babies herself. The last birth she had seen was in a hospital parking lot.
"They had called, saying, 'We're delivering! We're coming to the hospital, and she's delivering!'" Rourke says. "So we were in the ER and we went running. It was freezing cold. The car came screeching up to the hospital. The door went flying open. And, sure enough, there the mom was. We could see the baby's head. The resident running next to me got there a second before I did, and he puts his arms down, and the baby went--phhhoom--straight into his arms in the middle of the parking lot. It was freezing cold outside, and I'll never forget the steam pouring off the baby. It's blue and crying and the steam was pouring off of it. Then we put this tiny little baby on this enormous stretcher and raced it back into the hospital."
Rourke didn't want to deliver in a parking lot. She wanted a nice, normal vaginal delivery. She didn't even want an epidural. "I didn't want to be confined to bed," she says. "I didn't want to be dead from the waist down. I didn't want a urinary catheter to have to be put in. Everything about the epidural was totally unappealing to me." She was not afraid of the pain. Having seen how too many deliveries had gone, she was mainly afraid of losing her ability to control what was done to her.
She had considered hiring a doula--a birthing coach--to stay with her through delivery. There are studies showing that having a doula can lower the likelihood a mother will end up with a Cesarean section or an epidural. The more she looked into it, however, the more worried she became about being paired with someone annoying. She thought about delivering with a midwife. But, as a doctor, she felt that she would have more control working with another doctor.
She was not feeling very much in control at the moment, though. By midday, her contractions hadn't really speeded up; they were still coming every seven minutes, maybe every six minutes at most. She was finding it increasingly difficult to get comfortable. "The way it felt best was, strangely enough, to be on all fours," she recalls. So she just hung around the house like that--on all fours during the contractions, her husband close by, both of them nervous and giddy about their baby being on the way.
Finally, at 4:30 in the afternoon, the contractions began coming five minutes apart, and they set off in their Jetta, with the infant car seat installed in the back, her bag packed with everything that The Girlfriends' Guide to Pregnancy said to bring, right down to the lipstick (which she doesn't even wear). When they reached the hospital admissions desk, she was ready. Their baby was on the way, and she was eager to bring it into the world as nature had intended.
"I wanted no intervention, no doctors, no drugs. I didn't want any of that stuff," she says. "In a perfect world, I wanted to have my baby in a forest bower attended by fairy sprites."
HUMAN BIRTH IS an astonishing natural phenomenon. Carol Burnett once told Bill Cosby how he could understand what the experience was like. "Take your bottom lip and pull it as far away from your face as you can," she said. "Now pull it over your head." The process is a solution to an evolutionary problem: how a mammal can walk upright, which requires a small, fixed, bony pelvis, and also possess a large brain, which entails a baby whose head is too big to fit through that small pelvis. Part of the solution is that, in a sense, all human mothers give birth prematurely. Other mammals are born mature enough to walk and seek food within hours; our newborns are small and helpless for months. Even so, human birth is a feat involving an intricate sequence of events.
First, a mother's pelvis enlarges. Starting in the first trimester, maternal hormones stretch and loosen the joints holding the four bones of the pelvis together. Almost an inch of space is added. Pregnant women sometimes feel the different parts of their pelvis moving when they walk.
Then, when it's time for delivery, the uterus changes. During gestation, it's a snug, rounded, hermetically sealed pouch; during labor it takes on the shape of a funnel. And each contraction pushes the baby's head down through that funnel, into the pelvis. This happens even in paraplegic women; the mother does not have to do anything.
Meanwhile, the cervix--which is, through pregnancy, a rigid, more-than-inch-thick cylinder of muscle and connective tissue capping the end of the funnel--softens and relaxes. Pressure from the baby's head gradually stretches the tissue until it is paper-thin--a process known as "effacement." A small circular opening appears, and each contraction widens it, like a tight shirt being pulled over a child's head. Until the contractions pull the cervix open about four inches, or ten centimeters--the full temple-to-temple diameter of the child's head--the child cannot get out. So the state of the cervix determines when birth will occur. At two or three centimeters of dilation, a mother is still in "early" labor. Delivery is many hours away. At four to seven centimeters, the contractions grow stronger. "Active" labor has begun. At some point, the amniotic sac surrounding the fetus breaks under the pressure, and the clear fluid gushes out. Contractile force increases further.
At between seven and ten centimeters of cervical dilation, the "transition phase," the contractions reach their greatest intensity. The contractions press the baby's head into the vagina and the narrowest part of the pelvis's bony ring. The pelvis is usually wider from side to side than front to back, so it's best if the baby emerges with the temples--the widest portion of the head--lined up side to side with the mother's pelvis. The top of the head comes into view. The mother has a mounting urge to push. The head comes out, then the shoulders, and suddenly a breathing, wailing child is born. The umbilical cord is cut. The placenta separates from the uterine lining, and with a slight tug on the cord and a push from the mother, it is extruded. The uterus spontaneously contracts into a clenched ball of muscle, closing off its bleeding sinuses--the expanded veins in the uterine wall. Typically, the mother's breasts immediately let down with colostrum, the first milk, and the newbor
n can latch on to feed.
That's if all goes well. At almost any step, the process can go wrong. For thousands of years, childbirth was the most common cause of death for young women and infants. There's the risk of hemorrhage. The placenta can tear or separate, or a portion may remain stuck in the uterus after delivery and then bleed torrentially. Or the uterus may not contract after delivery, so that the raw surfaces and sinuses keep bleeding until the mother dies of blood loss. Sometimes the uterus ruptures during labor.
Infection can set in. Once the water breaks, the chances that bacteria will get into the uterus rise with each passing hour. During the nineteenth century, as Semmelweis discovered, doctors often introduced infection, because they examined more infected patients than midwives did and because they failed to wash their contaminated hands. Bacteria routinely invaded and killed the fetus and, often, the mother with it. Puerperal fever remained the leading cause of maternal death in the era before antibiotics. Even today, if a mother doesn't deliver within twenty-four hours after her water breaks, she has a 40 percent chance of becoming infected.
The most basic problem is "obstruction of labor"--not being able to get the baby out. The baby may be too big, especially when pregnancy continues beyond the fortieth week. The mother's pelvis may be too small, as was frequently the case when lack of vitamin D and calcium made rickets common. The baby might arrive at the birth canal sideways, with nothing but an arm sticking out. It could be a breech, coming butt first and getting stuck with its legs up on its chest. It could be a footling breech, coming feet first but then getting wedged at the chest with the arms above the head. It could come out headfirst but get stuck because its head is turned the wrong way. Sometimes the head makes it out, but the shoulders get stuck behind the pubic bone of the mother's pelvis.