Mistreated

Chapter One

VICTIMS OF CIRCUMSTANCE

Palo Alto is a charming bayside town in the heart of Silicon Valley. Named after the soaring California redwoods that dot its landscape, Palo (stick) Alto (tall) is home to Stanford University Medical Center, where I trained as a surgical resident and where I remain on the clinical faculty.

It's springtime, the year 2000, and all across the state the California poppies are in bloom. The silky trumpets of our state flower burst with color, carpeting the hillsides in yellows, oranges, and golds. Hummingbirds float under bright blue skies. If you listen closely, you can hear their little wings flapping dozens of times per second as they lap nectar with admirable precision.

The sights and sounds of the world outside contrast with all that I can see and hear inside the Intensive Care Unit of Stanford Medical Center. Under muted lights, I listen to the rumble of medication carts and nurses chatting in the hallway. The steady chirp of the heart-rate monitor pulses and blends into the whir of the respirator, which is currently forcing oxygen through the endotracheal tube doctors have placed down the nose and into the lungs of my father, Jack Pearl.

He's unconscious, his blood pressure low. Bacteria race through his bloodstream. My father, the handsome and strong dentist with steady hands, smooth skin, and sharp green eyes, hardly resembles this shriveled, pasty man lying on the hospital bed, his hair disheveled and lips parched. My father is in septic shock, the result of an infection that has spread through his lungs to his entire body.

This bed, one of sixty-seven in the ICU, is where my father will remain unresponsive for the next four days. My younger brother, Ron, who looks every part the doctor, stands beside me. He inherited our father's smooth skin, light brown hair, and passion for medicine. Ron is the chairman of the anesthesia department at Stanford Medical School. He oversees the operating rooms and is responsible for the nationally renowned medical care provided to ICU patients like my father. Ron's colleagues, fellows, and residents care for our dad as we hover near his bedside.

My brother and I understand the significance of our father's diagnosis. We realize the serious obstacles the care team must overcome to reverse his life-threatening condition. Ron and I speak to each other in the language of doctors and, between each care-team check-in, we ask his physicians about respirator settings and blood-culture results. I think back to when Ron and I were both residents here years ago, taking care of complex and acutely ill patients together. This feels very different, surreal, terrifying.

We take turns sitting at our father's bedside and calling our sister in New York with updates. We know, medically, what's happening to our father. But how our father got here remains a complete mystery to us.

I step outside for a break and take deep breaths of fresh air. The fountains that line the plaza of the medical center ripple and glisten under the midday sun. Doctors, nurses, and hospital staff mingle at nearby tables, enjoying their lunches, making conversation beneath the umbrellas. I realize that, for them, it's just another day.

The Past Twenty-Four Hours

My father and I played golf yesterday, as fathers and sons do. Conditions on the course were idyllic. The round flew by and my father's skills were on full display. Although his long-game wasn't quite as long as it used to be, his putting and chipping abilities more than compensated. He shot an eighty-three, joking that he couldn't wait to get a few years older so that he could "shoot his age."

Ron joined us for dinner later that evening at my house in Los Gatos, about thirty minutes south of Palo Alto. We talked about the good times we had growing up and the challenges of American medicine. My dad reminisced about family vacations and the joy he experienced through his dental practice. We made plans to get together that summer at our father's condo in New York City. Afterward, my dad drove back to my brother's house to get some sleep.

Early the next morning, as my brother got ready for rounds, he found our dad lying unconscious on the living-room floor. Immediately, he called 911. His next call was to the hospital, notifying the physicians that our dad would be arriving in a few minutes and that he'd require immediate admission to the ICU. The ambulance and my brother arrived within minutes of each other. The care team stood by, ready.

The Next Twenty-Four Hours

After a day at our father's bedside, amid the constant beep of medical equipment and the rush of personnel coming in and out of the room, Ron and I are tired and very much on edge. We've exhausted the vocabulary of medical dialect with a meticulous succession of "what ifs." We fidget and shift in our chairs. It's amazing how quickly time moves when you're the doctor providing care. And it's eerie how slowly time passes when your father is the patient, and all you can do is watch and wait.

When there's nothing more to contribute to clinical discourse, Ron and I break the silence with words of comfort. We agree it's fortunate this happened so close to Stanford's hospital. I understand how lucky it is my father was downstairs from a critical-care expert, not back in New York by himself. Of course, none of these insights comfort me or disarm our fears about what might happen next. Even if everything goes perfectly and our dad lives, his recovery will be long and difficult at best.

Every day in American hospitals, friends and families wait nervously by the bedsides of their loved ones, hoping everything will be okay. They pace about the hallways and huddle in the sitting areas, waiting for answers and assurances. Amid the commotion and the unknown, the world of medicine can feel intimidating and alien to outsiders.

As a physician and surgeon, I'm comfortable with this world, at ease in the Operating Room and inpatient units with their rituals, sights, and sounds. Through my training and clinical work, I have learned how to deal with death, pain, and fear. But this is my father. Nothing in my training prepared me for this moment.

I know the members of the care team are doing everything they can. And if you put almost anyone else in that bed, Ron and I would enjoy the camaraderie of once again working together as doctors and brothers to save the life of a patient. But in this most familiar of settings, we're outside our comfort zones. Standing at our father's bedside, we're not physicians consulting on a complex medical case. We're two sons wondering if our dad will live until tomorrow.

The Greatest Generation

My father was the youngest child of poor immigrants from Belarus. In the early part of the twentieth century, his parents fled the pogroms of Russia, though not together. Each sailed to the United States looking for a new life. There, they met each other and married. My grandmother crossed the Atlantic as a teenager, alone, with only the name of an aunt as reference. She arrived in America completely naïve about the realities of this new land. Unable to speak a word of English, she had assumed everyone in America spoke Russian and that the streets were literally paved with gold, just as those back home had promised.

My grandfather picked up some English before arriving, helping him land a pair of jobs in New York City to support himself and, eventually, his new family. He was a tailor, like many immigrants of his generation. He'd bring home leftover scraps of garment, piecing and sewing them together at night into new clothes for extra income, all in the tireless pursuit of the American dream.

At home, my grandparents spoke in Yiddish, making plans for the future, trusting always that in this country anything was possible. If they had little else, they had each other and their family. As parents, they held firm to the conviction that if their children studied hard and took advantage of the opportunities of this great nation, the future would be bright. This was the world my grandparents knew, equal parts hardship and optimism.

In the early twentieth century, however, hardships weren't just economic. Health care in the era before vaccinations meant doctors could do little to prevent or treat some of the most life-threatening diseases.

My father's only sister, Mary, died from measles at age six. Although he was too young to remember her, my father talked often about the grief Mary's death caused his family. Losing a child is one of the most painful events a parent can experience, and it would haunt my grandparents for the rest of their lives. In their day, when life was guaranteed to no one, there was little time to mourn. As my father and his brother, Herbert, grew up, they honored their parents' wishes. They studied hard in school and worked multiple jobs during nights and weekends. Both went on to pursue careers in health care.

My uncle Herb took to medicine and became a general surgeon. My father gained acceptance at Columbia University en route to dental school at New York University.

Shortly after earning his dental license, my dad enlisted in the 101st Airborne to fight for the Allies during World War II. As a captain in the army, he could have asked for a safer assignment, perhaps caring for new recruits on this side of the Atlantic. But that's not who my father was.

As a member of the "Screaming Eagles," my father parachuted behind enemy lines in the Battle of Normandy. There, he and members of his unit were captured by the Germans. Inside a truck transporting a dozen or so American soldiers to the closest Nazi prison, my father led a daring escape. For two days, he guided his unit through hills and forests in the dark of night, hiding beneath the brush at daybreak, promising each other they would survive.

The soldiers were eventually reunited with their battalion, returning to America not long after. Radio stations across the country aired stories of the unit's bravery. My mother, so proud of her husband's heroic efforts, obtained a copy of the story on vinyl. When I was a child, she played it for me on the phonograph in the den. Growing up, I had no doubt my father was a great man.

After the war, my dad opened his dental practice in Queens. A few years later, he and my mother bought a home in the suburbs of Long Island, and together they raised a family. My father, the son of poor immigrants, the war hero, the successful dentist and loving father, spent his life working hard to fulfill the American dream that his parents had begun. Throughout his life, he earned the esteem we as a country ascribe to the "greatest generation."

Life Goes On

After practicing for forty years and at the age of seventy-two, my father hadn't lost his dental skills one bit. He simply retired, wanting to pursue his other interests. He was always passionate about art. In his thirties and forties, he painted and sketched. In his fifties and sixties, he toyed with sculpture. Now in his seventies, he combined his former profession and his artistic passion, employing a variety of dental tools to smooth and shape acrylics. Away from his practice and the canvas, he loved spending time with his wife, his children, and his friends. And, of course, he loved having more time to work on his golf game.

In 1994, my parents sold their Long Island home, opting for a condo back in Queens. Shortly after, they purchased a second home in West Palm Beach and, like many of their friends, enjoyed the best of both locations. Springs and summers in New York, then off to Florida just as the leaves began to fall and the nip of autumn settled across the boroughs. And when spring returned to New York, so would they, soaking up the vibrant culture of the Big Apple.

For most of his life, my father was the picture of good health, full of energy and strength. But in his sixties, his energy ebbed. Doctors diagnosed him with a hemolytic anemia, a condition that destroys red blood cells before the end of their normal life span.

His hematologist prescribed a variety of medications in hopes of slowing the destructive process. He ordered repeat transfusions to restore my dad's red-blood-cell count to normal. Unfortunately, his body continued to destroy the cells, and his blood count fell week after week, draining his strength. The time had come for a more aggressive approach. So, a surgeon removed his spleen. Surgery was the right thing to do. The procedure does not always solve the problem, but in this case, the operation was a success and my father's blood count normalized. His vigor returned, and I was overjoyed to have my father restored to full strength.

As the years passed by, however, the unfailing certainties of time caught up with him. My father developed mild hypertension, atrial fibrillation, and cataracts, the types of chronic medical problems commonly associated with aging. He saw a team of physicians: an internist, a cardiologist, a hematologist, and an ophthalmologist. His physicians were skilled, and each condition was properly treated. Every Sunday night, my father would fill his plastic pill box with the exact medications he needed. Seven pills in the Monday compartment, seven in the one labeled Tuesday, and so on for the entire week.

Whenever I'd visit him, whether in New York or Florida, he'd ask me to accompany him on one or more of his physician appointments. I gladly obliged. As his doctors sat down to take a patient history, clipboards in hand, they always began with the same question.

"What medications are you taking, Dr. Pearl?"

I'll admit I was surprised to hear this. At the time, our medical group had already implemented an electronic health record, although not as sophisticated as the one we use today. I took for granted how easy it was for our thousands of physicians to access this information on their office computers and in their exam rooms. I was jolted by the realization that these well-trained physicians from renowned academic programs seemed content to rely on the memory of a man in his seventies to tell them what kinds of medications he was taking and the exact dosages.

Fortunately, my dad was a fastidious man, as most dentists are. Whenever the doctors asked him about his prescriptions, he would reach into his pocket and unfurl a tattered piece of paper containing a handwritten list of all his current medications. When prescriptions changed, he'd dutifully cross out the old medication or dosage, and write in the new one.

Finally, a Clue

Back in the Stanford Medical Center, Ron and I are waiting for our father's blood culture results, which take two to three days to come back and during which every hour feels like a lifetime. First, the bacteria need to grow. Then the technician needs to perform a diagnostic analysis to determine the exact variety. Finally, the lab has to complete tests to establish which antibiotics are likely to be effective.

Two days after my father's admission to the ICU, the resident helping with his care shares what they have learned. "Your father has a pneumococcal infection," he says, assuring us the antibiotics he's taking are appropriate for this particular bacterium.

As doctors, Ron and I know this particular organism well. The "pneumococcus" is a common cause of pneumonia. In the past, it was a frequent cause of death. Thankfully, modern antibiotics such as the ones my father are on reduce that likelihood.

But these antibiotics are a treatment for a condition my father didn't need to suffer from in the first place. And this is where his medical history becomes very important.

Years before, the removal of my father's spleen helped return his blood count to normal and restore him to good health. The surgeon who performed the procedure did so with masterful skill and without postoperative complication.

But medicine is a tricky craft. Many of the procedures we perform have downsides that can surface years later. A patient with his spleen removed, for example, is at risk of developing severe infection. One specific bacterium that's particularly problematic for people without a spleen is the pneumococcus. Without a spleen to filter this pathogen out of the bloodstream, the pneumococcus can infect a patient's entire body.

Every surgeon who removes a person's spleen, and every doctor who cares for that patient afterward, knows there's an increased risk of pneumococcal infection. They also know that every person whose spleen has been removed should receive a pneumococcal vaccine. This vaccine allows the body to fight this organism more effectively. And without a doubt, every one of my father's excellent physicians knew he needed it.

But after calling around, I discovered the hard truth. My dad's doctors in New York assumed the ones in Florida had given him the vaccination. The physicians in Florida assumed the ones in New York had done so. The medical specialists believed the surgeon who removed my father's spleen had administered it. And all the specialty physicians thought my father's internal medicine doctor had taken care of it. In the end, no one had.

After four days in Stanford's ICU and another ten days in the hospital, my father is alive but extremely weak. He's barely able to feed himself. Days of bed rest have rubbed the skin of his heel raw, which will result in a deep ulcer on his foot, making it difficult for him to walk for months.

Before his collapse, my father was the most energetic person I knew. But as he takes his first steps outside the medical center, it's as though he has aged an entire decade. We encourage him to take ten steps that day, hoping he can do twelve tomorrow. We're thankful to his critical-care doctors who saved him from death. Still, the toll this experience has taken on his body will sap our father's strength for the rest of his life. We know he will never again be the man he was before.

The Wounds Time Can't Heal

My father, like millions of other patients in our country, suffered a life-threatening complication because of an avoidable medical error. His experience reflects the contradictions that plague American medicine.

We train superb physicians who can accomplish the remarkable when patients become extremely ill, pulling them back from the brink of dying. And yet we in the medical community fail to consistently follow basic steps such as washing our hands between patients, a practice that can prevent infection, the number-one cause of death among hospitalized patients.

Similarly, as doctors, we demand the most advanced medical devices money can buy, yet we undervalue simple information technologies with the power to prevent fatal medical errors. Electronic health records keep and provide details on the totality of a patient's care, information that is essential to achieving superior outcomes. And yet in the United States today, about 50 percent of all doctors still rely on paper medical records.