Every Patient Tells a Story

by Lisa Sanders

  And, of course, people need more than the right treatment for the right disorder. They need to be heard, they need reassurance, explanations, encouragement, sympathy—the full range of emotional support that is a critical part of what we doctors try to do: heal.

  AFTERWORD

  The Final Diagnosis

  “I’m sorry,” the young man on the telephone said to me. His voice was hushed and sympathetic, difficult to hear over the usual commotion of the clinic bustling just outside my office door. He was a stranger to me. He said his name was Jorge. He was an old friend of a young woman we both knew quite well. “I’d chatted with her on the phone maybe twenty minutes earlier. She said come by and so I just drove on over.”

  He told me that he’d rung her bell early that sunny September morning and when there was no answer, he clanged through the backyard gate. When he saw her stretched out on the chaise longue in her bathing suit, his first thought was how pretty she looked. “I’m a married man, so it wasn’t like that, but she’s always been a looker.” When she didn’t reply to his “Hey, how’s it going?” he approached her and put his hand on her shoulder. Her skin felt warm but he noticed how strangely pale she was under her tan. “And I knew then, I knew. Her cell phone was right there next to her, like it always was, so I picked it up and dialed 911.”

  I thought back to the last time I’d seen Julie: her tanned cheeks still un-lined, her eyes so blue that even the whites were the color of robin’s eggs. I could hear her deep tobacco-coarsened drawl and her earthy sense of humor. I closed my office door and dropped into my chair.

  My beautiful and mysterious little sister was dead.

  My first thought, when thought was finally possible, was how? More than anything, I wanted to know how a young woman could die so suddenly that she didn’t even have time to call for help. What happened?

  It was a strangely familiar question. When patients of mine have died, their spouse or parent or child or friend would ask me this very question after I broke the news. In waiting rooms outside the emergency room or ICU, shocked, sad, crying—they would ask: Doctor, how did this happen? How did this person, so very alive not so long ago, die? I would do my best to answer, to pull together the strands of a devastating illness or collapse, but it seemed a peculiar question—as if an explanation could somehow soothe the jagged edges of loss. But it made sense to me now. I suddenly understood that terrible need to know how.

  At forty-two, my sister was healthy. But she was also an alcoholic. For the past fifteen years or so, her life had been dominated by this desire, and then this need, to drink. She’d started out—like so many—with excesses in high school, but calmed down after marriage and the birth of the son she loved. Over time, and for reasons I will never know, Julie’s drinking became more frequent. Weekend binges rapidly became the daily dose she’d sneak as she got her son ready for day care, or as she set out for work, as she prepared dinner or put her son to bed.

  She tried to stop. Again and again she would check herself into a hospital, or simply start going to AA meetings and try—I think, really try—to stop. She would call us almost daily, triumphant with the exact number of days, even hours, since her last drink. Then the calls would become less frequent. Her voice mail would tell us she’d call us back but she rarely did. And then finally there would be silence. Until she would try once more. My sisters and I—we were a family of five sisters—watched in helpless distress. Over the years we’d learned what all relatives of alcoholics learn: that everything we could do still was not enough.

  And then she died, as mysteriously as she had lived.

  What could kill a young woman that young, that fast? Jorge had found her cell phone along with a pack of cigarettes and a Coke sitting right beside her. She was obviously tanning herself, relaxing in the summer sun. Whatever killed her struck so quickly that she could not reach over to pick up the phone and dial 911. What could do that? I couldn’t get that terrible question out of my mind. As I made arrangements to travel home, I puzzled over it. I went into my doctor mode—in part because it was a way of managing my grief and in part because it’s what I’m trained to do. And without really wanting to, I found myself putting together a differential diagnosis, searching for scenarios that might explain how my sister had died so abruptly.

  Certainly a heart attack can be quick and deadly, especially at a young age. But that would be unusual in a forty-two-year-old woman. And we had no family history of heart disease. A ruptured blood vessel in her brain could cause an instantaneous loss of consciousness and rapid death. A massive clot that went to her lungs was another possibility. She was a smoker; maybe she was also taking birth control pills. That combination has been linked to such clots. Infection seemed unlikely. And yet, had she been sick? I didn’t know. Suicide was unthinkable to me, but it had to remain a possibility. She was often deeply depressed during these relapses. An accidental overdose was also possible.

  The coroner in Savannah, Georgia—where she had lived her last year and where she had died—ordered an autopsy be performed. Although one of my sisters was upset with what she saw as a violation, I was grateful. An autopsy, I hoped, would provide me with this necessary and final diagnosis.

  Autopsy—the word comes from the Greek autopsia, meaning to see for oneself. Historically the autopsy has played a critical role in medicine. For centuries everything we knew about disease was derived from examining the body after death. Even now when my patients ask me about their aches and pains for which I have no diagnosis, I confess to them that our knowledge of diseases that can’t kill you is fairly new and much less developed because even now most of what we know about disease was derived postmortem. Medicine’s first toehold into modern-day diagnosis came at the last half of the eighteenth century, when Giovanni Battista Morgagni, a physician and professor at the University of Padua, published On the Seats and Causes of Diseases Investigated by Anatomy. This book, completed when Morgagni was seventy-nine years old, was composed of hundreds of beautifully detailed drawings from autopsies that he’d performed over the course of a long career. These carefully drawn images revealed the destruction and distortions of the anatomy hidden beneath the skin and leading to death. By showing exactly how disease manifests itself in these visible, concrete ways within the body, the work inspired generations of doctors to investigate the process by which disease can distort and derange our most fundamental anatomy. For centuries disease and death had been attributed to humors or spirits or other intangibles and not something as real, or as clearly visible, as it was in these images.

  For the past 250 years autopsy has been one of medicine’s most reliable sources of information about the nature of disease. Cancer, heart disease, hemorrhage were all first seen through the exploration of the body after death. In the twentieth century, autopsy was used as the ultimate diagnostic tool. At its peak, up to half of all patients who died in the hospital underwent postmortem evaluation. Too late to help the patient, what was revealed was often useful knowledge for the doctor, the hospital, the family. Diseases missed or undetectable with the available technology were finally made visible. Doctors could use the knowledge for the benefit of their next patients. Hospitals used the information as a form of quality assurance on the care they provided and the skills of the doctors who practiced there. There were benefits for the bereaved family as well. The disease that took their loved one could be a risk for them as well.

  These days, patients who die in a hospital rarely make it to the pathologist’s table. Hospitals used to be required to perform autopsies. The Joint Commission on Accreditation of Healthcare Organizations—the regulatory body overseeing hospitals—required these institutions to maintain autopsy rates of at least 20 percent (25 percent for teaching hospitals), which was, and continues to be, the rate most advocates say is the minimum for monitoring diagnostic and hospital error. The commission eliminated that requirement in 1970. Medicare stopped paying for those that still got done a few years later.

  Until
quite recently autopsies were also considered an essential component in medical training. Residency programs were required to get autopsies on 15 percent of all the patients who died while under resident care. Seeing the real ravages of disease was considered an important part of medical training. But the requirements for most medical trainees were rolled back in the 1990s. Small residency programs objected to the ever growing cost—autopsies were not paid for—and enforcement of the rule was difficult.

  Even before the rollbacks of the requirements on hospital and training programs, the number of autopsies performed had plummeted. In the 1960s, nearly half of those who died in the hospital were autopsied. Only forty years later, at the turn of the twenty-first century, that rate had dropped to less than six per one hundred in-hospital deaths. We don’t even know how many are done now because that data isn’t collected anymore. In the community hospital where I take care of patients, there were ninety-three autopsies done in 1983. One recent year, we had performed a grand total of eleven autopsies and almost half of those were on stillborn infants.

  What’s happened here in the United States has happened everywhere. There’s been a global decline in the rate of autopsies—a reflection, in part, of the increased cost of health care, augmented by long-standing cultural concerns about this kind of violation of the body. But the real driving force behind this plunge has been the growing confidence of doctors and patients that the diagnoses given in life were accurate.

  Certainly a doctor’s ability to make an accurate diagnosis has improved dramatically over the past half century. A recent study done by the U.S. Agency for Healthcare Research and Quality suggested that the likelihood that a doctor will make an important diagnostic error has declined by 25 percent each decade since the middle of the century. It is a testimony to the effectiveness of the new technology of testing we have at our fingertips.

  But that study also shows that doctors still miss important problems. Of the few autopsies still done, a diagnosis that could have changed the management of the patient—and therefore possibly changed the final outcome—was found in one out of twelve autopsies. These days, doctors only order autopsies when the patient’s death came as a surprise or the underlying illness was not understood. Given that, it’s perhaps not surprising that something important was missed; it’s why the doctor got the autopsy in the first place. And yet several studies have shown that doctors are unable to predict which cases will provide the surprises. It turns out that in medicine (as in war, according to Donald Rumsfeld) there are the things you know you don’t know, and then there are the things you don’t know that you don’t know. Autopsies are one way to explore those dark recesses. The drop in the number of autopsies suggests that neither doctors nor hospitals are interested in exploring the deep recesses of what we don’t know we don’t know.

  My sister didn’t die in the hospital, where the odds that she would ever have a final diagnosis were small. She died “in the field” and so hers became a medicolegal death. The medical examiner and coroner are twin investigative arms, designed to look into unexpected deaths. The most important difference between the systems is that medical examiners are always physicians, usually pathologists, appointed by the state; a coroner is an elected officer, and rarely a physician. Both are charged with the investigation of any unexpected death outside the hospital. As watchers of CSI know, detecting whether a crime occurred causing the death is the primary goal. In addition, medical examiners can provide a public health service—an early alert system to identify emerging infections. Because my sister died in her own backyard, she fell under the authority of the state of Georgia’s coroner’s system and so her body was taken for autopsy. The unexpected death of a young woman merited an investigation—one that I hoped would provide me with an answer.

  As we waited for the coroner to finish his gruesome investigations, I continued to try to find out more about the hours and days before she died. Were there clues there? Jorge, the friend who’d found her, provided a few details. They were painful to hear. My sister had been on a binge over that Labor Day weekend. A serious binge. She’d called him that morning, filled with remorse and shame but also determined that this time she would be able to stop. She felt weak, tired, achy. She had a stomachache, a headache; her back hurt. He said he’d be right over, and he had been. And that’s when he found her.

  Another sister had spoken to her just a couple of days before she died. “She went to the doctor last week, and she never does that. She had a stomachache. But the doctor didn’t find anything. Anyway, I wonder how much she even told him.”

  I called the office where she’d been seen. “She was here once, several years ago, and then again about a month ago,” the doctor reported. I could hear papers rustling as he paged through her chart. “During that visit she complained of some persistent lower abdominal pain for the past few days. Some nausea, some vomiting, no diarrhea. She denied any past medical history, took no medications. On physical exam she was a thin, tired-appearing woman. Her blood pressure was normal 122/80, heart rate was high but still in the normal range. She had no fever. Her abdominal exam was unremarkable: minimal generalized tenderness, bowel sounds were present. I didn’t do a rectal.” Pages crinkled. “A urinalysis was normal. A CBC [complete blood count—a test that quantifies white blood cells, red blood cells, and platelets] showed no evidence of infection. I thought she might have had a virus and I gave her something for her nausea and a mild painkiller. I told her to call if she didn’t get better.” He paused and the rustling stopped. “I didn’t know she died. I’m sorry.”

  I flew home to our family graveyard, already crowded with the stones of the last generations. My sisters and I received flowers, condolences, casseroles. We waited for the coroner to send us her body and when it was delivered, we buried her. People came from our hometown and her new town. I met Jorge and a few of her other friends from AA. I found then that we all struggled with the same question: how?

  After the funeral I called the coroner’s office, confident that they would have an answer. The report wasn’t complete—laboratory data was still pending—but I persuaded the office assistant to stumble through the report to the conclusion. They had completed the autopsy but had found nothing, no evidence at all of what had killed my sister. The woman on the phone was kind, and apologetic. She could feel my disappointment.

  I went to my first autopsy as a first-year medical student. I had half a year of anatomy under my belt, so I had seen death up close before. There was a small group of medical students and residents there to observe. As we put on the paper jumpsuit, face shield, and mask that are required in an autopsy room, the pathologist briefly outlined the case. It was a young woman who had died just days after giving birth to her first child. The last weeks of her pregnancy had been complicated by high blood pressure—too high to control even with the several medicines that she had been given. She then developed kidney and liver failure and was diagnosed with preeclampsia—a mysterious and unusual complication of pregnancy. The only successful treatment for this is delivery of the baby, and this young woman had had a cesarean.

  But even after this child was delivered the mother remained ill, and then suddenly died. What had killed her? That was the question the autopsy was to answer.

  We trooped into the autopsy room, a large, brightly lit chamber with institutional green walls and dotted with several body-length stainless steel tables. At each station there was a scale, a table for specimens, and a hose trickling water along a trough beneath the table. The deep rumble of an exhaust fan added to the industrial feel of the place.

  Despite the thick paper mask I had fastened over my nose and mouth, the sickly sweetness of the cleansers and preservatives was apparent, and beneath that the fetid animal smell of blood and stool. The body of the young woman lay on the table. She was naked—tiny and vulnerable on this long cool slab. She could have almost been asleep except for the mannequin pallor of her skin. Her short brown hair hung down to the table; her n
eck was elevated on a block of wood. A small tattoo on her shoulder showed a bird in flight.

  The technician announced the time and then, with practiced swiftness, picked up a scalpel and inserted the blade into the young woman’s chest just beneath the left collarbone. He sliced down and across the chest to the bottom of the middle of the rib cage. No blood flowed from this wound.

  He swiftly cut through the ribs on the right, completing a large V across her chest, then continued straight down her abdomen, past the still raw surgical scar from her C-section down to her pubic bone. The calm, utilitarian brutality was fascinating and a little repulsive. Still, the laboratory-like environment and the subtle changes in the body that screamed that no life was left in this shell made the unthinkable possible.

  The technician, a middle-aged man with beefy arms, opened the chest and abdomen, revealing the organs within. One by one the organs were cut free of their connections, brought out of the body, inspected, and then weighed. Every observation and measurement was announced and recorded, to be transcribed later.

  The lungs were lifted out to reveal the heart, which, we were told, was enlarged. She was so small that it looked tiny to me but when it was weighed, there was a murmur among the cognoscenti, an acknowledgment that the heart was indeed surprisingly large. The rest of the organs were removed, inspected, and weighed, then lined up on the table for closer inspection later.

  The technician moved up to the head. He made an incision across the back of the scalp, then peeled the tissue forward as easily as you might fold back the skin from a banana. Using what looked like a power saw, he quickly cut a circle in the top of the skull. He pried the loosened lid of skull bone away with a slender crowbarlike tool. The pale grayish tan ripples of the brain I knew from my own explorations in anatomy class were not there. Instead I saw what looked like a smooth gray ball, blotched with coaster-sized circles of shiny brown-black. The brain was hugely swollen. The coasters were old blood congealed on the surface. Clearly some large blood vessel in her brain had ruptured, filling all the available space and squeezing the brain to a shiny unnatural smoothness. She’d had a cerebral hemorrhage—a consequence of the high blood pressures that even the birth of her child and all of our medicine were unable to bring down.