Every Patient Tells a Story (38 page)
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 neck 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.
When the coroner’s assistant told me that my sister’s autopsy was unrevealing,
I thought about that young woman. Involuntarily I pictured my sister lying on that aluminum slab, the deep blue eyes closed, the sun-bleached hair matted around her, her innermost recesses exposed to the expert eye of those who didn’t even know her. It hurt to imagine it. Surely they’d seen traces of the hard life she’d led: dark lines in her lungs revealing her long history of tobacco; an enlarged liver—or perhaps a liver scarred and shrunken from her years of drinking. There was a painful kind of embarrassment as these technicians learned the secrets of my little sister’s life. As if they’d walked in on my sisters and me in grief and had somehow seen all our secrets as well. Yet nothing they learned would account for her sudden and unexpected death. I hung up the phone and took a few deep breaths.
These disappointing results actually did have something to tell me. The autopsy would have shown if she’d had a massive bleed somewhere. Or a large clot in her heart or her lungs. Or a deadly infection. Instead, she appeared to be completely normal.
There are only a few things that can kill you without leaving a mark. Had she overdosed on drugs? Alcohol was her drug of choice—did she add anything else to the mix? And if she had, did she do it on purpose? The thought of a despair leading her to take an intentional overdose was almost more than I could bear. The police hadn’t found any pill bottles or evidence of illegal drugs at the scene and there was no note. Or could she have had an abnormal heart rhythm? And if she had, what could have caused it? The next step would be for the coroner to examine her blood and tissues for causes that would be invisible to the eye.
The last time I spoke with my sister was on her birthday. I could tell she’d been drinking because she didn’t want to talk. “What’s new?” “Nothing much,” she reported. “Same old, same old. Going to work, going to meetings, going home.” She took a deep drag off her cigarette. “How about you?” she asked, avoiding any real talk about her life. I told her a bit about my two kids and we ended our brief conversation, with dissatisfaction at both ends. She said she was going to meetings, but if she hadn’t been drinking
she would have been full of details, of stories, of humor. My sister was a cheerless drunk: secretive, defensive, quiet; so different from the exuberant, down-to-earth woman she’d been before drinking had taken over her life.
As we cleaned up after the funeral reception, my sisters and I talked about her last few years. The sister who had remained closest, both geographically and emotionally, recalled taking her to the hospital once before. “You remember, don’t you? She was vomiting up blood and I took her to Roper. They took some of her blood and after she was ’scoped, a young doctor came in to see her. He told her that her potassium was dangerously low and they had to give her potassium in her veins.”
Low potassium—hypokalemia—is a well-described complication of alcoholism. When taken in excess, alcohol can cause the body to dump certain electrolytes—like potassium, like magnesium. Normally this would not cause a problem because we replace these electrolytes every day. Most of us eat far more than our bodies can ever use. But alcoholics sometimes don’t replace these vital chemicals. And once these key electrolytes get outside the normal range, it’s hard for our bodies to work well. If they get too far from normal, then they can’t work at all: our heart simply stops and we die.
Our bodies are well protected against this, normally. But for my sister these were not normal times. Could this critical imbalance have occurred again? The circumstances were right: she’d been on a binge, and probably hadn’t been eating. I knew that in the past she’d lost five, even ten pounds while on a binge because she simply didn’t eat. I’d forgotten about her history of hypokalemia. That had happened right after a binge too. Without potassium your heart could just stop beating. No pain; no time to reach for the phone. Could that be what killed her?
After several weeks the coroner was finally able to release her report. No abnormalities were found other than those normally seen after death. There was alcohol but no poison, no drugs, no sign of infection. Her electrolytes were completely out of whack. Her potassium was not too low—as I had expected—but much too high. I called the pathologist who had done the autopsy. Could my sister have died from this unanticipated elevation in her potassium? No. She told me that the high potassium I saw was due to the
changes that occur in all bodies after death. If there had been a critically low level of potassium or some other vital chemical, which ultimately made her heart stop, death itself had erased all the evidence.