by Lisa Sanders
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.
So the autopsy didn’t have the answer. And yet, putting it all together—her history of hypokalemia, her unrevealing autopsy, the suddenness of her death, I knew what had happened. I could put the story together in my head. Jorge told me that Julie had been drinking and I knew that she didn’t eat when she was on a binge. That combination would account for the abdominal pain that sent her to the doctor’s office. Her potassium was low. That’s why she’d felt so achy and tired the morning she died. The low potassium must have tripped her heart into a fatally irregular rhythm. Her death would have been almost instantaneous—leaving no time to even call 911.
I spent the following Christmas with my three sisters. In a rented beach house on a cold gray December night, after children and husbands had gone to bed, we sat and talked about Julie. Although more than a year had passed, the loss was still fresh, and this holiday—our first together without her—made the pain even sharper. For them, the peculiar facts of how she died were just more of the jumble of unconnected mysteries that so often trailed my little sister. So I told them in plain words about what my textbooks call hypokalemia, and explained my version of the story of Julie’s death. With this final piece of the puzzle in place, it became easier to fit the story of her sudden death into the longer story that we already knew—the story of Julie’s disease, the story of her alcoholism, and then into the even longer story of her life. Yes, she was the drinker who died, but she was also the funny, earthy woman whose biting sense of humor helped her handle the toughest breaks tossed her way with a wink and a wicked one-liner.
“You know Julie would just laugh if she could see us now,” one sister remarked dryly, dotting her tears on a ragged tissue. “She always said that it’s not really Christmas until everybody cries. We stay up too late, eat too much, drink too much, see too many people we love and hate. Just too much going on for the human heart to handle.” And then, suddenly, we were able to start trading our accounts of that Julie. She had a way of laughing about the mundane suffering of everyday life that I envied. It felt good to miss her, that much, with all my sisters, and in this way.
We kept up the laughter and the stories until the approaching dawn signaled that it was time to wrap it up. By then medicine wasn’t a solace, or even part of the evening. That version of the story had long ago drifted into the deep background of what we all knew now. The chilly, precise language of potassium and arrhythmia had been aired out, unpacked, and retranslated back into the comfortable idioms families speak when the medical personnel have long since left the room. Ultimately, medicine can’t bring comfort, but it does help tell the final story in a life. Knowing how someone died makes it easier to remember how they lived. And after medicine has finished doing all that it can, it is stories that we want and, finally, all that we have.
ACKNOWLEDGMENTS
This book originated in the pages of the New York Times Magazine and was only possible because Paul Tough, an editor there, believed that the stories I told in casual conversation could be successfully translated onto the pages of the magazine. Thank you, Paul, for your vision. Over my years there, I have been the beneficiary of the generous guidance of many great editors. Thank you Dan Zalewski, Joel Lovell, Catherine Saint Louis, Ilena Silverman, Katherine Bouton, and Gerry Marzorati.
To the patients who shared with me some of the most terrifying moments of their lives—those hours, days, sometimes weeks between the time when mysterious symptoms appeared and the correct
diagnosis finally made—I owe an incalculable debt of gratitude. I have learned so much from you all. Thanks also to the doctors who allowed me to see and recount the uncertainty they faced as they tried to unravel the mysteries of these patients. The diagnostic process is much more than the triumphant declaration of the cause of an illness, and I am deeply indebted to the doctors who allowed me to map the landscape of that uncertainty.
With all these wonderful stories at hand, I was shocked by the challenge of shaping them into the book I wanted to write. Mindy Werner nursed this inchoate mass of ideas and stories into the foundation of this book. Steve Braun used his considerable skills as a reporter to help me find just the right building materials. And Karl Weber, thank you for helping me shape these chapters into the book it is now. My running partners Elizabeth Dillon and Serene Jones listened as I struggled through these chapters as we took on the hills of East Rock. No matter how breathless, they could always be counted on to ask the questions that needed to be asked. Anna Reisman, Eunice Reis man, John Dillon, Pang Mei Chang, Betsy Branch, and Allyx Schiavone read through these chapters more times than I can count—and without complaint. Their comments steered me back whenever I wandered deep into medical arcania, and my stories are better told because of their help. At Yale, Steve Huot, Julie Rosenbaum, August Fortin, Donna Windish, Andre Sofair, David Podell, Michael Green, Dan Tobin, Steve Holt, Michael Harma, Jeanette Tetrault, Jock Lawrason, and the rest of the faculty, staff, and residents created a stimulating and supportive community in which to do this work. Tom Duffy, Frank Bia, Nancy Angoff, Asghar Rastegar, Patrick O’Connor, Majid Sadigh, and Eric Holmboe taught me almost everything I know about being a doctor and helped me shape many of the ideas in this book. The resident reports presided over by Jerome Kassirer were models of clear medical thought and great storytelling. I paged through my notes of these hours of medical exegesis frequently as I was working through these chapters—especially those on thinking.
Jake Brubaker, Edmund Burke, Laura Cooney, Onyi Offor, Valerie Flores, Marjory Guerra, Jason Brown, and Clayton Haldeman, provided an enthusiastic cheering section each week as I slowly made my way through the writing of this book. Paul Attanasio had a vision for how stories like mine could be told on television. Thank you for inviting me into the miraculous world of television doctoring. Thanks also to David Shore—who tapped his inner House to bring life to the doctor-detective Gregory House and his passionate pursuit of diagnosis, which made this topic so near and dear to my heart part of the national conversation.
Charles Conrad, my editor and guiding light at Broadway Books, believed in this book from the beginning. His quiet wit, vision, and (thank God) patience, provided the kind of steady hand I needed throughout. Copy editor Frederick Chase had an eye for detail that prevented any number of embarrassing errors. My friend and agent Gail Ross was certain this was a book well before I was, and held my hands through it all. Gail, I owe you big. Thanks also to Jennifer Manguera, who worked hard to keep my literary house in order.
Finally, I am grateful to my daughters, Tarpley and Yancey. You have been the center of my world and the gravity in my solar system. When the orbit of this book took me to the darkest part of my own personal universe, your love pulled me back to the warmth of this wonderful family I managed to be part of. And to Jack, without whom none of this would have been possible—which is why this book is dedicated to you.
NOTES
Introduction: Every Patient’s Nightmare
xv “cookbook medicine”: Berner E, Graber M. Overconfidence as a cause of diagnostic error in medicine. Am J Med. 2008;121:S2–23.
xxii “an inferential process, carried out under conditions of uncertainty”: Kassirer J. Teaching problem-solving: how are we doing? N Engl J Med. 1995;332:1507–1509.
xxii Institute of Medicine released a report on the topic: Kohn LT, et al., eds. To err is human: building a safer health system. Committee on Quality of Health Care in America, Institute of Medicine, National Academy Press, Washington, D.C., 2000. Book text is available online at http://books.nap.edu/openbook.php?isbn=0309068371.
xxii Depending on which study you believe: Graber M, et al. Reducing diagnostic errors in medicine: what’s the goal. Acad Med. 2002;77:981–999. Holohan TV, et al. Analysis of diagnostic error in paid malpractice claims with substandard care in a large healthcare system. South Med J. 2005;98(11):1083–1087.
xxii Studies suggest that between 10 and 15 percent: Berner E, Graber M. Overconfidence as a cause of diagnostic error in medicine. Am J Med. 2008;121:S2–23.
xxii In a study of over thirty thousand patient records: Leape L, et al. The nature of adverse events in hospitalized patients: results of the Harvard Medical Practice Study II. N Engl J Med. 1991;324:377–384.
xxii And while postmortem studies: Goldman L, et al. The value of the autopsy in three different eras. N Engl J Med. 1983;308:1000–1005.
xxiii A study done … in Switzerland: Sonderegger-Iseli K, et al. Diagnostic errors in 3 medical eras: a necropsy study. Lancet. 2000;355:2027–2031.
xxiii Another study done for the Agency: Shojania K, et al. The autopsy as an outcome and performance measure. Evidence Report/Technology Assessment no. 58 (Prepared by the University of California at San Francisco–Stanford Evidence-Based Practice Center under Contract No. 290-97-0013), AHRQ Publication no. 03-E002. Rockville, MD, Agency for Healthcare Research and Quality, October 2002.
Chapter 1: The Facts, and What Lies Beyond
6 Indeed, the great majority of medical diagnoses: Hasnajn M, Bordage G, et al. History taking behaviors associated with diagnostic competence of clerks: an exploratory study. Acad Med. 2001;76:10:S14–S16. Hampton JR, et al. Relative contributions of history taking, physical examination and laboratory investigation to diagnosis and management of medical outpatients. BMJ. 1975;2:486–489.
6 In recordings of doctor-patient encounters: Beckman HB, Frankel RM. The effect of physician behavior on collection of data. Ann Intern Med. 1984;101:692–696.
6 In one study doctors listened: Dyche L, Swiderski D. The effect of physician solicitation approaches on ability to identify patient concerns. J Gen Int Med. 2005;20:267–270. Marvel MK, et al. Soliciting the patient’s agenda: have we improved? JAMA. 1999;281:283–287. Rhoades DR, et al. Speaking and interruptions during primary care office visits. Fam Med. 2001;33:528–532.
6 In these recorded encounters: Beckman HB, Frankel RM. The effect of physician behavior on collection of data. Ann Intern Med. 1984;101:692–696.
7 In one study, over half of the patients interviewed: Baker LH, O’Connell D, Platt FW. What else? Setting the agenda for the clinical interview. Annals Int Med. 2005;143(10):776–771.
7 In other studies doctor and patient disagreed: Starfield B, Wray C, et al. The influence of patient-practitioner agreement on outcome of care. Am J Public Health. 1981;71:127–131. Burack RC, Carpenter RR. The predictive value of the presenting complaint. J Fam Pract. 1983;16:749–754.
7 “If you ask questions”: Epstein RM, Street RL. Patient centered care for the 21st century: physicians’ roles, health systems and patients’ preferences. ABIM. 2008 Summer Forum, “From Rhetoric to Reality: Achieving Patient Centered Care.”
7 “you can never foretell”: Doyle AC. “The Sign of Four,” Sherlock Holmes: The Complete Novels and Stories, vol. 1. NY: Bantam, 1986, p. 175.
7 differences between the average and the individual: Fosarelli P. Medicine, spirituality and patient care. JAMA. 2008;300(7):836–838.
8 “What the patient brings to the process”: Platt F. Two collaborating artists produce a work of art: the medical interview. Arch Int Med. 2003;163:1131–1132.
8 A visit to a doctor’s office: Forem J. Make the most of a doctor’s visit. Boston Globe, September 19, 2005.
8 In 1989, the average doctor’s appointment: Mechanic D, et al. Are patient office visits with physicians getting shorter? N Engl J Med. 2001;344(3):198–204.
8 Studies suggest that getting a good history: Stewart
M, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804. Levinson W, et al. A study of patient clues and physician responses in primary care and surgical settings. JAMA. 2000;284:1021–1027.
8 can even reduce visit time: Mauksch LB, et al. Relationship, communication and efficiency in the medical encounter. Arch Int Med. 2008;168(13):1387–1395.
8 patient satisfaction is higher: Stewart M, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804. 12 similar patterns in other patients: Allen JH, et al. Cannabinoid hyperemesis: cyclical hyperemesis in association with chronic cannabis abuse. Gut. 2004;52:1566–1570.
12 Other case reports followed: Allen JH, de Moore GM, et al. Cannabinoid hyperemesis: cyclical hyperemesis in association with chronic cannabis abuse. Gut. 2004;52;1566–1570. De Moore GM, Baker J, et al. Psychogenic vomiting complicated by marijuana abuse and spontaneous pneumonmediastinum. Aust NZJ Psychiatry. 1996;30:290–294. Roche E, Foster PN. Cannabinoid hyperemesis: not just a problem in Adelaide Hills. Gut. 2005;54:731.
14 Studies have repeatedly shown: Hill J. Effect of patient education on adherence to drug treatment for rheumatoid arthristis. Ann Rheumatic Dis. 2001;60:869–875. Kripalani S, et al. Interventions to enhance medication adherence in chronic disease. Arch Int Med. 2007;167(6):540–549.
14 Patients who understand their illness: Lin E HB, et al. Working with patients to enhance medication adherence. Clin Diabetes. 2008;26:17–19.
16 A diagnosis of terminal cancer: Cassell EJ. Diagnosing suffering: a perspective. Annal Int Med. 1999;131:531–534.