Notes

1. How Little We Know

4    He tells me: The medications Dr. Cabin puts me on are Tenormin, a beta-blocker (slows the heart rate and the force of heart contractions, and lowers blood pressure); Vasotec, an ACE (angiotensin-converting enzyme) inhibitor (helps lower blood pressure and makes the heart beat stronger by preventing particular enzymes from narrowing blood vessels); Lescol (lowers cholesterol levels and reduces inflammation); and aspirin (thins the blood, prevents clotting, and also reduces inflammation).

5    Hundreds of thousands: For a delightful, informative account of bypass surgery, see Joseph Epstein’s “Taking the Bypass: A Healthy Man’s Nightmare,” New Yorker (April 12, 1999), pages 57–63. In 1999, according to the 2002 Heart and Stroke Statistical Update, published by the American Heart Association, 571,000 coronary artery bypass surgical procedures were performed on 355,000 patients in the United States.

9    Although he describes: Jerome Groopman’s essay “Heart Surgery, Unplugged: Making the Coronary Bypass Safer, Cheaper, and Easier” (New Yorker [January 11, 1999], pages 43–51) is an excellent primer on bypass surgery and its attendant risks. “By now,” Groopman writes, “heart surgeons have mastered the techniques of grafting and suturing, and for those patients who qualify for the operation success rates are excellent—greater than ninety-five percent.”

Groopman reiterates what Rich has told me—that the majority of serious side effects and fatalities result not from surgery itself but from the heart-lung machine. The problems begin as the cooled blood flows over the machine’s porous membranes: when oxygen bubbles into the blood, it “roughs up” the blood cells. The white cells, which serve to protect against infection, become less effective, and the rate of postoperative infection is relatively high. The roughed-up cells also release inflammatory substances, which irritate the lungs. The blood platelets are damaged by the artificial oxygenation, too, and the patient becomes prone to bleeding. More damage is caused by small clots—composed of blood fats, proteins, platelets, and clumped red blood cells—that form around the oxygen bubbles. When these clots are infused back into the patient, they may block capillaries in sensitive tissues, like those of the brain, the retina, and the lung. Patients on the heart-lung machine have a two-to-four-percent risk of stroke and a twenty-five-percent risk of transitory retinal damage. And from thirty to fifty percent of patients will experience a syndrome [called] “pump head,” in which they suffer significant cognitive deficits: memory loss, inability to concentrate, difficulties in recognizing patterns, and an inability to perform basic calculations. Although the cognitive deficits usually subside over a period of weeks or months, they may delay recovery, and some physicians suspect that they contribute to the clinical depression that often afflicts patients after heart surgery. In addition, patients retain about twenty pounds of fluid as a result of the dilution of their blood in the machine and the trauma of surgery, and this excess fluid puts a further strain on the heart and the lungs. In fact, the very sick or the elderly have been considered ineligible for bypass surgery simply because they are too fragile to withstand the rigors of the heart-lung machine.

11   And this was ten months: The figure of ninety-eight thousand deaths via medical errors appeared in the New York Times, November 30, 1999 (“Group Asking U.S. for New Vigilance in Patient Safety,” by Robert Pear), and is based on a study done by the National Academy of Science’s Institute of Medicine. Readers should also see “Policing Health Care,” by Lawrence K. Airman, and “Preventing Fatal Medical Errors,” both in the New York Times, December 1, 1999. A follow-up article on deaths due to medical errors, “Getting to the Core of Medical Mistakes,” by Lawrence K. Altman, appeared in the New York Times, February 29, 2000. Beginning in its June 4, 2002, issue (I am writing this in June 2002), the Annals of Internal Medicine is running a series of eight articles that report on medical errors.

My friends’ insistence that I go to a major hospital is also borne out in a recent study, “Hospital Volume and Surgical Mortality in the United States,” published in the April 11, 2002, issue of the New England Journal of Medicine (NEJM), pages 1128–1137. The study, based on data from 2.5 million procedures—cardiovascular procedures and cancer resections—concluded that “in the absence of other information about the quality of surgery at the hospitals near them, Medicare patients undergoing selected cardiovascular or cancer procedures can significantíy reduce their risk of operative death by selecting a high-volume hospital.” See also the accompanying editorial, “Volume and Outcome—It Is Time to Move Ahead,” in the same issue (pages 1161–1163).

13   When Rich calls: Here is Dr. Hashim’s description of the surgery, from the “Discharge Summary”:

On 2/12/99, coronary artery bypass graft surgery times five was performed using left internal mammary artery to the left anterior descending artery, free right internal mammary artery to the ramus intermedius artery, radial artery to the right posterior descending artery, saphenous vein graft to the diagonal artery, saphenous vein graft to the obtuse marginal artery. Total pump time was one hour and 55 minutes. Total crossclamp time was one hour and 11 minutes.

An intraoperative transesophageal echocardiogram revealed preserved global function with an [sic] left ventricular ejection fraction of 50%, no regional wall motion abnormalities, mild mitral regurgitation, no aortic insufficiency, no tricuspid regurgitation, no shunting, normal pulmonary vein and transmitral flows, no thrombus, no effusion, poorly visualized aortic distal arch. Post pump there were no changes except the ejection fraction was improved to 60%.

The patient tolerated the procedure well and was weaned from cardiopulmonary bypass without the use of intropic support and transferred to the Cardiothoracic Intensive Care Unit in stable condition where he awoke from anesthesia with no neurological deficits.

And here is Dr. Cabin’s description of what the cardiac catheterization revealed: “Severe triple vessel coronary disease with an ejection fraction of 30–35%. His right coronary artery and left circumflex coronary arteries were totally occluded and filled via collaterals and he had a 95% stenosis of the proximal LAD [left anterior descending artery].”

But note that Dr. Hashim’s description of cardiac catheterization is slightly different—a reminder that these numerical figures are not absolute “scientific” realities, but estimates: The patient “underwent cardiac catheterization on 2/11/99. This revealed normal left main. The left anterior descending had 80% stenosis. The circumflex had 95–100%. The right was 100%, left ventricular end-diastolic pressure was 16–20, left ventricular ejection fraction was 30–35%.”

When Rich returns the postoperative reports to me, he adds a note: “FYI. Looks great—you’re going to outlive all your EHHS buddies! Love, Rich.”

3. The Consolation of Diagnosis

25   Celebrating: Compare the chimera of total body transplants to this—sixty-five years ago—from “Lindbergh, Carrel & Pump: They Are Looking for the Fountain of Age,” in the June 13, 1938, issue of Time:

From this moment [we are] opening to experimental investigation a forbidden field: the living human body [Dr. Carrel says]…organs removed from the human body, in the course of an operation or soon after death, could be revived in the [Charles] Lindbergh pump, and made to function again when perfused with an artificial fluid… When larger apparatus are built, entire human organs, such as pancreas, suprarenal, thyroid, and other glands…would manufacture in vitro the substances supplied today to patients by horses or rabbits.

“In effect,” Time declares, “Dr. Carrel, with the Lindbergh pump, is looking for the fountain of abundant, replaceable age.”

“It makes an arresting picture,” Time concludes, “one that French, Roman Catholic Dr. Carrel is romantic and mystic enough to appreciate—two men, one an ageless seer, the other a young and devoted inventor, sitting on two rocks in the middle of a sea, talking, planning ways to prolong the life and end the ills of mankind.”

Compare also (this time, thirty-eight years ago) a September 24, 1965, Life magazine feature, “Control of Life: Part 3, Manmade and Transplanted Organs Usher In an Era of Rebuilt People,” in which we find the following statement: “So confident are medical researchers in the feasibility of heart replacement that the U.S. government has launched a crash program to subsidize the development by industry of an implantable heart that could be put into human patients within five years.”

For a sane, fascinating history of the hopes and disasters that accompanied the attempt to build and implant these artificial hearts, see Renée C. Fox and Judith P. Swazey, Spare Parts: Organ Replacement in American Society. More often than not, sad to say, the people in whom these experimental machines were placed seemed to be kept alive mainly to keep the machines going.

For an excellent overview of the ethical issues involved, see Stanley J. Reiser’s essay, “The Machine as Means and End: The Clinical Introduction of the Artificial Heart,” in After Barney Clark: Reflections on the Utah Artificial Heart Program, pages 169–175. “Machines,” Reiser writes, “also can become key agents of a view developed through the Scientific Revolution that nature should be mastered, not lived with. What greater act of domination could we as humans devise than to substitute a machine for the most conspicuous agent of life, the heart?” Reiser alerts us to the dangers of our infatuation with technology: “The ideal of a value-free science and a compelling desire to apply rapidly what we can produce make for a powerful combination in a modern world in which the capacity to produce innovations may outstrip our capability to wisely integrate them into the fabric of personal life and societal objectives. The creating of technologic means simply comes easier to us than the development of rational and humane ends to apply them” (pages 174–175).

26   Consider, though: The data concerning drug-resistant organisms in hospitals are from Laurie Garrett’s Betrayal of Trust: The Collapse of Global Public Trust, page 278. Jane E. Brody, in a New York Times article, “A World of Food Choices, and a World of Infectious Organisms” (January 30, 2001), states that “the potential for widespread disaster has definitely expanded.” She cites a study from the Centers for Disease Control and Prevention, which found that “food-borne illness accounts for a staggering 76 million illnesses, 323,914 hospitalizations and 5,194 deaths each year in the United States.” In addition, “The disease-control centers estimate that E. coli O157:H7, which was unknown as a cause of food poisoning before 1980, now infects as many as 20,000 Americans a year and kills up to 500.”

27   In our time: The quotation regarding the downgrading of the interaction between patient and doctor is from James LeFanu, The Rise and Fall of Modern Medicine, page 223.

27   Or consider: The 15 to 75 percent figure regarding the disparity between television resuscitations and actual resuscitations comes from Dr. Richard Horton, “In the Danger Zone,” New York Review of Books (August 10,2000), pages 30–34 [30].

28   And though nearly 40 percent: The figures regarding the percentage of women who fear dying from breast cancer come from “Fearing One Fate, Women Ignore a Killer,” by Benjamin J. Ansell (New York Times, January 9, 2001). Readers should also see “Lessons of the Heart: A Devastating Lack of Awareness,” by Denise Grady (New York Times, June 24, 2001).

28   Despite our sophisticated testing: For the difficulty of diagnosing heart disease, see especially Chapter 11 of Richard H. Helfant’s The Women’s Guide to Fighting Heart Disease.

28   The American Heart Association reports: AHA 2002 Heart and Stroke Statistical Update, page 11.

29   But we now learn: Stephen Klaidman discusses the absence of ruptured plaque in people who experience heart attacks in Saving the Heart: The Battle to Conquer Coronary Disease, page 214.

29   In addition, studies: For basics concerning statins and their relation to heart disease, see the New York Times, January 24, 2001, “Heart Study Affirms Value of Statin Drugs.” See also “U.S. Panel Backs Broader Steps to Reduce Risk of Heart Attacks,” May 16, 2001, by Gina Kolata; and “Cholesterol Fighters Lower Heart Attack Risk, Study Finds,” November 14, 2001, by Lawrence K. Altman. See also “Early Statin Treatment Following Acute Myocardial Infarction and 1-Year Survival,” by Ulf Stenestrand and Lars Wallentin, in the Journal of the American Medical Association (JAMA) 285:4 (January 24–31, 2001), pages 430–436; and “Executive Summary of the Third Report of the National Cholesterol Education Program (NCEP) Expert Panel on Detection, Evaluation, and Treatment of High Blood Cholesterol in Adults (Adult Treatment Panel III),” in JAMA 285:19 (May 16, 2001), pages 2486–2497.

Concerning statins as the best-selling drugs, IMS Health’s “Drug Monitor” states, “Top 5 best selling drugs for the 12 months ending March 2002 was [sic] again Lipitor, Losec, Zocor, Ogastro, and Norvasc. Lipitor continued to show the highest growth in the top five at 29% at constant exchange” (emphasis theirs).

30   But the paradoxical finding: Louise Russell discusses the correlation (and lack of same) between cholesterol and heart disease in Educated Guesses: Making Policy About Medical Screening Tests, pages 45–74.

30   Furthermore, these risk factors: For an analysis of the “alternative explanation,” see Joseph B. Muhlestein, “Chronic Infection and Coronary Artery Disease,” in Medical Clinics of North America 84:1 (January 2000), pages 123–148. Readers should also consult P. W. Wilson et al., “Prediction of Coronary Heart Disease Using Risk Factor Categories,” Circulation 97 (1998), pages 1837–1847.

In an article entitied “C-Reactive Protein, Inflammation, and Coronary Risk,” we find the following: “Despite progress in the prevention of cardiovascular disease, a significant proportion of first cardiovascular events occurs among individuals without traditional risk factors” (David A. Morrow and Paul M. Ridker, Medical Clinics of North America 84:1 [January 2000]). See also Paul W. Ewald, Plague Time: How Stealth Infections Cause Cancers, Heart Disease, and Other Deadly Ailments (page 117): “If all the noninfectious risk factors are combined, they explain only about half the risk of acquiring atherosclerosis. In other words, about half of the people with atherosclerosis acquire it even though they do not have elevated risk factors for the disease. Something big is missing from the picture.”

30   In addition, some researchers: David Weatherall discusses the correlation between low birth weight and the risk of heart disease in Science and the Quiet Art: The Role of Medical Research in Health Care, pages 173–174. See also a study by D. J. P. Barker et al, “Fetal Nutrition and Cardiovascular Disease in Adult Life,” Lancet 341 (1993), pages 938–941. “in both healthy subjects”: Information regarding the predictive power of established risk factors versus exercise capacity comes from Jonathan Myers and Manish Prakash et al., “Exercise Capacity and Mortality Among Men Referred for Exercise Testing,” NEJM 346:11 (March 13, 2002), pages 793–801.

31   But they are: Klaidman discusses the unreliability of using diagnostic tests such as angiography as treatment guides: “In recent years, however, it has become clear that angiography is not good enough. It does not spot all blockages in the coronary arteries, and more importantly, many of the ones it misses, either because they are relatively small or not in the biggest arterial channels, are more likely to cause heart attacks than most of the ones it identifies” (page 206).

31   “Put a patient”: When, in the spring of 2002, my doctors in New York City—my general practitioner and cardiologist—suggest I go on a low dose of beta-blockers, since statistical studies indicate that they prevent heart attacks in people who have already suffered from heart disease, Rich disagrees. My resting heartbeat is now about 48 to 50 (my blood pressure steady at about 115/75; my cholesterol 148; HDL 43; LDL 75), and the beta-blockers would lower my heart rate even further. Rich sees no need for it: the possible gains are not worth what he sees as the probable risks associated with the long-term use and side effects of any medication. When I call Martin Baskin, my family doctor (an internist), and tell him what Rich has said, he laughs. “Well,” he says, “that’s why medicine is an art, and not a science.”

Compare the clinical judgment of a doctor, and its relation to a doctor’s training and clinical experience, to the following, from an interview with Lincoln Quappe, a firefighter who died in the World Trade Center on 9/11:

When you’re in a fire, things are running through your brain a million times a minute, and you’re just trying to do your job. In those situations you look back at your experience. You think, I got burnt the last time I stayed around in this situation. I won’t let that happen to me again. You go by all the telltale signs and from what other firemen have told you. Guys say, Listen, we saw this happen. We talk about fires all the time. We’re constantly learning, learning every day, and even in a mundane fire you learn something, and you’re like, Oh, man, I didn’t know that. Or I forgot about that, but now it’s reinforced in my mind. I’ve been burnt before so I have an idea of how much heat I can take…

It’s hard to say which fires are most dangerous. Each is completely different. Some fires that seem small can be the most horrific with firemen dying. Even a silly little fire can get a guy killed. It all comes down to fate. But there are signs that you can pick up on at a fire when it’s getting bad. I don’t have all the answers but I have an idea when it’s time to go. I use other guys in my company as barometers. I’ll be in contact with my guys. I know what they look like as far as body features. I hear them on the radio. If Bobby says it’s time to get out, I’m going. I use him as my guardian angel, because I know he’s seen a lot of things in the past. The captain too. If the captain says, We’re getting out of here, I’m going. I don’t want to die here.

(New York Times, “A Voice from the Rubble,” interview by Tom Downey, September 23, 2001)

31   “In fact”: See Russell, for example, pages 58–60, for a discussion of the variability and unreliability of laboratory test results.

Lab tests for cholesterol are not alone in being unreliable. When a federal environmental initiative designed to cut down on the use of mercury, which can pollute air and water if not disposed of properly, led hospitals and doctors to switch from mercury-based blood pressure cuffs to electronic cuffs, leading medical experts, joined by the American Heart Association and the National Heart, Lung, and Blood Institute, questioned the reliability of the electronic blood pressure cuffs. Many critics claimed they are often dangerously flawed and give readings that can be in error by 30, 40, or even 50 points. See the front page article by Gina Kolata, “Risk Seen in Move to Replace Gauge of Blood Pressure,” New York Times, June 16, 2002.

32   By contrast: LeFanu discusses this paradox (“the more tests a doctor performs…”), and Medawar’s views on the “art and science” of medicine, on page 222.

32   “would go further”: Sherwin Nuland, “Whoops!”(a review of Atul Gawande’s Complications: A Surgeon’s Notes on an Imperfect Science), New York Review of Books (July 18, 2002), pages 10–13 [11]

32   Thus, for example: Both LeFanu (page 222) and Russell (pages 10–11) provide clear, informative discussions of the significance of false positives and unnecessary treatments.

33   Even if one receives: Klaidman, page 173, cites the low effectiveness of socalled optimal treatments.

33   “Clinical judgment”: Ibid., page 174.

34   “The cardiologists”: Ibid., pages 173–174.

34   “The great secret”: Lewis Thomas, The Lives of a Cell: Notes of a Biology Watcher, page 100.

34   What happens: “Contrary to expectations,” David Mechanic writes in NEJM 344:3 (January 18, 2001), page 198, “the growth of managed health care has not been associated with a reduction in the length of office visits. The observed trends cannot be explained by increases in physicians’ availability, shifts in the distribution of physicians according to sex, or changes in the complexity of the case mix… The average duration of office visits in 1989 was 16.3 minutes according to the NAMCS and 20.4 minutes according to the SMS survey. According to both sets of data, the average duration of visits increased by between one and two minutes between 1989 and 1998.” Still, partly because, as Mechanic notes, “physicians are expected to do more now than they were in the past during each visit with a patient” (page 202), both patients and physicians—everyone I talk with—continue to believe that office visits are, or seem to be, shorter.

35   These studies also show: Concerning gatekeeping and patient trust, Mechanic writes, “Aware that their physicians are uncomfortable with some issues, patients must either directly broach the issue, which may undermine their close relationship, or keep their problems to themselves and thus forgo treatment that would be covered by their insurance. Either way, trust in the physician is strained.” JAMA 275:21 (June 5, 1996), page 1695.

35   “the perpetually increasing”: John Kirklin’s comment is from Klaidman, page 173.

35   “While directors”: Salvatore Mangione and Linda Z. Nieman, “Cardiac Auscultatory Skills of Internal Medicine and Family Practice Trainees: A Comparison of Diagnostic Proficiency,” JAMA 278:9 (September 3, 1997), pages 717–722.

36   “if they did not”: Osler’s adjuration to his medical students is from Michael Bliss’s marvelous biography, William Osler: A Life in Medicine, page 270. In addition to being an excellent biography of Osler, Bliss’s book gives us a rich, fascinating, well-informed history of medicine and medical practice during the years of Osler’s life, 1849 to 1919.

37   “50 percent”: On the basis of an interview with Stephen Oesterle, Klaidman (page 192) cites the figure of 50 percent for unnecessary angioplasty. See also “Study Finds Inefficiency in Health Care; Employers Are Said to Pay $390 Billion a Year in Unneeded Costs,” by Milt Freuden-heim, New York Times, June 11, 2002.

37   In addition, many cardiologists: Klaidman calls our attention to such conflicts of interest on page 192 ff; readers should also see a series of articles entitled “Medicine’s Middlemen,” in the New York Times: “Medicine’s Middlemen: Questions Raised of Conflicts at 2 Hospital Buying Groups” (March 4,2002), by Walt Bogdanich; “When a Buyer for Hospitals Has a Stake in Drugs It Buys” (March 26,2002), by Mary Williams Walsh; and “Hospital Group’s Link to Company Is Criticized” (April 27, 2002), also by Walsh. (Other articles in this series appeared on April 23, April 30, and June 7, 2002.) See also Melody Petersen, “Methods Used for Marketing Arthritis Drug Are Under Fire” (April 11, 2002) and “Suit Says Company Promoted Drug in Exam Rooms” (May 15, 2002), both in the New York Times. For a recent view of what might be done to prevent or manage conflicts of interest, see “Managing Conflicts of Interest in the Conduct of Clinical Trials,” JAMA 287:1 (January 2, 2002).

38   “All they know”: Klaidman, page 223.

38   “The time invested”: Bernard Lown, The Lost Art of Healing, page 16.

38   “The good physician”: Francis Peabody’s speech, “The Care of the Patient,” is reprinted in The Caring Physician: The Life of Dr. Francis W. Peabody, by Paul Oglesby, pages 155–174.

39   In all significant categories: A. K. Jha, M. G. Shlikpak, W. Hosmer, C. D. Frances, and W. S. Browner, “Racial Differences in Mortality Among Men Hospitalized in the Veterans Affairs Health Care System,” JAMA 285:3 (January 17, 2001), pages 297–303. For information on the gap in health care for blacks, see Sheryl Gay Stolberg, “Race Gap Seen in Health Care of Equally Insured Patients,” New York Times, March 21, 2002.

40   “some patients”: The quotations from Hippocrates and Plato are from Stanley Jackson’s Care of the Psyche: A History of Psychological Healing, page 40.

40   For the two million people: Concerning the condition of people living in poor nations, Helen Epstein and Lincoln Chen write,

Indignation over the high cost of AIDS drugs has helped focus international attention on the global AIDS epidemic and by the end of 2001, an antiretroviral drug cocktail could be obtained in some developing countries for $300 to $500 per year, many times less than the price in the West. However, for a variety of reasons, including the sluggishness of government bureaucracies, the stinginess of drug companies, and the fact that even at these low prices the drugs are still too expensive and difficult to distribute, few AIDS patients in developing countries are actually receiving these drugs or, for that matter, any modern medications at all beyond the cheapest antibiotics. (“Can AIDS Be Stopped?” New York Review of Books (March 14, 2002), pages 29–31 [30])

Readers should also see “How Sick Is Modern Medicine?” by Richard Horton, New York Review of Books (November 2, 2002), pages 46–50 (especially page 50).

41   And the key element: Jerry has published a number of papers on adherence and antiretroviral therapy, papers demonstrating that adherence is central to successful suppression of HIV, and that trust—the doctor-patient relationship—is central to successful adherence. He has also, in these and many other papers, suggested strategies that make trust—and success—more likely. See, for example: A. Williams and G. H. Friedland, “Adherence, Compliance, and HAART,” AIDS Clinical Care 9:7 (1997), pages 51–54,58; F. L. Altice and G. H. Friedland, “The Era of Adherence in Antiretroviral Therapy,” Annals of Internal Medicine 129 (1998), pages 503–505; G. H. Friedland and A. B. Williams, “The Future: Attaining Higher Goals in HIV Treatment: The Central Importance of Adherence,” AIDS 13, Suppl 1 (1999), pages S61-S72; B. Soloway and G. H. Friedland, “Antiretroviral Failure: A Biopsychosocial Approach,” AIDS Clinical Care 12:3 (2000), pages 23–25,30; and F. Altice, F. Mostashari, and G. H. Friedland, “Trust and the Acceptance of and Adherence to Antiretroviral Therapy,” Journal of Acquired Immune Deficiency Syndromes (2001), pages 47–58.

43   Nor, in two-thirds: Klaidman, page 222, argues that “invasive treatments such as surgery and angioplasty are being used without good evidence that they provide any survival benefit over drugs. Where a benefit is provided, it is in pain relief and exercise tolerance.” See also pages 180–181.

Rates of restenosis—a return of blockages after angioplasty, stenting, or bypass—vary widely. A study in Circulation (November 2001) reports as many as 40 percent of patients having a return of blockages and requiring additional treatment; after six months, 607 out of 2,690 patients (reported on in this study) had blockages of 50 percent or more in the arteries where angioplasty had been performed. Early studies of stents coated with an immunosuppressive drug are promising and show restenosis rates below 5 percent. See “Comparison of Angioplasty with Stenting, with or Without Abciximab, in Acute Myocardial Infarction,” by Gregg W. Stone et al., in NEJM 346:13 (March 28, 2002), pages 957–966; and also “A Randomized Comparison of a Sirolimus-Eluting Stent with a Standard Stent for Coronary Revascularization,” by Marie-Claude Morice et al., in NEJM 346:23 (June 6, 2002), pages 1773–1780.

When I ask Rich about this, he writes back: “Restenosis: without stent—30–50% after 3–6 months; with stent—20–30% after 3–6 months; with drug coated stent—< 5%. But this is based on VERY preliminary experimentation, and history shows that early enthusiastic reports do NOT hold up. Should be helpful, but how much (in my mind) is an open question.”

44   “a significant mental decline”: As to postsurgical depression, according to the New York Times, “there are no conclusive statistics about the incidence of depression after surgery. Estimates vary widely, from fewer than a third of patients to more than three-quarters” (Randi Hutter Epstein, “Facing Up to Depression After a Bypass,” New York Times, November 27, 2001). The quotation regarding mental functioning after bypasses is from “Mental Decline Is Linked to Heart Bypass Surgery,” by Denise Grady, New York Times, February 8, 2001. See also, for example, Circulation 105:1176 (2002).

45   “the kinds of things”: Thomas, pages 35–42.

4. It’s Not Viral, Goddamnit!

49   My journal entry: I have transcribed my journal entries as in the original, complete with abbreviations, spelling errors, grammatical errors, and gross lapses of judgment.

64   “V worried”: When Rich reads this journal entry, he writes that he is struck by two things: First—your deep premonition and recognition that you had a life-threatening illness, despite what your doctors were telling you. I’ve long believed that on some level, patients know how sick they really are, and how close they are to death, but for whatever reason (overwhelming fear, admission of vulnerability), need to keep it a deep, dark secret within. Second is that the pain was…often too in chest… shit!” You certainly NEVER told me about that, and I doubt you told your docs. I’ve long suspected that patients often keep crucial tell-tale symptoms from “the doctor,” know that the diagnosis they dread will probably then be made…

65   “The Berlin-born”: Nuland, How We Die: Reflections on Life’s Final Chapter, page 33.

66   I have dinner: When I call my friend John O’Sullivan, a physical therapist, and describe my symptoms for him and tell him that Doug thinks the problem is muscular but that I’ve been worried it might be my heart, he says it doesn’t sound like a muscular or rotator cuff problem, and advises me to see a cardiologist. (I call him after I arrive home from Yale-New Haven. “You were right,” I say, and tell him the story.)

70   This property of aspirin: For the story of Dr. Craven and aspirin, see Weatherall, pages 103–104; and LeFanu, pages 311–312. For more recent views of aspirin’s uses, see Weatherall, pages 103–104; LeFanu, pages 311–312; Michael S. Lauer, “Aspirin for Primary Prevention of Coronary Events,” NEJM 346:19 (May 9, 2002), pages 1468–1474; and both “Aspirin: Superhero or Problem Pill?” and “How Aspirin Works Its Magic,” by Abigail Zuger, New York Times, April 18, 2000. See also an October 24, 2002, article in NEJM by Dennis T. Mangano and others, “Aspirin and Mortality from Coronary Bypass Surgery,” which concludes that “early use of aspirin after coronary bypass surgery is safe and is associated with a reduced risk of death and ischemic complications involving the heart, brain, kidneys, and gastrointestinal tract” (vol. 347, pages 1309–1317).

5. Coronary Artery Bypass Graft Times Five

77   I think of: Susan Sontag, Illness as Metaphor, page 31.

6. The Ponce de Leon Thing

86   “Indeed”: Gerald Grob, The Deadly Truth: A History of Disease in America, page 1.

87   “Our lack of success”: Weatherall, page 88.

87   “Our ability”: Ibid., page 92.

90   “it was time”: When Gerald Grob and Dan Fox, director of the Mil-bank Memorial Fund, tried to trace the origin of the surgeon general’s statement, it turned out that he had never made it. “What probably happened was that he was misquoted,” Gerald Grob says, “and the misquote was passed down from author to author” [personal communication].

90   “developments in research”: William B. Schwartz, Life Without Disease: The Pursuit of Medical Utopia, pages 149, 153.

90   “The virtual disappearance”: Weatherall, page 18.

91   In 1900: When considering the 1900 figures, note that in 1900 only eight states and the District of Columbia were regularly reporting causes of death; coverage would expand gradually, but complete national coverage would not occur until 1933. In addition, in the years prior to 1933 urban areas were overrepresented, and rural areas underrepresented. The differentials between white and nonwhite populations, thus, were somewhat overstated, though urban blacks probably had higher death rates than blacks from the rural South, the region where most blacks then lived. See “Trends in Infectious Disease Mortality in the United States During the 20th Century,” by Gregory L. Armstrong, Laura A. Conn, and Robert W. Pinner, JAMA 281 (January 6, 1999), pages 61–66; and Grob, page 316, footnote 32.

I’ve taken statistics on mortality from the National Center for Health Statistics (NCHS) and the U.S. Census Bureau. See especially NCHS, Health, United States, 2000, with Adolescent Health Chartbook, Hyattsville, MD, 2000.

From 1911 through 1935: Figures on mortality are from Grob, Chapter 9, “The Discovery of Chronic Illness,” pages 217–242.

91   “Of the fifteen leading causes”: The statistics are taken from Grob (pages 200ff and 248) and John B. and Sonja M. McKinlay, “The Questionable Contribution of Medical Measures to the Decline of Mortality in the United States in the Twentieth Century,” Milbank Memorial Fund Quarterly: Health and Society 55:3 (Summer 1977), pages 405–428.

92   “Unsurprisingly”: Herrick’s remark is quoted in Klaidman, page 19. Although Herrick’s theory: See Klaidman, pages 15–19, for more about Marcus DeWood’s confirmation of Herrick’s theory.

93   In 1900: See Grob, page 192.

94   94 The mortality rates: The death rates for those under one year of age was 162.4 per thousand, while the comparable figure for the one-through-four-year-old group was 19.8 per thousand. (The death rate represents the percentage of deaths in any given year relative to total population; the mortality rate represents the percentage of a specific age group dying by a certain age—for example, infant mortality represents the number of live-born babies dying within the first year of life.) Grob, pages 192–193.

94   However, by 1940: The infant mortality rate in 1940 was 47 per thousand. For this and the figures concerning the falling mortality rates of infants and toddlers, see Grob, pages 200–201.

94   Moreover, infectious disease: For the decline of measles, whooping cough, and scarlet fever as causes of death, see Grob, page 205.

94   “nearly 85%”: This and other statistics on infant and child mortality are from “Annual Summary of Vital Statistics: Trends in the Health of Americans During the 20th Century,” by Bernard Guyer, Mary Anne Freedman, Donna M. Strobino, and Edward J. Sondik, in Pediatrics 2000, vol. 106, pages 1307–1317.

For the poor record of the United States, see Garrett, page 550.

95   The belief: “The military metaphor has historically had the most pervasive influence over both the practice and financing of medicine in the United States,” George J. Annas writes in Some Choice: Law, Medicine, and the Market, page 45. “Examples are legion,” he continues. “Medicine is a battle against death. Diseases attack the body, uniformed physicians intervene. We are almost constantly engaged in wars on various diseases, such as cancer and AIDS…”

96   The U.S. remains: See a New York Times interview with Dr. Sandra Adamson Fryhofer and Dr. Richard Dolinar, conducted by Gale Scott, August 21, 2001, “Facing Off: Prescription Pitches—Are Direct-to-Consumer Pharmaceutical Advertisements Confusing to Patients?”

96   In widely dispersed: I quote from a Dan Reeves ad in the New York Times, December 19, 2000.

96   Columbia Presbyterian: The Columbia/Cornell ad appeared in the New York Times on June 18, 2000. The America’s Pharmaceutical Companies ad is from the New Yorker (June 5, 2000).

97   Phil is blunt: Consider, with respect to direct-to-consumer advertising, a sixteen-page brochure promoting Bayer aspirin—“Become a Heart-Strong Woman”—in which Bayer invites women to “Get Smart About Cardiovascular Disease.” (“Did You Know…,” the headline on the front page reads, “Heart Disease Is the Number 1 Killer of Women in the United States?”)

“Women—take charge of your health,” the brochure advises, and after listing the common symptoms of heart attacks and stroke (and advising: “Consider Aspirin to Prevent a Stroke”), it asks women to assess their risk factors. To do this, women are given a Heart/Stroke Quiz (“Factors You Can Control”). There are eleven questions. A woman receives 3 points for every “a” answer (increases risk), 1 point for every “b” answer (lowers risk), and 2 points for every “c” answer (“don’t know”). If a woman answers “b” for all eleven questions—that is, if a woman does not smoke, has a cholesterol level below 200, does not have high blood pressure, is not overweight, exercises often, is not frequently tense, angry, or irritable, follows the USA-recommended daily diet, does not have a family history of heart disease or stroke, is not African American, is not going through menopause or postmenopausal, and does not have diabetes, her score will be 11. “Now, add up your points,” the brochure says, and if your score is between 11 [sic] and 17 points, the brochure announces, “you have some risk factors for heart attack and stroke” (italics added).

97   “I call it”: For an excellent summary concerning the sham and scam of anti-aging remedies, see “No Truth to the Fountain of Youth,” by S. Jay Olshansky, Leonard Hayflick, and Bruce A. Carnes, in Scientific American (June 2002), pages 92–95, and the accompanying website: www.sciam.com/explorations/2002/051302/aging/. The article’s lead headline reads: “Fifty-one scientists who study aging have issued a warning to the public: no anti-aging remedy on the market today has been proved effective. Here’s why they are speaking up.” Not only do none of the remedies slow, stop, or reverse aging, but some, the scientists warn, “can be downright dangerous.”

97   “The belief that disease”: The quotations regarding the unknown etiologies of many modern diseases are from Grob, pages 2–5.

97   Then, too: “Certainly,” LeFanu writes concerning the genetic causes of disease, “the imagery of DNA as the ‘master molecule, the blueprint from which everything flows’ is vivid enough, but genes by themselves can do nothing without interacting with other genes operating within the context of the whole cell within which they are located” (page 278). And based on a study of 44,788 “pairs of twins listed in the Swedish, Danish, and Finnish twin registries,” conducted “to assess the risks of cancer at 28 anatomical sites for the twins of persons with cancer,” the authors of a study in NEJM conclude, “Inherited genetic factors make a minor contribution to susceptibility to most types of neoplasms. This finding indicates that the environment has the principal role in causing sporadic cancer” (italics added). Paul Lichtenstein, Niels V. Holm, et al., NEJM: 343:2 (July 13,2000), pages 78–85.

For a comprehensive listing of single-gene diseases, of which there are over four thousand, see Victor A. McKusick, Mendelian Inheritance in Man: A Catalog of Human Genes and Genetic Disorders.

98   Writing in: Daniel Callahan, “Death and the Research Imperative,” NEJM 342:9 (March 2, 2000), pages 654–656.

98   “Since we are”: William Haseltine, quoted by Nicholas Wade, “Apostle of Regenerative Medicine Foresees Longer Health and Life,” New York Times, December 18, 2001.

7. Listen to the Patient

103   According to figures: The figure on infant mortality is from 1996 and is in Health, United States, 2000, published by the NCHS, page 157.

106   Thus, in one recent: Meir J. Stampfer et al., “Primary Prevention of Coronary Heart Disease in Women Through Diet and Lifestyle,” NEJM 343:1 (July 6,2000), pages 16–22.

107   So dramatic: The study about type 2 diabetes, “Prevention of Type 2 Diabetes Mellitus by Changes in Lifestyle Among Subjects with Impaired Glucose Tolerance,” is from NEJM (May 3, 2001), pages 1343—1350, and is reported in the New York Times (“Diet and Exercise Are Found to Cut Diabetes by over Half,” by Kenneth Chang), August 9, 2001.

107   Most of us: In 1935, for example, 6.5 million Americans—5 percent of the population—were over age sixty-five; in 2001, 13 percent of the population—more than 35 million Americans—were in this age group. These statistics are from Jane E. Brody, “Ways to Make Retirement Work for You,” New York Times, July 24, 2001, page 225.

The distinction between “life span” and “life expectancy” is from Steven Harrell’s letter to the editors, New York Review of Books (December 16,1999).

108   Consider the following: Grob, page 61. Malaria was also present in New England; though of lesser significance than in the Chesapeake area and southern colonies, it did not disappear from New England until the end of the eighteenth century (Grob, page 60). For information on mortality and disease in early American colonies, see Grob, especially Chapter 3, “Colonies of Sickness,” pages 48–69.

108   In the United States: For the decline of infant mortality in the United States, decade by decade, see S. Jay Olshansky and A. Brian Ault, “The Fourth Stage of the Epidemiologic Transition: The Age of Delayed Degenerative Diseases,” Milbank Quarterly 64:3 (1986), page 375.

There is little evidence of infectious disease being important at any age in hunter-gatherer societies. Instead, as Kim Hill explains, “trauma, accident, violence, parasites, etc. are much more common in hunter-gatherers (indeed, theoretical work in epidemiology would lead one to doubt whether small human residential groups could be effective reservoirs for most modern infectious diseases). Human hunter-gatherers are like most other mammals. Mortality rates of the young are very high, but not from infectious diseases usually” [personal communication].

Approximately 55 percent of foraging hunter-gatherer (!Kung, Hadz, Agta, and Cuiva) children survive to age fifteen. About 65 percent of Ache and Kutchin children survive to fifteen. But “it is clear,” writes Renée Pennington, “that adults living under the worst conditions (such as the Agta) have a good chance of surviving the reproductive span.” Given the high proportion of survivors during the adult years—among Ache living on reservations since 1970, 40 percent of those who live to twenty live to seventy; among !Kung Bushmen, those who live to fifteen probably live past seventy—it is apparent,” Pennington notes, “that most 15-year-olds have a better chance of surviving the next 35 years than they did getting through the first 15.” The quotation is from “Hunter-Gatherer Demography,” in Hunter-Gatherers: An Interdisciplinary Perspective, page 194.

Given how utterly wretched the living conditions are for these hunter-gatherers, these findings tell us much about the history of our species’ mortality. I am indebted to Kim Hill, Henry Harpending, Renee Pennington, and Magdalena Hurtado for a brief glimpse into this fascinating world, and refer readers to Hill and Hurtado’s Ache Life History and Nancy Howell’s Demography of the Dobe !Kung.

109   The introduction of antibiotic: See Pediatrics, 2000, for information on child and infant mortality.

109   “that the introduction”: McKinlay and McKinlay, page 406.

109   “after which”: Ibid., pages 414 and 408. See also Thomas McKeown et al., “An Interpretation of the Decline of Mortality in England and Wales During the Twentieth Century,” Population Studies 29, pages 391–422 [422].

110   Dr. Thomas McKeown: “The main influences on the decline in mortality,” McKeown states, “were improved nutrition on air-borne infections” and “reduced exposure (from better hygiene) on water- and food-borne diseases,” and he suggests that “the advancement in nutrition was the major influence” on the decline of mortality.

110   “epidemiological transition”: Grob, page 201.

110   “from infectious diseases”: Ibid., page 205.

111   We live healthier: On why we live longer, see Grob, page 182ff, as well as Garrett, pages 9–13, and Horton (“In the Danger Zone”), page 47.

111   And there is this: In 1930, the annual rate of cancer mortality was 143 per hundred thousand; in 1990, adjusted for the rising age of the population, it was 190 per hundred thousand. See Robert Weinberg, One Renegade Cell: How Cancer Begins, as quoted in Daniel J. Kevles, “Cancer: What Do They Know,” New York Review of Books (September 23, 1999), Page 18. And, as with heart disease, mortality from cancer is directly and consistentiy related to age; the older we are, that is, the more likely it becomes that we will suffer from one or the other of these two diseases.

On the incidence of cancer, see Grob, pages 255–258. In “The Political Scientist” (New Yorker [June 7, 1999], page 68), James Fallows notes that “after three decades [since Nixon’s “war on cancer”] and an investment of more than thirty-five billion dollars in cancer research, annual cancer deaths have increased.” For an informative summary of what has happened since 1971, when President Nixon declared war on cancer, see Jerome Groopman’s essay, “The Thirty Years’ War,” in the New Yorker (June 4, 2001), pages 52–63. “In the course of a lifetime, one of every three American women will develop a potentially fatal malignancy,” Groopman writes, and he goes on to make much the same point about the use of militaristic language that Sontag, Annas, and others have made: “All the same, the triumphalist rhetoric that animated the war on cancer still shapes public opinion: many people believe that cancer is, in essence, a single foe, that a single cure can destroy it, and that the government is both responsible for and capable of spearheading the campaign” (page 54).

112   More surprising: The mortality rates of cancer from 1950 through 1998 are from Grob, page 255; see also Health, United States, 2000, page 191. The reasons: Here is Gerald Grob’s description of age-adjusted mortality:

Let us assume that there are two population groups of 100 each. Assume further that 10 people in each group die in a given year. But there is one difference. The average age of one group is 30 and the average age of the second group is 50. If you simply took the raw death rates, the two groups would be equal. But obviously we would expect a much higher death rate in the group with an average age of 50. Hence you must correct the raw data for age distribution. That is what is meant by age-corrected rates. You have to be certain that you are not comparing apples and oranges.

“Too many statistics are presented without appropriate corrections,” he adds, “and hence give a misleading picture. As age advances, we expect higher death rates—hence correction for age distribution is vital” [personal communication].

112   In a study: Vincent De Vita’s 1981 prediction is quoted on page 389 of Laurie Garrett’s Betrayal of Trust. See John C. Bailar and Heather L. Gornik, “Cancer Undefeated,” NEJM 336:22 (May 29, 1997), page 1573. (The 1986 article on cancer mortality is by John C. and Elaine M. Smith, “Progress Against Cancer?” NEJM 314:19 [May 8, 1986], pages 1226–1232.) “In our view, the best single measure of progress against cancer is change in the age-adjusted mortality rate associated with all cancers combined in the total population,” Bailar and Gornik conclude. “According to this measure, we are losing the war against cancer, notwithstanding progress against several uncommon forms of the disease, improvements in palliation, and extension of the productive years of life” (Bailar and Gornik, page 1226).

115   “the major issue”: Horton, “How Sick Is Modern Medicine?” page 50. “we are learning”: The quotations from President Clinton and Frances S. Collins are from a front page article by Nicholas Wade: “A Shared Success: 2 Rivals’ Announcement Marks New Medical Era, Risks and All,” New York Times, June 27, 2000. The quotation from Time is from an article by Frederic Golden and Michael D. Lemonick, “The Race is Over,” Time 156:1 (July 3,2000), page 19.

For a refreshingly clear introduction to understanding the significance of mapping the human genome, see Richard Lewontin’s essay in the New York Review of Books, “After the Genome, What Then?” (July 19, 2001), pages 36–37. “And what is significant in the human genome sequence?” he asks.

The major irony of the sequencing of the human genome is that the result turns out not to provide the answer to the chief question that motivated the project. Now that we have the complete sequence of the human genome we do not, alas, know anything more than we did before about what it is to be human. At the time of the completion of the human genome sequence, scientists already knew the complete DNA sequences of thirty-nine species of bacteria, a yeast, a nematode worm, the fruit fly, Drosophila, and the mustard weed, Arabidopsis.

“So knowing all the genes of a human being doesn’t really tell us what we want to know,” he explains. And, later in the essay:

As interest shifts from genes to proteins, so the promises of cures for all of our ills will shift from genome fixes to protein fixes. The special Human Genome issues of Science and Nature already prefigure this change. Amid the many articles of the standard sort like “Toward Behavioral Genomics” and “Cancer and Genomics” is one called “Proteomics in Genomeland,” and one, “Dissecting Human Disease in the Post-Genomic Era,” which describes the shift from genomics to proteomics as one of the “Paradigm Shifts in Biomedical Research.” As yet the promise that the study of DNA sequences will lead to cures for illness has remained unfulfilled for any human disease, although some gene-based drugs are undergoing clinical trials.

For a more extended elaboration of the significance (and insignificance) of mapping the genome, see his book, It Ain’t Necessarily So: The Dream of the Human Genome and Other Illusions,

115   “research tends”: Horton, “How Sick Is Modern Medicine?” page 48.

116   “the prospects”: Weinberg is quoted in Daniel J. Kevles, New York Review of Books (September 23, 1999), page 20.

116   “the effort to link”: Grob, page 96.

117   “a preventable illness”: The Harvard Center for Cancer Prevention’s study is called “Volume I: Human Causes of Cancer” in Cancer Causes and Control 7, Suppl 1 (November 1996).

117   “that the etiology”: Grob, page 260.

119   Age-adjusted mortality figures: Health, United States, 2000, page 163. See also Gina Kalata, “Gains on Heart Disease Leave More Survivors, and Questions,” New York Times, January 19, 2003.

119   “over the past 30 years”: Daniel Levy and Thomas J. Thom, “Death Rates from Coronary Disease—Progress and a Puzzling Paradox,” NEJM 339:13 (September 24, 1998), pages 915–916.

8. They Saved My Life But…

133   On August 26: The deaths from Baycol are caused by a disorder called rhabdomyolysis, in which muscle cells break down and overwhelm the kidneys with cellular waste—a known side effect of statins. Some experts, the New York Times reports, claim that the estimates of injuries and deaths attributable to statins have been “very conservative.” “Because doctors and hospitals are not required to report adverse reactions [to drugs],” the Times notes, “academic, industry and governmental statisticians have calculated that there were probably about 10 cases of side effects for each case reported to the F.D.A.” Regarding the recall of Baycol, see “Anticholesterol Drug Pulled After Link with 31 Deaths,” by Gina Kolata and Edmund L. Andrews, in the New York Times, August 9, 2001. On the repercussions in Europe of the recall, see “Drug’s Removal Exposes Holes in Europe’s Net,” by Edmund L. Andrews, in the New York Times, August 22, 2001.

9. One Year Later

148   Yet at least: Two wonderfully lucid, moving, and unsentimental books about living with chronic, disabling conditions are Andrew Potok’s A Matter of Dignity: Changing the World of the Disabled, and Andrew Solomon’s The Noonday Demon: An Atlas of Depression. Consider this, for example, from the preface to Andrew Potok’s book (page 12):

In those early years of my advancing blindness, I did take care of myself by learning new skills but, while in the middle of a doctoral program, I also bolted the rational world to pursue an insane “cure” offered by a woman in London who claimed she could cure retinitis pigmentosa with bee stings. My attempt to obliterate my unacceptable limitations cured me of ever looking for “cures” again. Finally, I have come to realize that many of life’s essential problems aren’t soluble. Misery doesn’t always lend itself to remedy. As a matter of fact, this kind of attitude, I have come to believe, misunderstands what makes life interesting. Being cured of one’s disability, one’s peculiar psychology, one’s angst, though sought avidly, runs the risk of leaving a residue of dullness and uniformity. All of this must seem silly to a society intent on ease, comfort, normalcy, a desire not to stand out in nonconformist ways, as crazy, poor, disabled, loud, different. But just as tragedy is not due merely to error, every question is not answerable, every ill is not always curable, everything does not always come out well in the end. “Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick,” Susan Sontag wrote. We are all a little bit ablebodied and a little bit disabled. The degree to which we are the one or the other shifts throughout life.

150   We know: For data concerning people who are at increased risk for heart attacks when isolated or living alone, see “Emotional Support and Survival After Myocardial Infarction: A Prospective, Population-Based Study of the Elderly,” by Lisa F. Berkman, Linda Leo-Summers, and Ralph I. Horwitz, in Annals of Internal Medicine 117:12 (1992), pages 1003–1009.

Figures concerning increased mortality rates of widows and widowers are from Jaakko Kaprio, Markku Doskenvuo, and Heli Rita, “Mortality After Bereavement: A Prospective Study of 95,647 Widowed Persons,” American Journal of Public Health 77:3 (March 1987), pages 283287. See also C. Murray Parkes, B. Benjamin, and R. G. Fitzgerald, “Broken Heart: A Statistical Study of Increased Mortality Among Widowers,” British Medical Journal, issue 1, pages 740–743.

151   “I feel this”: Montaigne, “Of Friendship,” The Complete Essays of Montaigne, pages 186–197.

153   We know that mental: Martin Stone, “Shellshock and the Psychologists,” in W. F. Bynum, Roy Porter, and Michael Shepherd (eds.), The Anatomy of Madness: Essays in the History of Psychiatry, vol. 2, pages 250–251, quoted in Jackson, page 132.

154   In one survey: “The Importance of Placebo Effects in Pain Treatment and Research,” by J. A. Turner et al., in JAMA 271 (1994), pages 1609–1614, cited in Anne Harrington (ed.), The Placebo Effect: An Interdisciplinary Exploration, page 22.

154   In the relief of depression: F. J. Evans, “Expectancy, Therapeutic Instructions, and the Placebo Response,” in L. White, B. Tursky, and G. E. Schwartz (eds.), Placebo: Theory, Research, and Mechanisms, cited by Harrington, page 21.

154   In a 1999 study: Irving Kirsch and Guy Sapirstein, “Listening to Prozac but Hearing Placebo: A Meta-Analysis of Antidepressant Medications,” in Irving Kirsch (ed.), How Expectancies Shape Experience.

154   “the presence of major depression”: “Task Force 3. Spectrum of Risk Factors for Coronary Heart Disease,” by Richard C. Pasternak et al., in Journal of American College of Cardiology 27:5 (April 1996), pages 964–1047 [984].

150   In another study: “Adherence to Treatment and Health Outcomes,” by R. I. and S. M. Horwitz, in Archives of Internal Medicine 153 (1993), pages 1863–1868, cited in Harrington, page 42.

155   On the cover: “A popular operation for arthritis of the knee worked no better than a sham procedure in which patients were sedated while surgeons pretended to operate,” the New York Times reports on July 11, 2002 (“Arthritis Surgery in Ailing Knees Is Cited as Sham,” by Gina Kolata). Each operation, “more than 650,000” of which “are performed each year,” according to the article in the July 11, 2002, issue of NEJM (J. Bruce Moseley et al., “A Controlled Trial of Arthroscopic Surgery for Osteoarthritis of the Knee,” 347:2, pages 81–88), costs roughly $5,000. The study’s conclusion: “In this controlled trial involving patients with osteoarthritis of the knee, the outcomes after arthroscopic lavage or arthroscopic debridement were no better than those after a placebo procedure.” See also the accompanying editorial in NEJM, pages 132–133. “that the placebo effect”: Talbot, New York Times Magazine, January 9, 2000, pages 34–39, 44, 58–60.

156   “It may seem strange”: Leston Havens, A Safe Place: Laying the Groundwork of Psychotherapy, page 88.

156   In talking: In “Disease and Illness” (Culture, Medicine and Psychiatry, vol. 1 [1977], page 11), Leon Eisenberg explains the difference this way: “illnesses are experiences of disvalued changes in states of being and in social function; diseases, in the scientific paradigm of modern medicine, are abnormalities in the structure and function of body organs and systems.” “the history of medical treatment”: Arthur Shapiro, “The Placebo Effect in the History of Medical Treatment (Implications for Psychiatry),” American Journal of Psychiatry 116 (1953), pages 298–304, cited in Jackson, page 281.

156   Some researchers: Regarding skepticism about the placebo effect, see Gina Kolata, “Placebo Effect Is More Myth Than Science, Study Says,” New York Times, May 25, 2001; and Richard A. Friedman, “Can the Placebo Treat Depression? That Depends,” New York Times, June 25, 2002. “no evidence”: Howard Spiro, “Clinical Reflections on the Placebo Phenomenon,” cited in Harrington, pages 37–55 [49, 50, 51, 53]. Spiro distinguishes between placebo response (“behavioral change in the person receiving the pill”) and placebo effect (“change attributable to the symbolic effect of the medication”) (page 49).

10. In Friends We Trust

158   “the astonishing total”: Shapiro, “The Placebo: Is It Much Ado About Nothing?” in Harrington, page 13. The quotations from Galen are also on page 13.

159   “these issues”: Jackson, page 31.

159   For the doctor: Regarding philanthropia and philotechnia, see Pedro Lain Entralgo, Doctor and Patient, trans. Frances Partridge, pages 21–22. Citing Entralgo’s text (page 40), Jackson says that Entralgo “has argued that friendship (philia) was the cornerstone of the doctor-patient relationship in the ancient world (pages 17–29); and he goes on to reason that, in one form or another, it continued to be a crucial element in the art of healing during subsequent centuries.”

Jackson also emphasizes what my friends emphasize: the importance of attentive listening. The kind of attentiveness to the patient that inspired confidence and healing several thousand years ago, Jackson argues, does the same in our time, and not only, or primarily, because such attentiveness can bring comfort and relieve pain, but for clinically pragmatic reasons.

“Turning to the context of a general physician’s consultation room,” he writes,

we find proof that attentive, interested listening can turn an inchoate litany of complaints into a gradually coherent story of distress and discomfort. The patient has been the better for having told the doctor, whether it has been a confessing, a confiding, a catharsis, or a revealing of physical symptoms that would have otherwise gone undetected; and the doctor has been the better for having been with the patient in a healing endeavor rather than having rapidly gotten rid of him or her with the aid of a prescription pad. Often enough, the physician’s listening has allowed the emergence of more private concerns and symptoms which have been the issues that were more crucially in need of therapeutic attention, (page 92)

Like my friends, Jackson does not want anyone to get “the mistaken idea” that “healing is nothing but a matter of employing psychological factors to influence sufferers toward better health.” He does, however, “wish to emphasize that these factors will frequently not be sufficient, but that they will very frequently be necessary” (page 391). In a series: David Mechanic’s work on trust is summarized in “The Importance of Trust in Medical Care: Papers and Publications by David Mechanic, Ph.D.; Executive Summary,” in the Robert Wood Johnson Foundation’s Author Series 1:12 (April 2000).

160   “Frustrations”: Jerome P. Kassirer, “Doctor Discontent,” NEJM 339:21, pages 1543–1545 [1543]. “It is difficult, however,” Mechanic comments, “to assess how much this chorus of complaints reflects physicians’ anxieties about control over their professional lives and future incomes and how much it reflects deficiencies of current medical care.” This quotation is in “The Managed Care Backlash: Perceptions and Rhetoric in Health Care Policy and the Potential for Health Care Reform,” Milbank Quarterly 79:1 (2001), pages 35–54 [40].

160   “The public has”: Mechanic, “The Managed Care Backlash,” pages 37, 38, 47

161   “It is not merely”: Leon Eisenberg, “The Search for Care,” Daedalus (1977), pages 235–246 [236–237]. Neither cost nor access “explains away the paradox that although we know the ‘old family doctor’ had almost no decisive remedies to offer for serious disease,” Eisenberg writes, “we nevertheless lament his disappearance.”

“The potency of the witch-doctor’s pharmacopoeia may not have matched ours,” he continues, but “he gave a name to what had been mysterious, he offered an explanation for its cause, he prescribed a ritual for its exorcism, and he legitimized dying. At the least, the patient felt less alone; at best he was restored to his former health.”

163   “swung back and forth”: Jackson, page 391. Part of the reason for the priority given to medical biotechnology is economic. John Lantos, a pediatrician who was a member of President Clinton’s Health Care Reform Task Force, comments: “From the perspective of hospital budgets, the best treatments have been those that require long and intense hospitalizations: heart surgery, transplantation, cancer chemotherapy, neonatal intensive care. In these cases, one needs lots of technology, lots of people, and lots of money, and it all goes toward intervention in a crisis for an identifiable patient.”

“Subtle, preventive treatments don’t capture our imaginations,” he goes on, “don’t commandeer the same resources, and those who provide such treatments are thus much more peripheral to this modern medical enterprise.” These remarks are from his eminently sensible book, Do We Still Need Doctors? pages 79–80.

163   End-of-life care: See Horton, “In the Danger Zone,” page 34; Robert J. Blendon and John M. Benson, “Americans’ Views on Health Policy: A Fifty-Year Historical Perspective; Because Americans’ views conflict, policymakers must be cautious about interpreting the public’s mood based on isolated public opinion questions,” in Health Affairs, March-April 2001; Christopher Hogan et al., “Medicare Beneficiaries’ Costs of Care in the Last Year of Life,” Health Affairs, July-August 2001; Anne A. Scitovsky, ‘“The High Cost of Dying’ Revisited,” Milbank Quarterly 72:4 (1994); and James D. Lubitz and Gerald F. Riley, “Trends in Medicare Payments in the Last Year of Life,” a Special Article in NEJM 328:15 (April 15, 1993), pages 1092–1096.

163   Rich says: Rich, who has taught at several medical schools, would eliminate most of the basic science courses that dominate the first two years of training, starting with the dissection of cadavers. “Pathology, psychology, biochemistry—these courses are fairly worthless, since you learn what you need to know about them as you go into the various specialties of clinical medicine,” he says, “and then you learn them in a much more pragmatic way.”

164   “these innovations”: The reasons Mechanic advances for the importance of effective communication merit repeating: “Effective communication allows the physician to understand the patient’s expectations and concerns; to obtain accurate information, thereby facilitating diagnosis; to plan and manage the course of treatment; and to gain the patient’s understanding, cooperation, and adherence to treatment.” See “Public Trust and Initiatives for New Health Care Partnerships,” Milbank Quarterly 76:2 (1998), pages 281–302 [281]. Quotes in text from pages 298, 281, 282.

166   Jerry pauses: Regarding the debts incurred by medical students, see “Removing Career Obstacles for Young Physician-Scientists—Loan-Repayment Programs,” by Timothy J. Ley and Leon E. Rosenberg, in the “Sounding Board” section of NEJM 346:5 (January 31, 2002), pages 368–371. According to the article, “The late bloomers are most likely to incur debt during medical school. Only 17 percent of all medical students graduate free of debt. For the class of 2001 overall, the average debt was more than $99,000. Among students in private medical schools, the average debt was nearly $119,000, and one third of this group had debts that exceeded $150,000” (page 369).

167   ‘“sick-man”‘: Nicholas Jewson, “The Disappearance of the Sick-Man from Medical Cosmology,” Sociology 10 (1976), pages 225–240 [229], cited by Jackson, page 61.

167   “began to take shape”: Jackson, page 61.

168   Such changes: Kevin Patterson, “What Doctors Don’t Know (Almost Everything),” New York Times Magazine, May 5, 2002, pages 74, 76–77.

168   “As the scientific mode”: Jackson, page 62.

168   “In effect”: Weatherall, page 57.

168   In Time to Heal: For Kenneth M. Ludmerer’s account of the rise of a “separation of functions” between “clinician-teachers” and “physician-scientists,” see Time to Heal: American Medical Education from the Turn of the Century to the Era of Managed Care, pages 288–295.

169   “carried negative implications”: Ibid., page 361.

169   “to revert”: Ibid., pages 381, 383, 389.

170   “Is this the best”: Weatherall, page 328.

171   “The contemporary disarray”: Daniel M. Fox, Power and Illness: The Failure and Future of American Health Policy, pages 1,323. “As Daniel M. Fox has discussed,” Ludmerer writes, “in the era of chronic diseases, the system of health care financing and delivery remained based on an acute disease model. Thus, third party payers would often pay for renal dialysis but not for the outpatient treatment of high blood pressure that could have prevented the kidneys from failing in the first place” (page 286).

172   We currently spend: Crossing the Quality Chasm: A New Health System for the 21st Century, Institute of Medicine (Washington, DC: National Academy Press, 2001). The figures on chronic care are from Chronic Care in America: A 21st Century Challenge (August 1996), prepared by the Institute for Health and Aging, University of California, San Francisco, for the Robert Wood Johnson Foundation, Princeton, New Jersey.

173   “The resistance”: Fox, page 88.

174   Sometimes, it seems: “In the second half of [the nineteenth] century, the growing perception that the threat of infection was receding coincided with the ascendancy of new theories for understanding disease and intervening to prevent and treat it,” Daniel Fox writes. “Most important, the great advances in bacteriology in these years led to the concept, in the words of a classic study of human disease, that ‘each human ailment must have a singular and specific cause.’” Fox’s quotation is on page 23; the quotation about each human ailment having a singular and specific cause is from M. S. R. Hutt and D. P. Burkitt, The Geography of Non-Infectious Disease, page 1.

174   “It is the sheer”: Weatherall, page 322.

174   “it is not information”: Nuland, “The Proper Dosage of Judgment,” New York Times, July 10, 2000.

175   More: See, for example, “Geographical Mobility: Population Characteristics,” March 1999 to March 2000, or “Why People Move: Exploring the March 2000 Current Population Survey (Special Studies),” March 1999 to March 2000.

175   at this writing: Figures for the exact number of uninsured Americans vary, but generally are estimated at being between 39 and 45 million. A New York Times article claims that, according to government figures, “the number of uninsured Americans remains at 39 million” (“Paralysis in Health Care,” May 29, 2002), though two years earlier, the government, using a different method of calculating this figure, stated that the number of uninsured was 44.3 million (“Still Uninsured, and Still a Campaign Issue,” by Robert Pear, New York Times, June 25, 2000). On September 30, 2002, the Census Bureau stated that the number of uninsured was 41.2 million, or 14.6 percent of the population. New York Times, September 30, 2002, “After Decline, the Number of Uninsured Rose in 2001,” by Robert Pear.

A Robert Wood Johnson Foundation forecast is hardly sanguine—“The most likely scenario puts the number of uninsured at 47 million in the year 2010, while the worst-case scenario estimates there will be 65 million in 2010” (from “Health and Health Care 2010: The Forecast, the Challenge,” a special supplement to Advances, issue 1,2000).

In an article entided “Uninsured America: Truth and Consequences” (December 19, 2001, distributed by the National Academy of the Sciences), Arthur L. Kellermann claims that 40 million Americans are without health insurance. And according to a White Paper put out by the American Society of Internal Medicine in 2000 (“No Health Insurance? It’s Enough to Make You Sick”), uninsured Americans, compared with those insured, are “1.5 times more likely to report only fair or good health; up to 3.6 times more likely to delay seeking care; up to 2.8 times more likely to be hospitalized for diabetes; up to 2.4 times more likely to be hospitalized for hypertension; and up to 1.6 times more likely to be hospitalized for a bleeding ulcer.”

175   “Clinical research”: Horton, “How Sick Is Modern Medicine?” page 49.

11. So Why Did I Become a Doctor?

182   “Many of the Peace Corps”: G. H. Friedland, C. Ellis, and S. Long, “The Prevalance of S. Hematobium in the Okene Area of Nigeria,” West African Medical Journal 17 (1968), pages 21–24. For a recent and comprehensive review article on schistosomiasis, see Bartiey Ross et al., “Schistosomiasis,” NEJM 346:16 (April 18, 2002), pages 1212–1220.

186   In 1982: Jerry talks about his realization that AIDS was transmitted het-erosexually in AIDS Doctors: Voices from the Epidemic, by Ronald Bayer and Gerald M. Oppenheimer, pages 26–27.

186   Jerry was also: Jerry’s two seminal articles about the transmission of HIV are “Lack of Transmission of HTLV-III/LAV Infection to Household Contacts of Patients with AIDS or AIDS-Related Complex with Oral Candidiasis,” NEJM 314 (February 6, 1986), pages 344–349; and “Medical Progress: Transmission of the Human Immunodeficiency Virus,” NE/M317 (October 29, 1987), pages 1125–1135.

187   “Although we are confronted”: Friedland, “Medical Progress: Transmission of the Human Immunodeficiency Virus,” page 1133.

187   Just as, for Jerry: When students, interns, and residents presented papers or reviewed individual cases—reporting, at the start of each day, on admissions from the night before—Jerry stayed very much in the background, and if and when he spoke it was always in the most equable way—with great specificity and gentle humor.

I was surprised, then, after a student presentation one morning, to have Jerry ask me what I thought (I was impressed), and to have him say, matter-of-factly, “I would have given her a C+.” His kindness and sympathetic manner, that is, did not compromise his medical judgment.

188   “Then go there”: “You don’t know what a good doctor he is,” Gail said once when I was telling her about people I’d met at the clinic, and of watching Jerry interact with them. “He is so good with people— that’s his great gift—so very good.” (Gail and Jerry met on the acute chest disease ward at Bellevue—“lots of TB and emphysema,” Jerry says—where Gail was a head nurse and Jerry was a resident.) And she said this even though she sometimes became frustrated because of Jerry’s lack of availability, the long hours he put in at work, and how often he was away from home.

I knew firsthand of Jerry’s devotion to Gail and his children (and to his sister Rita, who was in a nursing home in Brooklyn, afflicted with Alzheimer’s), and when we were together, whether in one of our homes or at the hospital, we talked mostly about our families—about my brother and his sister, and about our children. On this visit, Jerry talked at length about an apartment one of his daughters had just rented in a dangerous neighborhood of New York, and of the talks he and Gail were having about what to do: they didn’t want to control her life—but they felt she was being naive in some ways, and putting herself at undue risk.

189   He worked in Roxbury: There Jerry was, among other things, medical director of the Mary Eliza Mahoney Family Life Center and of Adult Services at the Dimock Community Health Center.

191   Jerry has written: “Breaking the Silence” is an editorial in AIDS Clinical Care 12:8 (August 2000). In it, Jerry lists some preliminary elements of what he calls “the prescription many of us took home from Durban”—the imperative for rich governments to provide debt relief (how battle AIDS when Africa must pay $15 billion in interest to the developed world each year?); the necessity for increasing prevention efforts with resources in the billions, not millions; the need for the pharmaceutical industry to lower drug prices, and for governments to encourage policies such as parallel importing and compulsory pricing; the need for governments and international organizations to build infrastructure and to provide education that makes antiretroviral use possible and effective; the need for an uncompromising battle against stigma and discrimination; and the imperative for political leaders in the developed and developing worlds to act courageously.

“Political will and courageous leadership do make a difference,” Jerry says. “Look at what’s happened in Uganda and Senegal, where they have had successful HIV prevention campaigns. In Senegal the rates remain low and stable and they’ve reversed the epidemic, while in Uganda the rates have continued to go down—yet Uganda was one of the most heavily impacted countries initially.”

See Peter Piot’s op-ed piece, “In Poor Nations, a New Will to Fight AIDS,” New York Times, July 3, 2002. Piot notes that AIDS “will kill 68 million people in the 45 most affected countries over the next 20 years.”

“This need not happen,” he states. “HIV prevention campaigns work, and there is overwhelming evidence that the AIDS epidemic can be controlled—but only when governments make fighting AIDS a priority.”

After reviewing basics about prevention and treatment campaigns that have worked, and the money that will be needed for global success, he concludes: “Uganda, Zambia, Cambodia, Brazil and other developing nations have demonstrated that AIDS is a problem with a solution. Now the world must match this leadership and commitment with the resources needed to get on with the job. Otherwise, the new spirit of hope and vigor in the AIDS fight will be dashed. The costs of that are too devastating to contemplate.”

The United Nations (UNAIDS), in July 2002, reported that of the forty million HIV-infected people worldwide, only 700,000, or 1.75 percent, were receiving antiretroviral drugs at the end of 2001. “The overwhelming majority of these, 500,000,” the New York Times wrote, “live in high-income countries where combinations of anti-HIV drugs have prolonged the lives of many people. In these [high-income] countries, in 2001, fewer than 30,000 of the 28.5 million infected people were receiving anti-HIV treatment at the end of 2001” (“Report, Reversing Estimates, Forecasts Big Increase in AIDS Death Toll,” New York Times, July 3, 2002).

194   It is this understanding: In the summer of 1986, Newsweek ran a twelve-page story about Jerry. On the cover was a photo of Jerry, with the caption: “THE AIDS DOCTOR.” And accompanying the photo, this: “Gerald Friedland has treated nearly 300 men and women with AIDS. More than 200 are dead. The rest are dying. This is the story of his caring and his struggle.” Newsweek 108:3 (July 21, 1986), pages 38–50.

196   “Our family started”: Jerry discovered the fact of his father’s hospitalization at Hillside when, after their parents’ death, his sister came across a bundle of letters in their mother’s dresser—letters his father had written from Hillside Psychiatric Hospital.

12. A Safe Place

203   “What a man knows”: Adlai E. Stevenson, What I Think, page 174.

204   Arthur and I talk: In the course of this conversation, Arthur also notes ways in which psychoanalytically oriented therapy has been found to be inefficient. “I love psychoanalysts, because they are very, very respectful of the dignity of each person,” he says. “They are thoughtful. They listen. They listen carefully, and the person they work with is always treated with great regard. I have always resented colleagues who talk down and trash their patients. But it takes analysts years to accomplish some of the things you can now accomplish in six weeks with medications, and some discrete conditions like obsessive-compulsive disorder, panic attacks, and depression respond very well to medications.”

204   In a World Health Organization study: “The Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries, and Risk Factors in 1990 and Projected to 2020,” by Christopher J. L. Murray and Alan D. Lopez (eds.), published by the Harvard School of Public Health on behalf of the World Health Organization and the World Bank, pages 2–4 and 18–21.

207   I say: “He is the most amazing diagnostician,” Phil says of Arthur.

You tell him a story—what’s going on with one of your children, what you’re worried about for yourself—and he sees right through to the heart, and he tells you what is and isn’t possible, and he’s totally direct, and he always makes sense.

And even though you come to him with problems you’re upset about, he makes you feel that you’re important, that what you say has value—and you feel good because you’re his friend. I remember in high school, how he would go into a group of guys for the first time and immediately be able to make friends—to say the right things and listen in a way that made people gravitate to him and like him—that he had this uncanny ability to relate to people.

212   “No quality”: The first passage from David Hume is from A Treatise of Human Nature, page 316. The second passage is on page 593. Hume describes “the nature and force of sympathy” as follows:

The minds of all men are similar in their feelings and operations, nor can any one be actuated by any affection, of which all others are not, in some degree, susceptible. As in strings equally wound up, the motion of one communicates itself to the rest; so all the affections readily pass from one person to another, and beget correspondent movements in every human creature. When I see the effects of passion in the voice and gesture of any person, my mind immediately passes from these effects to their causes, and forms such a lively idea of the passion, as is presently converted into the passion itself. In like manner, when I perceive the causes of any emotion, my mind is convey’d to the effects, and is actuated with a like emotion, (pages 575–576)

214   “By the way”: Rereading Arthur’s letters, and being reminded of how the quality of human sympathy in him (as in Hume’s description of it, which includes what we understand as “empathy”) has been at the heart of our friendship, as well as of his friendships with others (and his work as a psychotherapist), I find—with reference to the quality of mercy—the familiar passage from The Merchant of Venice sweetly appropriate:

“The quality of mercy is not strain’d,

It droppeth as the gentle rain from heaven

Upon the place beneath. It is twice blest:

It blesseth him that gives and him that takes…”

(Act IV, Scene I)

13. It’s Not the Disease

215   “I’m just”: Most of the conversations with Phil in this chapter take place on the last evening of a week-long visit during which Phil’s house has been a busy place. Barbara, who works in Phil’s office one day a week doing nerve conduction velocity studies and electromyography (a diagnostic procedure that measures electrical impulses passing through muscles, and going from the nerves to the muscles), has been taking intensive summer courses toward her certification as a homeopathist. (Barbara started out as a physical therapist; she and Phil met when he was the only man in an employee fitness program she ran at the Spalding Rehabilitation Center, where Phil was director of medical education.) Phil and Barbara’s son Jared, about to enter his freshman year at Montana State University, has arrived home from an archaeological dig in Israel, and their daughter Katie, a high school junior, has left for a training center to prepare for a year of study in Israel. (Phil spent extended periods of time, in 1977 and 1983, as visiting professor of neurology at the Hebrew University Medical School of Hadassah Hospital in Jerusalem.) And Phil’s brother Allen, who went to junior high school and Erasmus with my brother Robert, where they were friends, has been visiting for several days with his wife and two young children.

216   “No one really”: Concerning the brain’s ability to heal itself, researchers working with stem cells now report experiments that provide some hope that we may ultimately happen upon ways to repair the brain. “Transplanted cells,” the New York Times reports, “which are types of stem cells, migrate to the site of damage and release factors that ameliorate or may even replace dead tissues.” Although there have been some laboratory successes, “scientists say that they still do not understand the basic biology of this process, and that huge hurdles still remain. For example, it is not clear if stem cells are making the right connections inside the brain or if they will even survive over the long term. Moreover, the field is threatened by religious and political arguments about abortion” (“In Early Experiments, Cells Repair Damaged Brains,” by Sandra Blakeslee, New York Times, November 11, 2000).

Similarly, stem cells may aid the heart’s ability to repair itself. In an article in the New England Journal of Medicine, “Chimerism of the Transplanted Heart,” by Federico Quaini et al., 346:1 (January 3, 2002), pages 7–15, researchers report “a high level of cardiac chimerism caused by the migration of primitive cells from the recipient to the grafted heart. Putative stem cells and progenitor cells were identified in control myocardium and in increased numbers in transplanted hearts.” Although “our knowledge of these events is less than scanty,” the NEJM reports, these new findings “raise the hope that, counter to traditional beliefs, the heart can repair itself. If it can, we will have opportunities to enhance the process that regenerates damaged myocardium” (page 5).

217   “We don’t have a splint”: Although Phil is a man who can understand the most subtle complexities of science—whether physics, biology, chemistry, anatomy, geology, or neuroscience—when it comes to the practice of medicine, and to dealing with his patients, he remains uncomplicated in the best, most sensible ways, so that often, when I become aware of my own tendency to worry a situation too much, I will stop and say to myself: Whoa, Neugie—what would Phil see here, and what would he say? How would he cut through to the heart of this—to the basics?

218   Phil has written: Phil’s article, “Bifrontal Brain Trauma and ‘Good Outcome’ Personality Changes: Phineas P. Gage Syndrome Updated,” was published in the Journal of Neurological Rehabilitation 4 (1990), pages 9–16.

218   Since my arrival: “He’s genuinely shy,” Phil’s wife Barbara says when I talk with her about how hard it is to get Phil to agree to tape a conversation. “And he doesn’t always make eye contact either, so sometimes people aren’t sure if he’s listening. But he is. He’s the best listener I know, and he never treats anything—any patient—routinely. In the middle of the night I often find he’s gotten out of bed and is in his office, poring through his medical books and trying to figure something out about one of his patients.”

226   “perceptions of a career”: Jack Hadley et al., “Young Physicians Most and Least Likely to Have Second Thoughts About a Career in Medicine,” Academic Medicine 67:3 (March 1992), pages 180–190 [180].

227   “The psychic toll”: Michael D. Burdi and Laurence C. Baker, “Physicians’ Perceptions of Autonomy and Satisfaction in California,” Health Affairs 18:4 (July-August 1999), pages 134–145 [142–143]. See also “Effects of HMO Market Penetration on Physicians’ Work Effort and Satisfaction,” by Jack Hadley and Jean M. Mitchell, Health Affairs 16:6 (November–December 1997), pages 99–111; “Physician Behavior: Perceived Financial Incentives, HMO Market Penetration, and Physicians’ Practice Styles and Satisfaction,” by Jack Hadley et al., Health Services Research 34:1 (April 1999, Part II), pages 307–321; and “How Satisfying Is the Practice of Internal Medicine?” by C. E. Lewis et al., Annals of Internal Medicine 114 (1991). pages 1–5.

14. The Patient’s Story

237   “There was no arguing”: On another occasion, after recounting some of Arthur’s speculations about our friendships, and about the role of sports in our early lives, I offer a literary comparison: that the schoolyard was for us what the Mississippi was for Mark Twain, and the sea for Melville. I talk about an essay originally published in 1948 by Leslie Fiedler, “Come Back to the Raft Ag’in, Huck Honey!” in which, writing about Huckleberry Finn and Moby Dick (and other books—all “boy’s books,” Fiedler notes) Fiedler proposes that what they have in common is a kind of passionless passion—a homoerotic love between men, at once gross and delicate, and possessing an innocence above suspicion. And this love, and these friendships—the feeling and affection of Huck for Jim, of Ishmael for Queequeg—exist in an American male’s version of paradise: a world where men, and only men, work and play together—where they struggle against the elements, rejoice in their camaraderie, and exist in an idyllic, preindustrial American pastoral. “Come Back to the Raft Ag’in, Huck Honey!” in Adventures of Huckleberry Finn: A Case Study in Critical Controversy.

243   Then he looked up: The intravenous solution ordered by Dr. Brumlik was digitalis.

243   I mention: Lown, pages xiv and xv.

249   According to Koch’s postulates: For a description of these and how he arrived at them, see Roy Porter’s The Greatest Benefit to Mankind: A Medical History of Humanity, page 436 ff.

250   The assumption: For a discussion of single causative agents in disease—their rarity, and our success rates in finding treatments for them—see Weatherall, page 256 ff, and Victor McKusick, cited in note xx, chapter x.

251   Twin studies: The statistics on concordance rates are from Weatherall, pages 280–281. For an excellent explanation of the relation of genetics to heritability—twin studies, family studies, linkage studies, concordance rates, et cetera—see “Genetic Research on Mental Disorders,” by Stephen O. Moldin, in Genetics and Criminality, ed. Botkin, McMahon, and Francis, pages 115–149.

253   Evolutionary biologists: The kinds of questions evolutionary biologists ask—along with some answers and hypotheses concerning the relationship of disease (cancer and heart disease, in particular) to natural selection—are set forth clearly in Randolph M. Nesse and George C. Williams, Why We Get Sick: The New Science of Darwinian Medicine, especially pages 3–6, 96–97, and 134–135

254   In a similar way: For a discussion of the relation of genetics, disease, heritability, and reproductive age, see Nesse and Williams, pages 96–97. Seen from this perspective: Richard Dawkins’s remark is from Nesse and Williams, page 15. “natural selection”: Ewald, page 12.

255   “strep B was”: Laurie Garrett, The Coming Plague, page 415. The report on fourteen thousand people dying each year from drug-resistant infections is from an editorial in the New York Times, “Losing Ground Against Microbes,” June 18, 2000.

There is a large body of literature concerning the increase in drugresistant infections—for example, an article in the Archives of Family Medicine 8:1 (January-February 1999), by Jon S. Abramson and Laurence B. Givner (“Bacterial Resistance Due to Antimicrobial Drug Addiction Among Physicians”) noting that

until 1974, all pneumococci reported in the United States were susceptible to penicillins and cephalosporins. Resistance levels increased slowly thereafter until the 1990s, when the rates increased substantially. The US Pediatric Multicenter Pneumococcal Surveillance Study Group prospectively studied almost 1300 systemic infections caused by pneumococci at 8 children’s hospitals. They found that from 1993 to 1996, the overall percentage of pneumococci that were penicillin nonsusceptible increased from 14% to 21%. The resistance rate for ceftriaxone tripled, from 3.1% to 9.3%.

Until 1992, the Centers for Disease Control spent only $55,000 a year on antibiotic-resistance surveillance—yet by 1992, as an article in Science noted in that year (“On the Track of ‘Killer’ TB,” by Rich Weiss),

years of poor compliance among TB patients unwilling to take their medicine for the full 6 to 18 months needed to kill the bugs has led to the gradual development of strains that are now resistant to as many as 9 of the 11 most commonly tested drugs. And although a trend toward drug resistance has been obvious for some time, the severity of the crisis went largely unrecognized in recent years, in part because the federal surveillance programs designed to track TB drug-resistance were eliminated in 1986 for budgetary reasons. (Science 255:5041 [January 1992], pages 148–150)

Nesse and Williams, pages 1–49 and 246, provide a good introduction to the subject. See also Ewald, pages 1–30. Laurie Garrett’s The Coming Plague is full of stories and data on drug-resistant diseases. Richard Preston’s writings, especially The Hot Zone, and “Annals of Warfare: The Bioweaponeers” (New Yorker [March 9, 1998], pages 52–65), provide a primer on the possible uses and effects of lethal drug-resistant viruses.

256   None of the risk factors: For a fascinating discussion of inflammation and its relation to the immune system and heart disease, see Ewald, especially pages 107–116. Joseph B. Muhlestein’s quotation is from “Chronic Infection and Coronary Artery Disease,” in Killian Robinson (ed.), Medical Clinics of North America: Risk Modification for Cardiac Disease 84:1 (January 2000), pages 123–148 [123].

256   Moreover, as Lewis Thomas: For Ewald’s discussion of principles of primary causation and their relation to heart disease, see pages 116–121 in Plague Time.

257   “The entire process”: For other discussions of the processes that lead from the buildup of atheroma to its rupture, see Dr. Peter Libby, “Atherosclerosis: The New View,” Scientific American (May 2002), pages 47–53. See also Klaidman, pages 204–205,199–200,211–215; and Weatherall, pages 94, 280–285.

Dr. Libby, chief of cardiovascular medicine at Brigham and Women’s Hospital in Boston, provides a good summary of recent research on the relation of inflammation to cardiovascular disease. The most interesting finding, he suggests, is that “the long held conception of how the disease develops [fat-laden gunk gradually building up on artery walls and closing them off] turns out to be wrong.”

“Most heart attacks and many strokes,” Libby writes, “stem instead from less obtrusive plaques that rupture suddenly, triggering the emergence of a blood clot, or thrombus, that blocks blood flow.” Sometimes, of course, plaque does grow so large that it halts blood flow to an artery, thereby generating a heart attack or stroke, Libby explains. “Yet only about 15 percent of heart attacks happen in this way.”

This “new view” of atherosclerosis helps “explain why many heart attacks seem to come from out of the blue: the plaques that rupture do not necessarily protrude very far into the blood channel and so may not cause angina or appear prominently on images of the channel.” Some plaques, that is, are more prone to rupturing than others, and we really don’t know why.

For more detailed discussions of the relation of inflammation to coronary artery disease, see “Inflammation, Aspirin, and the Risk of Cardiovascular Disease in Apparently Healthy Men,” by Paul M. Ridker et al, NEJM 336:14 (April 3, 1997), pages 973–979; “Measurement of C-Reactive Protein for the Targeting of Statin Therapy in the Primary Prevention of Acute Coronary Events,” by Paul M. Ridker et al., NEJM 344:26 (June 28, 2001), pages 1959–1965; and also Weatherall, page 186.

Although the evidence for inflammatory causation is persuasive, the process that produces the ruptures in the atheroma that lead to heart attacks, as Rich often reminds me, remains mysterious. Thus the following, from an editorial article, “The Value of Inflammation for Predicting Unstable Angina,” NEJM 347:1 (July 4, 2002), pages 55–57: “Although the link between inflammation and clinical cardiovascular events is strong, there remain important gaps in our knowledge. For example, although chronic systemic infection may accelerate the clinical course of atherosclerosis, the relative contribution of this ‘extralesional’ inflammation to events within the arterial wall remains to be determined. Similarly, the precise mechanism by which atherosclerosis initiates an inflammatory response is not known” (pages 56–57).

258   “Add to this”: For information on C-reactive protein and its relation to the detection and prevention of atherosclerosis and to statin therapy, see Paul M. Ridker et al., “Measurement of C-Reactive Protein for the Targeting of Statin Therapy in the Primary Prevention of Acute Coronary Events”; and Paul M. Ridker, “Evaluating Novel Cardiovascular Risk Factors: Can We Better Predict Heart Attacks?” in Annals of Internal Medicine 130:11 (June 1, 1999), pages 933–937. For an understanding of the concept of risk factors, see four excellent articles in the March 2001 issue of the American Journal of Public Health 91:3: “Risky Concepts: Methods in Cancer Research,” by Alfredo Morabia, pages 355–57; “Cancer Culture: Epidemics, Human Behavior, and the Dubious Search for New Risk Factors,” by Graham A. Colditz, pages 357–359; “The Search for Cancer Risk Factors: When Can We Stop Looking?” by Colin B. Begg, pages 360–364; and “The Privatization of Risk,” by Beverly Rockhill, pages 365–368.

Beverly Rockhill’s conclusions are cogent: “It is likely,” she writes, “that the ability to predict the futures of individuals will always remain out of reach, despite ever-increasing knowledge about alleged independent factors or genes that may elevate disease risk in exposed groups.”

The dangers in “designating the individual the sole locus of ‘risk’ and thus the locus of responsibility for ‘risk reduction,’” are twofold. First is “the amplification of existing socioeconomic health inequities, as individuals in lower socioeconomic strata are less likely to have regular contact with the health care system, to comprehend the arithmetic behind risk information, and to have the psychologic, social, and economic resources needed to voluntarily alter the factors contributing to their ‘personal’ risk.”

Second, Rockhill writes,

the labeling of these risk factors as the “causes” of individual cases of disease, and the implication that responsible individuals who avoid such risk factors will prevent their own case of disease, represent strong denials of the inability of statistics and medical science to predict the future of individuals. Further, the equating of risk factors with the causes of individual cases fosters an indifference to the social determinants of risk factor distribution and thus contributes to ineffectual disease prevention policies at the population level, (pages 367–368)

259   Here, for example: Russell Ross, “Atherosclerosis—An Inflammatory Disease,” NEJM 340:2 (January 14, 1999), pages 115–126.

259   “From a clinical standpoint”: Muhlestein, “Chronic Infection and Coronary Artery Disease,” page 125.

261   “To be precise”: Taubes, “The Soft Science of Dietary Fat,” Science 291:5513 (March 30, 2001), pages 2536–2545. See also his companion piece on dietary fat, “What If It’s All Been a Big Fat Lie?” New York Times Magazine, July 7, 2002, page 22 ff.

261   Rich talks frequently: Regarding the unethical collusions between doctors, hospitals, and drug companies, see, for starters, the articles cited in note xx, chapter x. See also “When Physicians Double as Entrepreneurs,” by Kurt Eichenwald and Gina Kolata, New York Times, November 30, 1999; “Study Says Clinical Guides Often Hide Ties of Doctors,” by Sheryl Gay Stolberg, New York Times, February 6, 2002; “Drug Companies Profit from Research Supported by Taxpayers,” by Jeff Gerth and Sheryl Gay Stolberg, New York Times, April 23, 2000; “Drug Companies and the Third World: A Case Study in Neglect,” by Donald G. McNeil, Jr., New York Times, May 21, 2000; and “How Companies Stall Generics and Keep Themselves Healthy,” by Sheryl Gay Stolberg and Jeff Gerth, New York Times, July 23, 2000.

261   Although more than 80: The statistics on direct-to-consumer promotion are from “Promotion of Prescription Drugs to Consumers,” by Meredith B. Rosenthal et al, in NEJM 346:7, pages 498–505. Regarding the pharmaceutical industry’s relation to consumers—and to research—consider this too: two-thirds of prescription medications approved by the FDA from 1989 to 2000 were either modified versions of existing drugs or drugs identical to those already on the market. According to the National Institute for Health Care Management Foundation (which receives 40 percent of its financing from Blue Cross/Blue Shield), medicines “with new chemical ingredients that offer significant improvements over existing drugs” made up only 15 percent of drugs approved during this period (“New Medicines Seldom Contain Anything New, Study Finds,” by Melody Petersen, New York Times, May 29, 2002).

For a look at drug companies’ promotional techniques, including direct-to-consumer advertising, see “What’s Black and White and Sells Medicine?” by Melody Petersen, New York Times, August 27, 2000; and “High-Tech Stealth Being Used to Sway Doctor Prescriptions,” by Sheryl Gay Stolberg and Jeff Gerth, New York Times, November 16, 2000.

261   “showed no evidence”: Both LeFanu, page 308, and Taubes, page 2541 of “The Soft Science of Dietary Fat,” make reference to this Time magazine article.

262   “Snatching victory”: LeFanu, pages 289–317 [310].

262   “After seven years”: Ibid., page 308.

15. Natural Selection

270   “The main discovery”: Jacob, Of Flies, Mice, and Men, page 152. “chemical weapons”: The quotation from Waksman, along with the story of his discovery of streptomycin and his evolving views about antibiotics, is drawn, in part, from LeFanu, pages 14–15.

270   That Alexander Fleming: Like Waksman’s story, the story of Fleming’s discovery of penicillin has been told often. See, for example, LeFanu, pages 6–14, and Porter, pages 454–458.

271   “the whole immune system”: Nesse and Williams, page 116.

271   “Inflammation”: Mary Duenwald, “Body’s Defender Goes on the Attack,” New York Times, January 22, 2002.

272   In an article: “p53 Mutant Mice That Display Early Ageing-Associated Phenotypes,” by Stuart D. Tyner et al., Nature 415 (January 3, 2002), pages 45–53.

274   “With the current study”: Reactions to the Nature article on P53 are from the New York Times: “In Search of an Extra-Long Life,” January 7,2002 (editorial); and “Cancer Fighter Exacts a Price: Cellular Aging,” by Nicholas Wade, January 8, 2002.

275   “During the past”: Nesse and Williams, page 108.

275   One way: For a discussion of the effects of aging on DNA and life expectancy, see Weatherall, pages 217–219.

276   “Genes that reside”: Ibid., page 190. The estimate of the number of genes in the human genome has changed since Weatherall’s book was published in 1995, and continues to change. The generally accepted number is now somewhere between 30,000 and 40,000. See, for example, Nicholas Wade’s article in the New York Times, “Human Genome Appears More Complicated,” August 24, 2001, and Andrew Pollack’s article in the Times, “Citing RNA, Studies Suggest a Much Deeper Gene Pool,” May 4,2002.

277   “a highly technical”: Weatherall, page 107.

277   John Gibbon: Gibbon told his story many times. His accounts are consistent, but he elaborated on the experience a bit differently in each new telling. Basic accounts are given in Klaidman and LeFanu. I am quoting from Gibbon’s 1978 essay, “The Development of the Heart-Lung Apparatus,” American Journal of Surgery 135 (May 1978), pages 608–619.

279   “Pessimism”: Walter Lillehai, “A Personalized History of Extra Corporeal Circulation,” Transactions of the American Society for Artificial Organs 28 (1982), pages 5–16.

16. The Prepared Heart

285   We know how: The information on curing a case of TB, on vaccinations against measles, and on annual average health spending in the U.S. and elsewhere is from an editorial, “Health Aid for Poor Countries,” New York Times, January 4, 2002. Note, also, that the prevalence of TB in the United States has declined to its lowest level ever, a drop of 39 percent from 1992 to 2000, with the rate of multidrug TB resistance down by 70 percent (“Tuberculosis—The Global View,” NEJM 346:19 [May 9, 2002], pages 1434–1435).

Data on TB, vaccines, average health spending, and death from preventable diseases are from the New York Times, “U.N. Says Millions of Children, Caught in Poverty, Die Needlessly,” by Elizabeth Olson, March 14, 2002.

286   The response: For a sense of the national response concerning global disease and poverty, see Natalie Angier, “Case Study: Globalization; Location: Everywhere; Together in Sickness and in Health,” New York Times Magazine, May 6, 2001; and Helen Epstein, New York Review of Books (March 14, 2002).

286   When the United Nations: But note President Bush’s proposal, in his 2003 State of the Union message, to triple spending for AIDS relief in Africa and the Caribbean.

286   In addition, because: That the illnesses that make up 90 percent of the global burden of disease receive only 10 percent of research money is from a New York Times editorial, “The Plagues of Poverty,” March 19, 2002.

287   “choice rhetoric”: Annas, pages x-xv. Annas (page xiv) quotes Jedediah Perdy on the notion that individual choice is always good: “Boundless individualism in which law, community, and every activity are radically voluntary, is an adolescent doctrine, a fantasy shopping trip without end” (“The God of the Digerati,” American Prospect, March-April 1998, pages 86–90).

287   “Choice and coercion”: “Introduction,” Some Choice, page xv. Annas elaborates:

It has become commonplace for communitarians to argue that liberty or choice has become the only American value and has overwhelmed our sense of community and of obligations to our fellow citizens. There is something to this, but I think (and argue in this book) that the choices that are honored by our contemporary society very often turn out to be “some choice” in both senses of the words: They do provide another option and with it the illusion of control, but the choice is usually not a particularly good one, and is virtually irresistible because of more powerful factors such as poverty, illness (both mental and physical), and social status.

Three examples presented by two thoughtful commentators who have urged us to curb our “culture of autonomy” are illustrative: 1) a mentally ill street person who is in need of medical care, but is left on the street to die because he tells emergency medical technicians that he refuses treatment; 2) the right of a pregnant woman to refuse to be screened for HIV infection, even though the risks to her future child of contracting AIDS could be significantly reduced if she is infected and takes zibovudine during the pregnancy and childbirth; and 3) the demise of a program to pay teenagers a dollar a day to avoid pregnancy on the basis that this is coercive and thus a denial of their autonomy, (xiv)

289   “The demand for autonomy”: Callahan, “Rationing Medical Progress—The Way to Affordable Health Care,” NEJM 322:25 (June 21, 1990), pages 1810–1813. For a full elaboration of these ideas, see his book, What Kind of Life: The Limits of Medical Progress.

291   Do we have any: The figure on future deaths from tobacco is from Bob Herbert’s column, “Death in the Ashes,” New York Times, July 26, 2001. According to the World Health Organization, by 2030, tobacco-related deaths will reach 10 million annually (“W.H.O. Treaty Would Ban Cigarette Ads Worldwide,” by Elizabeth Olson, New York Times, July 22, 2002).

292   “Surely”: Nuland, “Whoops!” page 11.

293   “by excessive”: Mechanic, “Managed Care as a Target of Distrust,” JAMA 277:22 (June 11, 1997), pages 1810–1811. Mechanic has written widely and wisely on the subject. See, for example, “Managed Care, Rationing, and Trust in Medical Care,” Journal of Urban Health: Bulletin of the New York Academy of Medicine 75:1 (March 1998), pages 118–122; and “Responses of HMO Medical Directors to Trust Building in Managed Care,” Milbank Quarterly 77:3 (1999), pages 283–303. (See also “The Managed Care Backlash: Perceptions and Rhetoric in Health Care Policy and the Potential for Health Care Reform,” Milbank Quarterly 79:1 [2001], pages 35–54.)

The literature on managed care is enormous. Here, for starters, is a summary description of “The Growth of Managed Care,” from an artiele by H. T. O. Davies and Thomas G. Randall, “Managing Patient Trust in Managed Care,” Milbank Quarterly 78:4 (2000), pages 609–624:

Since the late 1980s, a new health care environment has emerged in many parts of the United States. Previously, indemnity insurance and fee-for-service reimbursement prevailed. Independent physicians, hospitals, and other caregivers provided medical services and billed the charges to the patient’s insurance company, or government paid with little regard to the appropriateness of services delivered. Physicians had few, if any, constraints on their authority to order tests, perform procedures, make referrals, and prescribe medications. In general, patients perceived that such unbridled authority for physicians to expend resources on their behalf aligned the physicians’ interests (autonomy and personal financial gain) with their own (access to all interventions regardless of cost).

In the new health care environment, private employers and the federal and state governments have changed from passive payers to aggressive purchasers of health care. As such, they demand more accountability from health plans with respect to where their insured employees are cared for, what types of services are provided, and how much they will pay. In turn, health insurance companies have devised a variety of managed care plans (e.g., group and network model health maintenance organizations) that shift some of the risk of controlling health care costs to the care providers. When at financial risk for the cost of the services they provide, physicians and hospitals have a strong incentive to manage carefully the entire continuum of care for their enrolled patient population. Hence the origins of the term managed care, (pages 610–611)

294   “disturbing issues”: “Neonatalogists earn more than general pediatricians,” the editorial on neonatal technology informs us. “One of the few investor-owned physician groups to remain financially successful in recent years is Pediatrix. Pediatrix employs nearly 600 neonatologists and fetal-maternal medicine specialists in 185 neonatal intensive care units across the United States and earned more than $30 million in net profits for investors in 2001.” These and the other quotes about neonatal technology are from the editorial “Specialists, Technology, and Newborns—Too Much of a Good Thing,” by Kevin Grumbach, NEJM 346:20 (May 16, 2002), pages 1574–1575. The study Grumbach is commenting on is “The Relation Between the Availability of Neonatal Intensive Care and Neonatal Mortality,” by D. C. Goodman et al., NEJM 346 (2002), pages 1538–1544.

295   “who will be labeled”: Annas, page 108. With regard to the imbalance of supply and demand in medical care—an imbalance in which supply often drives demand—see a New York Times front-page article, “More May Not Mean Better in Health Care, Studies Find,” by Gina Kolata, July 21, 2002.

296   “Is radical mastectomy”: Nuland, “Whoops!” page 11.

301   “where observation is concerned”: Until I returned to the original—in Sherwin Nuland’s Doctors: The Biography of Medicine— I had always thought that what Pasteur said was that “chance favored the prepared mind.” What he actually said was that “chance favors only the prepared mind.” Here, in French, are his words (quoted in Doctors on page 363), spoken on December 7, 1854, at the inaugural assembly of the Lille Faculty of Science, in France: “Dans les champs de l’observation, le hasard ne favorise que les esprits preparés.”