Open Heart

by Jay Neugeboren

  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.