Open Heart

by Jay Neugeboren

  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 rece
nt 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.”

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  Index

  access to health care, 41, 175, 282, 285–87

  adult-onset diabetes. See diabetes: type 2

  aging

  attempts to avoid, 98, 99

  drug company marketing and, 96–98, 99

  effects of the immune system, 271–72

  effects on the brain, 222

  nature of the knowledge acquired with, 203–4

  the p53 system and, 272–75

  research on cellular processes, 90, 275–76

  AIDS (acquired immune deficiency syndrome)

  political aspects, 195, 282

  in South Africa, 282–83, 285

  transmission, 41, 46, See also HIV: transmission

  treatment: antiretrovirals, 40–41, 255, 282–83; context of a cure, 173–74; impact of new, 40–41, 43; importance of adherence to the regimen, 180–81; low-tech aspects, 166; myths, 282; role of trust, 153, 180; of symptoms vs.