Open Heart

by Jay Neugeboren

  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.