When Illness Goes Public: Celebrity Patients and How We Look at Medicine
In these histories of 12 famous illnesses—not all of them in initially famous people—Barron Lerner weaves three common strands. The stories of the patients are told with great sensitivity, objectivity, and honest attention to the realities of the effects of desperate, mostly lethal, illness on patients, families, and friends. The stories of the illnesses and their treatments are carefully researched and presented in lay, but medically correct, language. And Lerner brings out the stories of the stories—how scraps of information, or sometimes no information, can grow (or be made to grow) into the grotesque distortions in newspapers, movies, television, and recently the Web, that come pouring forth with detail and evidently some relish on the part of the tellers.
Where there are positives, such as the impetus to establish a foundation to study some illness or the closeness that approaching death can bring to families, Lerner brings it forth. Negatives, such as gross invasions of privacy at intensely personal times, or serious breaches of the public's trust, get the same careful attention. Throughout, the professionalism of the historian is just under the surface until the reader, expecting another chapter, suddenly finds 40 dense pages [End Page 295] of footnotes and a meticulous index. Much is missing from or grossly distorted in the public record, often because of deliberate distortion by patients' representatives or the press (and less often, in these stories, by patients).
Most of the stories are not pretty, but then serious illness and death is generally not pretty. Accounts of heroism, stoicism, cheerfulness in the face of adversity—the whole stiff-upper-lip business fed to the public, are often right at the beginning, but mostly wrong at the end. Famous illnesses in famous people are just as devastating as the run-of-the-mill illnesses that will affect each of us at least once.
Lerner notes that the "cases highlight, among other subjects, doctor-patient confidentiality, death and dying, medical errors, consent for experimental treatment, and the question of who—patients, families, or doctors—should make decisions at the bedside." He also notes that "it was often the ordinariness of famous patients—and their loved ones—that made their stories so compelling for nonfamous Americans confronting the same medical and emotional issues." He has picked his cases well for making these points, but the stories illustrate much more.
Lerner begins with Lou Gehrig, he of the eponymous disease. Here Lerner sets the pervasive tone of the careful historian, noting the degree of confirmation that is justified for each part of what is often and necessarily a collection of potentially biased perceptions of his principals and sources. Many questions cannot be answered at this late time. When did the disease begin? What did Gehrig, his wife, his teammates, and others think as progressing disease caused him to become more and more clumsy? What treatment did he receive, and how much did it help? What did Gehrig himself understand about his condition? This is also the starting point for a running account of how public records and perceptions of famous illnesses and famous patients have changed over some 75 years. Secrecy and a reluctance to speak even when facts are available have, over time, diminished greatly. Public coverage of illness generally, of famous patients, and of medical research (much of it not meaningful "progress," despite the breathless tone of news stories) has increased sharply over the intervening decades. Despite the media frenzies we still sometimes see, that is surely a good thing.
Jimmy Piersall's struggle with bipolar disorder was long attributed to high spirits, high energy, or high jinks. It seems that the news media and the public simply could not believe that a highly successful baseball player could have a mental illness. Piersall has published his own story in a major magazine article, a book, and elsewhere, so we know more abut his illness and treatment than we do about Gehrig's decline. As Lerner notes, "Piersall's decision to go public was remarkable. Popular understandings of mental illness in the 1950s were as diverse as the labels given to Piersall." Piersall recovered, and has worked for more than 50 years to improve public understanding of bipolar disorders and other mental illnesses. We owe Piersall much for today's greater public understanding and acceptance [End Page 296] of mental illness as another treatable medical problem, though his own treatment left him with serious concerns about the profession of psychiatry.
Similarly, the long slow decline of Rita Hayworth, a victim of Alzheimer's disease, was not recognized as serious until long after symptoms should have been unmistakable. Hayworth's remarkably successful career as a movie star, her "continued ability to perform certain activities," her alcoholism, and the interventions of friends and family who misunderstood, downplayed, and covered up her lapses turned attention away from the real problem. Attitudes about both mental illness and Alzheimer's disease have changed sharply over the years, in part because of the publicity about the struggles of Piersall and Hayworth, as well as the efforts of Hayworth's daughter to promote understanding of her mother's disease.
Margaret Bourke-White, who contributed many memorable photographs to Life and other publications, dealt with her Parkinson's disease openly and thought that she benefited from an unproven operation that has since (I believe) been abandoned. The disease was a serious burden in a profession that requires great digital dexterity and nimble reflexes. Lerner points to the broad range of issues, questions, and dilemmas that affect the victims of a debilitating and disabling disease that is not, in the shorter run, lethal. Bourke-White's courage and persistence in preserving as much function as possible for as long as possible have surely brought hope and inspiration to countless other patients.
Brian Piccolo, a professional football player, died of a rare form of cancer in 1970. The story of his decline and death is the first in which Lerner brings out the great personal costs of desperate efforts to save a doomed patient. Similarly, Barney Clark, the first recipient of a permanent artificial heart, suffered a great deal during the months he survived. The lessons from these patients have broad and important implications for both medical professionals and patients who are contemplating aggressive treatments that have little or no chance of success. While important research advances can come from such treatments, it appears from this distance that their medical advisers, like those of Bourke-White, oversold the personal benefits of such treatment. Lerner asks (regarding Bourke White's medical calculus),"Is such a strategy self-deceiving and ill-advised in the face of real disease and risky treatment? Or is it a viable way to arrive at decisions that are intensely personal?" Advances in aggressive medicine keep such questions current.
Steve Mc Queen, a rebel in real life as well as the movies, turned to unconventional treatments after his doctors had exhausted all the options they had to treat his lung cancer. Lerner asks, "Might it actually make sense to try untested, unapproved remedies if no other hope existed? Were unorthodox treatments, which generally sought to restore balance and improve patients' immunity, perhaps at times superior to standard toxic interventions, such as radiotherapy or chemotherapy? And what was one to make of the claims of patients who swore that they had been cured of a deadly cancer by alternative therapies?" He writes [End Page 297] with sympathy and understanding about a patient who was desperate and had little to lose, but with no sympathy at all for the practitioners who exploited his vulnerability.
Other chapters deal with the illnesses of John Foster Dulles (colon cancer), Morris Abram (acute myelocytic leukemia), Libby Zion (infection, complicated by medical misadventure), Arthur Ashe (AIDS acquired from a blood transfusion), and Lorenzo Odone (of Lorenzo's Oil). There is also brief discussion of Lance Armstrong, his recovery from testicular cancer, and his subsequent victories in the grueling Tour de France. The experimental treatment of a serious infection in a son of the second President Roosevelt is used to set the stage for the longer analyses.
These are compelling stories taken one by one, but there are broader lessons for medicine generally. Patients, families, and physicians are likely to face a series of complicated choices during the downhill course of a fatal condition. It is often not possible to tell, even after the fact, whether the choices made were optimal. Patients, those close to them, their doctors, the news media, and others all have an interest in telling a compelling story, but there is generally a wide gap between what is reported and what really happens. Not surprisingly, the nature of the gap depends on who is doing the telling, and none of the stories may be close to the truth—however that is defined—so they require careful analysis. Finally, a famous illness can lead to action—a disease-oriented research foundation, substantial improvements in public understanding of some dread disease, even changes in the fundamental ways in which medicine is taught and practiced.
Lerner returns several times to the question of what celebrity is, and what makes a person a celebrity. Why do many people feel a personal link to someone whom they have never met? Celebrity is certainly an important factor in what the public learns about medicine and illness (and many other things), but why are sometimes trivial persons doing trivial things of so much general interest? Why do some medical cases grab public attention while others do not? This question is not really answered here.
Lerner notes,"For decades, medical journals readily published interesting individual cases or small case studies as a way to disseminate knowledge to physicians. But the rise of more sophisticated statistical methodology in the middle third of the twentieth century led to criticism of the anecdotal case." The authoritarian role of the medical profession has sharply declined, as patients insist on their rights, the news media weigh in, and careful medical science—the source of very nearly all advances in medicine—is increasingly dominated by full-time Ph.D. investigators, including statisticians, who have largely taken over the design, conduct, and interpretation of clinical studies. A medical degree and a lot of self-confidence are no longer enough to establish a new treatment.
There were good reasons for moving from case descriptions to statistical analyses, so why is Lerner now presenting a series of cases? It is, as he says, because some important things cannot be learned in other ways. These 12 stories [End Page 298] cannot be regarded as a fair sample of serious illness and death even among celebrities, but they delight and instruct readers about our own health and eventual mortality, and these are important things to know.