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doi: 10.1097/01.NT.0000265835.81401.e1
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Doctors and Patients: An Interactive Partnership

Rowland, Lewis P. MD; Lerner, Barron H.

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Dr. Rowland is professor of neurology at Columbia University Medical Center and editor-in-chief of Neurology Today (Rowland)

Johns Hopkins University Press 2006 (Lerner)

When Illness Goes Public: Celebrity Patients and How We Look at Medicine

Barron Lerner is an internist and popular medical writer. His earlier book, The Breast Cancer Wars, should be required reading for all medical students. A history of radical breast surgery, it recorded the influence of powerful leaders in erroneously misleading a generation of physicians. William Halsted devised the operation. He trained the first specialists in breast surgery and they fanned out throughout the most influential medical schools of the country, spreading the gospel of Halsted, which became standard practice without a controlled trial. Ultimately the procedure was dismissed in favor of less mutilating surgery, chemotherapy, and irradiation.

In this new book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine, Lerner records the evolution of public attitudes toward their physicians. He tells that story through individual cases, celebrities who became ill, or ordinary people whose illness made them celebrities. Most of the case histories involve neurology.

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PROTECTING PATIENTS FROM BAD NEWS

In the 1930s, physicians “protected” patients from bad news. Lou Gehrig's condition was not recognized as a neurological disorder by physicians in New York City; at the Mayo Clinic, the diagnosis was immediately clear but Gehrig was never told the name of his disease, amyotrophic lateral sclerosis. Instead he was told it was a form of poliomyelitis. When he asked about his prognosis, a direct response was avoided or the answer was a flat-out lie. Ultimately, one of the leading neurologists of the day included Gehrig in an uncontrolled trial of vitamin E therapy; the published case report was a paean to wishful thinking, describing improvement, even as the disease progressed lethally.

Three decades later, Margaret Bourke-White was a renowned photojournalist. She published photographs for Life magazine, documenting the rise of Gandhi and the imposition of apartheid. Covering the war in Korea, she had the first symptoms of parkinsonism. When she finally saw a neurologist in 1954, at age 50, he made the diagnosis immediately, but never told her. It was least a year later, probably two, before she learned the diagnosis. She had a chemothalamectomy by the pioneering Irving S. Cooper and went public, writing about her treatment – with photos of the operation – for Life.

The story became a play for television in 1960, with Theresa Wright in the title role. (Wright had also played the part of Eleanor Gehrig in the movie about the ball player.) Her public role was a new one for a celebrity and her message was one of faith in medical science and medicine.

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DENIAL OF PSYCHIATRIC INVOLVEMENT

Baseball star Jim Piersall's erratic behavior led to a diagnosis of bipolar disease around 1952, when he was 22 years old. He wrote the story of his own illness for the Saturday Evening Post and then a book. Amnesic for seven months, he regained contact with the world in a psychiatric hospital. The amnesia was attributed to a combination of the mental disorder and electroconvulsive therapy. During those seven months, no one considered his bizarre behavior worthy of a psychiatry consultation. He was one of the first to go public with a psychiatric disorder. Supposedly cured, he played again for the Boston Red Sox in 1953 and, despite odd behavior on the field, he played with the same team until 1958, when he was traded to Cleveland. Then, in 1960, his antics again became erratic but he managed to play professionally until 1967. However, he had psychiatric care even after that. As with the stories of other celebrities, Lerner encountered problems in discerning “the truth.”

He writes: “Depending on the version at hand, Piersall's breakdown was due to the Red Sox decision to play him at shortstop (instead of the outfield), his overbearing father, or a severe biological illness. He has been alternatively described as cured, recovered, or still nuts. His ability to overcome his mental illness has been attributed to Freudian psychiatry, shock therapy, lithium, or personal initiative. In other words, different audiences have placed their own spin on Piersall's story.”

Neurology is also prominent in the story of Rita Hayworth, the legendary film star. In 1971, at age 52, memory problems were attributed to alcoholism. In 1972, she could not perform in a new Broadway musical. By 1977, she was admitted to a private psychiatric hospital. She somehow continued to perform in public, sometimes by having her lines fed to her one-by-one. Alzheimer disease was finally recognized in 1978 and the diagnosis was made public in 1981. Hayworth's daughter Princess Yasmin Aga Khan became a patient advocate and a strong supporter of the Alzheimer's Disease Association.

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DEBATE ABOUT CONSENT, HOURS OF SERVICE

Neurology also played a role in the story of Barney B. Clark, the dentist who, in 1982, was the first person in the world to have an artificial heart. In the process he became a celebrity. Daily briefings and television appearances marked his progress and problems for his 112 last days. In the interim he had seizures, periods of delirium, and chronic encephalopathy, as well as physical repairs to the mechanical heart. Clark's case became the subject of intense debate about consent forms and whether a person with such serious heart disease can ever give consent freely.

The case of Libby Zion involved clinical neurology and ultimately changed all graduate clinical training programs. Her story is so complicated that Lerner relates five different versions. Reduced to the essence, the 18-year old college student was admitted to the hospital with fever and leucocytosis. She had been taking an antidepressant, phenelzine (Nardil). Cocaine was found in her urine. She was given meperidine (Demerol) for restlessness and acetaminophen as an antipyretic. Periods of delirium led to use of restraints. She died of cardiac arrest within 24 hours after admission. Lerner tells the several versions of the story with admirable impartiality, including evidence that phenelzine and meperidine should not be given together because of possible malignant hyperthermia.

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Libby Zion's father, Sidney Zion, was a journalist and former lawyer. He accused the hospital of murder, contacted his well-known journalist friends and the president of the New York City Council. The case became a segment for Mike Wallace on 60 Minutes, the television program. Governor Mario Cuomo and State Commissioner of Health David Axelrod appointed Bertram Bell, an internist, to head a commission. As a result, sleep deprivation for house officers became the subject of formal inquiry. Laws were passed to limit working hours in New York and then throughout the country. Training programs were changed everywhere.

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PATIENTS AS ADVOCATES

Another neurological problem affected Arthur Ashe who, in 1968, became the first African-American man to win the U.S. Open tennis title and, in 1975, won the tournament at Wimbledon. At age 36, in 1979, Ashe had a heart attack and bypass surgery. When he was later found to be HIV-positive, the infection was attributed to transfused blood for that operation. In 1988, a mild hemiparesis led to the diagnosis of cerebral toxoplasmosis. At first, he and his wife decided to keep the information private but a newspaper confronted him with the report and he became a vigorous advocate for patients and for HIV research. The toxoplasmosis was cured, but he ultimately died of Pneumocystis carinii in 1993.

The final story is another neurological disorder, adrenoleukodystrophy, and another famous medical movie, Lorenzo's Oil. When symptoms began in 1983, Lorenzo Odone was 5 years old. The diagnosis was made a year later and the outlook grim, death within two years. Hugo Moser had already found that the disease is marked by high serum levels of very long chain fatty acids). The boy's parents searched the literature and devised lipid changes in the diet. His aunt, an asymptomatic carrier of the X-linked gene, had high serum levels of very long chain fatty acids. When she took erucic and oleic acids, blood levels of the very long chain fatty acids returned to normal. The same results were seen in Lorenzo's blood, but his devastating symptoms and signs did not change. The movie starred Susan Sarandon, who became an advocate for leukodystrophy organizations. Nick Nolte was also involved publicly.

Lerner did not set out to make this a neurology case book, but eight of the 12 chapters include CNS disorders. In the course of the 50 years covered, public attitudes toward medicine shifted from subservient respect to paternalistic physicians to independence, resistance, and, finally, in the case of the Odones, to actual medical research by the families themselves. The fascinating journey is depicted by a writer who is a master at recognizing and unraveling the competing versions of each story.

©2007 American Academy of Neurology

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