Trebek’s Disclosure Becomes Teaching Moment
When Alex Trebek recently went on national television and described the excruciating belly pain he had experienced due to chemotherapy for Stage 4 pancreatic cancer, it was a moment unlike any other in the history of celebrity illnesses. Trebek rated the pain an 11 out of 10 and admitted that he “writhed in pain and cried in pain.” Trebek’s forthrightness highlights how, increasingly over the past 75 years, famous people who become seriously ill have struggled with the issue of disclosure. Celebrity illnesses have been important educational moments and the internet has accelerated a trend toward disclosure. Yet, in their admirable quest to fight diseases in the public eye, these celebrity narratives also have pushed stories that give hope but misinform. Trebek’s story is notable not only for his disclosure of medical details, but also for its honesty about the challenges he confronts. For centuries famous people went to great lengths to conceal illness. Disclosure, they believed, would violate their privacy and make them look vulnerable. Presidents — Grover Cleveland, Woodrow Wilson and John F. Kennedy — have long hidden diseases, in efforts to maintain an image as healthy and capable leaders. When actor Rudolf Valentino and illusionist Harry Houdini unexpectedly died of abdominal infections in 1926, their illnesses were very public events. Valentino fans held a vigil outside a New York City hospital until the actor succumbed. Houdini’s obituary in the New York Times dutifully discussed how a ruptured appendix led to streptococcal peritonitis, and speculated whether playful punches that Houdini had received might have contributed to his demise. Yet, coverage of illness concealed as much as it revealed. Not only was available information incomplete, but it also accentuated the positive. This pattern was exemplified by Lou Gehrig, who was diagnosed with amyotrophic lateral sclerosis in 1939. With Gehrig’s permission, the Mayo Clinic announced his ALS in a news release that was covered on the front page of hundreds of newspapers. But these stories omitted any discussion of how the disease was universally fatal. Instead, news reports focused on Gehrig’s participation in a clinical trial of vitamin E to treat ALS, noting his “somewhat improved” status, even though vitamin E was ultimately shown to have no effect. So, when Gehrig passed away, the public was shocked. Medical statistics easily could have predicted his death, but the hope that permeated coverage ignored this reality. A similar optimism shaped coverage of Margaret Bourke-White, the pioneering female photojournalist for Life magazine, after she was diagnosed with Parkinson’s disease in 1957. Two years later, a photo essay in Life, “The Famous Lady’s Indomitable Fight,” featured an experimental brain operation she had undergone. Bourke-White called the surgery a “gift.” Whatever positive effects Bourke-White may have experienced diminished, and a second operation in 1961 was unsuccessful. The majority of the public would not have known this, even though Bourke-White kept up an admirable and honest correspondence with many fellow Parkinson’s sufferers before dying in 1971. When she became increasingly immobilized by the disease, journalists lost interest. Upbeat narratives were much easier to tell when the outcomes were actually positive. During the 1970s actress and diplomat Shirley Temple Black, first lady Betty Ford and philanthropist Happy Rockefeller all developed breast cancer. All three gave vivid details of their surgery and urged other women to examine their breasts and get annual mammograms. Given how shrouded in secrecy breast cancer still was at the time, these revelations provided an enormous education for American women (and men). Over time, the reality of serious illness has received greater coverage. In 1994, for example, the family of Jacqueline Kennedy Onassis announced she was declining additional chemotherapy for her non-Hodgkin lymphoma and was going home to die. Indeed, by the 1990s, it was becoming difficult for famous people to conceal their illnesses. Certain celebrities relished the opportunity to educate others even in the face of their mortality. Others saw candor as a way to control stories. For instance, actor Michael J. Fox, who was diagnosed with Parkinson’s disease in 1991 at 29, has been quite frank about the deteriorating course of his disease. Fox has made a point of appearing on television while experiencing severe jerking movements. Trebek’s story is still striking for its immediacy and honesty. March 6, he announced he had Stage 4 pancreatic cancer. Not only had Trebek recently learned of the diagnosis, and thus not had much time to process it, but he also released his news online via a video. The same man who amicably read the answers on “Jeopardy!” was calmly telling viewers he had a fatal disease. The video was far more dramatic than a news release or a news conference and was thus a great educational moment. Several of my patients have asked me about pancreatic cancer screening in the wake of Trebek’s news. Trebek provided even more vivid information May 12 on CBS’ “Sunday Morning,” when he described the excruciating stomach cramps that he attributes to his chemotherapy. Trebek was thoroughly rejecting the old calculus in which ill celebrities concealed information so as not to appear vulnerable. Yet Trebek has continued to overemphasize hope. When initially diagnosed, he said he planned “to beat the low survival rate statistics for this disease.” “Keep the faith,” he added, “and we’ll win,” even jokingly remarking that he needed to survive at least three years to fulfill his “Jeopardy!” contract. Trebek’s case reminds us of the complicated nature of these narratives. Although they can alert the public to diseases and the latest scientific knowledge, they are individual stories and depend on who is telling them and what they are willing to say. Just as ordinary people may have difficulty accepting their own mortality, the same is true for famous patients. As public figures, celebrities may even feel an obligation to be optimistic and inspirational. So let’s wish Trebek the best and appreciate how he has handled such a major personal challenge with grace, equanimity and even humor. But let’s also recognize the limitations of what we can learn from his story.