Lessons From Elizabeth Edwards

Lessons From Elizabeth Edwards

The New York Times (Well blog), 7 December 2010

The news that Elizabeth Edwards died on Tuesday is extremely sad. Ms. Edwards, 61, a lawyer, mother and author of two autobiographical books and the estranged wife of former Senator John Edwards, had only recently announced that she had stopped treatment for advanced breast cancer.

Ms. Edwards’s last disclosure provided another “educational moment,” both for others with cancer and for the general public. Although we are very familiar with celebrity cancer survivors, Ms. Edwards’s candor in her final days taught us what it means to be a cancer “non-survivor.”

Famous people with cancer have been in the news for decades. In the 1950s, a series of politicians, including Secretary of State John Foster Dulles and Senator Robert Taft of Ohio, disclosed that they had cancer. These individuals released very few specific details, however, and in no way were “spokesmen” for their disease.

Things began to change in the 1970s, when several well-known women, including the actress and diplomat Shirley Temple Black and two political wives, Betty Ford and Happy Rockefeller, disclosed that they had breast cancer. These women were more forthcoming, discussing the details of their treatments and things that women could do — breast self-examination and mammographic screening — to find breast cancers early.

Ms. Black, Ms. Ford and Ms. Rockefeller were especially effective advocates because they all survived their disease. “Cure” rates for certain cancers, like breast cancer, were increasing, and all three benefited. Celebrities cured of cancer not only could serve as spokespeople for decades, but also put an optimistic face on cancer control efforts. By the 1980s, people had begun to use the empowering term “cancer survivor” to describe such individuals, famous and not. Recent celebrity cancer patients, like Lance Armstrong, have underscored the connection between strength, optimism and survivorship.

But “survivor” was always an ambiguous term. Was a survivor only someone who was permanently cured of his or her disease? Or did it also make sense to call oneself a survivor even if there was a chance that the cancer might return and be fatal?

Ms. Edwards’s case demonstrates the tricky nature of labels with a disease as unpredictable as cancer. When her breast cancer was diagnosed in 2004, she was upbeat. There was no evidence that it had spread, and a family spokesman termed her prognosis “very, very good.” Ms. Edwards openly discussed her breast cancer in her 2006 book, “Saving Graces.”

But in March 2007, during her husband’s campaign for the presidency, Ms. Edwards announced at a news conference that the breast cancer had recurred, certainly in a rib and possibly her lung. What she did next was rare for celebrity patients: She announced that the cancer was terminal. Yes, Elizabeth Edwards was a breast cancer survivor, according to the lingo. But she would not survive the disease.

By being so frank, Ms. Edwards provided other important lessons. Some breast cancers, even those without evidence of spread at diagnosis, come back. Breast cancers that have spread to the bone are invariably incurable. But, Ms. Edwards emphasized, there are effective treatments that could keep her and women with similar cases alive for many years.

She remained hopeful, saying, “I expect to do next week all the things I did last week, and the week after that and next year at the same time all the same things I did last week.” This included assisting her husband’s candidacy.

Unfortunately, there was no way to sugarcoat the latest news. The treatments that Ms. Edwards mentioned probably bought her less than four years.

But once again, she used the opportunity to teach. She announced that she had reached the point, as do other Stage 4 cancer patients, where aggressive chemotherapy no longer can shrink the tumors. Her doctors said it would be “unproductive” to continue to treat the disease. Ms. Edwards chose to go home to die rather than to remain in the hospital.

There was much she didn’t tell us. How were doctors managing the symptoms — pain, nausea, shortness of breath — that her cancer probably caused? Did she sign up for palliative or hospice care, both of which specialize in the treatment of end-stage disease? Did she sign an advance directive explicitly stating her end-of-life wishes?

Even if Ms. Edwards herself did not reveal these details, these topics are now being discussed widely. As such, they are likely to help other individuals struggling with the same issues. That legacy, at least, will survive her.

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