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Which isn't to blame doctors alone. Americans as a whole have a hard time discussing dying--even those who have planned for it. According to the TIME/CNN poll, 55% of those over 65 now have an "advance directive," a legal document that lays out what sort of care they want before death. This number has never been higher. But only 6% of those worked with a doctor to write the document; other polls have shown that very few people even tell their doctors they have advance directives. In addition, a study found that although many Americans legally designate someone else to make medical decisions after they are unable to, 30% of those who have been designated don't know they have been picked. Even our faith leaders, the people many of us seek out for guidance near the end, have a hard time giving it. "The truth is, clergy are frequently not comfortable with end-of-life care," says Keith Meador, Duke University professor of theology and medicine. A report found that one-third of clergy members had no training to help dying people.
The reformers hope to begin a new dialogue about dying, one that integrates its enlightening potential. Says Byock: "Dying people have the chance to say what matters most, renew spirituality, complete relationships...It's not fun, not pretty, and I don't want to romanticize it, but, gee, it's not without some value." In a society that hides dying, however, it's often hard to see that value. Last year, retired New York psychologist Felice Gans, 72, was diagnosed with incurable pancreatic cancer. She was originally told she had two months, but she has lived more than a year. (Such imprecision is common. A University of Chicago study found recently that only 20% of physicians' predictions of survival were accurate.) So uncertainty colors Gans' life--will she be able to take a long-planned train trip this month through the Rockies? Many days bring "stark terror...I sometimes wish that I had a belief system," she sobs. "Then I feel like I'm two years old, and I have no control. I spend part of every day mourning my own death."
And yet Gans, who never married, doesn't have anyone to help guide her. Though she likes her doctor as an oncologist, he is fairly brisk during their appointments, as HMO-era doctors must be. Even when she was first told she had a terminal illness, the doctor and staff gave little comfort. "They don't want you crying," Gans says. A nurse had two words for her: "Calm down." Eventually Gans found a support group, Gilda's Club, named for comedian Gilda Radner, who died of ovarian cancer. When Gans arrived for the first meeting, she saw that it was called a "wellness group." But what she needed was a chance to discuss the reality of her impending death--her frail appearance, the sheer mundanity of her days. "I'm not into talking about, 'Maybe they're going to find a drug for me,'" she explained.
So how do we fix these problems? The first step, say the reformers, is to change the way we think about the end. "It's not about death," says Joanne Lynn, director of the RAND Center to Improve Care of the Dying. "It's really about living with a disease that's going to kill you, about good living on the way to death. We spend as much time with our fatal illness as we spend as toddlers."