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EUGENE RICHARDS FOR TIMECARING FOR A CAREGIVER: Earl Embry of Alabama with friend Linda, who aided him before his death
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."
Changing attitudes means getting more people to give up rescue medicine in favor of comfort care when the hope of a cure is minuscule. "For many people, it's easier to say, 'Whatever you say, Doc,' rather than spend two weeks thinking through your own death," says Lynn. "That's uncomfortable. But life is mostly about grandchildren and gardening, sunrises and eating chocolate. It's not about pills." Fine, but how do you eat a Hershey bar when you know it could be your last?
One solution is hospice, a kind of care for the dying that emphasizes comfort over cure. Hospice patients must forgo further curative and life-prolonging treatments, which means they usually leave the hospital. (A hospice can be a separate place, but usually the word refers to home care.) Doctors, social workers, art therapists and others manage physical pain and help patients navigate the emotional terrain of dying.
When John Wracian, 80, was first diagnosed with colon cancer last year, the former General Motors supervisor from Downey, Calif., underwent surgery. But when it didn't work, he accepted that chemotherapy probably wouldn't either. Instead, a hospice nurse checked on him and his wife Carol twice a week, as did a chaplain. "It's the best thing that came along," said John, who read several books a week and watched the Dodgers. "Nine days in the hospital [for surgery] was more than enough. Now I'm home, enjoying the life I have." He and Carol didn't expend energy on frequent trips to doctors; instead, the couple focused on saying goodbye. "When the time comes and he's gone, I won't have to look back and say, 'I wish I would have said that,'" said Carol, recalling that her dad passed away without ever speaking with her mother about his dying. John Wracian died Sept. 2.
Hospice can also have more practical benefits. "We discuss whether they need a homemaker to wash dishes or read to the patient so his wife can get out because she's exhausted," says Margaret Clausen, president of the California Hospice Foundation. On average, hospice patients receive at least three hours a day more attention than nursing-home patients. And hospice is cheaper than traditional care. For example, at Balm of Gilead Center, a hospice in Birmingham, Ala., the average cost per patient per day is $720, in contrast to $3,180 for ICU patients.