(2 of 5)
EUGENE RICHARDS FOR TIMECOPING WITH PAIN: Cummins' oncologist had prescribed analgesics as an afterthought. Pain specialist Shaiova, right, focused not on his cancer but on making Cummins comfortable
Many physicians are also erroneously worried that they will addict patients or even kill them. Last year Kathleen Foley, another New York City pain specialist, released a study showing that 40% of her fellow neurologists wrongly believed that using a dose of morphine big enough to control breathlessness would actually euthanize the patient. (In truth, there's no ceiling dose of morphine, as long as the patient is given time to adjust.)
Barbara Strong, 59, suffered because of such ignorance. Miami doctors refused the former nurse's pleas for medication when horrific cancer pain struck. After Strong rebelled and found a pain specialist, her regular doctor "went wacko...He said I would become addicted." So Strong stayed with the oncologist; eventually her pain got so awful she could barely move. "I wanted to be dead," she says. As a Christian, Strong couldn't go through with actually killing herself, but she did consider an alternative: "Jack Kevorkian, where are you?"
Instead, Strong dumped her doctor and called Dr. Pamela Sutton, the specialist who had helped her before. Soon she was back on the golf course. She could play until recently, when her condition slid. "I wouldn't be alive today if not for Pam Sutton," she says. Strong is fortunate to have sought help. Many don't, for a misguided reason: 82% of respondents in one study agreed with a pollster that "it is easy to become too reliant on pain medication." In fact, fewer than 1% of those treated with opioids become addicted.
Cummins, too, improved. He and his wife were able to meet the emotional challenges of terminal illness without the physical demands of agony. They listened to jazz; she offered spiritual guidance; they continued to decorate their East Harlem apartment with mosaics. "The quality of my life definitely improved," Cummins said, "and that goes hand in hand with prolonging it." Even his oncologist enthusiastically welcomed Shaiova's pain treatment. "He's happy about it," Cummins said. "He's a great doctor, but he's just not trained in pain management."
Most aren't. Medical schools have only just begun to introduce curriculums in managing pain and other symptoms of the dying. The subjects are difficult to teach because most professors don't know the material, and most textbooks say little about end-of-life care. It wasn't until 1997 that the American Medical Association began developing a continuing-education packet for doctors on the subject. The group that accredits hospitals began requiring them to implement pain-management plans only this year. "In the past few years, we have seen a sea change of improvements in the issue," says Foley, "but we've known how to do this since 1975."
Managing pain better would allow patients more comfortable deaths, but it can't guarantee easier ones. "When it comes to dying, pain comes in many flavors," says Robert Wrenn, who recently retired after 24 years of teaching about the psychology of dying at the University of Arizona. "Spiritual pain, social pain, even the unfinished-business pain that asks, 'Why am I here?'" Only the creepy would say dying should be cause to rejoice, and only the idealistic would say the health-care system could change our attitudes about it. But Byock, author of Dying Well, notes that dying's place in our culture has changed before. Until recently, most people died at home, because doctors couldn't do much. "Since the era when antibiotics were invented and surgery began to be safe, in the '30s, the focus has become to combat disease. The subject of the patient has too often been lost," says Byock.
As dying was medicalized, it was removed from our lives--to the ICU and the funeral home--both fairly new institutions if you consider how long people have been dying. Dislodged by modernity, dying became a taboo, slightly gross subject for polite conversation. Physicians and the families of their patients began to see death as a defeat, not an inevitable culmination. "We need education," says Dr. Kerry Cranmer of the American Medical Directors Association. "Instead surgeons get together when a patient dies to find out who screwed up."
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.