EUGENE RICHARDS FOR TIMETHE WAY WE DIE: Machines can extend the length but not always the quality of life. Nearly half of us end up on ventilators for our last days
Dying is one of the few events in life certain to occur--and yet one we are not likely to plan for. We will spend more time getting ready for two weeks away from work than we will for our last two weeks on earth. Consequently, says Frank Ostaceski, who runs a San Francisco home for the dying, "we have more preparation for how to operate our VCRs than we do for how to die."
But as Moliere joked, "We die only once--and for so long!" So we should choose to die well. Too many of us don't. According to a new TIME/CNN poll, 7 out of 10 Americans say they want to die at home; instead, three-fourths die in medical institutions. More than a third of dying people spend at least 10 days in intensive-care units, where they often endure torturous (generally futile) attempts at a cure. Specialists say 95% of pain in terminally ill people can be mollified, but studies show that nearly half of Americans die in pain, surrounded and treated by strangers. A recent survey found that 3 out of 5 physicians treating dying patients had known them less than a week.
We plan assiduously for retirement. Yet about a third of Americans bankrupt their families in the process of dying. Sometimes they don't want all the IVs and monitors and bills yet suffer them anyway. Even in 1997, 30 years after the first living will was written in the U.S. to prevent overtreatment, 1 in 10 dying Americans said in a survey that his wishes were ignored. Too often, in the words of the Rev. George Caldwell, who ministers to the dying in Virginia, people die in "the final, tiny, helpless cosmos of a hospital bed."
Since 1975, when Karen Ann Quinlan's father went to the New Jersey courts to get her respirator turned off, the debate over dying in America has focused on a narrow question: Is there a right to die? But that struggle, so agonizing and dramatic, overshadows practical questions that will prove more important for most of us: How will we die, and can we die more comfortably?
A group of reform-minded physicians, caregivers and academics hopes to change the way doctors approach dying. They want all of us to discuss it sooner, so that no one faces a Kevorkian moment. "Our expectations as a culture for end-of-life care are too low," says Dr. Ira Byock, author of Dying Well: Peace and Possibilities at the End of Life. He thinks the assisted-suicide debate misses the point: "Doctors spend 12 minutes with you, even if you have a serious illness. So we only have a couple minutes to listen to your deepest fears, but we're going to give you the black pill?"
It may be a propitious moment for reform. Those who bore the baby boomers are nearing their end. Like everything else they have come across and disliked, boomers are taking note of the ways in which their parents are dying--and trying to do something about it. The growing movement to improve the way we die is the subject of the special report that follows and a separate documentary, created by Bill and Judith Moyers, airing this week on PBS. (See story on page 74.) These are the stories of people who have managed to die more comfortably, who have demanded better care from their doctors, who have talked about what's next with their families. If they are lucky, they have discovered how to cast some light over the shadow of death, in spite of a system that conspires against dying well.
You would think Bob Cummins would have had the most attentive health care as he neared the end of his battle with prostate cancer. The former lawyer was being treated in two of the best hospitals in New York City. He wasn't fabulously wealthy; he had devoted most of his time to producing jazz records, which aren't big moneymakers. But at age 69, Cummins had a nest egg.
Many cancer patients experience horrible pain near death, and even the best oncologists don't always know how to ease it. "I got the usual--'Load 'em with codeine'--and I couldn't focus across the room," Cummins recalled. The drugs sapped his will to do anything but stare at Knicks games. A friend who also has cancer phoned one day to ask if he had tried any new treatments. No. "It hit me," Cummins said later, weeping at the memory. "I had just given up."
He sought out a pain specialist and eventually found the department of pain medicine and palliative care at Beth Israel Medical Center in Manhattan, one of only a handful of such facilities in the U.S. Dr. Lauren Shaiova prescribed fentanyl, a stronger pain medication that made Cummins comfortable but not cloudy. Finally, his agony and fog lifted. "We call her our angel," said Nancy, Bob's wife, of Shaiova. But she was only practicing basic pain management, using readily available drugs. "Most docs just say, 'There's nothing more we can do,'" laments Shaiova. "I tell them, 'I can actively treat your pain.'"
Many doctors flinch at using controlled substances because of the nation's harsh antidrug laws. A 1998 survey of New York State physicians found that 71% chose a drug that did not require a triplicate form--necessary for dispensing many controlled substances such as fentanyl--even when the controlled drug was the appropriate treatment. Instead they regularly choose weaker medications because they fear legal scrutiny.