A Kinder, Gentler Death

By John Cloud

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.

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.

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.

But hospice, which well-meaning clergy members imported to this country from Britain in the 1970s, ministers to only 17% of dying Americans. "The word hospice has toxic connotations," says Clausen. That's partly because Medicare starts a fatal clock ticking on hospice patients: it will reimburse for hospice only after two doctors certify that a patient has less than six months to live. But many doctors are reluctant to do so, especially for unpredictable diseases like heart failure. Some physicians also fear regulatory scrutiny, since the U.S. Health Care Financing Administration has actually ordered investigations of hospice patients who live longer than six months. Some fear that a short prognosis will be self-fulfilling, and many just don't like to tell someone he is dying. Hence the average length of stay in U.S. hospices is between two and three weeks, hardly enough time to take advantage of a hospice's supportive environment.

So long as it requires people to abandon hope of full recovery, hospice is unlikely to become a mainstream phenomenon. Most people want to fight, hang on, hope for a miracle. Recently, Cummins, the jazz producer, heard that he could qualify for a clinical trial. He knew the trial carried only a remote possibility of a cure, but he didn't want to give up. Even so, when he and Nancy totaled the cost of his pain medications--$2,250 a month--they were presented with a cruel choice: opt for hospice to save money, or go for the trial and keep paying for the drugs themselves (the Medicare hospice reimbursement includes prescriptions; Medicare generally doesn't). "So it's hospice vs. bankruptcy," said Cummins. He and Nancy chose hospice care. Bob died at home Aug. 17, before the trial began.

Other patients also face difficult choices because hospices don't usually offer pricey procedures such as dialysis, radiation or chemotherapy--even when designed merely to palliate symptoms. George Thielman, a retired printer from Chicago, didn't want to stop life-prolonging dialysis after a cancerous kidney was removed and the other began to fail. "Ultimately, he died in a nursing home, a place none of us wanted him to be," his daughter Betsy says. "We were always operating in crisis mode."

Another shortcoming of hospice is that not everyone can afford or wants to die at home. (Although a few hospitals have inpatient hospices and 30% of nursing homes now contract with hospice companies, 90% of hospice patients live at home.) Gans, the retired psychologist who lives alone in a Manhattan high-rise, is worried that she will need medical care at night. More generally, African Americans, Russian immigrants and others who have had less access to health care fear that doctors who recommend hospice are trying to get rid of them. "All people want to die with dignity, but the definition is different," says Dr. Annette Dula, who wrote a book on ethics in African-American medical care. "In the black population, people want aggressive, continuing treatment even if it means food tubes, pain, antibiotics and losing their savings. It's a sign of respect."

Designing a health-care system that would take into account every unique death would be impossible. But reformers say there are a few things the U.S. could do to improve how most of us die. First, insurance companies could reimburse more kinds of palliative care, which is cheaper than attempting a cure. "Insurance will routinely cover expensive chemo with a 5% chance of success but may not cover opioids for pain relief," says Foley, the pain specialist. "We are talking about a redistribution of money that we already spend." When Dr. Shaiova was caring for Cummins, she spent an hour with him one day explaining what hospice could do for him. "How do I describe to Medicare how I treated him that day?" she asked. Currently, many palliative-care and hospice programs rely on donations to stay afloat.

This month Congress will consider ways to increase the use of Medicare's hospice benefit. Senator Charles Grassley, the Republican who chairs the Special Committee on Aging, wants to clarify Medicare's requirement of a six-month life expectancy as a guideline, not a hard rule. (Reformers hope Congress will formally declare it an average instead of a cap.) Senators Susan Collins, a Republican, and Jay Rockefeller, a Democrat, also plan to introduce a more general end-of-life health-insurance plan.

Next, more states could begin programs like one in Oregon that offers all patients a form stating their preferences on resuscitation, tube feedings and so on. That state has also benefited from two referendum campaigns on assisted suicide, which taught voters a great deal about the current shortcomings of end-of-life care. Today only about a third of Oregon residents die in institutions, in contrast to the 75% national average. As a state, Oregon spends the lowest amount on inpatient care in the final six months of life.

Cities can adopt some of the changes under way in Missoula, Mont., where a project called the Quality of Life's End is educating local doctors, lawyers, clergy members and students about what it means to die well. For example, both of Missoula's hospitals now treat pain as a fifth vital sign, ensuring that medical staff will take it seriously. Recently the project contacted Missoula's lawyers to begin teaching them to write better advance directives. And project volunteer Gary Stein incorporates end-of-life issues into the high school psychology course he teaches.

Graduate schools could also teach more about how we die, particularly medical and nursing schools as well as seminaries. Current managers of nursing homes and geriatric wards could inquire about the A.M.A.'s course on end-of-life care and subscribe to the three-year-old Journal of Palliative Medicine. They can learn a lot from Veterans Affairs hospitals, many of which have made improvements in end-of-life treatment in the past five years.

Doctors could speak more openly with patients about prognosis and mention comfort care when a serious illness is first diagnosed--even as traditional treatments are explored. Then, if a cure isn't found, advises Dr. Fred Meyers, who chairs the department of internal medicine at the University of California at Davis, "be honest and say, 'I don't think I can cure you, but I'm not going to abandon you; you're going to get good consultation, we'll take care of your symptoms and take care of your family.'"

The most challenging reform may be to get patients to become their own advocates for better death. That would require frank talk about a somber subject. That's not an entirely unreasonable expectation, reformers contend. They point out that Americans successfully changed birth in the 1960s and '70s by getting fathers more involved and focusing more on mothers' well-being. Byock believes that the boomers, who demanded many of the changes in the way we come into the world, will be equally insistent on changing the way we leave. "The baby boomers are the most self-centered, arrogant, willing-to-try-new-things generation ever," says the 49-year-old, who drives a Saab. "They're going to bring the same collective raising of expectations to the care we give people who are living through the end of their lives."

--With reporting by Wendy Cole and Maggie Sieger/Chicago, Dan Cray/ Los Angeles, Greg Fulton/Atlanta and Anne Moffett and Dick Thompson/Washington

For more on end-of-life care, go to time.com To order reprints of this article, please call 212-522-1779 or e-mail TimeReprints_US@timeinc.com

With reporting by Wendy Cole and Maggie Sieger/Chicago, Dan Cray/ Los Angeles, Greg Fulton/Atlanta and Anne Moffett and Dick Thompson/Washington