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EUGENE RICHARDS FOR TIMETHE TWILIGHT: Lucy Shinn with her daughter and son-in-law in Melrose Park, Ill.
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.