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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.