It used to be that most people died at home, surrounded by family. But ever since the 1950s, as professional end-of-life care has become more common, Americans have increasingly lived out their final days in nursing homes or hospitals, and even those dying at home have often been cared for by home-care nurses or other non-family help. What has this change meant for the quality of life in those final days?
Joan Teno thinks she knows. A professor of community health and medicine, Teno recently led the first comprehensive study of how people die in the United States, and the results are discouraging: families of patients who passed away in nursing homes or hospitals, or under the supervision of home-care agencies, more frequently reported that their loved ones died badly than did families whose relatives died at home with hospice services. The former group reported higher numbers of painful deaths, instances of inadequate emotional support, and caregivers who failed to treat patients respectfully.
To conduct the study, the results of which were published in the January Journal of the American Medical Association, researchers looked at 3,275 death certificates from 2000. The certificates came from twenty-two states and excluded deaths from trauma and those in which the deceased was younger than eighteen. Researchers interviewed about 1,600 of the relatives listed on the certificates, and learned that nearly 70 percent of the 1,600 patients had died in either a hospital or a nursing home. Of the 30 percent who died at home, half received hospice care, 12 percent had at-home nursing services, and the rest had no nursing care at all.
The interviews revealed that, overall, one in four patients did not receive enough pain medication. Among those who died in a nursing home or with at-home nursing services, the rate was even higher. Half of all patients did not get the emotional support they needed, but the rate was lower for people under hospice care. Twenty-one percent complained that their dying relatives were not consistently treated with respect; among those who died in nursing homes the number rose to 32 percent.
The nursing-home numbers are most troubling to Teno, because in fifteen years as many as 40 percent of dying Americans will spend their last days in such care. Teno, whose mother lives in a nursing home, says the failure to treat patients with respect is “a sign of a system that’s just not working.”
Tom Burke, spokesman for the American Health Care Association, which represents nursing homes, says nursing facilities have been focusing more on pain management. “There’s no question,” he says, “that the entire health care field can do better in terms of providing support to the family.”
Home hospice care fared better in the study, which was funded by the Robert Wood Johnson Foundation. Seventy percent of families rated hospice services as excellent; fewer than 50 percent rated other services as highly. Teno warns, however, that hospice care is far from perfect. Her survey revealed that management of breathing problems, for example, was as much a problem for hospice patients as it was for everyone else.
For Teno, much of the trouble lies with society’s spending priorities for medical care. Nursing-home workers, she says, average about the same hourly wage as McDonald’s employees. The government funds most nursing-home care, Burke explains, and generally doesn’t pay enough. Nursing homes also lose federal money when they place patients in hospice, Teno says. Instead of providing hospice care, a nursing home may give a dying patient physical therapy.
The study also showed that patients are becoming more sophisticated about controlling their end-of-life care. Seventy percent of those surveyed had signed an advance directive to help guide such things as their pain management and the use of feeding tubes. Such plans are particularly important in directing doctors, whose medical training tends not to deal much with end-of-life issues. “They’ve always looked at dying as sort of a defeat,” Teno says, “as failure.”