Associate Professor of Gerontological Health Joan Teno realized how little help the dying get from the health-care system when she visited her hospitalized great-aunt several years ago. On the elderly woman’s face, Teno recalls, was the look of a frightened animal in pain. “There’s no reason for someone to be in severe pain,” she insists.
Teno’s research since then has shown that her aunt’s neglect was not an isolated case. After surveying 204 families with relatives who died in Rhode Island nursing homes during 1997 and 1998, Teno and her colleagues found that, even though 70 percent of the dying had living wills or other such directives, their wishes were honored only 40 percent of the time, and half of all the patients in the study died in pain. In addition, only 44 percent of the surveyed families reported that their dying relative had been asked about religious or spiritual concerns.
Thanks to a $380,000 grant from the Robert Wood Johnson Foundation, Teno and fellow researchers recently began a three-year project to improve end-of-life care at Rhode Island nursing homes. She hopes the project will train such health-care workers as nurse’s aides how to honor a dying patient’s wishes. The grant also pays for classes and consumer guides to teach families how to advocate for care that is more responsive to a patient’s needs.
Teno points out that the need for quality end-of-life care is quickly rising. Thanks to the aging of baby-boomers, in twenty years about 40 percent of all non-traumatic deaths in the United States will occur in nursing homes.