New research on dying in the U.S. aims to improve quality of care

A new study, funded by $2.3 million from the Robert Wood Johnson Foundation, will chronicle what it's like to die in the United States. Findings will be published for consumers and policy-makers and posted on the World Wide Web.

PROVIDENCE, R.I. -- Despite the universality of dying, little is known about what it's like to die in the United States. Now a new five-year study will answer such questions as whether Americans die in pain or comfort or are alone or with loved ones.

Researchers will characterize dying in the United States by examining existing data and interviewing more than 2,000 family members about the dying experiences of their loved ones. The study will include in-depth interviews with about 120 families.

The findings will be published in reports for both consumers and policy-makers. The reports will chronicle numbers and rates of deaths per region and per specific site, percentage of people who die in pain, use of life savings to combat final illness, and other indicators of dying tracked by the researchers. One report will also provide descriptions of the dying experience in every Medicare-certified nursing home in the nation.

In addition, the study's findings will be published on the World Wide Web at a site that will allow consumers to use their zip code to obtain information that describes dying in their communities.

At the end of the study, the reports will be merged into a book "that will provide authoritative information on how we die in the U.S.," said Joan Teno, M.D., associate professor of community health in the Brown University School of Medicine.

"In a time of increased managed care, fewer dollars for health care, more elderly, and greater attention to death through physician-assisted suicide, we want to keep focus on the quality of care for the dying and their families," she said. "We plan to ask simple questions, link the use of indicators to the quality of care, and make the findings accessible quickly, as a way to empower consumers and policy-makers."

Teno and Vincent Mor, director of Brown's Center for Gerontology and Health Care Research, will lead the nationwide study, collaborating with colleagues at Dartmouth University, Boston University and the Dana Farber Cancer Institute. Their work will be funded by a $2.3-million grant from the Robert Wood Johnson Foundation.

The project's work with the Dana Farber Cancer Institute will describe what medical students learn about the dying experience and improve that education relative to the students' knowledge, attitude and skills, Teno said.