"While improvements have been made in the care of the dying, the results of this survey attest to the continued need to improve the quality of care for seriously ill and dying persons," says lead author Joan Teno, M.D., a professor of Community Health and Medicine at the Brown Medical School. "Given the burgeoning population of baby boomers soon reaching retirement age, the need for reform is urgent."
Teno and her colleagues examined the deaths of 1,578 people from 22 states. (Those 22 states accounted for 70 percent of all the deaths in the United States in 2000). They interviewed bereaved family members to assess the end-of-life care the decedents had received in home and institutional settings. Given the study's design, the interviews provide an accurate representation of the 1.97 million Americans who died in 2000 of non-traumatic causes, the researchers say.
For almost 70 percent of the people studied, the last place of care (defined as a setting where more than 48 hours had been spent prior to death) was a nursing home (30.5 percent) or a hospital (38.4 percent). While the researchers found opportunities for improvement in all settings, they say the survey revealed that reform is most needed in our institutions. The study found:
"Our findings demonstrate woefully inadequate care for both dying persons and their families," says co-author Fox Wetle, associate dean for public health in the Brown University Medical School. "There is an urgent need for public policy to address how to care for frail, older persons dying of multiple, chronic illnesses." Based on their findings, the authors call for:
The study was funded by a grant from the Robert Wood Johnson Foundation. In addition to Teno and Wetle, other authors listed on the JAMA publication from Brown University are Vincent Mor, chair of the Department of Community Health; and Lisa Welch, Renee Shield and Virginia Casey, all researchers at the Center for Gerontology and Health Care Research. Brian Claridge from the University of Massachusetts at Boston, Center for Survey Research, was also an author.
Editors: The researchers have published additional information on the study, as well as narrative quotes from family members illustrating their findings, on the following Web sites: http://www.chcr.brown.edu/dying/factsondying2004.htm (embargoed)
http://www.chcr.brown.edu/dying/factsondying.htm (after 4 p.m. EST Jan. 6, 2004)
JAMA