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Distributed January 6, 2004
Contact Cynthia Ferguson

Physical and emotional support often lacking
Largest multistate study finds end-of-life care still ‘woefully inadequate’

In a national study on end-of-life care in the United States, Brown University researchers find the physical and emotional needs of the dying continue to be unmet, particularly for those who die in institutions. With baby boomers about to reach retirement age, the need for reform becomes increasingly “urgent,” according to Joan Teno, lead author of a paper to be published Jan. 7, 2004 in the Journal of the American Medical Association.

PROVIDENCE, R.I. — Too many Americans dying in institutions continue to receive inadequate pain medication, emotional support, respect and communication with physicians, according to a national study published in the Jan. 7, 2004 issue of the Journal of the American Medical Association. This is the first study to examine the quality of end-of-life care on a national level.

“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:

  • One in four people who died did not receive enough pain medication and sometimes received none at all, according to family members. Inadequate pain management was 1.6 times more likely to be a concern in a nursing home setting than in a home setting with hospice.
  • One in two patients did not receive enough emotional support, according to the respondents. This was 1.3 times more likely to be the case in an institution.
  • One in four respondents expressed concern over physician communication and treatment decisions.
  • Twenty-one percent complained that the dying person was not always treated with respect. Compared with a home setting, this was 2.6 times higher in a nursing home and 3 times higher in a hospital.
  • One in three respondents said family members did not receive enough emotional support. This was about 1.5 times more likely to be the case in an institutional setting.
  • Fifteen percent of respondents said they do not believe the health-care providers had enough knowledge about the patient’s medical history to provide the best care.
  • Respondents whose loved ones received hospice in a home setting were the most satisfied. More than 70 percent rated hospice care as excellent. Fewer than 50 percent gave that grade to nursing homes or home health services.

“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:

  • Expanded access to hospice, both in home and institutional settings. Statewide efforts should be taken to improve timely referrals to hospice, and federal policy-makers need to examine the financial barriers to hospice referrals in nursing homes.
  • Continued growth in the field of palliative medicine. Every medical school should have faculty members who specialize in palliative medicine. Curricula should address pain management and care of the dying patient.
  • Improved end-of-life care in nursing homes. “Blaming the nursing home industry is not the answer,” notes Teno. “In the last decade, nursing homes have been faced with substantial cuts in federal funding and increased care management challenges.” There is an urgent need, the researchers say, for Congress to address staffing shortages and the increasing rate of U.S. nursing homes going bankrupt.
  • Annual reporting on the quality of care of the dying to Congress and the President. The researchers call on the National Center for Health Statistics to conduct ongoing mortality surveys examining the quality of end-of-life care in the United States.

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: (embargoed) (after 4 p.m. EST Jan. 6, 2004)


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