Distributed June 25, 2002
News Service Contact: Scott Turner
Quality of care at the end of life
Feeding tubes may not help in severe dementia, yet use varies widely
Use of feeding tubes in nursing home patients with severe dementia is more than 10 times higher in some states than others despite evidence that it may not delay death or improve quality of life, according to a study by Brown University researchers in the June 26, 2002, issue of the Journal of the American Medical Association.
PROVIDENCE, R.I. — Feeding tubes may neither delay death nor improve quality of life for nursing home patients with severe dementia, yet the use of feeding tubes varies widely. In some states the use of feeding tubes is more than 10 times the rate of other states, according to a new study by Brown University researchers.
“Such striking variation calls for increased communication among physicians, patients prior to their developing this level of dementia, families and nursing home regulators,” said lead author Joan Teno, M.D., professor of community health and medicine at the Brown Medical School. The study appears as a research letter in the June 26, 2002, issue of the Journal of the American Medical Association.
Teno and colleagues analyzed records for 1999 from the Minimum Data Set, a national repository of nursing home data. The data set included information on feeding tube use among 385,741 U.S. nursing home residents with severe dementia.
Nationwide, about 18 percent of nursing home residents with severe dementia had a feeding tube, with use rates varying from 3.8 percent in Nebraska to 44.8 percent in the District of Columbia. The only identified factor that was closely associated with the interstate differences was physician use of “do-not-resuscitate orders” (DNRs). For each 10-percent increase in the use of DNR orders in a state, there was a 4.5-percent decrease in feeding tube use.
“A DNR order is about resuscitation and should not influence decisions about whether to use a feeding tube,” said Teno. “It may be that doctors are giving up on their patients with DNRs, so don’t recommend further treatment. This underscores the need for greater discussion about decisions to use feeding tubes. That use shouldn’t be just an automatic process. A careful discussion is especially important for patients who are severely demented, since medical evidence questions whether feeding tubes improve the quality or even the length of life. These should be broad discussions that include the community, state regulators and consumers.”
State regulators play a critical role, Teno said. “Nursing homes are often afraid of being cited by regulators if some of their patients are losing weight,” she said. “But near the end of life, weight loss is exactly what happens. Physicians may believe that putting a feeding tube in a severely demented nursing home resident will avoid that weight loss and keep the nursing home from being cited.”
Editors: State-by-state findings on feeding tube use, DNR orders, and orders to forgo artificial hydration and nutrition are available at www.chcr.brown.edu/dying/factsondying.htm. That Web site also includes individual state reports of pain management, site of death, number of terminally ill patients and other information related to the nation’s nursing homes.
Feeding tubes deliver liquid nourishment temporarily through the nose or permanently directly into the stomach. They may be used in persons who have difficulty swallowing, common in cases of severe dementia. This difficulty in swallowing can result in weight loss and frequent bouts of aspiration pneumonia. All are harbingers of the terminal phase of dementia.
However, feeding tubes do not solve the problem of aspiration pneumonia because patients often still inhale their own saliva, which the body continues to produce, Teno said. In fact, two authoritative summaries of current scientific evidence question whether feeding tubes truly help delay death or enhance quality of life in patients with dementia, she said.
No state law prohibits forgoing or withdrawing a feeding tube. However 15 states require written evidence in an advance directive of patient preferences to forgo a feeding tube, but this factor was not associated with the interstate variations found by the researchers. “Use of feeding tubes comes down to individual preferences of patients and whether using them achieves the treatment goals that patients value,” Teno said.
Dementia often contributes to the death of nursing home residents. Patients with the level of severe dementia in this study are bed bound and unable to communicate. Nursing homes are increasingly the site of death for Americans. By 2020, about 40 percent of Americans will die in a nursing home, Teno said. “Nursing homes are our demographic future,” she said.
Teno is also associate director of the Center for Gerontology and Health Care Research at the Brown Medical School and medical director of Home and Hospice Care of Rhode Island. The study’s other authors are also members of the Center. They include Vincent Mor, chair of the Department of Community Health; Debra DeSilva, project coordinator; Glen Kabumoto, project analyst; Jason Roy, assistant professor of community health; and senior author Terrie Wetle, associate dean of medicine for public health and public policy.
The Robert Wood Johnson Foundation, Princeton, N.J., funded the study.