People with late-stage Alzheimer's must often be cared for in a nursing home. But a new study shows that many nursing home residents with dementia are needlessly moved to the hospital when infections and other medical problems arise, a move that can be particularly stressful for anyone with Alzheimer's disease.
The new findings, published in The New England Journal of Medicine, showed that nearly one in five residents of nursing homes with advanced dementia were moved to the hospital or another facility during the last 90 days of their lives. In some cases, the patient was moved in the final three days of his or her life, even when such care may not be lifesaving.
"Such patterns of transitions are burdensome, particularly since the overwhelming majority of family members state the main goal of care is comfort," said study co-author Dr. Joan Teno, professor of health policy and practice at the Warren Alpert Medical School of Brown University and a palliative care physician. "Similar outcomes could be achieved by keeping these patients in the nursing home setting."
The authors, among them health economists, note that inefficient financial incentives play a role in the frequent moves. Patients who have been in the hospital for three days, for example, are paid for at a higher rate by government programs than those who remain in the nursing home.
A change in surroundings can be particularly upsetting for anyone with Alzheimer's disease. New settings can make confusion and disorientation worse for anyone with dementia. Such moves also raise the risk for medical errors, since new doctors and other health care staff are often not familiar with the particular needs of the patient.
Different policies and ideas about end-of-life care in different parts of the country can also lead to wide variations in how often someone with late-stage dementia is moved, the study found. The likelihood of a move varied from just one in 50 nursing home residents in Alaska to more than one in three patients in Louisiana. Blacks and Hispanics were also more likely than whites to experience burdensome transitions.
The researchers reviewed data from more than 474,000 seniors with advanced Alzheimer's and related problems who were living in nursing homes during their final months of life. More than 90,000 residents experienced at least one burdensome transition. These included a move during the final three days of life, returning to a different nursing home than the one they lived in before they went to the hospital, or multiple hospitalizations in the last 90 days of life.
In many cases, problems like pneumonia, urinary tract infections or dehydration that prompted the moves could have been easily treated within the nursing home, the researchers found. Other procedures included feeding tube insertions and treatments for bed sores.
Medical crises are difficult and stressful for patients and families, particularly in the final stages of dementia. And some medical care can be lifesaving. But the authors call for better coordination between health care staff and a realignment of payment systems "to make sure that people are getting the right care in the right place at the right time."
Families, too, can get involved with end-of-life care through measures like advance directives and "do not hospitalize" orders for loved ones in nursing homes. That way, nursing home staff can alert family members about impending moves and have a discussion about options with the family.
Pedro Gozalo, Joan M. Teno, Susan L. Mitchell, et al: "End-of-Life Transitions Among Residents With Cognitive Issues." New England Journal of Medicine, Vol. 365, Sept. 11, 2011, pages 1212-1221.