Study questions dementia care

Using antibiotics for pneumonia could do harm

By Kay Lazar
Globe Staff / July 13, 2010

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Nursing homes routinely give dementia patients antibiotics to treat pneumonia, but a study of Massachusetts patients reveals that this widespread practice may be causing as much harm as good.

It found that using antibiotics to fight off pneumonia, a common illness in late-stage dementia, can prolong patients’ lives by nine months on average, but that they can suffer increased pain, depression, anxiety, and agitation from the treatment.

With an estimated 5 million Americans diagnosed with dementia — a number that is expected to more than double over the next two decades as baby boomers age — the findings are likely to fuel the debate about how much treatment is too much at the end of life. The researchers say the study should lead care-givers to consult with family members of dementia patients instead of automatically giving antibiotics for pneumonia.

“Over one-third of patients with advanced dementia have pneumonia in the last three months of life, and 42 percent of those patients will be on antibiotics in the last two weeks of life,’’ said the study’s lead author, Dr. Jane L. Givens, an assistant scientist at the Institute for Aging Research of Hebrew SeniorLife, a Boston-based nonprofit and health care facility affiliated with Harvard Medical School.

“Our goal with this research was not to advocate for one treatment or another,’’ Givens said. “We were just trying to provide the best evidence for families to make decisions.’’

Givens, a geriatrician who often encounters the dilemma of how to treat patients with advanced dementia and pneumonia at the facility’s nursing home, said her team launched its six-year study because there was scant science about the benefits and risks of antibiotic treatment to offer families.

Her study, published yesterday in the Archives of Internal Medicine, tracked 323 nursing home residents with advanced dementia in 22 long-term care facilities in Greater Boston between 2003 and 2009. It found that the vast majority of the patients, 91 percent, received antibiotics for episodes of pneumonia. Most of these patients, 55 percent, were given the medication orally, but at least 20 percent received more aggressive treatment, with hospitalization or antibiotics administered intravenously.

Patients who received no antibiotic treatments expressed the highest levels of comfort, based on observations of patients’ restlessness, agitation, moaning, and other behaviors that might indicate pain and discomfort. Comfort levels were progressively lower as the aggressiveness of care increased.

Patients with advanced dementia often get pneumonia because their immune system may be impaired and because they typically lose their ability to swallow, resulting in food ending up in their lungs and causing an infection.

But too often, families do not receive the information they need to make an informed choice about treatment, said Paul Raia, vice president of clinical services for the Massachusetts and New Hampshire Alzheimer’s Association. Raia spends time in nursing homes training staff about medication and behavior management techniques for dementia patients, and he said conversations with families about treatment choices often don’t happen because harried workers are worried about the legal consequences of their actions.

“Nursing homes want to make sure they aren’t going to get sued, so they are treating people as aggressively as possible and sending someone to a hospital,’’ he said.

The association tries to encourage families to discuss end-of-life care wishes before members are incapacitated, and to designate a health care proxy to make treatment decisions should they later become unable to care for themselves.

Billions of dollars are spent each year in the United States on intensive treatments for older patients in the last six months of their lives, according to the 2008 Dartmouth Atlas of Health Care. More than 80 percent of patients say they wish to avoid hospitalization and intensive care during their final days, the Atlas found, but those wishes are often overridden by other factors.

The Massachusetts Department of Public Health, which regulates nursing homes, has been working with the industry to improve staff training, so they are able to engage in knowledgeable conversations with families about treatment options, said Alice Bonner, a nurse practitioner who worked in nursing homes for 20 years and is now the state’s top nursing home regulator.

Bonner, director of the Bureau of Health Care Safety and Quality, said that often in the middle of the night, nurses have been unable to reach a physician or other specialist trained to make treatment decisions and explain them to family members, so they err on the side of caution and send patients to the hospital who may not need or want such aggressive treatment.

“We do see the opportunity to guide nursing homes in the right direction, away from this fear that [regulators] will cite them for not sending a resident to the hospital and more toward a discussion with families,’’ Bonner said.

Jackie Lustig, has been down that path with her father, who died in 2006 of Alzheimer’s disease after contracting pneumonia, and she is, once again, staring down that course with her 84-year-old mother, who also has Alzheimer’s and is in a Newton nursing home. Before he became incapacitated, Lustig’s father discussed with his daughters the couple’s end-of-life care preferences and designated them as health care proxies. “He was clear that ‘we don’t want any unnatural interventions to prolong our life,’ ’’ she said.

Lustig’s father died less than a day after contracting pneumonia, before his daughters had a chance to make any decision about antibiotic treatment. Shortly before that, the daughters declined a feeding tube for him, believing it would not have been what he wanted.

“If it came to that with my mother, of giving her [antibiotics] that would cause her to be agitated or cause pain, we would make a similar decision,’’ Lustig said. “It’s not easy, but we feel we knew what they wanted.’’

Kay Lazar can be reached at

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