The Uneven Playing Field of End-of-Life Care

New research indicates that people with dementia received better-quality end-of-life care when they lived in a skilled nursing home, or when they had advance directives in place. These factors reduced the likelihood that “aggressive treatments” would be used to extend life.

Despite a common reluctance to moving into a nursing home, new research indicates that people with dementia who reside in a care facility may actually receive better-quality end-of-life care than a similar population living in the community. Having an advance directive is another way for older adults with dementia to receive end-of-life care in accordance with their wishes, according to researchers.

“Both written advance directives and nursing home residence are associated with lower rates of aggressive treatments that are often expensive but that are unlikely to extend the lives of patients with dementia and may decrease the quality of life,” note the researchers. “Aggressive” end-of-life care compares the level of Medicare spending, use of an intensive care unit, life-sustaining treatments, and whether the patient died in a hospital.

The researchers studied 3,876 Medicare beneficiaries age 65 and better who were divided into several categories: those with severe dementia, mild dementia, or normal cognition. They compared those with and without an advance directive, living in either a nursing home or community setting. The study shows that while the majority of participants with severe dementia were getting nursing home care by the end of their lives, 28.7 percent remained in a community setting, along with 51.4 percent of those with mild dementia.

Nursing home residents with severe dementia used intensive care units at a lower rate compared to their counterparts in the community (10.3 percent versus 17.1 percent), and were also less likely to die in a hospital (18.6 percent versus 26.5 percent), although Medicare spending was equivalent across both settings.

However, elderly people living in the community without an advance directive were more likely to receive “aggressive” health care toward the end of their lives, the researchers found. They state, “Advance directives might play a particularly important role in the care of patients with cognitive impairment—especially those with severe dementia—because accurately identifying and respecting patients’ preferences for care is challenging in light of their difficulty in fully comprehending complex information.”

Nearly $11,500 fewer Medicare dollars were spent on study participants with severe dementia who had previously specified their end-of-life health care preferences and were living in a community setting in their last six months of life, compared to their counterparts without an advance directive. Similarly, they were almost 18 percent less likely to die in a hospital and had lower rates of intensive care or life-sustaining treatments.

“Timely advance care planning after a diagnosis of cognitive impairment may be particularly important for older adults who reside in the community,” the researchers note, often because medical records for these patients may not be readily available to guide end-of-life care decisions.

In comparison, the differences in end-of-life care did not differ widely between patients with normal cognition, whether or not they had an advance directive.


Nicholas LH, Bynum PPW, Iwashyna TJ, et al. “Advance directives and nursing home stays associated with less aggressive end-of-life care for patients with severe dementia.” Journal of Health Affairs (2014); 33(4): 667–674.

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