The debilitating cycle of a nursing home admission followed by repeated hospitalizations, a spiraling into decline, and ultimately death.

With more than 1.6 million Americans now living in nursing homes, many of us are all too familiar with the debilitating cycle of a nursing home admission followed by repeated hospitalizations, a spiraling into decline, and ultimately death. A Brown University study published in The New England Journal of Medicine, confirms what many of us have observed: health care transitions, such as moves in and out of the hospital from a nursing home, do not lead to positive outcomes. More common are frequent medical errors; poor care coordination, infections and additional medications. For patients with acute dementia, these transitions can exacerbate already present symptoms such as agitation, confusion and emotional distress.

The scope of this syndrome — in which health care transitions often turn into emergencies — is expressed in a key Brown finding: almost one in five nursing home residents with advanced dementia experienced repeated hospitalizations in the last 90 days of life. Some were even moved as late as the last three days of their life. Burdensome transitions were also found to correlate with other indicators of poor end-of-life care.

This is a far cry from the overt wishes of most families, says Dr. Joan Teno, one of the study’s lead authors and Professor of Health Services, Policy and Practice at Brown University. In a 2009 report on end-of-life care, Teno says, “ninety-six percent of families said they requested the nursing home to focus on comfort and palliative care.” Instead, the default mode for most nursing homes has been to hospitalize patients when their health status changes, which is “unnecessary and burdensome,” Teno says. The better option for dying or acute dementia patients would be to emphasize palliative and comfort care administered in the familiar surroundings of a nursing home.

In our current fee-for-service model it benefits multiple parties. To be profitable, hospitals need patients and nursing homes have complied with a reliable stream of them. Doctors providing in-hospital care are more highly reimbursed, and patients returning to their nursing home from a hospital stay often need more intensive care. The use of highly skilled nurses triggers higher nursing home reimbursements. And once the hospital treadmill begins, the intensity of care ratchets up along with transitions, medications and complications.

Palliative care, which is a branch of medicine that focuses on alleviating symptoms and providing comfort, is less aggressive, costly and intrusive. However, success is dependent on doctors adequately counseling families on options and risks, as well as educating them on care directives. “But these conversations don’t happen enough,” Mitchell says. “And if they do happen, they are inadequate.”

Hospice care, which is part of Medicare, was originally designed for cancer patients with a terminal diagnosis. Requiring a six-month prognosis, patients with this directive forgo curative treatments for palliative care. Acute dementia – a profound loss of speech and motor capabilities – is also considered a terminal illness, but has lagged behind in nursing home hospice care. Conforming to the predictive six-month window is the number one challenge says Mitchell. As a result, hospice care has historically underserved acute dementia patients languishing in nursing homes.

“It’s like a game of hot potato between the hospitals and the nursing homes,” says Teno. “But no one is asking this question: Is this the right care for the severity of the person?”

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