Dementia patients should receive high-quality palliative care

Hebrew SeniorLife Institute for Aging ResearchNov 3 2010

Preference for Comfort, Not Life Expectancy, Should Guide Care

The system for hospice admissions for patients with advanced dementia, which is a terminal illness, should be guided by patient and family preference for comfort, not estimated life expectancy, says a new study published in the Nov. 3 Journal of the American Medical Association by the Institute for Aging Research at Hebrew SeniorLife, an affiliate of Harvard Medical School.

Currently, patients requesting hospice services must be certified by their physician to have six months or less to live, and must sign a statement choosing comfort care services in lieu of curative treatments.

"Whether a patient with advanced dementia lives one month, six months or longer," says lead author Susan L. Mitchell, M.D., M.P.H., a senior scientist at the Institute for Aging Research, "they should get high-quality palliative [comfort] care if that is their wish. Because we can't predict with a high level of accuracy who will die within six months, hospice eligibility should be guided by a desire for comfort care, not by how long a patient is expected to live."

Hospice has been shown to benefit patients dying with dementia, but hospice has traditionally under-served dementia patients. Only about 10 percent of hospice patients have a diagnosis of dementia and only an estimated one out of 10 people dying with dementia gets hospice care. Hospice professionals cite estimating life expectancy as the main hindrance to enrolling patients.

Earlier this year, Dr. Mitchell and her colleagues created a new tool to assess mortality risk in advanced dementia patients. The 12-item Advanced Dementia Prognostic Tool (ADEPT) scores such measures as age, shortness of breath, bowel incontinence, and weight loss to estimate a dementia patient's estimated risk of death within six months. The higher the score, the higher the risk of death. The tool was designed using rigorous statistical models and a nationwide database of nursing home residents with advanced dementia.