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TUESDAY, Nov. 2 (HealthDay News) -- Many people with advanced dementia aren't getting much-needed hospice care because the admission criteria is flawed, researchers say.
"Dementia is a leading cause of death in the U.S., and hospice care can benefit patients with dementia. The main hindrance to getting palliative [comfort] care is guidelines that try to guide practitioners to wait until an estimated life expectancy of six months," said Dr. Susan L. Mitchell, a senior scientist at the Institute for Aging Research at Hebrew SeniorLife in Boston, and lead author of a new study.
Such end-of-life predictions are difficult to make with certainty in dementia cases. Instead of using life expectancy as the requirement for admission, hospice care for dementia patients should be offered based on the patient's and family's desire for comfort care, suggest Mitchell and colleagues in the study published in the Nov. 3 issue of the Journal of the American Medical Association.
Hospice, or palliative, care is most often associated with cancer patients. The goal is to provide comfort and support to patients and their families, instead of life-prolonging treatments.
For people with cancer, the decision to switch to palliative care is more clear-cut. It generally occurs when someone decides to forgo traditional cancer treatments, such as chemotherapy or radiation, that don't seem to be working anymore, and instead receive comfort care, which includes better pain management and discussions about important end-of-life care decisions.
For people with dementia, the decision process is murkier. Most people with advanced dementia are already in nursing homes, receiving around-the-clock care, but palliative care can provide families with additional support and help families make difficult decisions, such as whether or not to treat infections with antibiotics or to use a feeding tube to deliver nutrition. Palliative care may also provide better pain management and symptom relief, said Mitchell.
To improve the likelihood of dementia patients getting palliative care, Mitchell and her co-authors tried to come up with a better tool to assess their potential life expectancy.
This new method, dubbed the Advanced Dementia Prognostic Tool (ADEPT), includes 12 items, such as body mass index, ability to perform tasks of daily living like self-feeding, bowel incontinence, shortness of breath and oral food intake.
The researchers compared their assessment tool with the standard Medicare hospice eligibility guidelines on 606 residents in 21 nursing homes.
Their tool accurately predicted a life expectancy of fewer than six months 67 percent of the time, versus 55 percent for the Medicare guidelines, said Mitchell.
"While ADEPT was better than the Medicare criteria, its predictive ability isn't perfect," said Mitchell. "The delivery of palliative care should be guided by a preference of comfort care rather than by life expectancy," she added.
A 2009 study by Mitchell and her colleagues was the first to label dementia a terminal illness like cancer and other incurable diseases.
Dr. Joseph Shega, an associate professor in the section of geriatrics and palliative medicine at the University of Chicago Medical Center, said he agrees that the issue of comfort care for dementia patients deserves attention.
"It's important to recognize that we're not really good at figuring out how long someone with dementia might live, and I agree with these authors that we should focus more on the goals of care and stop spending resources on trying to figure out how long someone might live," said Shega.
"Hospice provides more support for nursing home staff, better support for the family, and can help better educate the family on the natural process of dementia so they know what's going on," he explained.
Hospice also helps manage symptoms, like discomfort or agitation, Shega added, while making sure that care plans and treatment goals agree with the values and wishes of the patients and their families.
Read more about dementia and end-of-life care from the U.S. National Institute on Aging.
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