Improving End-of-Life Care for Dementia Patients

A new study calls for creative and wide-reaching solutions to the problem of sub-optimal end-of-life care for patients with dementia.

An estimated 500,000 people die every year in the United States alone suffering from Alzheimer's or related diseases, and many of them receive inadequate pain control, are subjected to ineffective and invasive therapies such as tube feedings, and do not receive the benefits of hospice care.

Among the barriers to better care is the unwillingness of doctors and families to think of dementia as a terminal illness, since dementia patients decline very slowly. A second barrier is the inability of doctors to predict the time of death. U.S. insurance plans offer hospice benefits only to patients with a life expectancy of six months or less, but the median survival of dementia patients is several years and varies greatly. Patient assessment is difficult because patients can no longer describe symptoms or discomfort. A third barrier is the poor fit between dementia and healthcare financial incentives, which reward providers for transferring rapidly declining patients into hospitals, where the process of dying is prolonged. "The only parties who may not be better off from the transfer,” note the authors, "are the patient and family.”

The solutions involve education, better prognostic tools, and changes in the healthcare system. Perhaps the most urgent is the need to align financial incentives with the provision of palliative care. The authors suggest relaxing the criteria for hospice to accommodate earlier referral of patients with dementia. Caregivers need to shift away from curative to palliative care. The study, one of four on the subject, was conducted by three geriatricians at the University of Chicago (IL, USA) and was published in the October 2004 issue of the Journal of General Internal Medicine.

"The nature of illness is the root cause of the problem,” explained first author Greg Sachs, M.D., professor of medicine at the University of Chicago. "Our healthcare system is oriented toward treatment of acute illness but dementia produces a long, slow, unpredictable decline.”

"The pace of death has slowed so suddenly that we seem to have lost our ability to recognize it,” noted Christopher Callahan, M.D., of the Indiana University Center for Aging Research (Bloomington, IN, USA) in an editorial that tied the four studies together.


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