A new study by University of Chicago geriatricians has found that changes are needed to improve the end-of-life care for patients with dementia.
An estimated 500,000 people die every year in the United States suffering from Alzheimer's or related diseases. Many patients receive inadequate pain control and ineffective and invasive therapies such as tube feedings. Many patients also do not receive the benefits of hospice care, according to the study.
"The nature of the illness is the root cause of the problem," said study author Greg Sachs, M.D., professor of medicine at the University of Chicago. "Our health care system is oriented toward treatment of acute illness but dementia produces a long, slow, unpredictable decline."
As reported in the October issue of the Journal of General Internal Medicine, the study focuses on impediments and solutions to adequately caring for dementia patients with chronic and ultimately terminal illness.
The geriatricians explained that the first hurdle to adequate end-of-life care is the unwillingness of physicians and families to think of dementia as a terminal illness, adding that such patients decline slowly, with long periods of stability punctuated by sudden declines and partial recovery.
A second barrier, according to the study, is the inability of physicians to predict the time of death. While Medicare and most insurance plans offer hospice benefits to patients with a life expectancy of six months or less, the average survival for patients with dementia is actually several years and varies enormously.
A third barrier, the geriatricians point out, is the poor fit between dementia and health care 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."
Potential solutions center around education, better prognostic tools and changes in the health care system, the study authors emphasize. Most urgent, they write, is a nationwide effort to align the financial incentives in the system with the provision of palliative care.
Such an allignment would include allowing hospice to accommodate earlier referral of patients with dementia and rewarding nursing homes for providing good end-of-life care rather than for transferring dying patients to a hospital.
