Major overhaul needed in end-of life care for patients with dementia

Three University of Chicago geriatricians just published a study in the Journal of General Internal Medicine calling 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 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.

“The nature of the illness is the root cause of the problem,” said Greg Sachs, M.D., professor of medicine, section chief of geriatrics at the University of Chicago and first author of the study. “Our health care system is oriented toward treatment of acute illness but dementia produces a long, slow, unpredictable decline.”

Their study is one of four in the October, 2004 issue of the Journal of General Internal Medicine that focus on the expanding role of primary care physicians in the care of patients with chronic and ultimately terminal illness – a growing, difficult problem for physicians and for society. Death used to come quickly, but now it “fades in slowly — over years or even decades,” notes Christopher Callahan, M.D., of the Indiana University Center for Aging Research, in an editorial that ties together the four papers. The pace of death, he adds, “has slowed so suddenly that we seem to have lost our ability to recognize it.” As a result, “we find ourselves poorly trained, our systems poorly designed, and our patients and communities poorly equipped.”

The Chicago geriatricians list the barriers to optimal care for such patients and suggest ways to get past them. The first hurdle is the unwillingness of physicians and families to think of dementia as a terminal illness. Patients with dementia decline slowly, with long periods of stability punctuated by sudden declines and partial recovery. The proximate cause of death is usually a complication of the dementia, such as pneumonia or other infection, often triggered by the decreased mobility that comes with advanced dementia.

A second barrier is the inability of physicians to predict the time of death. Medicare and most insurance plans offer hospice benefits only to patients with a life expectancy of six months or less, but the median survival for patients with dementia is several years and varies enormously. Patient assessment becomes even more difficult as the dementia advances and the patient can no longer describe his or her symptoms or notify caregivers of discomfort. A third barrier 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.”

The solutions involve education, better prognostic tools, and changes in the health care system. Geriatrics, dementia, and palliative and end-of-life care are all under-represented in medical school curricula and deserve more attention as the numbers of elderly continue to increase. Physicians also need to educate the public, to create a baseline of awareness before families have to face these issues directly and make difficult decisions about a loved one. Perhaps most urgent, however, is a nationwide effort to “align the financial incentives in the system with the provision of palliative care.” The authors suggest relaxing the criteria for hospice to accommodate earlier referral of patients with dementia. Nursing homes should be financially rewarded for providing good end-of-life care rather than for transferring dying patients to a hospital.

Finally, caregivers need to shift away from the reigning concept of a sudden, and usually quite late, switch from curative to palliative care. Instead, they should develop new models based on a gradually changing blend of curative, restorative and palliative care services as patients decline and goals are adjusted.