end of life care dementia
Major overhaul needed in end-of life care for patients with dementia15
Three University of Chicago geriatricians are 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,
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
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
"All the barriers and problems seem to converge," he adds, in
end-of-life care for patients with dementia.
The Chicago geriatricians
list the barriers to optimal care for such patients and suggest ways to get past
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."
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.
prognostic tools for patients with dementia and increased access to hospice care
are needed. Improved quality-assessment tools and regulatory guidelines that
promote comfort care when appropriate could encourage better care for patients
with dementia in nursing homes.
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.
With funding from
the Robert Wood Johnson Foundation, the authors have developed an innovative
program entitled Palliative Excellence in Alzheimer Care Efforts (PEACE) that
successfully demonstrated how improved symptom management, greater hospice
referral, and facilitating death at home rather than the hospital can be
achieved for people with dementia.
The problem "requires fundamental
action at the level of health systems, economics and public policy," concludes
The Robert Wood Johnson Foundation supported this work through
its PEACE program. The Rothschild Foundation also supported the research.
Additional authors were Joseph Shega and Deon Cox-Hayley of the University of
Chicago. The three other end-of-life papers in JGIM looked at prognostic tools,
use of feeding tubes, and assessment of medical futility.
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