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University of Chicago Medical Center
Underuse of Hospice Care Hurts Patients, Wastes Money
Hospice care, considered the most humane, most dignified and least expensive way to care for many dying patients, is woefully underused in this country. The result is needless suffering and a waste of money.
Even though the use and awareness of hospice care has rapidly increased since the movement started in the 1960s, thirty years later most patients who enroll in hospice programs, especially those with cancer, arrive too late in the course of their illness to make the most of this type of care.
This finding, based on medical records for 6,451 hospice patients, is reported by researchers from the University of Chicago and the University of Pennsylvania in a "Special Article" in the July 18 issue of the New England Journal of Medicine.
The researchers used Medicare records to examine the timing of enrollment in hospice programs. While most physicians and hospice staff maintain that the optimal time for dying patients to spend in a hospice program is around three months, the researchers found that the median survival for patients entering a hospice program was only 36 days. More than one out of seven (15.6%) died within a week and more than one out of four (28.5%) within two weeks.
"This means the decision makers -- physicians, patients, families and payers -- may be doing something wrong," says Nicholas Christakis, M.D., Ph.D., M.P.H., assistant professor in the departments of medicine and sociology at the University of Chicago and lead author of the study. "We're not making the best use of the most compassionate and cost-effective system."
"This is primarily an issue of dying with comfort and dignity, but it also involves an injudicious use of health care dollars" said co-author José Escarce, M.D., A.M., from the department of medicine and the Leonard Davis Institute for Health Economics at the University of Pennsylvania.
Too-short stays can lessen the effectiveness of hospice care, leaving little time for caregivers to learn about the patient's or family's medical or personal needs and to arrange optimal care.
Short hospice stays may also indicate that patients received costly and unnecessarily aggressive care for an unduly long period before shifting to hospice care, say the authors.
In the 30 days before hospice enrollment nearly three quarters of the patients studied had spent some time in a hospital, averaging a little over ten days. One out of four patients (26.3%) spent the entire month before enrolling in hospice in the hospital.
The greater the time spent in the hospital during the month prior to beginning hospice care, the shorter the survival after enrolling. Those who spent the entire previous month in a hospital survived only 26 days after hospice enrollment. Those who were out of the hospital had a median survival of 43 days.
Since 27 percent of the Medicare budget is spent on patients in the last year of life and half of that pays for care during the last 60 days, "anything we can do to help physicians recognize when a hospice is a better choice than a hospital and persuade patients and families to take advantage of that option is going to improve end-of-life care and save a great deal of money besides," said Christakis.
Only 25 percent of terminally ill cancer patients covered by Medicare use the hospice benefit and fewer than 10 percent of those with other fatal diseases.
The authors list several causes for the delays.
First, for many disorders it can be difficult to predict when death is likely. In this study, median survivals varied substantially according to diagnosis. For patients with kidney failure -- most of whom had elected to stop dialysis -- it was 17 days. Patients suffering from cancer (80% of the sample) tended to die around a month after enrolling in hospice care -- quicker for leukemia, slower for breast or prostate cancer. Patients with chronic obstructive pulmonary disease or dementia lived longest, with median survival around 75 days. "We need better information about prognosis in terminal illness in order to make better use of hospice," said Christakis.
Second, current Medicare regulations may discourage timely referrals. To receive hospice benefits, patients must first be declared terminally ill, defined as a life expectancy of six months or less. This can be difficult for physicians to do and patients to accept.
Third, and perhaps most important, physicians, patients and families can all be hesitant to shift the goal of care from cure to comfort. "It's hard for either doctors or patients to throw in the towel," said Escarce, adding that "doctors are hesitant more often than patients."
The authors were encouraged about the opportunity for improvement, however, by their finding that some types of hospices do better than others. The larger and for-profit hospices tended to have longer stays and better survival profiles -- perhaps because they were somewhat more aggressive about making their presence known and their services available to patients and physicians.
The researchers were less concerned about hospice stays longer than three months. Fifteen percent of the patients they followed lived more than six months after enrolling in a hospice; eight percent survived more than a year and four percent more than three years.
Many of the patients with extended survival times suffered from severe dementia, making them difficult to care for at home without help. For these patients, suggested Escarce, hospice care provided a "reasonable way of keeping them at home, out of the hospital and out of the nursing home. It's one way of avoiding aggressive care, but still providing support and assistance for the family caregivers."
Hospice care provides comfort and support to patients and their families in the final stages of a terminal illness. More than 300,000 terminally ill patients chose hospice care in 1994, twice as many as in 1985. That number continues to increase 10 to 20 percent a year. Medicare beneficiaries make up approximately 80 percent of all patients receiving hospice care.
More than 80 percent of hospice patients receive end-of-life care in their homes, where studies have demonstrated that comfort and pain relief can be optimized, patient satisfaction increases and costs decrease.
This study was sponsored by the United States Agency for Health Care Policy and Research and by the Soros Foundation Project on Death in America.
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