Real Life Story
What Is Hospice?

When treatment appears futile, many terminally ill patients have chosen to spend their last days at home with the help of a hospice. In 1996, 15 percent of Americans who died were being cared for by one of the nation's 2,800 hospice programs. Ninety percent of hospice care takes place in patients' homes; 77 percent of patients die at home.

The U.S. hospice movement only started 23 years ago. Hospice care is more of a treatment philosophy, used by patients when they no longer desire aggressive care for their disease. Hospices do not focus on reversing disease. They emphasize pain treatment and palliative care through an interdisciplinary team approach composed of nurses, social workers, physicians, dietitians, home health aides and highly trained volunteers. Hospices provide nursing care, medical equipment such as movable beds or walkers, drugs, social services, and physical therapy.

"We're focused on relieving symptoms," says Dr. Cheryl Arnella, medical director for the Hospice of Northern Virginia, one of the oldest programs in the U.S. Her program views the patient and his or her family as a unit that requires psychosocial and spiritual care. Arnella and her staff provide bereavement counseling for family members for a year after a loved one has died, to help not only with grief but the void that's left after someone has spent months caring for a spouse, a child, or a parent.

Enrolling in Hospice

Dingbat Patients can enroll in a hospice program either through a physician referral, through family and friends, or by referring themselves. Hospice care is available to anyone in the final stages of an illness. Nevertheless, nearly 70 percent of hospice patients suffer from terminal cancer and AIDS. Less than a third are at the end stage of heart disease, pulmonary disease, renal disease, or liver disease. Arnella says it would be extremely rare for a hospice to care for a patient on a respirator. "We aren't trying to prolong life. We are trying to help people ease passage."

Most hospices don't have large numbers of patients with chronic disease. One of the reasons is the way insurance pays for hospice care. Because most terminally ill persons are elderly, Medicare covers the largest percentage of hospice care. Medicare kicks in only if physicians can certify, based on their best judgment, that a patient has less than six months to live. Private insurance mimics Medicare policy. Most doctors say prognosticating to this level of specificity is not an easy task, particularly for non-cancer patients.

Cancer patients typically fail on a steady downhill course, losing weight and functional status, making it slightly easier to predict when death will occur. But persons with terminal chronic diseases, such as end-stage heart disease, can fail precipitously, revive, and continue on a relatively steady course until they fail again. Dr. Joanne Lynn, who directs George Washington University's Center to Improve Care of the Dying, says that on the day a patient with heart failure dies, he or she can appear to be as healthy as on any other day.

Reaping the Benefits

Dingbat Hospice providers have been frustrated because so many patients enter the program late in their disease. A quarter of Arnella's patients die within the first week of being admitted; the mean length of stay for patients is less than a month.

A 1996 University of Chicago Medical Center study found that the median length of hospice stay before death for Medicare patients was 36 days; nearly 16 percent died within seven days. Dr. Nicholas Christakis, who coauthored the study, says requiring that "prognosis be an average survival of six months" or "a 50 percent probability of death in three months" might minimize the contributions Medicare makes to late enrollment.

Jay Mahoney, president of the Washington, D.C.-based National Hospice Organization, says the shorter stays concern his members. "It tells us while awareness of hospice care is growing, people do not know when it is most effective to make that referral." Hospices can't be effective, and patients and families can't reap the benefits of their services, if patients are referred with only a week to live, he adds.

Christakis says earlier referrals could save Medicare and other insurers money. According to his study, patients with a large number of hospital days in the month before enrollment in a hospice tended to have shorter survival rates. Christakis says this suggests that earlier referral could have resulted in less costly care since hospices cost, at most, only a fifth of what hospital stays do.

Overcoming Reluctance

Dingbat Arnella says she used to believe physician ignorance about hospice options was to blame for late referrals. Although in some cases that's true, she says, in many cases physicians are reacting to the patient. Many patients resist accessing hospice care because it signals that the end is near. "A lot of times, it is the patient who says they aren't ready yet," says Arnella. "I think there is a reluctance on the part of some physicians to broach the subject directly because they would be destroying hope," she adds.

Health insurance policies are another reason. Most do not recognize the holistic approach to care that hospices offer, particularly in the area of palliative or comfort care. Some managed care plans pay comparably to Medicare's $108 per diem rate. While that's below the $120 daily rate that Northern Virginia says it costs to treat its patients, it is well above what most commercial plans pay. Traditional commercial insurers pay $50 a day to Arnella's program. "We lose a huge amount in caring for these patients," she says. "Most insurers say they offer coverage, but what they cover is not really the full package of hospice care. . . It is getting worse and worse every year because of the pressures of managed care," she says.

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