Hospice Care Evolves as Alzheimer's, Other Ills Raise Demand

Robert Stack of Orange, Virginia, is cared for in his home by his wife, Beverly (left), and a nurse named Ellen Colvin (right).

Video: Signs of Alzheimer's

In Robert and Beverly Stack's red-brick rambler in Orange, Va., the dining room has been transformed into a bedroom. It's furnished with a hospital bed and a dresser lined with medications and other supplies—all provided by Hospice of the Rapidan, a nonprofit agency based in Culpeper, Va., that cares for about 300 patients a year.

Robert, an 81-year-old World War II veteran and retired educator, has Alzheimer's disease. Diagnosed in 2000 and recently bedridden after breaking a hip, he's in declining health, and his daily care has become too demanding for his wife of 54 years to handle. "I can't do it all myself anymore," says 71-year-old Beverly. So with a referral from Robert's physician, she and her family made arrangements for hospice care at home.

Robert Stack is one of more than 1 million patients who began hospice care this year in the United States. Covered under Medicare, Medicaid, and most private insurance plans, hospice care is a swiftly growing healthcare field. About 1.4 million people received new or continuing hospice care last year, more than twice as many as did a decade ago, according to the National Hospice and Palliative Care Organization, the Alexandria, Va.-based industry group.

As demand for hospice care has increased, so have the number of programs nationwide. Today, there are about 4,700 providers, up from about 3,300 five years ago, according to NHPCO. While the majority of providers are nonprofits, the for-profit sector is gathering steam, accounting for 47.1 percent of hospice agencies last year.

Generally speaking, hospice is intended for any person who has a terminal illness and a prognosis of six months or less to live. Depending on the needs of each patient, care can include pain management, medications, medical supplies and equipment, and assistance with the emotional, psychological, and spiritual aspects of dying. A hospice team usually consists of nurses, home health aides, social workers, bereavement counselors, and clergy, as well as a hospice physician and the patient's personal physician.

The benefit for Medicare and Medicaid patients is remarkably magnanimous. Medicare pays out $601 per patient per day for inpatient hospice care (and $789 per day for the typical patient who gets 24-hour home care), yet there are no copays, deductibles, or out-of-pocket expenses for the beneficiary. Private insurer hospice benefits offer a variety of hospice services, though they're typically not as generous, according to the Hospice Association of America. To get Medicare or private insurance to cover hospice care, a patient needs only a physician's referral. Hospice care is usually provided in the patient's home. It can also be made available at a special hospice residence designed with a homelike atmosphere, or in assisted living or skilled nursing facilities.

Until recently, hospice care, which began as a community-based movement back in the 1960s, has been slow to gain a foothold. Perhaps the biggest hurdle, some say, has been doctors' reluctance to recommend it for their dying patients. Hospice care is about caring, not curing, which is often a stumbling block for physicians. "They are focused on healing, and by referring someone to hospice care they feel like something of a failure," says Michelle Hartman, a registered nurse and clinical director of Good Samaritan Hospice of Pittsburgh in Wexford, Pa. Patients and their families, too, can be resistant to the idea. "By accepting hospice, you are accepting that you are dying," says Kathy Clements, a nurse and executive director of Hospice of the Rapidan. "That's tough to think about."

As a result, referrals to hospice tend to come unnecessarily late in the game—though that's starting to change. The average time in hospice is currently just 20 days. "That makes it difficult for us to do our best work," says Hartman. "With four to six months, we can improve end-of-life care dramatically with pain management, music therapy, massage—and help family members deal with grief issues."