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."
As demand for hospice care surges, Medicare has upped its scrutiny of the program's cost and quality. For the first time since Medicare began paying for hospice care 25 years ago, the Centers for Medicare and Medicaid Services, the federal health agency that administers Medicare, has new rules for providers. The new regulations, which ratchet up quality-of-care standards, go into effect in December. Hospice providers will be required to provide a closer accounting of the care they offer and show the agency they are improving in areas where they have been lacking. The rules also assure hospice patients a say in their treatment plans and the option to choose their own attending physician.
That's good news for patients. "It's a significant improvement and will bring better day-to-day management," says J. Donald Schumacher, NHPCO president and CEO. "The new regulations [ensure] a framework that will reduce disparities in care and ultimately help consumers pick a hospice provider." Initially, quality-of-care data will be available only to each hospice organization and Medicare, but eventually data are expected to be shared with the public, as the federal government has done with such data for nursing homes and hospitals and home health organizations.
But not all the changes are positive. In October, the agency that oversees Medicare also cut the average reimbursement hospices receive by more than 4 percent nationwide. The goal: to trim hospice expenditures by $2.2 billion over five years. Last year, Medicare spent about $10 billion on hospice care, up from nearly $3 billion in 2000.
Those cuts have hospice operators fuming. "I understand the need for Medicare to look seriously at total healthcare expenditures, and I understand the need to manage costs, but these cuts, if fully implemented, will mean that hospices will be forced to scale back care at the bedside or even shut their doors altogether," Schumacher says. Hospice executives argue that although the price tag for the benefit seems high, it pays for itself. In a study published last year in Social Science and Medicine, Duke University researchers found that hospice reduced Medicare costs by an average of $2,309 per hospice patient.
If Schumacher is right, the cuts are discouraging news for the mounting numbers of patients seeking hospice care. As aging baby boomers face end-of-life situations for themselves and their parents, the number of patients is likely to continue to increase. Four out of 5 patients are 65 or older, and more than one third of all hospice patients are 85 or older, according to NHPCO data.
Cancer patients have traditionally been the primary group entering hospice care, followed by those in the final stages of heart disease. Yet demand is increasingly coming from dementia patients, including those with Alzheimer's disease, who now account for 10.1 percent of hospice admissions nationwide, up from 5.5 percent in 2000.
The pressing hospice need for Alzheimer's patients like Robert Stack is due in large measure to the care-intensive later stages of the disease. Patients are often bedridden and unable to communicate or care for themselves. Nursing homes are often ill prepared to handle these patients, who may require multiple medications to ease pain, anxiety, agitation, and sleeplessness. Moreover, the patients can become aggressive if medication is not closely monitored and specially trained care taken in handling routine procedures such as bathing and feeding. As a result, a growing number of patients are turned away from nursing home facilities or removed from their existing one. With no place else to turn, frequently they wind up back under home care or in a hospice facility.
To handle the volume of patients with end-stage Alzheimer's and related conditions, some hospices have developed specialized programs for people with dementia. Hospice of the Valley, a Phoenix nonprofit founded in 1977, is one of the nation's oldest and largest hospices, and it initiated a special dementia program in 2003. The program's director, Maribeth Gallagher, says its core curriculum focuses on educating both professional caregivers, such as nurses and physicians, and spouses, friends, and volunteers on how to maximize a dementia patient's comfort and quality of life. The hospice currently serves 639 patients with a primary diagnosis of dementia, nearly three times the number of dementia patients it had when the program began.
Unfortunately, Gallagher says, too few hospices have specialized dementia programs, and too few dementia patients are referred to hospice in the first place. One reason is that the vagaries of the disease make it difficult to predict when death is near. Moreover, physicians, families, and caregivers often do not view Alzheimer's disease as a terminal illness because patients with the disease typically live for eight or nine years before dying of, say, an acute infection.
Beverly Stack, too, has trouble thinking of her husband's illness as terminal, but she is grateful that, at the doctor's urging, she made the call to the Hospice of Rapidan. "The nurses are giving me a lot of support," she says. "And that's what I need right now. They're here for him...and for me."