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.