Many people who are terminally ill delay entering hospice care until just a few days or weeks before they die, in part because they or their families don’t want to admit that there’s no hope for a cure.
“It’s a hard decision to say yes to,” says Jeanne Dennis, senior vice president at the Visiting Nurse Service of New York, which provides hospice care to 900 patients daily. “Everybody knows it means you’re not going to get better.”
A recent study published in the journal Health Affairs found that there may be another reason that patients don’t take advantage of the comprehensive services that hospice provides: Restrictive enrollment policies may discourage patients from signing up.
The survey of nearly 600 hospices nationwide found that 78 percent had enrollment policies that might restrict patient access to care, especially for those with high-cost medical needs. The policies included prohibitions on enrolling patients who are receiving palliative radiation or blood transfusions or who are being fed intravenously.
Medicare pays the majority of hospice bills, and officials have raised concerns in recent years about possible misuse of federal funds. To qualify for hospice care under Medicare, a patient’s doctor and a hospice medical director must certify that the patient has six months or less to live. Patients must also agree not to seek curative care.
Once a patient chooses to enter hospice, the benefits include medical treatment for non-curative purposes such as pain and symptom management as well as emotional and spiritual support for patients and their families. Most patients receive hospice care at home.
The Health Affairs study points out some treatments typically considered curative also may be used to manage the symptoms of a dying patient. For example, someone might receive radiation treatments to shrink a tumor to make breathing easier or be given a blood transfusion to reduce fatigue.
But such care can be expensive, costing upward of $10,000 a month, according to the Health Affairs study. That puts hospices in a financial bind. Last year, the Medicare program paid a base rate of $151 per day to cover all routine hospice services, adjusted for geographic differences.
Large hospices that care for more than 100 patients are better positioned to absorb the cost of such treatments, experts say. But nearly two-thirds of hospices care for 100 or fewer patients per day, according to the National Hospice and Palliative Care Organization.
Hospice of the Bluegrass in Lexington, Ky., cares for more than 900 patients daily. “It gives us the capacity to not be completely money-driven, so we can afford expensive treatments,” says Gretchen Brown, the chief executive.
Still, hospice operators walk a fine line in distinguishing between palliative and curative care. Medicare reviews their work closely, Brown says, and sometimes raises questions when patients are in hospice care longer than six months. “We really can’t pay for something that’s going to cause someone to live longer than six months,” she says.
Worries that Medicare might deny coverage for a certain treatment that is truly palliative rather than curative may contribute to smaller hospices’ more restrictive enrollment policies, the study found.
“The risk is that … they’d have to return the money,” says the study’s lead author, Melissa Aldridge Carlson, an assistant professor of geriatrics at New York’s Mount Sinai School of Medicine.