For Hospice, A Higher Authority

Falls Church resident Linda Neighborgall, here with her father, Vincent Shedlock, says hospice allowed her mother "to be in friendly surroundings" before her death.
Falls Church resident Linda Neighborgall, here with her father, Vincent Shedlock, says hospice allowed her mother "to be in friendly surroundings" before her death. (Photo: Michael Temchine/Post)
By Alicia Ault
Special to The Washington Post
Tuesday, July 1, 2008

Twenty-five years after Medicare began paying for hospice care, the federal health program has issued a new rule calling hospice providers to closer account on the quality of care they offer. The rule, which will take effect in December, guarantees hospice patients a say in their treatment plans and requires hospice providers to show they are improving in areas where they have been found deficient.

The move comes at a time when hospice care is growing exponentially but is still vastly underused and under-appreciated, hospice providers and advocates say. About 1.3 million people received hospice services in 2006, more than twice as many as did a decade earlier.

What was once a grass-roots, community-based movement in the late 1960s has become a booming health-care business.

For-profit hospices, which accounted for half of hospices in 2005, realized annual profits of about 12 percent from 2001 to 2005, according to the Medicare Payment Advisory Commission. How profitability affects quality of care hasn't been determined. There were 4,500 hospice providers in 2006, up from about 3,100 in 2000, according to the National Hospice and Palliative Care Organization, an industry group based in Alexandria. Last year, Medicare spent about $10 billion on hospice care, up from about $3 billion in 2000.

Many in the field say they find it surprising that hospice care isn't more widely used, given the generosity of the Medicare benefit: There are no co-pays, deductibles or out-of-pocket costs for beneficiaries who use hospice. Malene Davis, president and chief executive of Capital Hospice, based in Falls Church, blames widespread misperceptions (the idea, for instance, that hospice is only for cancer patients, or that once someone is in, he can't leave) for holding down the rate of use.

Not all of the 1.3 million people who received hospice services in 2006 died within the next six months, although a life expectancy of six months or less is often a condition for treatment. Some lived into the following year, and about 220,000 were discharged. Predicting the time of death, though, is a notoriously inexact science.

Linda Neighborgall of Falls Church is an enthusiastic supporter, after using hospice for her mother and mother-in-law, both of whom died from cancer. In her mother's case, hospice made it possible for her father to be a primary caregiver, and for her mother's death, last December, to occur at home.

"She was able to be in friendly surroundings," and "it was peaceful," said Neighborgall, a retired lawyer.

Hospice, she said, provided support for the extended family, confidence that they could manage her mother's death at home, and, near the end, crucial and timely pain management assistance.

"If there really are angels on Earth, I know where they work: They work at hospice," Neighborgall said.

Some devils may work there, too. In 1995 government investigators issued a "fraud alert" on hospice after they found false claims from providers who improperly diagnosed patients as terminally ill or billed for undelivered care. There's still no central repository of complaints data. "We hear terrible stories about even the most reputable hospices," says Naomi Naierman, president and chief executive of the American Hospice Foundation, a nonprofit consumer advocacy group based in Washington.

Anyone can seek out hospice, but a physician must approve the referral before Medicare or private insurers will pay for the program. Hospice care can be provided at home, at the hospital or at a nursing home -- wherever the patient or family desires. It offers the terminally ill spiritual and bereavement counseling, pain management and peace of mind that they won't be a burden, said Naierman.

About one in three deaths occur under hospice care, though that figure varies by location. In Washington, for example, only about 8 percent of deaths occur under hospice, while in Virginia, the figure is about 50 to 60 percent, Davis said.

Measuring Quality

The new Medicare rule may not suddenly increase acceptance of hospice, but it will start reducing variations in how care is delivered, and eventually it will help consumers choose high-quality hospice providers, Davis said.

The increased emphasis on patient rights mirrors a trend among hospice providers, said Judi Lund Person, vice president for regulatory and state leadership at the NHPCO, representing 3,000 hospice organizations and 20,000 individual physicians, nurses, social workers and other providers.

Beginning Dec. 2, hospice organizations will also have to implement a quality assessment and improvement system. Hospices will have to show the Centers for Medicare and Medicaid Services, the agency that administers Medicare, that they are trying to improve in problem areas.

Initially, quality data will be available only to each hospice organization and Medicare. Eventually, providers and advocates expect, data will be shared with the public, as the federal government has done with information on nursing homes, hospitals and home health agencies.

Hospice providers are happy with the new rule, Lund Person said. NHPCO members have already been tracking performance voluntarily through its Quality Partners program, she said. Most hospices also use family surveys to measure how well they have handled a case.

The American Hospice Foundation has created a "report card" to help consumers select high-quality hospice providers. The rating system, which the foundation hopes to pilot soon, measures quality in areas such as pain and symptom management, communications, emotional and spiritual support, coordination of care and following a patient's end-of-life instructions.

NHPCO has been following that effort but believes that the measures aren't standardized enough to go public with a report card yet, Lund Person said.

Until there are more public data, "there is no way of choosing at this point or differentiating among hospices," Naierman said. That's problematic, she added, because often, "once you make a decision to go into hospice, there's really no recourse; it's a fairly final decision."

Alicia Ault is a Washington area freelance writer.

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