Medicare's fastest-growing benefit is end-of-life care
By LEE BOWMAN
Scripps Howard News Service
Hospice care is evolving into a Medicare behemoth with close to $2 billion spent annually to provide end-of-life care once considered part of medical counterculture.
With more than 2,000 Medicare-certified hospices, 20 percent of them run by for-profit corporations, hospice has become Medicare's fastest-growing benefit. The program funds 80 percent of all hospice care in the country.
All of the coverage is set up along the same lines: A hospice program gets paid a set amount to care for each patient, depending upon whether the patient is at home, in the hospital, or in a nursing home. The package includes medicines, medical equipment and supplies as well as nursing care, spiritual counseling and family support.
But what Medicare requires before a person gains access to the package is just too much to ask of people, critics argue.
Both the patient's own doctor and the hospice medical director must certify that the patient is likely to die within six months, and the patient (or a surrogate) must agree in writing to forgo any treatment aimed at curing what is expected to kill him.
Dr. Joanne Lynn, director of The Center to Improve the Care of the Dying at George Washington University, says the hospice program was set up mainly with cancer patients in mind, since doctors could be fairly certain about the prognosis.
"A quarter-century ago, the terminally ill were thought to be as different from the rest of us as men from women," said Lynn, also president of Americans for Better Care of the Dying. "Things have gotten a lot more ambiguous. Most people are living with the disease they'll probably die from, but how long depends on treatment and a lot of other uncertainties."
The situation has left hospice doctors open to second-guessing as federal officials hold them more accountable for their predictions of death - including threats of criminal penalties and attempts to recoup some $100 million in payments.
"Hospices, to protect themselves, have backed away from serving people with less certain outlooks," said Dr. Ira Byock, head of The Palliative Care Service in Missoula, Mont. "We're at the point where it's easier to qualify for assisted suicide in Oregon than it is to get Medicare hospice if you've got emphysema."
Thomas Hoyer helped set up Medicare's relationship with hospice and now heads the office that oversees it. He says the agency has repeatedly reassured doctors that Medicare is not going to judge them on how long patients actually live, but only on whether their prognosis was reasonable given what was known about the patient's condition at the time.
"There should be no chilling effect," Hoyer said.
Equally troubling to many caregivers is the requirement that patients agree to forgo attempts at cures in exchange for hospice comfort.
"People want to explore end-of-life issues," said David Kessler, a Los Angeles counselor, author and founder of two hospices. "But sometimes they're just not ready to commit to hospice, and the system doesn't allow that ambiguity."
Hospice care also is ruled out for many because Medicare insists that it mainly be delivered at home and relies heavily on family and friends to feed, bathe, toilet and medicate them round-the-clock, supported by visiting professionals.
"The problem always comes up when someone is too sick to get to the toilet," said David Callan, a clinical social worker in Cincinnati. "Suddenly, they need 24-hour care. If you don't have anyone at home to do that and can't afford to have someone come in, you are forced into a long-term care facility or forced to spend down your assets to the last $2,000 so you can get Medicaid."
Until recently no one has looked at how well Medicare-supported hospice actually performs in terms of patient and family satisfaction, or what should be done for the million Medicare recipients who die each year outside the hospice system.
Late in 1996, Medicare adopted a new tracking code that for the first time allows hospitals to indicate they're giving care not intended to cure a particular ailment, but simply to make the patient comfortable near the end of her days.
"Based on this first look, it doesn't appear that providing these services affects payment," Hoyer said. "But the real value is that this code tells physicians and other caregivers that this kind of care is appropriate as far as Medicare is concerned."
Lynn argues that more than a code change is needed for Medicare to ensure hospice-like services in the hospital and other settings. She wants to set up a series of "Medicaring" demonstrations in which hospitals would offer coordinated, hospice-type care along with regular treatment to all patients diagnosed with a few high-risk, but not always immediately fatal, diseases.
But Medicare officials, while not ruling out experiments, are busy setting up a new network of managed care options and making other program changes and are unlikely to take on any big new experiments unless ordered to do so by Congress.
Hoyer said the issue isn't how services for the dying are funded or packaged.
"The real key for appropriate end-of-life services is giving the patient clear and accurate information about the care he or she is receiving and learning their views about their preferences and attempting to carry them out appropriately."
Lee Bowman is a reporter for Scripps Howard News Service in Washington.