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Going Home
By Barry Yeoman, January & February 2005
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Even if these human impediments were suddenly overcome, the federal
government has created a system with yet more obstacles. The first is cost. The
Medicare hospice benefit, which covers the vast majority of patients, was
passed during the Reagan administration, which emphasized cuts in domestic
programs. Reagan budget director David Stockman agreed to support the hospice
benefit—on the condition that strict limits were placed on
reimbursement.
Today, Medicare typically reimburses programs at a flat daily rate of about
$125 per patient for routine home care rather than covering all costs.
That's fine for those who need only periodic nurse visits and inexpensive
medicine. But what about someone who requires a blood transfusion to combat
fatigue? Or needs intravenous morphine for pain relief? What about a patient
who lives alone and needs intensive nursing? Those services cost more than $125
a day. Some large programs can absorb the added cost, but others need to turn
away pricier applicants. The $125 limit particularly frustrates rural hospices,
which have staggering transportation costs, and small hospices, which don't
benefit from economies of scale. "If you don't have enough patients,
you don't receive enough federal money to run the office and hire the
staff," says Levy.
Even more of an obstacle is Medicare's requirement that hospice patients
have six months or less to live. If a patient outlives the diagnosis, hospice
funding continues. But if too many patients outlive their diagnoses, doctors
worry they'll be busted for Medicare fraud. In the mid-1990s, the feds
began studying medical records in Puerto Rico, where patients were tending to
live beyond the six-month limit. The investigation spread to the U.S. mainland,
and even though it didn't result in widespread prosecutions, it left a
chilling effect on other physicians. As a result, to play it safe, doctors
often wait until a patient is right at death's edge before making a hospice
referral.
"The federal government has drawn a line in the sand," says Cassin
of Beth Israel. "I can't take the patient who's dying of
Alzheimer's, who is lying in a nursing home, and the family is desperate
for hospice. I can't sign her up till she's almost
comatose—because until then, I can't say she'll die within six
months."
Perhaps the most difficult aspect of Medicare funding is that, by law,
patients must give up all curative treatments in order to claim the hospice
benefit. "The government will pay for you to live as long as you can, or
to die as comfortably as you can, but not both," says David Barnard,
Ph.D., an ethicist and palliative-care specialist at the University of
Pittsburgh School of Medicine. "That's a ridiculous bureaucratic
distinction that makes no sense in the real world. Everybody who has a
life-threatening illness wants both to live as long as they can and to die as
comfortably as they can."
This is a terrible choice. Advocates say that lifting Medicare's
either/or restriction would dramatically increase hospice access. Patients
wouldn't feel forced to choose between accepting death and pursuing life.
Doctors, too, would be more willing to refer patients to hospice, because they
wouldn't have to give up conventional therapies at the same time. Although
the jury's still out on cost, such a system might actually save money,
because patients would feel better equipped earlier on to phase out expensive
and futile treatments. More people would have access to the attentive care that
Jack Smith had as he approached the last few days of his life.
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