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Going Home
By Barry Yeoman, January & February 2005
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Jack Smith was lucky, both to get into a hospice program and to reap its
benefits for a full month. For all of the hospice movement's growth, it
still reaches only one in four dying Americans, and in many places considerably
fewer. A terminally ill patient in Portland, Maine, for example, is less than
one tenth as likely to use hospice as someone in Fort Lauderdale, Florida.
There are many reasons for these variations. Florida has a state licensing
process that encourages large hospice organizations with the resources to
advertise, do community outreach, and build relationships with doctors and
hospitals. Maine has no similar process.
Ironically, when it comes to access, big cities aren't always the best.
New York, for example, has some of the lowest hospice rates in the country.
"It has something to do with a very academic and highly advanced
health-care system," says Carolyn Cassin, director of Jacob Perlow Hospice
at New York's Beth Israel Medical Center. "There's more health
care here than anyone can consume." Big-city doctors are so enamored of
the medical razzle-dazzle available to them that they often don't refer
patients to hospice. "In 2002, 12.8 percent of patients who died of
terminal illnesses in New York were assessed suitable for hospice," Cassin
says. "Shameful! It should be up in the 60 percent range."
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Even for those who make it into hospice, there's a trend toward shorter
enrollments. In 1992, 21 percent of all hospice patients died within one week
of admission; a decade later, the figure had climbed to 35 percent. "One
of the saddest things is when we have a patient who could have benefited from
the hospice program for several months—but by the time the doctor makes
the referral, they only live three or four days," says psychologist Dana
Cable, Ph.D., board president of Maryland's Hospice of Frederick County.
"That's not enough time to get them into pain control and to work with
the family to help them cope with death."
Why are so many people steering clear of hospice or waiting until their
final days? Like Peggy Smith, many relatives equate hospice with "giving
up." Or like Danielle Carpenter, they don't want to forfeit that one
last shot. But patient and family attitudes are only a small part of the
problem: there's a whole set of barriers, from physician training to
federal-funding formulas, that combine to depress the level of hospice use in
the United States.
Leading the list of obstacles are doctors themselves. They control a medical
system that is focused on curing disease, not comforting the ailing.
Today's physicians control medical school curricula, so tomorrow's
doctors receive little or no training in end-of-life care. "Only when the
patient is days before dying does anyone think, oh, maybe we should call
hospice," says Betty Ferrell, Ph.D., a research scientist at the City of
Hope National Medical Center in Los Angeles. "Physicians need to learn how
to say, 'You know, your mother has had a rough last few months. I, like
you, am hopeful. However, I'd like us to consider what her care might be if
she continues on this course.' "
While many medical schools have started teaching palliative care, many
experts agree they still have a long way to go. Even after a doctor graduates,
the opportunities to learn about end-of-life care remain sparse. Says Fox
Chase's Levy: "Most doctors aren't trained in how to sit down with
a patient and talk about the difficult realities of what science has to
offer."
Physicians, of course, are human. Telling patients that they're dying is
a gut-wrenching process, and many doctors will postpone the conversation as
long as possible. So even those doctors who are well-trained find themselves
faltering. "Some patients become these sequoias, the pillars of our
clinical practice," says Christopher Daugherty, M.D., a clinical
oncologist and medical ethicist at the University of Chicago. "You become
more hesitant with those patients to disclose bad news. It happened to me
yesterday: one of my patients with advanced leukemia was visiting the hospital,
and I knew that I needed to see her. There was a perfect opportunity to say,
'There is no more therapy I can give you.' But I didn't have the
guts and fortitude. Who wants to give bad news?"
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