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Going Home
By Barry Yeoman, January & February 2005
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A hundred years ago, people typically died at home, of epidemics, infectious
diseases, and injuries. That changed with the 20th century's staggering
medical advances. Doctors grew excited by the prospect of keeping sick patients
alive longer with medication and surgery. Lives indeed grew lengthier—but
in the process death in America was transformed into an institutional and
technological affair. "People were dying in the hospital; they were dying
in circumstances where the process was hidden and painful, and suffering was
justified by the fight to cure whatever was causing the death," says Linda
Emanuel, M.D., Ph.D., director of the Buehler Center on Aging at Northwestern
University. "Denial was so great that patients and families ended up
suffering physically, socially, psychologically, and spiritually."
Choosing a Hospice
First, consider your options in advance so you aren't making decisions
during a stressful time. For information, call 703-837-1500 or go to the National Hospice and
Palliative Care Organization to find a provider. A full list of questions
to ask is available on NHPCO's website, but here are a few:
How many patients are assigned to each hospice staff member?
Does the hospice staff regularly discuss pain and symptom control with
patients and their families?
Are expensive symptom-relief treatments like blood transfusions and radiation
available?
Are all expenses covered by Medicare or private insurance?
How does the hospice program help family members cope with the patient's
death?
It was the U.S. Civil Rights Movement that set the stage for a reexamination
of how we die. As Americans learned to question authority, they began to doubt
the doctor-driven high-tech model. Some looked to London, where in 1967 Dame
Cicely Saunders had set up St. Christopher's Hospice, a residence for the
terminally ill that focused on relieving pain and other symptoms rather than
trying to prolong life. Visitors to St. Christopher's were surprised by
what they found. "Instead of a terminal-care or 'death house'
environment with narcotized, bedridden, depressed patients, I found an active
community of patients, staff, families, and children of staff and
patients," reported one doctor in a 1975 issue of the Journal of the
American Medical Association.
The first U.S. hospice opened in Connecticut about that time, but it
wasn't until recently that the American movement took off. In 1992, U.S.
hospice programs served 246,000 people. Ten years later, the figure had reached
885,000. Today, even though most hospice patients remain in their own homes,
the original principle is the same: a hospice team focuses on "palliative
care," working to make the patient's days as symptom-free as possible.
Nurses dispense medication for pain control. Social workers help patients and
their families prepare for the end of life. Clergy members provide spiritual
counseling. Volunteers fill a variety of niches, from sitting with patients to
helping clean and maintain their property. Some hospices offer massage or music
therapy; nearly all provide bereavement services for relatives. There's
even the possibility of expensive medical procedures—blood transfusions,
chemotherapy, radiation—as long as the purpose is to control pain,
fatigue, or shortness of breath. In Jack's case, care was covered by
private insurance—most policies have a hospice benefit—though the
majority of patients are covered by Medicare, and they never see a bill.
Benefits are portable: they apply to wherever the patient calls home, including
a relative's house or an inpatient facility.
The goal is to allow patients to live fully, even during their final weeks.
"If what matters to you is to go fishing, for heaven's sake, go
fishing and figure out how to take the oxygen tank to the end of the
stream," says Joanne Lynn, M.D., director of the Washington Home Center
for Palliative Care Studies in Washington, D.C. Many hospice patients use the
time to review their lives, mend broken relationships, and find spiritual
peace. "It's trying to undo what Descartes did by separating the mind
and body," says Michael H. Levy, M.D., Ph.D., medical director of the Fox
Chase hospice. "It's not just DNA that's sick; it's the human
being."
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