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Jeanne pulls up in front of a seemingly indistinct
gray duplex on a block of tattered homes in San Jose,
Calif. She peers through the screen door and scans the
room, looking for 11-year-old Antonio.
The boy appears to be nowhere in sight, until her
eyes fasten on a motionless lump on the couch. She enters,
and prods Antonio gently. His heavy eyes open briefly.
Jeanne and the boy's relatives smile with nervous relief-and
with good reason.
Each of Antonio's naps could be his last. Doctors
didn't expect the boy to survive through the week, and
Jeanne, a hospice nurse, had been charged with making
his final days as enjoyable as possible.
Antonio Cancilla was a candidate for a third heart
transplant, but he had grown to loathe the life confined
to monitors and white walls. The sixth-grader knew another
heart wouldn't fix his problem and finally confided
in his uncle that he didn't want to go back to the hospital
anymore.
Both were relieved when doctors introduced them to
hospice, a program that would shift the focus from finding
a cure to enjoying Antonio's remaining days. Jeanne
Fabricius [fah-BREE-she-us], RN, a nurse with Hospice
of the Valley in San Jose, was visiting twice a week
to ensure that Antonio wasn't in pain and to check in
with his uncle, who was the primary caregiver.
Like many hospice patients, Antonio and his uncle Anthony
wished they'd known about hospice before the final weeks
of the boy's life. Other patients are driven away by
misconceptions about this form of care. For some, it's
perceived as a dismal failure to conquer a disease.
For others, it's a place people go to die. Yet nurses
such as Fabricius contend that this couldn't be further
from the truth.
Hospice nurses see their mission as helping people
to fully live their final days or months. The nurses
interviewed by NURSEWEEK agreed that when families wait
too long to seek hospice, it not only increases the
acuity of the patient's illness, but also severely limits
the patient's ability to fulfill their final wishes
for connecting with loved ones. As a result, many hospice
administrators are looking to the future with trepidation.
They foresee an aging baby boomer population with increased
acuity levels flooding hospice programs in the midst
of a nursing shortage.
Although nurses like Fabricius are eager to see patients
turn to hospice sooner, they acknowledge that they are
butting against society's deeply engrained denial of
death. Fabricius remembers seeing this denial as soon
as she began nursing in the 1970s. She saw doctors and
families avoid the topic of death at the expense of
the patients.
"I felt people died very lonely because family
and doctors didn't bring it up," she said. "The
patients knew they were dying, but nobody would talk
about it. People think they are protecting the dying
person, but really they are protecting themselves. I
thought there must be a better way to die."
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