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6 MONTROSE VOICE / FEBRUARY 14, 1986
Hospice Comforts the Terminally 111
By Pete Diamond
Montrose Voice Staff Reporter
You matter because you are you. You matter to the last moment of your life, and we
will do all we can not only to help you die
peacefully, but also to live until you die.
—Cicely Saunders,
founder of St.
Christopher's Hospice,
London
Based on a premise of hope, hospices
throughout Europe and the United States
have committed themselves to improving
the quality of life for the terminally ill.
The Casa de Ninos hospice, located on
Old Spanish Trail, south of the Texas
Medical Center, is one of four Houston
area hospices devoted to accomplishing
this goal. Originally opened last October
as a children's hospice, Casa de Ninos
recently decided to expand their services
to include terminally ill adults—including
those who have AIDS.
Barbara Boyette, vice president of Casa
de Ninos, explained that a specialized hospice for children was "a good idea before
its time." The decision to expand existing
services came after administrators reexamined the hospice facility and what it
had to offer, as well as the needs of the
medical community.
Boyett said that after talking with such
individuals as Nate Sebastian of the
KS/AIDS Foundation, it was apparent
that persons with AIDS could benefit from
much of what a hospice has to offer.
The term "hospice" has its origins in the
Middle Ages. During that time, people perceived life as a journey or pilgrimage and
death was considered a natural part of
that journey. Hospices were refuge along
the path of life where people on religious
pilgrimages could stop to rest, and where
the sick and dying, hungry, orphaned and
poor were welcomed.
Hospices today still serve as "refuge,"
but their main focus now is aimed at providing terminally ill patients and their
families with physical, emotional and
spiritual support. The hospice, for many
people, is an appealing alternative to
dying in a nursing home or hospital.
"We can provide support ... the person
facing a terminal condition needs," says
Gretchen Thorp, Casa de Ninos administrator. "We can help them go through the
disease process and go through the feelings their loved ones are also experiencing."
Thorp points out the hospice does not
take a physician's patient from him or his
supervison of that patient. In fact, after
referring a patient to the hospice, the physician will continue his care of the patient.
Physicians are also part of the hospice
structure—the "interdisciplinary team" of
specialists who provide support for
patients and family members.
With hospice patients, the physician's
role changes from that of treating symptoms as a means of cure, to one of medical
supervision and consultation. Hospice
care does not involve the use of "heroic"
measures such as dialysis, respirators or
blood transfusions to prolong a person's
life.
Instead, pain relieving drugs and other
medications are given to make patients
more comfortable. Through such palliative means, the hospice aims to relieve
pain and maintain the quality of the
patient's life without clouding his mind.
Furthermore, patients needn't fear the
return of pain because control is always
one step ahead of the pain.
Physically, the Casa de Ninos hospice is
much different from a hospital or nursing
home. While some hospice programs are
hospital-based, Casa de Ninos is a freestanding inpatient facility. The 60-bed hospice is actually a renovated apartment
complex.
Gretchen Thorp, administrator, and Barbara Boyett, vice president, are key
figures behind the programs at Casa de Ninos. (Pete Diamond photo)
Unlike the often sterile feeling of hospital rooms, the apartments have a "homey"
atmosphere about them. Each of the 40
units are carpeted and furnished with living, dining and bedroom furniture, as well
as kitchen supplies so family members
who choose to stay overnight can make
meals or patients can make their favorite
foods whenever they choose.
"Today's society is not very attuned to
death and dying," Thorp says. "But the
hospice environment can help patients
and their families be more relaxed and
more accepting of death."
Most people who are facing a terminal
illness would rather be in a homelike
environment than a hospital, she adds. In
fact, it has been shown that four out of
every five people would prefer to die in
their home.
Boyett points out that while the hospice
may be the ideal place for a terminally ill
person who has nowhere else to go, it also
can serve as a place where patients and
family members make the transition from
leaving the hospital to moving back home.
In such a case, the interdisciplinary team
will work with the patient and family,
teaching them how to care for the patient,
as well as providing other helpful information and reassurance.
Family members are encouraged to help
care for the patient whether or not he is at
home or in the hospice inpatient facility.
Clinical observations have shown that
family members who are actively involved
in caring for the patient while he is alive
are less likely to feel guilt and self-
criticism after the patient's death.
Family involvement may also help ease
a patient's suffering. This may range from
involving the patient in an interesting
activity to just listening to what he has to
say. It may even be as simple as holding
the person's hand. One hospice patient
wrote to her doctor, "All I want to know is
that there is someone who can hold my
hand when I need it. Death may be routine
to you, but it's new to me."
Home health nurses will also visit a
patient and their primary care giver in the
home to provide nursing care and monitor
the patient's condition. The frequency of
the nurse'B visits are determined by need,
but a contact is generally made weekly. If
an emergency visit or advice is needed,
nurses axe available 24 hours a day, seven
days a week.
Casa de Ninos, like many other hospices, offers respite for families. This short-
term service, which may last from a few
hours to two weeks, allows family
members to take a break in their responsi
bilities for caring for the terminally ill person.
Home health care is desirable for many
terminally ill people because it allows
them to spend the remainder of their lives
at home, in comfortable, familiar surroundings, with family members nearby.
However, if the family does not feel they
are ready to provide fulltime care for the
patient, or if they are uncomfortable with
having him die in the home, Boyett said
the hospice can again serve as a transition
from home when the patient is in the final
stages of dying.
One of the keys of hospice care, according to Boyett, is treating the family in
addition to the patient. Thorp agrees,
adding that acute care too often focuses
only on the individual patient and not the
family.
Both women conceded, however, that
the majority of the people in the medical
profession have been trained to save lives,
and not to give up hope. But there are
times, Thorp says, when it must be realized that nothing more can be doneto save
or prolong a person's life.
And that, she says, is where the hospice
can come in and help improve the quality
of a patient's life. Even after a person's
death, the hospice will continue to serve as
a refuge for the family. Through the hospice bereavement program, family
members may receive spiritual and emotional support for a year or more.
Besides providing these services, hospices such as Casa de Ninos also offer a
number of other benefits, including unrestricted visiting hours and brief visits with
pets. Because Casa de Ninos is licensed by
the Texas Department of Health as a special hospital, Boyett said most insurance
companies will reimburse patients for the
standard semi-private room rate of $135
daily.
"There are a lot of people who are in
acute care hospitals that don't need to be
there," Boyett says. Furthermore, she
adds that the cost of hospice care can be a
substantial savings over that of a hospital
where daily charges may run from $250 a
day to more than $400 for AIDS patients.
Boyett also said the hospice has established a non-profit fund to help terminally
ill individuals who have either lost their
insurance benefits, or do not have insurance, pay for the cost of staying in the
hospice.
"We hope people are beginning to understand the needs of people who have AIDS,
Boyett said. "Education has really had an
impact on this, but a lot more can be done.
And I think we can help."
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