Hospice care is used when you can no longer be helped by healing treatment and are expected to live about six months or less if the illness runs its usual course. The hospice philosophy accepts death as the final stage of life. It affirms life and neither quickens or postpones death.
Hospice care treats the person rather than the disease as they work to manage symptoms so that a person’s last days may be spent with dignity and quality, and surrounded by their loved ones. Hospice care is also family-centered. It includes the patient and the family in making decisions.
Most myths contain a bit of truth.
What causes misinformation to continue is an inability to look more closely for
the facts. This is especially true in understanding hospice care. It’s
estimated that nearly half of all Americans die in hospice care each year with
that number increasing annually. Here are ten myths surrounding hospice with
the truths that will expose the lies.
·
MYTH: Hospice
is a place people go to die. FACT:
Some people do receive hospice care at a “place”—one of the growing numbers of
freestanding facilities dedicated to providing inpatient hospice care. But the
great majority of hospice care is received in the place the patient calls
“home”—a private residence, residential facility, or nursing home. Some
patients also receive hospice care while hospitalized. Hospice is not a place.
It’s the word used to describe a philosophy of particular type of care—that
which focuses on keeping a patient as comfortable, free of pain, and clear as
possible rather than attempting to cure an underlying disease.
·
MYTH: Hospice
care is offered only for cancer patients. FACT:
This myth endures because of the history of hospice care. Though the concept of
hospice as treatment for the incurably ill probably dates back to the 11th
century, the modern hospice movement is credited to Cicely Saunders, an English
Anglican doctor and writer. The idea was launched after Saunders fell in love
with a terminal cancer patient, David Tasma. As they grew close, it became
clear to both that a spiritual component to healthcare was essential for many
patients. Tasman left Saunders a sum of money at his death, declaring he would
be “a window in her home.” In 1967, she opened St. Christopher’s Hospice in
London for cancer patients, sparking the modern hospice movement.
Tasma’s “window” is embodied as a plain sheet of glass in
the hospice’s entrance. Saunders’ concept of holistic care was maligned by much
of the medical establishment, but eventually served as the model for the first
hospice care providers in America, which began in the early 1970s.Today, just
over a third of U.S. hospice patients have a diagnosis of cancer. The others
have a range of chronic diseases: dementia, heart and lung disease, and stroke,
or coma is most prevalent.
·
MYTH: Hospice
care is expensive. FACT: By
most people’s lights, all
medical care is expensive. Hospice care is less expensive than conventional end
of life care for a number of reasons. It usually involves fewer medical tests
and procedures and very little technical equipment. Care received at home is
much less costly than hospital care—and there is no charge for the services
that family members, friends, and volunteers help provide.
In addition, hospice patients pay for only the services they
want and require—a freedom of choice often denied other patients. Medicare,
Medicaid or Medi-Cal, and private insurance generally also cover much of the
cost of hospice care. Many hospice providers offer free or provide sliding-scale
charges for those who are challenged by paying.
·
MYTH: Hospice care means giving
up hope. FACT: Signing
on for hospice care often does require a shift in thinking—from attempting to
cure an incurable condition to concentrating on keeping a person as comfortable
and cogent as possible. For many hospice patients, this shift greatly improves
the quality of life, eliminating pointless tests and painful procedures and
allowing time to spend with friends and family.
·
MYTH:
Choosing hospice means giving up
all other care. FACT: Hospice care does not contemplate most procedures and
treatments deemed “life-saving,” such as surgery and chemotherapy. However, one
prime goal of hospice is to provide “patient-centered care” aimed at
holistically improving the quality of remaining life, with pain management and
other regimens tailored to the individual. To that end, some hospice services
may provide treatments traditionally deemed to be curative, including radiation
therapy or antibiotics if they are provided to improve the quality of life.
In
addition, hospice patients can opt at any time to stop care there or pursue conventional
medical treatment; they can resume hospice care by securing a doctor’s
diagnosis that their conditions may cause death within six months.
·
MYTH: Hospice is only for the
elderly. FACT: It’s true that the greatest numbers of hospice patients are older
adults—not surprising as the average life span has increased, along with the
number of people who require sustained care for chronic diseases. A recent
demographic study by the National Hospice and Palliative Care Organization
found that about 2/3 of all hospice patients in the U.S. are 75 and older. However,
a growing percentage of hospice patients are younger—and most hospice programs
also accept children. Several hundred providers now offer children-specific
hospice, palliative or home care services.
·
MYTH: There
are no regulations or agencies to oversee the quality of care hospice provides.
FACT: Since
hospice care is relatively new and still considered “alternative medicine” by
much of the hidebound medical profession, the laws controlling it are still
evolving and sometimes indistinctly written and difficult to interpret. However,
hospice providers must comply with federal regulations to
be approved for reimbursement under Medicare, which currently accounts for
about 93% of the existing hospice agencies. Hospices must also undergo periodic
inspections to ensure they meet regulatory standards to maintain their licenses
to operate and the certification that permits Medicare reimbursement. In
addition, most states have laws governing hospice operations. The Hospice
Patients Alliance maintains a searchable listing
of websites for each state’s hospice
administrative code and regulations.
·
MYTH: Patients must give up
their regular doctors when entering hospice care. FACT: As most people will attest, there
is always room for confusion and misunderstandings when dealing with medical matters.
This chaos may be exacerbated by the anxiousness that often accompanies a
serious illness. Not all doctors will support a patient’s decision to elect
hospice care. However, every hospice organization’s rules state that a
patient’s primary care physician and some other specialists are considered
essential members of the “care team.” It may take some intervention by the
patients or his or her caregivers to make this cooperation work well, but is it
often helpful to quote back the rules requiring it—and the desire to make it so
in the interest of quality care.
·
MYTH: Hospice care shortens
life. FACT: It
may depend on how you define “life.” Those eager to try aggressive new
treatments or experimental drugs that may slow a disease, or believe that
feeding tubes and respirators should be put in place whenever a doctor decrees
they are needed, should get the medical care they feel fits them best. Proponents
of hospice care tend to support the view that a quality life should be lived as
pain-free and as peacefully as possible.
Most shun medical interventions they view as “intrusive” and
prize the peace of a home or homelike setting over the sterility of hospitals
and clinics. A surprising fact: An often-repeated study of patients with terminal cancer found that those who
received less “aggressive” care aimed at comfort and pain relief lived an
average of three months longer than those receiving traditional medical care at
the end of life.
·
MYTH: Hospice care is stressful for
family members and friends. FACT: In our death-avoiding society, many people still shy
away from the realities and inevitabilities of illness and death. Since the
majority of hospice care is provided in the patient’s “place of residence”—a
home, residential facility, or long-term care complex, those living nearby or
helping provide the care often get a more intimate view of sickness and end of
life. For many people—both patients and caregivers—this also provides an
unexpected benefit.
Those confronting death together are more likely to do so
honestly—to have last meaningful talks, to make efforts to get their final
affairs in order for survivors. In addition, hospice providers can provide
valuable training in practical aspects of caregiving such as administering
medications, changing dressings, and operating medical equipment. Those who
want it can also get spiritual or emotional counseling and support. And
importantly, most hospice providers offer respite services, providing breaks
for the regular caregivers—either directly in the residence or in a separate
facility.
“Hospice
is … Helping Others Simply Pass Into Calm Eternity.” (Anonymous)[i]
[i] Sources used:
·
“10 Myths about Hospice Care” by Barbara Kate
Repa
·
“General
Information” by Joe Joe Bear Foundation
·
“How Hospice Works: Everything You Need to Know” by Crossroads
Hospice & Palliative Care
· What is Hospice Care?” by
Center for Hospice Care
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