Frequently
Asked Questions Please
click on the questions for anwers.
When should a decision
about entering a hospice program be made and who should make it?
At any time during a
life-limiting illness, it is appropriate to discuss all of a patient's
care options including hospice. By law, the decision belongs to the
patient. Understandably, most people are uncomfortable with the idea of
stopping an all-out effort to "beat" their disease. Hospice staff
members are highly sensitive to these concerns and are always available
to discuss them with the patient, family, and physician.
Should I wait for our
physician to raise the possibility of hospice or should I raise it
first?
The patient and family
should feel free to discuss hospice care at any time with their
physician, other healthcare professionals, clergy or friends.
What if our physician
doesn't know about hospice?
Most physicians know
about hospice. If your physician wants more information, it is
available from the American Academy of Hospice and Palliative Medicine,
medical societies, state hospice organizations, local hospices, or the
National Hospice and Palliative Care Organization helpline
1-800-658-8898. In addition, physicians and all others can also obtain
information on hospice from the American Cancer Society, the American
Association of Retired Persons, and the Social Security Administration.
Can a hospice patient
who shows signs of recovery be returned to regular medical treatment?
Certainly, if
improvement in the condition occurs and the disease seems to be in
remission, the patient can be discharged from hospice and return to
aggressive therapy or go on about his or her daily life. If a
discharged patient should later need to return to hospice care, Medicare
and most private insurance will allow additional coverage for this
purpose.
What does the hospice
admission process involve?
One of the first things
hospice will do is contact the patient's physician to make sure he or
she agrees that the hospice care is appropriate for this patient at
this time. (Hospices may have medical staff available to help patients
who have no physician.) The patient will also be asked to sign consent
and insurance forms. These are similar to the forms patients sign when
they enter a hospital. The so-called "hospice election form" says that
the patient understands that the care is palliative (that is, aimed at
pain relief and symptom control) rather than curative. It also outlines
the services available. The form Medicare patients sign also tells how
electing the Medicare hospice benefit affects other Medicare coverage
for a life-limiting illness.
Is there any special
equipment or changes I have to make in my home before hospice care
begins?
Your hospice provider
will assess you needs, recommend any necessary equipment, and help make
arrangements to obtain it. Often the need for equipment is minimal at
first and increases as the disease progresses. In general, hospice will
assist in any way it can to make home care as convenient and safe as
possible.
How many family
members or friends does it take to care for a patient at home?
There's no set number.
One of the first things a hospice team will do is prepare an
individualized care plan that will, among other things, address the
amount of care-giving a patient needs. Hospice staff will visit regularly
and are always accessible to answer questions and provide support.
Must someone be with
the patient at all times?
In the early weeks of
care, it is usually not necessary for someone to be with the patient
all the time. Later, however, since one of the most common fears of
patients is the fear of dying alone, hospice generally encourages
someone be there continuously. While family and friends must be relied
on to give most of the care, hospices do provide volunteers to assist
with errands and to provide a break and time away for major caregivers.
How difficult is
caring for a dying loved one at home?
It's never easy and
sometimes can be quite hard. At the end of a long, progressive illness,
nights especially can be very long, lonely and scary. So, hospices have
staff available around the clock to consult with the family and to make
night visits as appropriate.
What specific
assistance does hospice provide home-based patients?
Hospice patients are
cared for by a team of doctors, nurses, social workers, counselors,
home health aides, spiritual caregivers, therapists, and volunteers -
and each provides assistance based on his or her area of expertise. In
addition, hospices help provide medications, supplies, equipment,
hospital services, and additional helpers in the home, as appropriate.
Does hospice do
anything to make death come sooner?
Hospices do nothing
either to speed up or to slow down the dying process. Just as doctors
and midwives lend support and expertise during the time of child birth,
so hospice provides its presence and specialized knowledge during the
dying process.
Is the home the only
place hospice care can be delivered?
No. Although hospice
services are delivered in a personal residence, some patients are cared
for in nursing homes or hospice centers.
How does hospice
"manage pain"?
Hospice nurses and
doctors are up-to-date on the latest medications and devices for pain
and symptom relief. In addition, physical and occupational therapists
assist patients to be as mobile and self sufficient as possible, and
they are often joined by specialists schooled in music therapy, art
therapy, diet counseling, and other therapies. hospice believes that
emotional and spiritual pain are just as real and in need of attention
as physical pain, so it addresses these as well. Counselors, including
spiritual caregivers, are available to assist family members as well as
patients.
What is hospice's
success rate in battling pain?
Very high. Using some
combination of medications, counseling and therapies, most patients can
attain a level of comfort that is acceptable to them.
Will medications
prevent the patient from being able to talk or know what is happening?
Usually not. It is the
goal of hospice to help patients be as comfortable and alert as they
desire. By constantly consulting with the patient, hospices have been
very successful in reaching this goal.
Is hospice affiliated
with any religious organization?
Hospice care is not an
off-shoot of any religion. While some religious organizations have
started hospices (sometimes in connection with their hospitals), these
hospices serve a broad community and do not require patients to adhere
to any particular set of beliefs.
Is hospice covered by
insurance?
Hospice coverage is
widely available. It is provided by Medicare nationwide, by Medicaid in
some 47 states, and by most private health insurance policies. To be
sure of coverage, families should, of course, check with their employer
or health insurance provider.
If the patient is not
covered by Medicare or any other health insurance, will hospice still
provide care?
The first thing hospice
will do is assist families in finding out whether the patient is
eligible for any coverage they may not be aware of. Barring this, most
hospices will provide care for those who cannot pay, using money raised
from the community or from memorial or foundation gift.
Does hospice provide
any help to the family after the patient dies?
Hospice provides
continuing contact and support for family and friends for at least one
year following the death of a loved one. Most hospices also provide
supportive services for anyone in the community who has experienced the
death of a family member, a friend, or a loved one.
If the patient is
eligible for Medicare, will there be any additional expenses to paid?
Medicare covers all
services and supplies related to the life-limiting illness for the
hospice patient. In some hospices, the patient may be required to pay a
5% "co-payment" on the medication and a 5% or $5 "co-payment" for
respite care. You should find out about any co-payment when choosing a
hospice.
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