Frequently Asked Questions About Hospice
1.
When should a decision about entering a hospice program
be made and who should make it?
2.
Should I wait for our physician to raise the possibility
of hospice, or should I raise it first?
3. What if our physician doesn’t know about
hospice?
4. Can a hospice patient who shows signs of recovery
be returned to regular medical treatment?
5. What does the hospice admission process involve?
6. Is there any special equipment or changes I have
to make in my home before hospice care begins?
7. How many family members or friends does it take
to care for a patient at home?
8. Must someone be with the patient at all times?
9. How difficult is caring for a dying loved one
at home?
10. What specific assistance does hospice provide
home-based patients?
11. Does hospice do anything to make death come
sooner?
12. Is caring for the patient at home the only place
hospice care can be delivered?
13. How does hospice “manage pain”?
1.
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’s 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 aggressive efforts
to “beat” the disease. Hospice staff members are highly
sensitive to these concerns and always available to discuss them
with the patient and family.
2.
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 health care professionals, clergy
or friends.
3.
What if our physician doesn’t know about hospice?
Most physicians
know about hospice. If your physician wants more information about
hospice, it is available from the National Council of Hospice
Professionals Physician Section, medical societies, state hospice
organizations, or the National Hospice 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.
4.
Can a hospice patient who shows signs of recovery be returned
to regular medical treatment?
Certainly.
If the patient’s condition improves and the disease seems
to be in remission, patients can be discharged from hospice and
return to aggressive therapy or go on about their daily life.
If the discharged patient should later need to return to hospice
care, Medicare and most private insurance will allow additional
coverage for this purpose.
5.
What does the hospice admission process involve?
One of the
first things the hospice program will do is contact the patient’s
physician to make sure he or she agrees that hospice care is appropriate
for this patient at this time. (Most hospices have medical staff
available to help patients who have no physician.) The patient
will 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.
6.
Is there any special equipment or changes I have to make in my
home before hospice care begins?
Your hospice
provider will assess your needs, recommend any equipment, and
help make arrangements to obtain any necessary equipment. 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, clean and safe as possible.
7.
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 to prepare an individualized care plan that will, among other
things, address the amount of caregiving needed by the patient.
Hospice staff visit regularly and are always accessible to answer
medical questions, provide support, and teach caregivers.
8.
Must someone be with the patient at all times?
In the early
weeks of care, it’s 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 recommends someone be there continuously. While
family and friends do deliver most of the care, hospices provide
volunteers to assist with errands and to provide a break and time
away for primary caregivers.
9.
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 by phone with the family and make night visits if appropriate.
To repeat: Hospice can also provide trained volunteers to provide
“respite care,” to give family members a break and/or
provide companionship to the patient.
10.
What specific assistance does hospice provide home-based patients?
Hospice patients
are cared for by a team of physicians, nurses, social workers,
counselors, hospice certified nursing assistants, clergy, therapists,
and volunteers - and each provides assistance based on his or
her own area of expertise. In addition, hospices provide medications,
supplies, equipment, and hospital services, related to the terminal
illness. and additional helpers in the home, if and when needed.
11.
Does hospice do anything to make death come sooner?
Hospice neither
hastens nor postpones dying. Just as doctors and midwives lend
support and expertise during the time of child birth, hospice
provides its presence and specialized knowledge during the dying
process.
12.
Is caring for the patient at home the only place hospice care
can be delivered?
No. Although
90% of hospice patient time is spent in a personal residence,
some patients live in nursing homes or hospice centers.
13.
How does hospice “manage pain”?
Hospice believes
that emotional and spiritual pain are just as real and in need
of attention as physical pain, so it can address each. 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 can assist patients to be as mobile and
self sufficient as they wish, and they are often joined by specialists
schooled in music therapy, art therapy, massage and diet counseling.
Finally, various counselors, including clergy, are available to
assist family members as well as patients.
14.
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.
15.
Will medications prevent the patient from being able to talk or
know what’s happening?
Usually not.
It is the goal of hospice to have the patient as pain free and
alert as possible. By constantly consulting with the patient,
hospices have been very successful in reaching this goal.
16.
Is hospice affiliated with any religious organization?
No. While
some churches and religious groups 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.
17.
Is hospice care covered by insurance?
Hospice coverage
is widely available. It is provided by Medicare nationwide, by
Medicaid in 39 states, and by most private insurance providers.
To be sure of coverage, families should, of course, check with
their employer or health insurance provider.
18.
If the patient is eligible for Medicare, will there be any additional
expense to be paid?
Medicare covers
all services and supplies for the hospice patient related to the
terminal illness. In some hospices, the patient may be required
to pay a 5% or $5 “co-payment” on medication and a
5% co-payment for respite care. You should find out about any
co-payment when selecting a hospice.
19.
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 for anyone who cannot
pay using money raised from the community or from memorial or
foundation gifts.
20.
Does hospice provide any help to the family after the patient
dies?
Hospice provides
continuing contact and support for caregivers for at least a year
following the death of a loved one. Most hospices also sponsor
bereavement groups and support for anyone in the community who
has experienced a death of a family member, a friend, or similar
losses.