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Frequently
Asked Questions Concerning Hospice Care:
What is
Hospice Care?
Hospice and Palliative care is considered to be the model for quality,
compassionate care for people facing a life-limiting illness or injury. It
involves a team-oriented approach to specialized medical care, pain
management, and emotional and spiritual support for patient and family
members.
The
focus of hospice relies on the belief that each of us has the right to die
pain-free and with dignity, and that our loved ones will receive the
necessary support to allow us to do so.
Hospice focuses on caring for, not curing, a person’s end-stage disease
which has been determined to be “incurable.” In most cases this care takes
place in the patient’s home. Hospice care also is provided in freestanding
hospice facilities, hospitals, nursing homes and other long-term care
facilities.
Hospice services are available to patients of any age, religion, race, or
illness. In the United States, hospice care is covered under Medicare,
Medicaid, most private insurance plans, HMOs, and other managed care
organizations. To find out how hospice is paid for in your country, please
contact a local hospice near you (where available). See more details below.
Who Makes Up
the Hospice Team?
Hospice care is a family-centered approach that includes a team of doctors,
nurses, home health aides, social workers, chaplains, counselors, and
trained volunteers. This team works together to care for the needs of the
dying patient. This care focuses on the physical, emotional, social, and
spiritual needs of the patient, as well as the emotional and spiritual needs
of the family members. The goal of hospice care is to help keep the patient
as pain-free as possible, with loved ones nearby until death. The hospice
team develops an individualized care plan that meets each person's specific
needs for pain management and symptom control. Other members of the team may
include speech therapists, physical therapists, and occupational therapists,
when needed. Often, the patient’s personal physician may also be included.
However, a patient can choose to have their personal doctor take charge of
the medical care or he or she may choose to have the hospice medical
director take charge of the medical care. Another option is to have both the
physician and the hospice medical director work together to coordinate the
person's medical care, especially when symptoms are difficult to manage.
Regardless of who the patient chooses, the hospice medical director is
available to answer questions the patient or family may have regarding
hospice care.
Who is the
Primary Caregiver?
Often, family members or other loved ones are the patient’s primary care
givers. Hospice staff lend support to the caregivers.
What Can I
Expect From the Hospice Team?
Among its major responsibilities, the interdisciplinary hospice team:
Manages the person’s pain and symptoms
Provides emotional and spiritual support
Provides needed medications, medical supplies, and equipment
Teaches loved ones how to care for the patient
Delivers special services like speech and physical therapy, when needed
Arranges for short-term inpatient care when pain or symptoms become too
difficult to manage at home, or the caregiver needs respite (rest) time
Provides grief support to surviving loved ones and friends
“Support” for the caregivers throughout the patient’s care can include
conversations with the person and family members, teaching caregiving
skills, prayer, telephone calls to loved ones, including family members who
live at a distance and companionship and help from volunteers.
Counseling or grief support for the patient and loved ones are an important
part of hospice care. After the person's death, bereavement support is
offered to families for at least one year (usually 13 months after the death
of the loved one). These services can take a variety of forms, including
telephone calls, visits, written materials about grieving, and support
groups. Individual counseling are sometimes offered by the hospice or the
hospice may make a referral to a community resource.
How is hospice different from other medical care?
Hospice recognizes that a serious illness affects the entire family as well
as the person who is ill. The family, not just the patient, is the "unit of
care" for hospice professionals. Sometimes other family members actually
need more attention than the patient.
What services does hospice provide?
Hospice includes the services of an interdisciplinary team of health care
professionals:
Physicians
(the
patient’s own physician and the hospice physicians, who are specialist in
controlling pain and other symptoms of serious illness) prescribe
medications and other methods of pain and symptom control.
Nurses
are experts
at maintaining patient comfort. They assess the patient frequently and help
family members provide the necessary support.
Certified nurse assistants and home health aides
provide personal care and help the patient and family with activities of
daily living (ADL’s). They also provide companionship and valuable emotional
support.
Social workers
coordinate community resources and help the patient and family with
non-medical concerns. They can help family members mend damaged
relationships, plan for the future and ease other emotional difficulties.
Chaplains and spiritual counselors
help patients and families cope with spiritual questions and concerns at the
end of life, either directly or by coordinating services with the patient’s
and family’s spiritual advisors.
Bereavement coordinators
help patients and families deal with grief. Grief support services continue
for at least one year after the death of a hospice patient.
Volunteers
provide
companionship and emotional support and offer help in myriad ways.
Hospice also
provides medications, medical equipment and supplies necessary to promote
comfort at home or in other hospice settings.
Hospice staff
are available by phone at all times, 24 hours a day, 365 days a year.
When should patients and families consider hospice?
After a diagnosis of a life-limiting disease, patients and their families
should consider their choices for care. A patient does not have to be
bed-bound or critically ill to be admitted to hospice. A hospice nurse is
called in to speak with you and your loved ones about your options for care.
Who is eligible for hospice care?
A physician must certify that a hospice patient has an illness and an
estimated life expectancy of six months or less if the illness runs its
usual course. The patient must agree to hospice care.
Generally most hospice providers accept everyone who meets those criteria,
regardless of the patient’s financial situation or insurance coverage.
The patient does not have to have family caregivers in the home in
order to receive hospice services.
Doesn’t accepting hospice care mean I am “throwing in the towel or simply
“giving up”?
Hospice involves acknowledging that most diseases in their advanced form
cannot be cured. It does not mean giving up hope. The focus of hope shifts
towards helping the patient achieve as much physical
comfort given his or her disease as well as a feeling of peace of mind.
What are the different levels of hospice care?
Most hospice patients live at home. Some may live in a nursing home. Routine
home hospice care covers the services, of the interdisciplinary hospice
team, medications and equipment. Other categories of care are available when
needed.
Levels of Hospice Care:
Routine:
Standard level of care given in the home, long term care facility or
assisted living facility. Care includes visits from the hospice nurse,
chaplain, social worker and home health aides as well as 24-hour on call
nursing support.
Inpatient Care:
Sometimes pain or symptoms cannot be controlled at home, and the patient is
taken to a hospital or other inpatient care facility in order to get their
pain and symptoms under control. After the symptoms are
under control, the patient then returns home. Insurance usually covers the
cost of inpatient room and board.
Respite Care:
Many patients have their own caregivers, often family members. When
caregivers need a rest from their care giving responsibilities, patients can
stay in a nursing home or hospice inpatient facility for up to five days.
Medicare covers the cost of room and board, as do many other insurance
plans.
Continuous Care:
Sometimes a patient has a medical crisis that needs close medical attention.
When this happens, the hospice can arrange for inpatient care, or their staff
can provide
round-the-clock care in the home.
When the
crisis is over, the patient returns to routine home care.
What if I choose hospice and then live more than six months?
Hospice care does not automatically end after six months. Medicare and most
other insurance companies with a hospice benefit will continue to pay for
hospice care as long as a physician certifies that the patient continues to
have a limited life expectancy.
What if my condition improves?
Occasionally, the quality of care provided by hospice leads to improved
health, and life expectancy exceeds six months. When this happens, the
hospice staff will transfer care to a non-hospice care provider. Later, when
patients become eligible for hospice services again, they can re-elect the
hospice benefit.
How does hospice manage pain and other symptoms?
Hospice physicians and nurses are experts at pain and symptom management.
They are continually developing new ways of keeping patients comfortable and
as alert and independent as possible. They know which medications to use
alone and in combination with other medicines in order to provide the best
results for patients. The goal is to provide “quality of life for the
hospice patient” in the limited amount of time he or she has left.
Will I feel “doped up” on pain medication?
When morphine and other pain medicines are administered
properly for medical reasons, patients find much-needed relief without
getting "high" or craving drugs. The result is that hospice patients remain
more alert and active because they are not exhausted by uncontrolled
symptoms. If a patient’s pain requires an opioid for pain relief, then
within the first few days of first receiving this medication, especially
when the patient has never taken these medicines previously, he or she may
appear more drowsy and sleep more. In approximately a week, the patient will
develop a tolerance to this common side effect and will soon become more
alert, sleeping less hours during the day so he or she can spend more
quality time with family and friends. The hospice nurse is expert at
watching for side effects to medications and will know what to do if this
and other side effects do not resolve quickly.
What kind of emotional and spiritual support does the hospice staff provide?
Hospice recognizes that people are more than a group of symptoms. People
nearing the end of their lives often face emotional and
spiritual distress. They may feel saddened as their physical abilities begin
to decrease. They are afraid of being a burden to their families. They often
are concerned about how their loved ones will manage after they are gone.
Spiritual and emotional pain can appear in many forms. Often, they feel deep
regret about things they have done or said – or they think of things that
are left undone and unsaid. Hospice professionals and volunteers are trained
to be good listeners and to help patients and families work through some of
these concerns. In this way, one of the staff’s goals for the patient is to
help him find peace and emotional comfort in his final days. The goal for
the family and other loved ones is to help them reach sound conclusions and
closure with their loved one who will soon pass on.
Who Pays for
Hospice Care? (This information pertains to the United States only. If you
are located outside of the United States, please contact a local hospice,
where available, or a hospital, to find more information that pertains to
your situation.)
Within the United States, hospice is paid for through the Medicare Hospice
Benefit, Medicaid Hospice Benefit, and most private insurers. If a person
does not have coverage through Medicare, Medicaid or a private insurance
company, hospice will work with the person and their family to ensure needed
services can be provided.
What is the
Medicare Hospice Benefit?
The Medicare Hospice Benefit, initiated in 1983, is covered under Medicare
Part A (hospital insurance). Medicare beneficiaries who choose hospice care
receive a full scope of medical and support services for their life-limiting
illness. Hospice care also supports the family and loved ones of the person
through a variety of services as explained above.
More than 90% of hospices in the United States are certified by Medicare.
Eighty percent of people who use hospice care are over the age of 65, and
are thus entitled to the services offered by the Medicare Hospice Benefit.
This benefit covers virtually all aspects of hospice care with little
out-of-pocket expense to the person or family. In addition, most private
health plans and Medicaid in 47 States and the District of
Columbia cover hospice services.
Sometimes
a person’s health improves or their illness goes into remission. If that
happens, your doctor may feel that a patient no longer needs hospice care.
In addition, a patient always has the right to stop hospice care, for any
reason. If hospice care is stopped, a patient will receive the type of
Medicare coverage that he or she had before electing hospice. If a
patient is still eligible, he or she can again return to hospice care at any
time.
Who is
Eligible for Medicare Hospice Benefits?
A person is eligible for Medicare hospice benefits when he or she meets all
of the following conditions:
He or she is eligible for Medicare Part A (Hospital Insurance)
and
His or her doctor and the hospice medical director certify that he or she
has a life-limiting illness and if the disease runs its normal course, death
may be expected in six months or less to live *
And
The patient signs a statement choosing hospice care instead of routine
Medicare covered benefits for their illness
and
The patient receives care from a Medicare-approved hospice program.
*Medicare will still pay for covered benefits for any health needs that are
NOT related to your life-limiting illness.
What Does
Medicare Cover?
Medicare
covers these hospice services:
Doctor services
Nursing care
Medical equipment (like wheelchairs or walkers)
Medical supplies (like bandages and catheters)
Drugs for symptom control and pain relief
Short-term
care in the hospital or in-patient hospice facility (when available),
including respite and inpatient for pain and symptom management *
Home health aide and homemaker services
Physical and occupational therapy
Speech therapy
Social work services
Dietary counseling
Grief support to help the patient and family
*The patient will only have to pay part of the cost for outpatient drugs and
inpatient respite care.
The Medicare
Hospice Benefit Does Not Cover the Following:
1. Treatment intended to cure the patient’s disease.
The patient will receive comfort care to help manage symptoms related
to your illness. Comfort care includes medications for symptom control and
pain relief, physical care, counseling, and other hospice services.
2. Medications not directly related to your hospice diagnosis are not
covered under the Medicare Hospice Benefit.
Hospice team members will consult with the hospice physician and will inform
the patient and family members which medications are covered and which ones
are not covered under the Medicare Hospice Benefit. The Hospice uses
medicine, equipment, and supplies to make the patient as comfortable as
possible. Under the hospice benefit, Medicare will not pay for treatment
where the goal is to cure the end-stage disease. The patient should
speak with the physician if he or she is thinking about potential treatment
to cure the illness.
3. Care from another provider that is the same care that the patient is
getting from the hospice.
4. Nursing Home Room and Board
Room and board are NOT covered by Medicare. The patient may receive hospice
services wherever he or she lives, even in a nursing home. However, the
Medicare Hospice Benefit does not pay for nursing home room and board.
How do I Find
a Local Hospice? (Within the United States)
(Outside of
the United States, we suggest you consult your physician, a local hospital,
the phone directory, or search the internet.)
Click here
to search the National Hospice and Palliative Care Organization (NHPCO)
member database for a hospice provider in your area.
If you have questions or need help finding a hospice, please call the
HelpLine at: 1-800-658-8898.
Below is a
list of things to consider when thinking about contacting a local hospice:
1. Have an advance directive in place that authorizes a person of your
choosing to make decisions if you become unable to do so for yourself
2. Get the information you need about services provided by hospice
3. Make sure you understand how hospice services are paid for
4. Discuss your thoughts, concerns and choices with your family and friends
5. Talk to your physician, family, and close friends about your choices.
6. Become familiar with the hospices in your area.
If we can assist you in any way, please contact us at:
jusaniya@vaisnavascare.com.
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-C.A.R.E.