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This section has been reviewed and approved by the PLWC Editorial
Board, 9/05
Hospice care is a health service delivery program available in your
community to help you maintain quality of life when you are faced with a
life-limiting illness. The emphasis of hospice care is on relieving pain
and discomfort and helping you and your loved ones cope with the
emotional, psychological, and spiritual impact of incurable illness,
dying, and grief. It is normal to feel overwhelmed when your oncologist
tells you that there is little chance that treatment will cure or reverse
the disease. Hospice can help. Hospice care brings a multifaceted team of
professionals to focus on your individual needs and goals and allows you
to approach the end of life with confidence in comfort, peace, and
dignity.
According to the National Hospice and Palliative Care Organization
(www.nhpco.org), most hospice care takes place in the home, although
there are some freestanding hospice centers, hospitals, nursing homes,
and other long-term care facilities that provide hospice care programs.
Eligibility for hospice care
Hospice care is most beneficial when treatments intended to cure have
been exhausted, and you are facing a limited life expectancy. In the United States, acceptance
into a hospice typically requires a statement by a doctor that you have a
life expectancy of six months or less if the disease runs its natural
course. You will need to discuss certain issues regarding your disease
progression, outlook for recovery, and individual medical condition with
your doctor to determine if hospice is appropriate for you. If your
condition should improve or your disease goes into remission (temporary
or permanent absence of symptoms), hospice care can be discontinued and
active cancer treatment can resume. As necessary, hospice care can begin
again at a later time.
Finding a hospice facility or program in your area
The National Hospice and Palliative Care Organization provides a database
of hospices that you can search by state and city.
Goals of hospice care
Comfort and quality of life are the primary goals of hospice. Hospice
care focuses on your and your family's individual needs and acknowledges
the fact that every person is unique with their own set of personal
beliefs, hopes, and fears. The overall aim of hospice is to promote your
well-being as long as you live.
Hospice programs and services
In order for hospice to be successful in achieving its goals, it requires
input from you and your loved ones, as well as a variety of medical,
nursing, and allied health professionals. This interdisciplinary hospice
team typically consists of:
- A doctor, medical
director
- Nurses who provide
direct care and case management
- Home health aides,
including bath aides, to assist with basic needs
- Social workers
- Chaplains and pastoral
care counselors
- Physical, occupational, and
rehabilitation therapists
- Dietitians
- Trained hospice
volunteers
- Bereavement counselors
- Your primary care doctor
and/or oncologist
The hospice team works closely with you and your family or
caregivers to develop a plan of care tailored to meet your unique needs.
The hospice staff is also responsible for meeting with you and your
family to explain their approach to care and the types of services
offered.
Hospice at home
In many cases, a family member or close friend will assume the majority
of the responsibility in caring for you at home and the needs to serve as
primary caregiver. The hospice staff will regularly meet with you to
evaluate your needs on a continual basis and provide you with any
services necessary under the supervision of your doctor or the hospice
staff. The hospice staff is on-call 24 hours a day, seven days a week.
This plan of care will include measures to help with pain, and other
symptom management, and counseling.
The American Hospice Foundation developed a checklist to help you and
your family learn what to expect from high-quality, in-home hospice care.
You can expect the hospice staff to:
- Teach you (and your
family) to care for yourself as much as you comfortably can
- Enable your family to
provide some of the care under supervision from hospice care staff
and hands-on training
- Let you know how often
they will visit and set up appointments with you and your family, so
you know when to expect them
- Order the necessary
equipment and supplies, and ensure that they arrive promptly
- Explain how pain and
other symptoms will be controlled
- Make certain that you
are comfortable, with least possible pain, or other troubling
problems
- Answer calls and urgent
questions at any time of the day and night, and respond immediately
to urgent calls from you or your family members
- Include you and your
family in planning your care
- Determine if you need or
want spiritual support from the hospice program
- Arrange for brief stays
in a hospital or nursing home if family caregivers need time away
from their responsibilities at home
- Explain to you and your
family what is likely to happen if you should die
- Work with you and your
family to prepare advanced directives in the event you become unable
to vocalize your preferences near or at the end of life
- Explain what needs to be
done at the time of death
- Offer grief support to
help your family adjust to life changes after death
Hospice care outside the home
If you are admitted to an inpatient hospice facility, the location and hours
should be convenient for family visits; provide peace and quiet; and
ensure privacy for you, your family, and other visitors. Consider
discussing the following issues with the hospice staff:
- How will pain and other
symptoms be managed?
- How will family members
be involved in day-to-day care, such as eating, bathing, giving
medication, and monitoring changes in condition?
- What services are
provided to help with the emotional and spiritual aspects of death
and dying?
- Who can my family
members call if they have any questions, and what are the phone
numbers?
- Can family and friends
visit at any time?
Medicare hospice benefits
The cost of hospice care, whether at home or as an inpatient, is covered
as a benefit under Medicare Hospital Insurance (Part A). The Medicare
Hospice Benefit entitles all Medicare beneficiaries to the benefits of
hospice care. A doctor must determine that you have a limited life
expectancy of six months or less if the condition runs its natural course
to be eligible for the Hospice Benefit, and you will be required to sign
a statement choosing hospice care instead of the standard Medicare
benefits for a terminal illness. Under Medicare, hospice is primarily
delivered in the home setting by a Medicare-approved hospice provider and
covers:
- Services provided by the
doctors
- Nursing visits to the
home with 24-hour on-call services
- Medical appliances and
supplies related to the terminal illness
- Medications for symptom
management and pain relief
- Short-term, acute care
either in a hospital or nursing home, including respite care. Inpatient respite care is provided to give
family caregivers temporary relief and is limited to a stay of five
days or less.
- Home health aide and
homemaker services
- Physical therapy,
occupational therapy, speech and language therapy, and medical
social services
- Supportive counseling
- Spiritual support and
counseling
- Nutritional counseling
- Bereavement support for
your family
What is not covered under Medicare
The following services are not covered under Medicare:
- Treatment for the
terminal illness that is not for pain control and other symptom
management
- Care given by another
health-care provider that was not arranged through the hospice
program
- Care given by another
health-care provider that duplicates care the Medicare-approved
hospice provider is required to provide
For Medicare benefit information, visit the United States
Department of Health and Human Services at www.hhs.gov. To learn more
about the Medicare Hospice Benefit, visit www.medicare.gov/publications/pubs/pdf/02154.pdf.
Additional resources
The National Hospice and Palliative Care Organization
American Pain Foundation
CancerCare
GriefNet
For information on patient rights for home care and hospice care, read
the National Association for Home Care's How to Choose a Home Care
Provider and the Hospice Association of America's Hospice Patients' Bill
of Rights.
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