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WHAT IS HOSPICE CARE?
Hospice programs are available to help terminally ill
individuals live their remaining days with dignity.
These programs can assist the family (or other designated
caregiver) in making the patient as comfortable as
possible, and assistance is available around the
clock, seven days a week.
Hospice is primarily a concept of care, not a specific
place of care. Hospice care usually is provided in
the patient’s home. It also can be made available
at a special hospice residence. Hospice is a combination
of services designed to address not only the physical
needs of patients, but also the psychosocial needs
of patients, their loved ones.
Hospice combines pain control, symptom management and
emotional and spiritual support. Seniors and their
families participate fully in the health care provided.
The hospice team develops a care plan to address each
patient’s individual needs. The hospice care
team usually includes:
- The terminally ill patient and his or her family
caregiver(s)
- Doctor
- Nurses
- Home health aides
- Clergy or other spiritual counselors
(e.g., minister, priest, rabbi)
- Social workers
- Volunteers (if needed, and trained
to perform specific tasks)
- Occupational, physical,
and/or speech therapists (if needed).
WHEN IS HOSPICE CARE APPROPRIATE?
As with many
end-of-life decisions, the choice to enroll in a
hospice care program is a deeply personal
thing.
It depends almost as much on the patient’s
philosophy of living and spiritual beliefs as it
does on his or her physical condition and the concerns
of family members. The following case study shows
how one patient decided that hospice care was what
she wanted and why it was right for her:
| Case
Study |
Lynda
was 57 years old when she was diagnosed with
liver cancer. In spite of the best medical treatment
her doctors could provide, her cancer proved
incurable. Although the prospect of dying frightened
her, Lynda wanted to receive professional assistance
to prepare herself and her family for her death.
She realized that she wanted to be cared for at home by her sister, Sara. The
local hospice service made the arrangements so that this would be possible. Hospice
staff made sure that Lynda’s family would have the equipment they needed,
and trained Sara in how to administer medications to relieve Lynda’s pain.
The hospice program also sent a registered nurse to the house to oversee Lynda’s
care, and the nurse consulted with a doctor to make sure Lynda was as comfortable
as she could be during her final weeks. In addition, the hospice service sent
a personal care attendant to bathe Lynda twice a week, and a social worker and
a clergyman to provide spiritual and grief counseling for Lynda and Sara.
Lynda lived the last six weeks of her life at home before she passed away surrounded
by Sara and the rest of her family.
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HOW CAN I PAY FOR HOSPICE CARE?
Medicare, private health insurance, and Medicaid (in
43 states) cover hospice care for patients who meet
eligibility criteria. Private insurance and veterans’ benefits
also may cover hospice care under certain conditions.
In addition, some hospice programs offer health care
services on a sliding fee scale basis for patients
with limited income and resources. To get help with
your Medicare questions, call 1-800-MEDICARE (1-800-633-4227,
TTY/TDD: 1-877-486-2048 for the speech and hearing
impaired) or look on the Internet at www.medicare.gov.
Additional information about how to pay for hospice
care can be found at the Public Policy Institute
of the AARP
WHERE CAN I LEARN MORE ABOUT HOSPICE CARE?
Seniors and caregivers may order a copy of the National
Hospice Foundation’s consumer brochure by calling
1-800-646-6460 from 9 am to 5 pm, EST, Monday through
Friday. The foundation also may be reached at:
The e-mail address is info@nhpco.org and the postal
address is: National Hospice Foundation; 1700 Diagonal
Road, Suite 625; Alexandria, VA 22314.
The Hospice Association of America provides information
about hospice programs and how terminally ill patients
and their families can find hospice services in their
area. Call 202-546-4759 or visit the association’s
website at http://www.hospice-america.org.
The postal address is: Hospice Association of America;
228 Seventh
St., SE; Washington, DC 20003.
Hospice Net at http://www.hospicenet.org is
one more website where you can get information about
how to
find a hospice that is right for you. The e-mail address
is comments@hospicenet.org and
the postal address is:
Hospice Net
401 Bowling Ave., Suite 51
Nashville, TN 37205-5124
To find out more about hospice programs where you live,
you can contact your local aging information and assistance
provider or area agency on aging (AAA). The Eldercare
Locator, a public service of the Administration on
Aging (at 1-800-677-1116 or http://www.eldercare.gov)
can help connect you to these agencies.
OTHER FAMILY COUNSELING AND SUPPORT SERVICES
Seniors and family caregivers facing end-of-life decisions
often must deal with very difficult issues of grief
and loss—both before and after their loved one
dies.
In addition, they may have practical concerns about
their legal rights and how to pay the bills now that
an important member of the household is gone.
To help
families prepare for a loved one’s death (and
to support them afterwards), the following organizations
offer resources that address everything from family
counseling to financial planning.
Americans for Better Care of the Dying was founded
in 1997 to help ensure that every terminally ill patient
can count of good end-of-life care. It publishes several
books on how to deal with mortality (death) and what
health care alternatives (including hospice care) are
available for seniors. The group can be reached by
calling 1-212-895-2660 or visiting its website at:
Family Caregiver Alliance supports and assists caregivers
of brain-impaired adults through education, research,
services and advocacy. They have facts sheets available
on a variety of topics including end-of-life issues.
The fact sheets are available on the organization’s
website at:
Since 1994, GriefNet.org has helped family members
mourn the loss of a loved one.
You can take part in one of 47 e-mail support groups
that are on-line 24 hours a day, 365 days a year. GriefNet
also allows people to create special memorials to their
loved one, and maintains an archive of past memorials
for family members and others to review.
Seniors and family caregivers who want more information
about financial counseling as well as emotional support
may wish to check out Growth House, Inc. Located at
http://www.growthhouse.org,
it offers tips on estate planning in addition to links
for bereavement services.
The e-mail address is info@growthhouse.org and the
telephone number is 1-415-863-3045.
Hearing-impaired seniors should call toll-free at
TTY 1-800-610-6303 for more information.
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Last Updated: 07/06/2005
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