Hospice care provides
medical services, emotional support, and spiritual resources for people who are
in the last stages of a terminal illness, such as cancer or heart failure.
Hospice care also helps family members manage the practical details and
emotional challenges of caring for a dying loved one.
Why might you choose hospice care?
The goal of
hospice treatment is to keep you comfortable and improve your quality of life
while you are dying. This philosophy is a shift from usual medical treatments,
in which health professionals strive to cure your disease. Hospice services are
not intended to speed up or prolong the dying process, but focus instead on
relieving pain and other symptoms. Hospice caregivers are concerned with
enhancing the quality of remaining life by keeping you as alert and comfortable
as possible in a familiar environment with family and friends.
Hospice programs offer services 24 hours a day, 7 days a week, in your
own home or in a hospice center. Some hospices also offer services in nursing
homes, long-term care facilities, or hospitals.
What kind of services are provided?
Hospice
services generally include:
Basic medical care with a focus on pain and
symptom control.
Medical supplies and equipment as
needed.
Counseling and social support to help you and your family
with psychological, emotional, and spiritual issues.
Guidance with
the difficult, but normal, issues of life completion and closure.
A
break (respite care) for caregivers, family, and others who regularly care for
you.
Volunteer support such as meal preparation or errand
running.
Counseling and support for your loved ones after you die.
Who is involved with providing hospice services?
Most of the time, hospice care is provided in your home. A family member
or loved one will generally look after you much of the time. And someone from
your hospice team will usually visit you for an hour or so one or more times a
week. Your loved ones will work with the hospice team to give you the best care
possible.
Hospice teams usually include a doctor and nurses,
social workers, spiritual advisors, nursing
assistants, and trained volunteers. It may also include
pharmacists,
respiratory therapists, psychologists, psychiatrists,
music therapists,
physical therapists, and
occupational therapists. If you have an emergency or
get scared, you can call the 24-hour hospice number for advice. When necessary,
a nurse can usually come to your home at any time of the day or night.
Some people worry about losing touch with their regular, trusted doctor.
But being on hospice does not mean that you won't see your regular doctor. He
or she can work with others on your team to stay involved in your care.
Are you eligible for hospice services?
Eligibility
for most hospice programs is based on two criteria:
Your condition is considered incurable. This is called a
terminal illness.
Your doctor has indicated that your life
expectancy is 6 months or less if your illness runs its normal course. Usually
a form must be signed by your primary doctor as well as the medical director or
physician member of a hospice team.1
It can be hard for doctors to know how long a person
will live. Some people live longer than expected. If you live longer than 6
months, you can continue on hospice. If your illness gets better, you can stop
receiving hospice care.
Hospice care programs do not discriminate.
Care is provided regardless of age, sex, religion, diagnosis or type of health
problem, ethnic or cultural background, sexual orientation, or ability to
pay.
Payment for hospice services is covered through Medicare and
most Medicaid programs. Most, but not all, private insurance programs offer a
hospice benefit. It is important to research whether your health insurance
coverage offers hospice benefits and determine exactly which services are
included. Many hospice programs will research your medical coverage for you.
You have a disease or illness that is expected
to shorten your life.
Treatment that tries to cure the disease or
prolong your life has become more of a burden than a benefit to
you.
You would like to spend your remaining life as comfortably as
possible in a setting that you choose, such as your own home.
You
want family and friends to participate in your care.
You want your
loved one who has a terminal illness to die comfortably at home.
Some people who might benefit from hospice care do not
receive it for a variety of reasons. Many people, including some health
professionals, simply don't know much about hospice care. It can be difficult
for a doctor to acknowledge that a person is approaching the final stages of an
illness and to introduce the concept of hospice services. It can also be
difficult for you and your family to accept that the end of life is
approaching. Some families choose to pursue aggressive medical care up to the
end.
By choosing hospice, you decide to stop trying to cure your
illness and to focus instead on comfort and quality of life. If you are at
home, your hospice team will prepare your caregivers to cope with almost
anything that could happen at home. But this does not mean that you cannot go
to a hospital. When a hospice takes over your care, they will work with you to
arrange for any medical care that you need. If something happens that causes a
caregiver to call 911 , you may be treated
in a hospital and later return to hospice care.
The Medicare
Hospice Benefit legislation, passed in 1982, pioneered the model for hospice
programs in the United States. Eligibility for most hospice programs, as
established by Medicaid, is based on two main criteria:
Your condition is considered incurable. This is called a terminal
illness.
Your doctor has indicated that your life expectancy is 6
months or less if your illness runs its normal course. A form must usually be
signed by your primary doctor as well as the medical director or physician
member of a hospice team.1
It can be hard for doctors to know how long a person will
live. Some people live longer than expected. If you live longer than 6 months,
you can continue on hospice. If your illness gets better, you can stop
receiving hospice care.
Hospices usually take patients who are
declining in their health and daily functioning. This means that the patient
may need help with activities of daily living and isn't eating or moving around
very well. The goal is to live out a natural life without artificial medical
assistance. Medical care is provided to give comfort rather than to prolong
life. For example, chemotherapy may no longer be used to cure your cancer, but
it may be given to reduce pain. People who want to live as long as possible by
any medical means are not a good match for hospice care.
Many
people who are living with a disease that has an unpredictable but still
terminal course may also want and be able to receive hospice care. In some of
these cases, Medicare might not cover hospice care costs. Medicare covers the
cost of hospice in the last 6 months of life. There are guidelines for terminal
diseases that have an unpredictable course. People who have
AIDS, amyotrophic lateral sclerosis (ALS),
emphysema,
heart failure, kidney (renal) disease, or
Alzheimer's disease are all eligible for hospice care
when their disease has reached an advanced, terminal stage.
People of any age, including children, may receive hospice services. In
some areas, there are special hospice programs for children who have cancer or
other terminal diseases and for people who have AIDS.
Hospice
care programs do not discriminate. Care is provided regardless of age, sex,
religion, diagnosis or type of health problem, ethnic or cultural background,
sexual orientation, or ability to pay.
Many complex challenges
face a dying person. Treating physical symptoms alone does not take care of
emotional suffering or family upheaval. A recent study asked people what
aspects of their end-of-life care they considered most important. Overall, the
important factors included:2
Pain and symptom control and assurance that
future pain and symptoms would be managed.
Clear and participatory
decision making.
Preparation for death, with full knowledge of the changes that
could occur.
Completion, including spiritual peace, life review,
resolving conflicts, spending time with family and friends, and saying
good-bye.
Contributing to the well-being of
others.
Affirmation of the individual as a unique and whole
person.
Hospice care helps you address these challenges and
approach death as comfortably and with as much dignity as possible.
Receiving Hospice Care
Hospice is a
comprehensive program with services for people who are seriously ill and not
expected to recover. When you decide to be cared for by a hospice program, you
acknowledge that your treatment goals will shift from doing everything possible
to cure your condition to helping make the rest of your life as comfortable and
high-quality as possible.
You do not need to be bedridden or in a
hospital to benefit from hospice care. No matter what your physical condition,
hospice services focus on keeping you as comfortable, functional, and alert as
possible. If needed, these services may include help with bathing, dressing,
and eating as well as medicine and treatment for all symptoms, including pain
and anxiety.
Hospice teams, which consist of medical
professionals, counselors, therapists, social workers, spiritual advisors, home
health aides, and trained volunteers, are available to address your ongoing
concerns and needs. Your team can:
Assist with
advance directive forms. This may include documenting
your preferences regarding life support and cardiopulmonary resuscitation
(CPR).
Answer questions about palliative treatments, which are
designed to relieve pain and other symptoms.
Help you determine
what is important in terms of putting your legal and financial affairs in
order.
Help you and your family communicate and deal with
unresolved issues.
Give your caregivers a break (respite care). Trained volunteers
may be available to relieve your loved ones for a few hours a week. If your
caregivers need a longer break or must be away to attend a special event, some
hospices provide respite care for several days.
Counseling and support services that hospice provides can
help you:
Resolve differences with family and friends or
say important things that may otherwise go unsaid.
Complete
relationships.
Review your life.
Explore spiritual
issues.
Hospice care also includes helping your family and friends
through their grief after you die. Most programs continue to provide
bereavement services for family and friends, such as support groups and
counseling, for at least a year after a loved one's death.
Arranging for Hospice Care
When you have decided to
pursue
hospice care, you will need to:
Complete documents to determine your
eligibility and insurance coverage and to outline your treatment preferences.
These documents include:
Insurance
forms. Hospice services are covered by Medicare, by Medicaid in most states,
and by many private insurance plans. If you plan to receive
Medicare hospice benefits, you and your doctor will
need to complete forms. Check with your employer or your health insurance plan
for information about what services your plan covers. Many hospices will also
help people who cannot pay by applying for money from other sources.
Legal documents related to finances, property, and other
matters.
Decide what kinds of hospice services you want.
Each hospice program has its own guidelines
and admission rules, such as whether the program will provide artificial (tube
or IV) nutrition and fluids. Ask about the guidelines for the programs in your
area and how flexible they may be: For example, if they don't provide a
particular service, will they work with another provider who does? You need to
be clear about what you want before entering a hospice program. Use a
checklist(What is a PDF document?)
to record what is important to you in a hospice program.
All
hospice programs should provide written materials that describe their services,
including who provides the services, who is eligible, costs and payment
processes, and the program's insurance and liability information. Ask for this
information, and read it carefully.
Identify hospice programs in your area. People
and organizations that can help you find hospice programs in your area include:
Your doctor or hospital.
The
medical social worker at your hospital or nursing home.
Your state
or local agency on aging.
State health department.
Your
insurance provider.
The phone book. (Look in the yellow pages under
"home care" or "hospice.")
Your state hospice
organization.
National organizations such as the National
Association for Home Care, the National Hospice and Palliative Care
Organization, and the Hospice Association of America. For contact information,
see the Other Places to Get Help section of this topic.
Choose a hospice program. Start by calling some of the programs
in your area. Choose the program that best fits your needs by asking questions
based on your
checklist(What is a PDF document?)
.
After you have begun the hospice program, you will want
to:
Get all billing arrangements in writing,
including costs and payment arrangements, and keep a copy.
Be sure
that your family knows what services you are to receive from the program and
the schedule.
Be sure that everyone in your family knows the names
and phone numbers of important contact people at the hospice. Post this
information near your telephone.
Ensure that your family will get the support they need after you
die. Choose one person who will be responsible for notifying family and friends
about support group meetings, bereavement counseling opportunities, and other
services that the hospice program may provide after a loved one dies.
Where to Go From Here
Write down any questions you
have about hospice care to discuss with your doctor during your next visit. If
you would like more information on hospice programs, including referrals to
programs in your area, see the Other Places to Get Help section of this
topic.
Other Places To Get Help
Organizations
American Hospice Foundation
2120 L Street, N.W.
Suite 200
Washington, DC 20037
Phone:
(202) 223-0204
Fax:
(202) 223-0208
E-mail:
ahf@americanhospice.org
Web Address:
http://www.americanhospice.org
The American Hospice Foundation strives to improve access to
quality hospice care through public education, professional training, and
consumer advocacy. The organization supports programs that serve the needs of
terminally ill and grieving individuals of all ages. It publicizes hospice
concepts through training, education, and outreach, promoting services, and
initiating research on consumer needs and preferences in end-of-life
care.
The Web site offers information about death and dying and related
grief and grieving processes. The "Grief Zone" has links to readings grouped
into categories such as grief and kids, grief on the job, hospice information
and support, and grief and faith.
Hospice Association of America
228 Seventh Street SE
Washington, DC 20003
Phone:
(202) 546-4759
Fax:
(202) 547-9559
Web Address:
www.nahc.org/haa
The Hospice Association of America (HAA) seeks to heighten the
public visibility of hospice services. HHA offers a number of helpful,
practical publications for people who are considering hospice, including
consumer guides, fact sheets, historical perspectives, and other background
information. The Web site offers information from the legislative, regulatory,
research, legal, and public relations departments, including "Hospice Facts and
Statistics."
Medicare (Department of Health and Human
Services)
7500 Security Boulevard
Baltimore, MD 21244-1850
Phone:
1-800-MEDICARE (1-800-633-4227) toll-free for the Medicare speech-automated system 1-877-267-2323 toll-free for the Centers for Medicare and Medicaid Services
TDD:
1-866-226-1819 toll-free
Web Address:
www.medicare.gov
This federal agency provides guides and other
information about Medicare. The Official U.S. Government Site for People With
Medicare (www.medicare.gov) provides useful information about Medicare
enrollment, coverage, billing, appeals, and drug discount cards, as well as the
latest Medicare policy changes impacting older Americans. Information on the
Medicare Hospice Benefit and how to choose a nursing home is also
included.
National Hospice and Palliative Care
Organization
1700 Diagonal Road
Suite 625
Alexandria, VA 22314
Phone:
1-800-658-8898 (703) 837-1500
Fax:
(703) 837-1233
E-mail:
nhpco_info@nhpco.org
Web Address:
www.nhpco.org
The U.S. National Hospice and Palliative Care Organization (NHPCO)
offers information on local hospice and palliative care programs across
America. NHPCO is committed to improving end-of-life care and expanding access
to hospice care with the goal of improving quality of life for dying people and
their loved ones.
Kinzbrunner BM (2002). How to help patients access
end-of-life care. In BM Kinzbrunner et al., eds., 20 Common Problems in End-of-Life Care, pp. 29-45. New York:
McGraw-Hill.
Steinhauser KE, et al. (2000). In search of a good
death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10): 825-831.
Other Works Consulted
Byock I (1997). Dying Well. New
York: Riverhead Books.
Cordts GA, et al. (2007). Care at the end of life. In
LR Barker et al., eds., Principles of Ambulatory Medicine, 7th ed., pp. 192-207. Philadelphia: Lippincott Williams and
Wilkins.
McCarthy EP, et al. (2003). Hospice use among Medicare
managed care and fee-for-service patients dying with cancer. JAMA, 289(17): 2238-2245.
Rakel RE, Storey P (2002). Care of the dying patient.
In RE Rakel, ed., Textbook of Family Practice, 6th ed.,
pp. 131-147. Philadelphia: W.B. Saunders.
Sadock BJ, et al. ( 2007). Death, dying, and
bereavement. In Kaplan and Sadock's Synopsis of Psychiatry, Behavioral Sciences/Clinical Psychiatry, 10th ed., pp. 61-69.
Philadelphia: Lippincott Williams and Wilkins.
This information does not replace the advice of a doctor. Healthwise disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.
Kinzbrunner BM (2002). How to help patients access
end-of-life care. In BM Kinzbrunner et al., eds., 20 Common Problems in End-of-Life Care, pp. 29-45. New York:
McGraw-Hill.
Steinhauser KE, et al. (2000). In search of a good
death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10): 825-831.
