Hospice
is a set of services that we all may need someday - if not for ourselves,
for our parents. While death is not an option for any of us, we do have choices
about the services we use at the end of life. Hospice is undoubtably the
best option in the last months of life because it offers a whole variety of
benefits, not only to those of us who are dying, but also to those we leave
behind.
Yet, despite its many advantages, hospice is still a mystery
to most Americans, 25 years after its introduction to this country. That
hospice remains a mystery is due in part to our societýs resistance
to discuss matters related to death. Also accountable is the Federal Government´s
poor performance in educating the public about the Medicare hospice program
instituted in 1983. It is also fair to say that, as a whole, hospices have
not been effective in raising the public awareness about hospice.
Now,
more than ever, there is a sense of urgency to dispel the myths and to learn
as much as possible about hospice. Otherwise, we will participate, albeit
inadvertently, in the erosion of hospice and its benefits. The threats to
hospice are undeniable and they come from many directions. Among those threats,
is policymakers reluctance to use the word "hospice," and instead rely on
words like palliation or palliative care. So, even before hospice becomes
a commonly understood concept, it could well disappear from our language.
Hospice programs throughout the country are facing a decrease in use
of services due to government constraints. The Federal Government arbitrarily
restricts hospice care to those whose death is six months away, or sooner.
Although the timing of death is difficult to predict, hospices are being
held accountable for accepting patients who outlive their six-month prognosis.
Physicians, who on whole, refer patients to hospice only reluctantly, are
increasingly more wary of government oversight of their prognostic decisions
and their pain management practices. As a result, people who qualify for
hospice care are referred too late, or not at all.
Managed care organizations
(MCO's) may also create barriers to hospice. Most MCOs do not have financially
rewarding arrangements with hospices, so referring patients may mean financial
losses. In contrast, using the MCO's own home health services may be financially
more attractive. This represents a biased incentive that may not be favorable
to the dying patients.
Another threat to hospice is physician-assisted
suicide which could be all too readily substituted for hospice care, especially
if dying people are not offered the hospice alternative on a timely basis.
Without the pain relief, emotional support and spiritual guidance that hospice
offers, physician-assisted suicide may look like a reasonable alternative
to dying people in distress.
Ultimately, however, a public that is "clueless"
about hospice is the most serious threat to the long-term survival of hospice
in America. If we are not fully aware of the many hospice benefits, we become
prey to the vagaries of the health care system.
If we inform ourselves
of the hospice concept, its comprehensive services and its financial aspects,
we can more fully participate in the decisions that doctors and policymakers
are making on our behalf. If we learn about hospice, we can work to preserve
it for the time that we, or someone we love, may need it.
To learn about
hospice, it is useful to start with debunking the common myths that in themselves
create barriers to hospice.
THE COMMON MYTHS OF HOSPICE
1
Myth #1 Hospice is a place.
Hospice
care takes place wherever the need exists -- usually the patient's home.
About 80 percent of hospice care takes place at home.
Myth # 2
Hospice is only for people with cancer.
More than one-fifth
of hospice patients nation-wide have diagnoses other than cancer. In urban
areas, hospices serve a large number of HIV/AIDS patients. Increasingly,
hospices are also serving families coping with the end-stages of chronic diseases,
like emphysema, Alzheimer's, cardiovascular, and neuromuscular diseases.
Myth #3 Hospice is only for old people.
Although the
majority of hospice patients are older, hospices serve patients of all ages.
Many hospices offer clinical staff with expertise in pediatric hospice care.
Myth #4 Hospice is only for dying people.
As a
family-centered concept of care, hospice focuses as much on the grieving family
as on the dying patient. Most hospice make their grief services available
to the community at large, serving schools, churches and the workplace.
Myth #5 Hospice can only help when family members are available
to provide care.
Recognizing that terminally ill people may live
alone, or with family members unable to provide care, many hospices coordinate
community resources to make home care possible. Or they help to find an alternative
location where the patient can safely receive care.
Myth #6
Hospice is for people who don't need a high level of care.
Hospice
is serious medicine. Most hospices are Medicare-certified, requiring that
they employ experienced medical and nursing personnel with skills in symptom
control. Hospices offer state-of-the-art palliative care, using advanced
technologies to prevent or alleviate distressing symptoms.
Myth
#7 Hospice is only for people who can accept death.
While
those affected by terminal illness struggle to come to terms with death, hospices
gently help them find their way at their own speed. Many hospices welcome
inquiries from families who are unsure about their needs and preferences.
Hospice staff are readily available to discuss all options and to facilitate
family decisions.
Myth # 8 Hospice care is expensive.
Most people who use hospice are over 65 and are entitled to the Medicare Hospice
Benefit. This benefit covers virtually all hospice services and requires
little, if any, out-of-pocket costs. This means that there are no financial
burdens incurred by the family, in sharp contrast to the huge financial expenses
at the end of life which are incurred when hospice is not used.
Myth
# 9 Hospice is not covered by managed care.
While managed
care organizations (MCOs) are not required to include hospice coverage, Medicare
beneficiaries can use their Medicare hospice benefit anytime, any where they
choose. They are not locked into the end-of-life services offered or not
offered by the MCOs. On the other hand, those under 65 are confined to the
MCO's services, but are likely to gain access to hospice care upon inquiry.
Myth # 10 Hospice is for when there is no hope.
When death is in sight, there are two options: submit without hope or live
life as fully as ever until the end. The gift of hospice is its capacity
to help families see how much can be shared at the end of life through personal
and spiritual connections often left behind. It is no wonder that many family
members can look back upon their hospice experience with gratitude, and with
the knowledge that everything possible was done towards a peaceful death.
What is Hospice?
Hospice includes medical care with an emphasis
on pain management and symptom relief. Hospice teams of professionals and
volunteers also address the emotional, social, and spiritual needs of the
patient and the whole family. Overseeing all patient care is the hospice
medical director who may also serve as the attending physician. Alternatively,
the patient's own physician may continue in this role, in coordination with
the hospice team and its plan of care.
Medical Care
Pain management
is of particular concern for a patient with a life-threatening illness. Hospice
staff are the experts in state-of-the-art pain treatments, helping patients
feel comfortable with pain management alternatives. If administering pain
medication requires a new skill, family members can count on the hospice staff
for training and guidance.
Most medical treatments needed to make a
terminally ill patient physically comfortable can be provided at home. Recent
technological advances allow for a wide variety of equipment to be installed
in the home, thus reducing the need for hospitalization, except in the most
complicated cases. In rare cases when symptoms cannot be controlled at home,
inpatient facilities are available.
Emotional and Spiritual Support
The fear of death is often due to the fear of pain and abandonment.
Hospice staff include bereavement and spiritual counselors who help patients
and families come to terms with dying. They assist patients in finishing
important tasks, saying their final goodbyes, healing broken family relationships,
distributing precious objects, and completing a spiritual journey.
Unfinished business can make dying harder and grieving more difficult for
those left behind. Hospice staff recognizes that a person who comes to terms
with dying has a less stressful death, and that the family benefits from a
less complicated grieving process. A source of relief and comfort for many
hospice patients is the knowledge that the family will receive ongoing bereavement
support.
Practical Considerations
The day-to-day chores of life
can become overwhelming for family caregivers. Hospice staff can teach them
to care for the dying person at home - administer medications, operate equipment
and coordinate services. Volunteers are integral members of the hospice staff,
providing companionship and assistance in household chores.
Financial
Concerns
Financial worries can be a major burden for a patient facing
a terminal illness. Most hospice patients are Medicare participants with
ready access to a hospice benefit that minimizes out-of-pocket expenses in
the last months of life. The Medicare hospice benefit covers prescribed medications,
visits by medical and nursing professionals, home health aides, short-term
inpatient care and bereavement support for the family after the patient has
died. The Medicare hospice benefit also eliminates the burden of paperwork,
as families are not required to submit claims or pay bills. For patients
without hospice insurance, financial accommodations are made based on ability
to pay.
Hospice: The Challenge to American Health Care Consumers
Hospice is easily confused with less attractive alternatives, and, as a concept,
it suffers from a powerful denial syndrome in our society. Hospice must be
better understood if it is to reach all those who need it. When all Americans
know what hospice is, they will not only make it an explicit part of their
long-term plans, but their fear of death will be abated. Increased visibility
of hospice, locally and nationally, will result in more people becoming pro-active
advocates for themselves and their families.
How is the American Hospice
Foundation addressing the challenge?
The American Hospice Foundation's
mission is to spread the hospice message in local communities and across the
country. This is the message of hope that a dignified death at home is an
option for all Americans and that grief support is readily available for all
adults and children. To fulfill its mission, the Foundation conducts public
education campaigns and fosters research that benefits hospice consumers.
To educate the public about hospice, the American Hospice Foundation
works with strategic messengers such as employee assistance professionals,
teachers, school psychologists, and pastoral counselors. These professionals
are in the position of teaching or counseling others about grief, death, and
dying issues. Since it is still difficult to discuss death in our society,
we often begin our efforts with messages related to grief. When hospice organizations
provide this information, they become community resources, the recognized
experts, and, ultimately, more to our society.
The American Hospice
Foundation fosters consumer-oriented research designed to improve access and
quality of care. Currently, the Foundation is developing a hospice consumer
report card that is designed to guide families toward high quality hospices,
and to inform consumers about the most important features of hospice care.
Resources:
To order a sample copy of the American Hospice Foundation
brochures: Grief at Work: A Guide for Employees and Managers; Grief at
School: A Guide for Teachers and Counselors; and, Grief and Faith:
Spiritual Paths Through Loss, please specify which brochure you need
and send $3.00 and a self-addressed, stamped letter-sized (#10) envelope
to the American Hospice Foundation at 2120 L Street NW, Suite 200
Washington, DC 20037. Or you may check our website at
www.americanhospice.org.
Books for Adults:
Dying Well:
The Prospect for Growth at the End of Life by Ira Byock, M.D. Riverhead
Books, New York, 1977.
Explaining Death to Children by Earl
A. Grollman, Beacon Press, Boston, 1966.
The Grieving Child: A Parent's
Guide by Helen Fitzgerald, Simon & Schuster, New York, 1992.
Helping Children Cope with Grief: A Guide for Grownups by William C. Kroen,
Ph.D., LMHC, Free Spirit Publishing, Minneapolis, 1996.
The Seasons
of Grief: Helping Your Children Grow Through Loss by Dr. Donna A. Gaffney,
New American Library, New York, 1988.
Books for Young Children
How It Feels When A Parent Dies by Jill Krementz, Knopf, New York, 1981.
The Kids Book About Death and Dying by Eric E. Rofes, Little
Brown, Boston, 1985.
Lifetime: The Beautiful Way to Explain Death
to Children by Bryan Mellonie and Robert Ingpen, Bantam Books, New York,
1983.
Making it Better: Activities for Children Living in a Stressful
World by Barbara Oehlberg, Redleaf Press, St. Paul, MN, 1996. My Pet
Died by Rachel Biale, Tricycle Press, Berkeley, CA 1997.
The Tree
that Survived Winter by Mary Fahy, Paulist Press, New Jersey, 1989.
Waiting for the Whales by Sheryl McFarlane and Ron Lightburn, Philomel
Books, The Putnam & Grosset Group, New York, 1993.
We are Moving
by Rachel Biale, Tricycle Press, Berkeley, CA 1997.
For Local
Counseling Contact:
The Children's Grief Support Network, The Dougy
Center, P.O. Box 86852, Portland, OR. (Call 503-775-5683 for a list of children's
grieving centers.)
The Association for Death Education and Counseling,
638 Prospect Street, Hartford, CT 06105. (Call tel: 203-586-7503 for a list
of professional counselors.)
The National Association for Home Care
(NAHC) and the National Hospice Organization both maintain locators on their
Websites: www.nahc.org and
www.nho.org, respectively.
For a list of local hospices call the National
Hospice Organization at 800-658-8898.
1
Naierman, Naomi and Turner, Jo. Demystifying Hospice AAPA News, July
15, 1997, p. 7.
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© 1999. American Hospice Foundation. All Rights Reserved.
2120 L
Street, NW ~ Suite 200 ~ Washington, DC 20037
Tel: 202-223-0204 ~ Fax:
202-223-0208 ~ E-mail: ahf@americanhospice.org
www.americanhospice.org
