| In This
Session:
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| Story
about Christie and Pat–
For the next month, which was to be the last of Christie’s
life, Pat learned how to care for his wife of 15 years in their
home, with the help of the hospice team.
Considered
a radical alternative in the 1970s when the first American hospices
were established, hospice has become the most recognized care
offered specifically at the end of life. Yet, it remains widely
misunderstood and under-used. Its goal is to help keep patients
as pain-free — and lucid — as possible, with loved ones nearby,
until death arrives. The work of hospice allows many Americans
to die at home, in their own bed, surrounded by family and friends. |
| About
the Author:
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Stephen R. Connor,
Ph.D. is Vice President for Research and Professional Development
at the National Hospice & Palliative Care Organization
(NHPCO) in Alexandria, VA. He has published journal articles,
reviews, and book chapters on issues related to the hospice
movement and care of dying patients and their families.
He is the author of Hospice: Practice, Pitfalls, and
Promise. |
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| Readings: |
| Patient
and family needs at core of hospice care
By
Stephen R. Connor |
| When a hospice nurse
walks into the home of a person facing life’s most intimate
passage, one of the more crucial questions she will ask
is: What are your hopes and fears?
That question is at the core of what hospice care is all
about.
Hospice nurses are the doorway to an end-of-life care system
that includes doctors, social workers, chaplains, home health
care aides and trained volunteers. They work together to
answer any and all of their dying patients’ needs, be they
physical, psychological or spiritual. The goal is to help
keep patients as pain-free — and lucid — as possible, with
loved ones nearby, until death arrives.
There is no typical patient at the end of life. “Each person
is unique, therefore their care needs to be uniquely tailored,”
said Mary Raymer, chair of the social work section for the
National Hospice and Palliative Care Organization in Alexandria,
Va.
But patients do share many concerns, said Raymer. “The most
common concerns people express are fear of becoming a burden
to others, loss of control, loss of dignity and choice,
finding meaning in their lives, spiritual concerns — in
short, not necessarily the physical component of dying but
the psychosocial component.”
That’s why hospice care serves both patients and families.
Workers concentrate on providing pain medication and relief
for nausea and other symptoms, all the while working to
help the patient deal with the impact their dying will have
on their loved ones. Team members provide spiritual counseling,
help work out arrangements for dependents, answer caregivers’
questions, and make themselves available 24 hours a day,
seven days a week.
Sandi Sunter, a hospice counselor for 20 years at The Hospice
of the Florida Suncoast, discovered the comfort her profession
can provide when her mother, 81-year-old Eleanor Goldstein,
became a hospice patient there, later succumbing to bladder
cancer.
“In a society where the end of my mother’s life could have
been met with cold tubes, heartless machines and strangers,
her choice of hospice allowed her to be the author of her
own end-of-life story. … I experienced the value of hospice
in transforming the end-of-life journey for my mother and
for our family. As patients and families come together,
sharing this bittersweet chapter of life, hospice offers
hope.”
One couple who found this hope last year was Christie Cohagen
and her husband, Pat Towell, of Falls Church, Va. Christie,
49, a government analyst, was suffering from incurable cancer
when she entered Hospice of Northern Virginia last August.
For the next month, which was to be the last of Christie’s
life, Pat learned how to care for his wife of 15 years in
their home, with the help of the hospice team. Christie’s
wishes were respected: She was cared for by Pat and a close
circle of longtime friends, surrounded by her books and
mementos of world travel.
A week before Christie died, some of her work friends came
to the townhouse with a T-shirt they all had signed.
“This really perked her up,” Pat says. “Her last lucid time
was seeing how much those around her cared about her.”
After Christie’s death, Pat became eligible for bereavement
counseling, a service provided by hospices for each family
member for at least a year after a patient’s death. “I know
they are there for me,” says Pat.
Considered a radical alternative in the 1970s when the first
American hospices were established, hospice has become the
most recognizable care offered specifically at the end of
life. It became part of the American medical mainstream
when the hospice Medicare benefit was enacted in 1982. Last
year, 700,000 Americans moved through hospice, most cared
for at home, though also in nursing facilities and hospitals.
More than 3,000 programs are available throughout the United
States.
Yet hospice remains widely misunderstood and under-used.
Some doctors — reluctant to admit defeat against illness
— may put off referrals to hospice care until their patient
is very close to death.
The typical hospice patient is served less than one month
— usually not long enough to put affairs in order, say goodbyes
to family and friends, create memory tapes or books for
loved ones, or simply enjoy a favorite view out the back
window while free from pain, tubes, aggressive drugs and
tests.
Although Medicare fully covers hospice care, doctors need
to establish a prognosis of less than six months to live
for their patient. This, despite the fact that if a hospice
patient lives longer than six months, Medicare will allow
the hospice benefit to be renewed.
Dr. William Lamers, a psychiatrist who started one of the
country’s first hospices in California in the early 1970s,
said, “People should not be afraid to ask their doctors
for hospice care sooner.”
“Pre-hospice” programs are being developed throughout the
United States in which patients with chronic, severe conditions
— but who do not yet have a six-month prognosis — are treated
as if they were in hospice care, with visits by a team looking
at all their needs.
Another factor is a basic misapprehension about what hospice
is. A National Hospice Foundation survey shows that 75 percent
of Americans don’t know that hospice care can be provided
at home and 90 percent don’t realize that Medicare pays
for it. Yet, the same national research results show that
Americans want the kind of end-of-life care hospice provides.
Because round-the-clock, hands-on care is such a vital part
of the hospice experience, hospice can provide trained volunteers,
who relieve primary caregivers, do household chores and
help bathe patients. Perhaps most important, says Jim Hodapp,
a 76-year-old volunteer in Rockford, Ill., “is to be a good
listener,” whether it is to the dying person or their worried
family.
Hodapp, a retired electrical engineer, began volunteering
five years ago, joining his wife, retired nurse Toni Hodapp,
73, a veteran of 15 years.
“Most hospice patients are very interested in talking about
themselves,” says Jim. “I’ve found out most are quite frightened
of dying.”
Because of the relationships Jim and Toni build with their
patients, they attend each patient’s funeral. They’ve found
that is just one of many hospice services greatly appreciated
by the family.
“I have had so many family members tell us they couldn’t
have kept their husband or wife at home if it hadn’t been
for hospice,” says Toni.
Jim has had one patient die in his presence. The man was
alone, in a nursing home. As Jim held the man’s hand, he
noticed him breathing very rapidly. Gradually, Jim says,
the man’s gaze shifted to the distance, his eyes opened
wide, and then his breathing stopped.
Had Jim not been there, the man — whose daughter had not
yet arrived — would have died alone.
Again, this compassion lies at the core of hospice. Jim
says that while his friends say they don’t think they could
do this type of work, he believes it “is one of the best
things I have ever done. It is very rewarding.”
2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services.
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| Tips: |
| Most
Americans don’t know what hospice is, according to research conducted
by the National Hospice Foundation. Nearly 75 percent don’t know
that hospice care can be provided at home and less than 10 percent
know it provides pain relief for the terminally ill. Nearly 80
percent don’t think of it as a choice for end-of-life care and
90 percent don’t know that Medicare pays for it.
Here are some questions to ask when you’re looking for a good
hospice program:
-
What
services does hospice provide?
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What
kind of support is available to the family/caregiver?
- What
roles do the attending physician and hospice physician play?
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What
does the hospice volunteer do?
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How
will hospice meet our spiritual and emotional needs?
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How
does hospice work to keep the patient comfortable?
-
How
are hospice services provided after hours?
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How
and where does hospice provide short-term inpatient care?
-
Can
hospice be brought into a nursing home or long-term care facility?
Medicare
and private insurance, including new long-term care policies,
cover many, if not most, hospice services for anyone with a terminal
illness, including cancer and non-cancer diseases. While you should
check with your insurance provider for specifics on your coverage,
here is a list of what Medicare will cover:
- Physician
services for the medical direction of the patient
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Regular
home visits by registered nurses and licensed practical nurses
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Home
health aide and homemaker services, such as dressing and bathing
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Social
work and counseling services
- Chaplain
services for the patient and loved ones, if desired
-
Medical
equipment, such as hospital beds
-
Medical
supplies, such as bandages and catheters
-
Drugs
for symptom control and pain relief
-
Volunteer
support to assist patients and loved ones
-
Physical
therapy, speech therapy, occupational therapy, and dietary counseling
Keep
in mind that hospice care is intended to supplement caregiving
provided by families or other loved ones, so Medicare will not
cover primary caregiving. For those who don’t have family or other
loved ones to provide care, hospices will work with the patient
to find the care they need to be safe at home or help them move
to another setting. New long-term insurance policies also may
cover these caregiving expenses when Medicare doesn’t. |
| Discussion
Questions: |
- Do the
great majority of people have financial coverage for hospice
care in the U.S.? What are some of the financial impacts experienced
by the families of those caring for dying persons?
- Do all
dying persons experience similar responses to impending demise
or is each person unique? Elizabeth Kubler-Ross proposed five
stages preceding death, denial, anger, bargaining, depression,
and acceptance. Discuss the complexities of the dying experience
and how making assumptions about the experience can potentially
be damaging.
- How long
does the typical hospice patient receive care? Consider some
of the pros and cons of the timing of entry into hospice care.
Would you want to receive such care for many months or only
in the final days or weeks?
- If you
were faced with a terminal illness, which hospice services would
you find most valuable? Which would you care less about? Consider
the needs of your family and caregivers.
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| Points
and Observations:
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-
Imagine yourself in Pat’s position. Consider whether you would
want to push for continued curative treatment for 49 year-old
Christie, in the face of her continued decline. What would you
want for yourself in her situation, hospice and palliative care
or continued aggressive chemotherapy? Should this be an either/or
choice?
-
Pat and Christie were initially torn about whether to change
her orders to “do not resuscitate”. After learning what was
involved and the low probability of success they decided against
resuscitation. What factors would you consider if you were faced
with her situation? Would you want to involve family in the
decision?
|
| References: |
- Beresford,
L. (1993). The hospice handbook: A complete guide. Boston:
Little, Brown. This
book is a guide to hospice care in the U.S. presented from the
consumer's perspective. It addresses important questions about
selecting a hospice, what services to expect, how care is delivered,
and how hospice care developed.
- Lattanzi-Licht,
M., Mahoney, J., and Miller, G. (1998). The hospice choice:
In pursuit of a peaceful death.
New York: Firestone, Simon & Schuster.A
gracefully written book on the essential nature of hospice care.
Stories of care giving are interspersed with didactic information
addressing important factors in program operation and care delivery.
The official book on hospice care of the National Hospice and
Palliative Care Organization.
- Stoddard,
S. (1992). The hospice movement: A better way of caring for
the dying.
(Rev. ed.). New York: Vintage Books.
This book chronicles the emergence of the hospice movement in
the 1970s and 1980s. It includes history, descriptions of seminal
hospice program operations, and resources.
- Byock,
I. (1997). Dying well. New York:
Putman. An
excellent collection of stories about the possibilities for
growth at the end of life. Stories are richly developed to engage
any reader in a deeper understanding of living, the impact of
life threatening illness, and how the experience can be transformative.
- Connor,
S. (1998). Hospice: Practice, pitfalls and promise. New York:
Taylor & Francis. An
up-to-date presentation of the hospice movement in the U.S.
This book includes a detailed description of how hospices operate,
the current challenges facing hospices, and recommendations
for future success. Case examples illustrate important material.
A good introduction to the field for hospice workers and others
interested in end-of-life care.
- Jaffe,
C., & Ehrlich, C. (1997). All kinds of love: Experiencing
hospice.
Amityville, NY: Baywood. A
moving description of hospice care from a hospice nurse's perspective.
Rich case examples with details on how to deliver care in a
deeply compassionate manner.
- National
Hospice and Palliative Care Organization. (2000). Hospice
standards of practice. Alexandria,
VA: Author.
These are the definitive standards for provision of excellent
hospice care in the U.S. Ten chapters each with principles,
standards, and examples of compliance for each. A must read
for anyone wanting to understand, establish, or operate a hospice
program. Available from the NHPCO (Item No. 711077).
- Saunders,
C., & Kastenbaum, R. (1997). Hospice care on the international
scene.
New York: Springer. This
book summarizes how hospice and palliative care programs are
developing around the world. The editors include the founder
of the modern hospice movement and a psychologist who is renowned
for writing on death issues.
- National
Hospice and Palliative Care Organization. (2001). Hospice
care in nursing facilities: An educational resource for effective
partnerships in end-of-life care.
Alexandria, VA: Author. A
two volume 13-module training curriculum that teaches the fundamental
principles and benefits of providing hospice and palliative
care in nursing facilities. Includes over 800 pages of training
materials in three ring binders and 2 CD set with powerpoint
slides and handouts. Available from the NHPCO (Item No. 70330).
- Fairview
Health Services. (1999). The family handbook of hospice care.
Minneapolis:
Fairview Press. An
easy to read handbook that addresses questions about treatment,
hospice services, home care, coping, insurance issues, care
giving, pain control, estate planning, grief, faith and spirituality.
Written by staff of the Fairview Hospice.
|
| Links: You must be connected
to the internet for these links to work. |
| HospiceWeb
Offers
a message board, a list of answers to frequently asked questions
(FAQs) about hospice and links to numerous hospice-related sites
throughout the world.
www.hospiceweb.com
American Hospice Foundation
Includes a collection of articles with practical information for
the dying or the grieving. Offers “Grief at School Training Guide
& Video” to help teachers respond to grieving children and
on-site training workshops.
2120 L Street, NW, Suite 200
Washington, DC 20037
(202) 223-0204
www.americanhospice.org
Hospice
Foundation of America
The site provides guidelines for choosing hospice, tips for dealing
with grief and other consumer resources, such as a collection
of hospice readings and Web links. Call the foundation to find
a hospice near you.
2001 S Street, NW, Suite 300
Washington, DC 20009
(202) 638-5419 or 1-800-854-3402
www.hospicefoundation.org
American
Academy of Hospice and Palliative Medicine
Includes a selection of links to general hospice informational
sites.
4700 W. Lake Ave.
Glenview, IL 60025-1485
(847) 375-4712
www.aahpm.org
The
Hospice and Palliative Nurses Association
Check on background and credentials for hospice nurses.
Penn Center West One, Suite 229
Pittsburgh, PA 15276
(412) 787-9301
www.hpna.org
National
Hospice Foundation
Informs the public about the quality end-of-life care that hospice
provides;
including information on choosing a hospice and communicating
your
end-of-life wishes.
1700 Diagonal Rd, Suite 300
Alexandria, VA 22314
(703) 516-4928
www.hospiceinfo.org
National
Hospice and Palliative Care Organization
Offers a hospice database and provides statistical and educational
material about hospice care. Or call the toll-free HelpLine at
(800) 658-8898 to find a hospice near you.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500
www.nhpco.org
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