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Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
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OCR for page 1
M
Improving
Palliative Care
We can take better care
of people with cancer.
OCR for page 2
What is palliative care?
Palliative care is the active total care of the body, mind, and
spirit. It involves giving support to the entire family. The
purpose of palliative care is to prevent or lessen the severity
of pain and other symptoms and to achieve the best quality
of life for people dying or suffering from a long-term disease.
It means treating them as whole persons, not just as people
"Even the simple with medical problems. Palliative care acknowledges that
things mean a lot. people with cancer may need help to:
· Take care of their pain.
My nurses help me · Meet their emotional needs.
keep as comfortable · Get the support they and their families may need.
· Work through spiritual issues.
as I can People who have cancer may benefit from palliative care
possibly be." from the time they are told they have cancer, throughout
treatment, and especially near the end of life.
Nadine, 82
Palliative Care: Palliative care means making sure a
person has what he or she needs to be as comfortable as
possible throughout the course of illness. It may mean:
· Giving medicines for pain, anxiety,
and constipation.
· Treating tumors with radiation to make it easier to
breathe and swallow.
· Helping people get the emotional support they and
their families need.
End-of-Life Care: End-of-life care means meeting the
needs of people as they near death. When a person is
dying, different kinds of needs may become important.
For example, the person may need help working
through closure with family members or planning
for death.
Hospice: Hospice is a program that delivers palliative
care to people who are dying and need treatment to
prevent or manage pain and other symptoms, even
when cure is no longer possible.
OCR for page 3
We can take better care
of people with cancer.
As a society, we have made amazing gains in being able to
detect and treat cancer. Even so, about half the people who
are told by their doctors that they have cancer will die within
a few years. This means that every year about one million
people find out that they have cancer and are treated, and
"When my doctor
about one-half million people die of cancer nationwide.
first told me I had
So far, most cancer research and treatment has focused on
trying to cure cancer. There hasn't been much attention paid cancer, I was
to other important issues, such as pain control and taking
overwhelmed. There
care of other troubling symptoms. Now more and more
people are aware that there are cancer care needs beyond was so much I needed
just trying to cure it.
to know. There were
Attention is now being paid to helping people with cancer
so many decisions I
cope better with the problems that may arise when people
are being treated or as they approach death. had to make. I didnt'
Palliative care should ensure that people: know how to cope."
· Keep the best quality of life they can have, for as long
as they can. Shirley, 68
· Have the freedom to choose what treatments they want.
· Get treated to prevent pain and other symptoms, or to
control them as best as can be done.
OCR for page 4
People with cancer
have many symptoms.
Some symptoms are from the cancer itself. Other problems
may be caused by treatments they take to fight the cancer.
This is true for those who are cured of their cancer and for
"Watching my those who are not. For those who aren't cured, these
symptoms usually grow worse in the months and weeks
moms' condition before they die.
deteriorate was People with cancer may:
hard on all of us. · Feel pain.
· Have a hard time breathing.
It helped to know · Feel nausea.
that we could help · Feel anxious, worried, or confused.
People with cancer should be able to get care for these and
her keep a sense of other problems. They and their families should have support
dignity. We were to get through the difficult times they may face.
able to help her do Treating symptoms and lessening the burdens on families
allows patients to:
what she needed to · Keep a sense of control.
do before she died." · Relieve old conflicts in their lives.
· Strengthen ties with their loved ones.
Susan, 52, · Deal with spiritual matters.
daughter of Joyce, 77
OCR for page 5
Why don't people get
the care they need?
For many people there are barriers that stand in the way of
getting palliative care when they need it.
· Palliative or hospice care is often separated from
hospital care. It may not be paid for in the same way
as hospital care.
· Health care providers are often not trained in ways to "I knew the care
give palliative care or in how to take care of the
my dad was getting
symptoms of people with cancer.
· Good standards of care for people with cancer, wasnt' dealing with
especially those dying of cancer, have not yet been
what he really
adopted nationwide.
· It may be especially difficult for African-Americans needed. I didnt'
and people from other underserved communities to
know where to go
get the care they need.
· People don't know where to get the information they for advice."
need about comfort and end-of-life care.
· There is little funding for research to find better ways Tom, 36,
of relieving the symptoms of cancer and its treatment son of Tom, Sr., 65
at the end of life. There is little funding to train health
care providers to give that kind of care.
OCR for page 6
Palliative care should not be
separated from medical treatment.
Palliative care can improve the lives of people with cancer
and their families. It is important to give palliative care
along with other medical treatment. At this point, people in
the United States can get either medical care to treat their
cancer or palliative care, but often not both. Even when
people can get comfort care for their symptoms, there may
"Getting my aunt
not be much attention paid to their emotional, family, or
the hospice care she spiritual needs. Individuals from low-income families or
from various ethnic groups are even less likely to get the
needed was such
care they need.
a struggle. It
Many people who are dying are able to get hospice services
shouldnt' have to based on palliative care ideals. Hospice patients can benefit
from having:
be like this."
· A team who works together to plan their care.
Veronica, 25, · A nurse who cares for their medical needs.
niece of Maria, 43 · A counselor who supports patients and their families.
· An educator who teaches families what they need
to know.
· A chaplain who helps guide them through
difficult times.
Hospice patients can also get needed medicines, medical
equipment, and supplies.
Hospice services are covered by most private insurance
and by Medicaid (in most states) and by Medicare. Because
cancer often strikes older people, Medicare usually pays for
it. The Medicare hospice benefit covers pain medication
and other medicines needed. However, Medicare allows
patients to enroll for hospice services only if they are
expected to live less than six months. In addition, patients
can't get hospice services if they also want to try to fight the
cancer to survive. People are often not willing to give up on
treatment until they are very close to death.
More than half of all cancer patients who are dying have
used some hospice services. But people often wait until the
very last days to sign up for hospice services. Some doctors
OCR for page 7
or families may try to shield patients from the realities they
are facing. The strict rules of Medicare also add to the "At the beginning
problem. Because of these and other reasons, people who of Jasons' hospice
are dying don't get the full benefit of having palliative care in
the final months and days of their lives. care, his pain was
And of course, not everyone with cancer has Medicare. For easily controlled by
example, parents of children with cancer often have a hard low-dose IV
time finding and paying for good hospice care. Many health
insurance plans do not pay for some hospice services, like morphine. As the
the counseling or other kinds of help families need. days went on, the
Special needs of children with cancer: pain worsened.
Children with cancer have special needs that must be When the pain hit,
addressed. They cannot be treated as "small adults."
it would take us over
Children with cancer and their families need
palliative care, hospice, and end-of-life care. Much an hour of him
of this care consists of frequent counseling sessions so
screaming to get
that the child and the family can fully understand the
child's condition and what choices are available. it under control.
Doctors and other caregivers must be able to counsel
Knowledge of how
the parents alone, as well as the child and brothers
and sisters. This kind of care should be paid for by to manage pain
health insurance, just like chemotherapy. But more
in children is
often than not, there is little or no payment for these
important discussions. desperately lacking."
Research also needs to be done. For example:
Angela, 34,
· When a child is so ill that he or she may die, mother of Jason, 7
parents need information to help them prepare
and to help them make good decisions.
Research is needed to find out when it
would be best to offer this information.
· Children with cancer may have severe pain.
Research needs to be done to figure out what
treatments work best for children.
OCR for page 8
Health care providers need
better training in palliative care.
If we want to improve the way we deliver palliative care, we
need to improve how we train our care providers. The
information we now have about palliative care and its
importance is fairly new and needs to be incorporated into
"I was grateful to training programs. Doctors and other health care providers
need to be trained to manage pain and other symptoms.
have had the chance They need to learn how to care for people living with and
to take course work dying from cancer as well as when and how to refer them to
the care they need. The experiences of patients in pain and
in palliative care. dying need to be incorporated into medical education.
It has made me much More textbooks and courses need to be developed on the
subject of palliative care.
more sensitive to the
The truth is that most new health care providers leave their
needs of the dying training programs with little or no experience in caring for
and their families." dying patients. In many cases, these new doctors and nurses
may have had only a few lectures on the subject. A few
schools do have full-length courses on comfort and end-of-
Marcus, 32, oncologist
life care. Students can decide whether or not they want to
attend them, but many do not because it is not required.
Most do not get the training and experience they need.
Here is what is needed:
· More health care providers are needed who
understand palliative care.
· Textbooks, other written materials, and courses on
palliative care need to be developed.
· Training programs need to be coordinated for the
many kinds of professionals who care for
dying patients.
· Palliative care experts should guide decisions about
what doctors need to learn in residency programs.
· Questions about palliative care should be added to
licensing and certifying exams.
OCR for page 9
Standards for palliative care
need to be adopted and widely used.
Health care providers, hospitals, and health plans need to "We are looking
plan how they will give palliative care to people with
to institute an
cancer. People with cancer should be able to expect that:
· They will be able to help make decisions about evaluation system
their care.
and are
· Their symptoms will be managed well and their pain
will be well controlled. beginning to
· They will be able to build trust and rapport with
track what people
their health care providers.
· They will be satisfied with their care most of the time. really think about
· All the providers giving care will coordinate
their care. We
their services.
hope to be able to
make important
and needed
changes in the
way we
deliver care."
Rosana, 44, nurse
OCR for page 10
All people need better
access to palliative care.
It is important that all people have access to palliative care.
The need is great in many underserved communities, yet
palliative care is often not available. For example, African-
Americans have a higher rate of certain cancers and of death
"My mother had a from cancer than do whites. Yet African-Americans use
painful bone cancer. hospice care less often than other groups. African-Americans
and other ethnic communities have a long history of unequal
I couldnt' buy her treatment in our health care system. There may be no
prescribed painkiller hospice care available in low-income, inner-city, or rural
areas. Many drug stores in these areas do not stock strong
at my local drug pain medications.
store. It took me There is a huge need for palliative care in ethnic
hours on the bus to communities. Another issue is that people from various
cultures have differing beliefs and traditions regarding care of
get what she needed." the dying. Doctors and nurses need to give care that respects
these customs. As a society, we need to:
Bernadette, 45,
daughter of · Train people to give respectful care.
Wilhelmina, 66 · Research the needs of underserved ethnic groups
when it comes to end-of-life care.
· Find ways to make sure all people get the care
they need.
OCR for page 11
People need help in finding out
about palliative care and
end-of-life care.
When people find out they have cancer, they often look for
information about what caused their cancer, what treatment
choices they have and what is going on in research. People "I didnt' know
can get this information from many places: where to get the
· Health professionals
· Family and friends information I
· Cancer support groups needed to make
· Religious leaders
· Printed materials good choices for
· Telephone hotlines my care. It was
· The Internet
Most materials focus on curing cancer and living as a really hard to
survivor. There needs to be more information provided understand what
about palliative and end-of-life care. Booklets and other
written materials must describe palliative care and the last my options were.
stages of cancer, as well as treatment and prevention. I really needed it
These materials must also be written at appropriate reading
levels and in the languages that people feel most broken down
comfortable reading. for me."
People rely on their health care providers for information
about end-of-life care. But everyone, health care providers Jesse, 62
included, finds it hard to talk about death and dying.
Health care providers must be trained and given the
experience they need to sensitively talk about end-of-life
care--and to listen to patients and families, in turn. Both
health care providers and families need help in finding
acceptable ways to talk about end-of-life care.
OCR for page 12
There needs to be more funding
for palliative care research
and training.
Billions of dollars are spent in understanding why cancer
happens and in finding cures and treatments. But little
money has been put into research to help take care of the
"We need to fund physical and emotional pain--and other symptoms--that
more research in people have living with and dying from cancer. This
research would greatly benefit people who suffer from
palliative care cancer. But it would also benefit everyone who has any
options. We need serious illness or is dying. The cancer research community
can lead the way.
to make training in
The medical community now has new ways to understand
palliative care a the symptoms people experience. For example, now we can
priority for our take images of the brain. This can help us study pain and
depression. We can see how treatment helps. Many more
health care new treatments could be developed. These treatments could
providers." give us better control of most of the symptoms people with
cancer have. To do this, the government must give the
Joseph, 42, professor needed funding.
Among many other issues, we need to advocate for more
research in:
· How to communicate better with patients who are
dying, as well as with their families.
· New ways to control the symptoms of the late stages
of cancer and the side effects of cancer treatments.
· How to deal with the emotional, social, and financial
issues facing families.
In addition, more dollars need to be spent developing and
providing the education and training programs health care
providers need in order to give good palliative care to all
their patients.
OCR for page 13
There is hope.
Palliative care is starting to get the attention it needs. Some
new projects are testing innovative ways to give and pay for
palliative care all the way through the course of an illness.
People are coming up with good ideas that may work
very well.
"Palliative care
Together we can break down the barriers to getting
has made such a
excellent palliative and end-of-life care to the people who
need it. We can find new ways of managing the issues that difference in the
people with cancer and their families must face. We can
day-to-day stuff I
make things better for people with cancer today and for
those who may face it in the future. We can find better have to deal with.
ways to help patients newly diagnosed with cancer, those
It makes things
dealing with treatment and recovery, as well as those coping
with end-of-life issues. bearable."
After studying the state of palliative care in the United
States, the National Cancer Policy Board developed Fred, 72
recommendations to improve the system. On the next few
pages we summarize their recommendations to doctors, the
government, and others who can influence the quality of
palliative care.
OCR for page 14
1. Create Centers of Excellence in
palliative care.
Around our country, the National Cancer Institute (NCI)
should name certain cancer centers as Centers of
Excellence in palliative care. These centers will:
· Give the best palliative care possible.
· Carry out research in palliative care. They could test
"Having a cancer new and current care guidelines and create new
guidelines that may work better.
center nearby-- · Train health care providers in their region.
where theyve made
' Here are examples of other things these centers could do:
palliative care a · Make sure that caregivers in nearby hospitals learn
about better ways to treat patients and their symptoms.
priority--has really · Find ways to make it easier for all people to get
helped me in my palliative care. This may mean setting up outreach
programs or training providers in diverse
practice. I know I neighborhoods.
can call them for · Give fellowships in palliative and end-of-life care for
cancer to health care providers and researchers.
the latest about · Keep local hospice staff up to date on new ways to
treating my give palliative care and to control pain and other
symptoms.
patients'
symptoms."
Project ENABLE: Educate, Nurture, Advise, Before
Aaron, 49, M.D. Life Ends is a good example of how a Center of
Excellence might work. The Dartmouth-Hitchcock
Medical Center's Project ENABLE team has moved high-
quality end-of-life care into three rural communities in
New Hampshire. The ENABLE team makes sure patients
get proper palliative care throughout their illness.
Teaching the patient is a big part of the program.
Cancer patients and their families are encouraged to
learn how to find the care they need, plan ahead, and
keep control of their lives and important choices. The
project has shown that "patients need not be abandoned
when a cure no longer seems possible."
OCR for page 15
2. Fund special projects to show how services
could and should be given.
The government should fund projects to help develop new
ways to pay for and give palliative care.
Each symptom faced by cancer patients needs more
research. Here are examples of just a few of the many
needed research areas. We need to:
· Find out why so many patients have pain, even "Were working to
'
though current pain medications are excellent. get new legislation
· Find more new treatments for pain.
· Test products to improve appetite. in our state to
· Find new ways to cope with fatigue. make it possible for
3. Pay for the true costs of palliative and insurance to cover
end-of-life care. palliative care. I
It takes time to work with dying persons and their families. know its' going to
This is especially true of dying children and their parents.
There is a need to spend time talking through everything help make a big
that is going on with the family. Health care team improvement in
members must talk with each other often. A doctor may
get paid about the same for a long, difficult visit like this as the kind of care
for seeing a child with a sore throat. Insurers should make families get."
sure they pay fairly for this special type of care and the
time it takes to provide it.
Rebecca, 42, activist
OCR for page 16
4. Give people the information they need about
palliative and end-of-life care.
Health care providers and groups providing information
about cancer prevention and treatment should also provide
information about palliative and end-of-life care. People
should have information about palliative care all through the
"The health care course of their disease. People also need to know what to
educator walked me expect at the end of life.
through my choices All written materials should:
· Be written in plain language so they can be
and explained easily understood.
everything really · Meet the needs and values of the people who will
read them.
well. It was Booklets and other kinds of written materials should be
important to me made especially for:
· Children with cancer and their families.
that my family · People of different ethnic backgrounds and beliefs.
knew what Other ways of getting information to people, such as videos,
awareness campaigns, or television programs need to
to expect." be created.
Hana, 62 5. Create standards of care to help health care
providers deal with pain and the other problems
people with cancer face.
The health care profession is responsible for creating
standards of care that spell out what good palliative care
means. Professional societies that represent doctors, nurses,
and social workers in cancer care should work together to
create, test, and use the best possible practices in the care
they provide to people with cancer throughout their
treatment and at the end of life.
OCR for page 17
6. Make sure that palliative care and end-of-life care
improves.
We need to:
· Develop a standard way to measure the quality of
palliative care and end-of-life care.
· Support research and projects that show how to give
excellent palliative and end-of-life care. "My family was
brought closer
We can make a difference!
together through
Cancer is something that affects us all. We shouldn't let
this crisis. The
another day pass in which cancer patients suffer needlessly.
The tragedy is that we know how to provide palliative care loving, respectful
and relieve much of the pain people endure. Now is the
care we got really
time for change. All of us must work together. Our doctors
and nurses, our insurers, and our government officials need made a difference
to work together to give cancer patients the best care
to all of us."
possible. We must all advocate for good palliative care.
Each of us can work to make a difference. Together, we can Chris, 53
create a caring, respectful healthcare system that people can
trust to serve them and their loved ones as they go through
the crisis of cancer.
OCR for page 18
About this booklet and the
National Cancer Policy Board:
This booklet is based on a report called Improving Palliative Care for Cancer put
out by the National Cancer Policy Board (NCPB). The board is made up of
medical professionals who are national experts in the treatment of cancer and in
cancer research, as well as individuals representing the public. The NCPB is a
joint effort of the Institute of Medicine and the National Research Council of the
National Academies.
When the Board began to study palliative care, it asked for input from experts all
around the United States. These experts wrote chapters on subjects ranging from
the costs of palliative care, to the way doctors, nurses, and social workers learn
about palliative care when they are in training. The chapters described the
current state of the art in palliative care and identified opportunities for
improvement. The NCPB used this information to identify problems, chances
to do better, and the steps that the government and others could take to improve
palliative care for people with cancer.
This booklet shares with the public what the NCPB learned about the state of the
art in palliative care and what it recommended to the policymakers. The premise
of the booklet is that the more everyone understands about the problems and
possible solutions, the more effective we can all be in making the health care
system better for people with cancer and the families who love them.
To purchase or review a copy of the original report, Improving Palliative Care for
Cancer, visit the National Academies Press website at www.nap.edu. This book-
let is also available at that website.
OCR for page 19
Background Paper Authors National Cancer Policy Board
This summary and the recommendations presented Arnold J. Levine, Ph.D., (Chair), President, The
in this report are based on the work of the experts Rockefeller University, New York
listed below: Joseph Simone, M.D., (Vice Chair), Medical
Lisa Chertkov, M.D., Memorial Sloan-Kettering Director, Huntsman Cancer Foundation and
Cancer Center, New York Institute, University of Utah, Salt Lake City
Charles S. Cleeland, Ph.D., University of Texas Ellen Stovall (Vice Chair), Executive Director,
M.D. Anderson Cancer Center, Houston National Coalition for Cancer Survivorship, Silver
David R. Freyer, D.O., DeVos Children's Hospital, Spring, MD
Grand Rapids Diana Petitti (Vice Chair), M.D., M.P.H., Director,
Sarah Friebert, M.D., Case Western Reserve Research and Evaluation, Kaiser Permanente of
University, St. Vincent's Mercy Children's Hospital, Southern California, Pasadena
Hospice of the Western Reserve, Chicago Tim Byers, M.D., M.P.H., Professor of Epidemiology
Joanne M. Hilden, M.D., The Cleveland Clinic and Program Leader, Clinical Cancer Prevention
Foundation, Cleveland and Control, University of Colorado
Bruce P. Himelstein, M.D., University of Health Sciences Center, Denver
Pennsylvania School of Medicine, Children's Vivien W. Chen, Ph.D., Epidemiology Section Chief
Hospital of Philadelphia and Professor, Louisiana State University Medical
Jimmie C. Holland, M.D., Memorial Center, New Orleans
Sloan-Kettering Cancer Center, New York Susan Curry, Ph.D., Director, Center for Health
Javier R. Kane, M.D., University of Texas Health Studies, Group Health Cooperative of Puget Sound,
Science Center, Christus Santa Rosa Children's Seattle
Hospital, Christus Santa Rosa Hospice, San Antonio Norman Daniels, Ph.D., Professor of Philosophy,
Aaron S. Kesselheim, M.D., University of Pennsyl- Tufts University, Boston (through April 2001)
vania Kathleen Foley, M.D., Director, Project on Death in
Joanne Lynn, M.D., RAND Center to Improve Care America, The Open Society and Memorial Sloan-
of the Dying, Washington, D.C. Kettering Cancer Center, New York (through April
Ann O'Mara, R.N., Ph.D., Bethesda, MD 2001)
Richard Payne, M.D., Memorial Sloan-Kettering Thomas Kelly, M.D., Ph.D., Professor and
Cancer Center, New York Chairman, Department of Molecular Biology and
Joan M. Teno, M.D., M.S., Brown University School Genetics, The Johns Hopkins University School of
of Medicine and Department of Community Health, Medicine, Baltimore (through April 2001)
Providence Mark McClellan, M.D., Ph.D., Assistant Professor of
Economics, Stanford University (through March
Study Staff 2001)
William McGuire, M.D., Chief Executive Officer,
Hellen Gelband, Study Director
United Health Group, Minnetonka, MN
Florence Poillon, Editor
John Mendelsohn, M.D., President, University of
Texas M.D. Anderson Cancer Center, Houston
NCPB Staff Monica Morrow, M.D., Professor of Surgery and
Robert Cook-Deegan, Director, National Cancer Director, Lynn Sage Comprehensive Breast Program,
Policy Board (through August 2000) Northwestern University Medical School, Chicago
Roger Herdman, Director, National Cancer Policy Nancy Mueller, Sc.D., Professor of Epidemiology,
Board (from September 2000) Harvard University School of Public Health, Boston
Ellen Johnson, Administrator (through July 2000) Pilar Ossorio, Ph.D., J.D., Assistant Professor of Law
Nicci T. Dowd, Administrator (from August 2000) and Medical Ethics, and Associate Director for
Jennifer Cangco, Financial Associate Programming, Center for the Study of Race and
Ethnicity in Medicine, University of Wisconsin Law
School, Madison
Editing, Design, and Translation Cecil B. Pickett, Ph.D., Executive Vice President for
California Family Health Council, Inc. Discovery Research, Schering-Plough Research
Donna Bell Sanders, MPH, editor Institute, Kenilworth, NJ
Sue Ellen Parkinson, design John Seffrin, Ph.D., Chief Executive Officer,
Ildiko Tenyi, Spanish-language adaptation American Cancer Society, Atlanta
Sandra Millon Underwood, R.N., Ph.D., ACS
Funding Oncology Nursing Professor, University of
Wisconsin School of Nursing, Milwaukee
This edition was funded by the
Frances Visco, President, National Breast Cancer
Robert Wood Johnson Foundation.
Coalition, Washington, D.C. (through April 2001)
Susan Weiner, Ph.D., President, The Children's
Cause, Silver Spring, MD
OCR for page 20
We can make a difference.
We can make sure that people with cancer get
the help and support they need to:
· Take care of pain and other symptoms.
· Meet their emotional needs.
· Work through spiritual and physical distress.
· Keep the best quality of life they can have
for as long as they can.
· Strengthen ties with their loved ones.
This is what palliative care is all about. We can
improve palliative care for people with cancer.
We can work together to help people get the care
they need.
Copyright 2003 by the
National Academy of Sciences.
All rights reserved.
Printed in the United States.
Representative terms from entire chapter:
hospice services