assignment in Cnu

1. What Is Palliative Care?
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with
serious illnesses. It focuses on providing patients with relief from the symptoms, pain,
and stress of a serious illness—whatever the diagnosis. The goal is to improve quality
of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses and other specialists who work
together with a patient’s other doctors to provide an extra layer of support. It is
appropriate at any age and at any stage in a serious illness and can be provided along
with curative treatment.
Improves Quality of Life
Palliative care treats people suffering from serious and chronic illnesses such
as cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive
pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic
Lateral Sclerosis (ALS) and many more.
Palliative care focuses on symptoms such as pain, shortness of breath, fatigue,
constipation, nausea, loss of appetite, difficulty sleeping and depression. It also helps
you gain the strength to carry on with daily life. It improves your ability to tolerate
medical treatments. And it helps you have more control over your care by improving
communication so that you can better understand your choices for treatment.
A Partnership of Patient, Specialists and Family
Palliative care is a team approach to care. The core team includes doctor, nurse and
social work palliative care specialists. Massage therapists, pharmacists, nutritionists,
chaplains and others may also be part of the team.

2. The team spends as much time as necessary with you and your family. They become a
partner with you, your family and your other doctors. They support you and your
family every step of the way, not only by controlling your symptoms, but also by
helping you to understand your treatment options and goals. Working together with
your primary doctor, the palliative care team provides:
1. Close communication
2. Expert management of pain and other symptoms
3. Help navigating the healthcare system
4. Guidance with difficult and complex treatment choices
5. Emotional and spiritual support for you and your family
Talking to Your Doctor
If you or a loved one has been diagnosed with a serious illness, you may benefit from
palliative care. Speak to your doctor and ask for it. Bring the handout with you, since
not all doctors are familiar with palliative care and its many benefits.
Disease Types
Examined Lives: Truth at the end of life (shared via
TedMed)
December, 2013
When facing a serious illness, can truth be the best medicine of all?
Elaine Waples, a cancer patient facing difficult odds, thinks so. In her
article,Examined Lives: Truth at the end of life, Elaine explains how honest
discussions between herself and her husband, her doctors, her family, and her
friends have given her strength.
Elaine says that communication, which is one of the cornerstones of palliative
care, has allowed her and her loved ones to enjoy the simple joys of life: “We
look to the small things we have known for decades that have become precious

3. to us now: a walk on the beach, a Saturday matinee movie, sharing a bowl of ice
cream, holding hands as we go to sleep at night.”
Click here to read her powerful story in its entirety.
Selma’s Story: Despite a Recurrence, I’m Not
Surrendering My Life to Cancer (via The ASCO Post)
August, 2013
This is the first time I’m going public with the fact that I have advanced ovarian
cancer. I thought I could avoid the fate of my mother and her mother, both of whom
died of ovarian cancer in their 50s, and live well past my 60s and even 70s. But at 58,
I’ve had to accept that that is not likely. I live and plan my life in shorter increments
now and hope that new therapies will continue to buy me more time.
Fateful Diagnosis
I did everything I could to avoid getting ovarian cancer. When I was diagnosed with
breast cancer in 1983 at the age of 28, it seemed that if I didn’t take control of my care
I would die. For 1 year prior, I first felt a painful, palpable hard mass in my left breast,
I couldn’t get a doctor to take my suspicions seriously and biopsy the tumor. Every
doctor I saw insisted I was too young to have breast cancer.
Finally, a surgeon I knew agreed to biopsy the mass, and the pathology report showed
it was malignant. The diagnosis changed the course of my life. I left college, where I
was studying medical sociology, and underwent aggressive treatment to cure my
cancer, including a regimen of CMF (cyclophosphamide, methotrexate, and
fluorouracil), and a lumpectomy, followed by radiation. I also founded Vital Options,
the first advocacy organization for young adults with cancer.

4. In 1999, when BRCA1/2 mutation testing was still investigational, my father, older
sister, and I were screened, and both my sister and I tested positive. We repeated the
test again after it became available for clinical use. The miracle of this story is that all
four of my nieces are negative for theBRCA gene mutation. Since I don’t have
children, this terrible genetic legacy that has plagued my family for generations has
come to an end.
Palliative Care Is Transforming My Life
Ten years ago—hoping to escape my genetic fate, and in celebration of being cancer-
free for 20 years—I decided to have a prophylactic oophorectomy. Although the
decision was a difficult one, I wanted to reaffirm my life and be as proactive as I
could to stay healthy. But when I awoke from the surgery, I was told that I already
had confined, very early-stage ovarian cancer.
I was treated with carboplatin and paclitaxel, and we all expected a good outcome.
Unfortunately, multiple localized lesions have appeared over the years, requiring
various therapeutic approaches, including an experimental protocol with a PARP
inhibitor.
Despite these efforts, last year the cancer spread to my lungs. Although those lesions
responded quickly to treatment, a mass in my psoas muscle and near my bowel caused
me so much pain, I was referred to a palliative care specialist for pain management.
The experience has given me a good deal more than just pain relief. I now recognize
in a very personal way the great value palliative care brings to the continuum of
cancer care. Palliative care connects the physical and psychosocial dots around the
whole patient. It has transformed the quality of my life and enhances the active
clinical treatment I receive from my oncologist.
While I know that I will most likely follow in the footsteps of my grandmother and
mother and never see old age, I’m not giving up. I am also finding new meaning and

5. purpose in this phase of my cancer journey. I’m currently on a regimen of oral
cyclophosphamide and infusions of bevacizumab (Avastin), and I’m pleased that early
indications suggest the combination may be slowing the spread of cancer.
Going Public
The transition to palliative care has made all the difference in my ability to maintain
my fast-paced career and continue to function at a high level in all areas of my life.
For the first time in 30 years, cancer is almost incidental to my care. Now, the quality
of my life is paramount.
I decided to go public with my ovarian cancer recurrence because I felt an obligation
to help other cancer survivors as well as physicians understand that the transition to
palliative care does not mean surrender. My experience is proof that patients can live
with advanced disease and still be a vital force, maintaining control of their lives.
I think many people associate palliative care with end-of-life hospice care, and that
misperception needs to change. The best way to do that is by introducing the subject
of palliative care into standard cancer care earlier on—soon after the initial
diagnosis—and certainly by integrating the two practices as soon as a patient is
diagnosed with metastatic disease.
In addition to my first-hand experience with the benefits of palliative care, I’ve also
become educated about the importance of increasing the understanding and use of
palliative care through the work I do as a member of C-Change, an organization
dedicated to eliminating cancer as a major public health problem, and its National
Conversation Subcommittee of the Assuring Value in Cancer Care Advisory
Committee, a collaborative effort by ASCO and C-Change. Our efforts are focused on
stimulating a national dialogue about palliative and hospice care.
Through this work and my activities with Vital Options, I realize what a wonderful
opportunity I have to be the messenger to both patients and physicians about the

6. importance of demystifying palliative care by incorporating it into the medical
oncology discussion. With routinely accessible palliative care, all of the patient’s
needs—physical, emotional, practical, and spiritual—can be met.
Living a Full Life
Coming to terms with having metastatic disease is difficult, and while I am fortunate
to still be able to receive beneficial treatment with the possibility of a longer life, I
must also be realistic: My disease may one day lead to that transition from palliative
care to hospice care. But I’m not there yet. Although I can’t control the progress of
my cancer, I can control how I choose to cope with the seriousness of my situation.
My work has given my life meaning, and I am grateful to have the opportunity to tell
my story and, hopefully, educate both survivors and oncologists about the possibilities
of living a full life with advanced cancer.
Everything that happens to me now is a gift. ■
Selma R. Schimmel is the Founder and CEO of Vital Options International
(vitaloptions.org), a cancer communications organization, which produces The Group
Room and Advocacy in Action video programs. Ms. Schimmel lives in Southern
California.
Palliative Care Is About Quality Of Life Throughout
The Cancer Journey (via The American Cancer
Society)
August, 2013
by Dr. Len August 09, 2013
A newspaper story last week caught my eye when it headlined: “Senators Revive Push
for End-of-Life-Care Planning.” It reported on new legislationmaking the rounds in
Washington to address care planning for those with advanced illnesses.

7. You remember “end of life care planning,” don’t you? It was part of theAffordable
Care Act debate several years ago, and quickly became translated into “death
panels” where opponents made the argument that the government wanted to help
people decide not to receive needed treatment. That was a moment that will live in my
memory forever, and it’s not a pleasant memory.
So here we are with this new bill, and a headline that suggests we may be headed
down the same path once again. This time, however, I hope we can have a more
rational and appropriate discussion about an issue that is rapidly evolving in cancer
care, supported by medical evidence and medical professionals, not to mention
organizations like the American Cancer Society who believe the time has come to
engage our patients, their families and caregivers, and the nation at large in
understanding the need for compassion as we care for patients with serious illness,
including cancer.
First of all, the bill in question is not just about end of life. It provides the opportunity
for patients and their families with advanced illness-such as locally advanced or
cancer that has spread to other parts of the body–to meet with a team of health
professionals and others-including among them “a chaplain, a minister, or the
individual’s personal religious or spiritual advisor”–to discuss their treatment options
and more importantly their wishes as to what kind of care they want to receive. It
helps all patients with serious disease, not just those at the end of life, plan their care
with a better understanding of how that care will impact their lives, and-yes-help them
understand what their options may be at the end of their lives should their treatment
not be successful, or if their state-of-mind would deteriorate such that they could not
make those decisions.
But the question remains: is this bill the best we can achieve? Or do we need to take a
look at the larger issue of quality of life and the appropriate role of palliative care,
especially for cancer patients? The American Cancer Society believes the world is
evolving, and so should we. This bill is a start, but we have a long ways to go.

8. Research has shown that engaging in these discussions not only helps patients plan
their care, it actually prolongs their lives. When research about that was published, I
said -and believe today-that if palliative care were a treatment for cancer, it would be
widely implemented and utilized. Well, in reality, it is a treatment for cancer, and we
should recognize that experts and teams that specialize in palliative care are an
emerging valuable and important part of the care landscape.
So if that’s the case, this bill sets us in the right direction. But in conversations with
those who are knowledgeable about these issues, I have learned that it doesn’t go far
enough. It comes down to the fact that this shouldn’t just become an issue when a
disease becomes far advanced. We need to consider making this a part of routine
cancer care far earlier, even at the time of diagnosis.
The leaders in the field are adamant that we need to move beyond the end-of-life
focus that is so closely associated with the words “palliative care.” This is no longer
about hospice, this is no longer about “terminal illness.” This is about life, and living
it when faced with serious medical challenges. This is about the quality of that life,
about participating, about setting goals and expectations of treatment, and about living
a better life under the most difficult of circumstances. This is about our personhood
and our humanity. One thing it most certainly is not about is death panels. Palliative
care principles apply throughout the cancer continuum, starting from the initial time a
patient hears the words, “You have cancer.”
This concept represents a sea-change in thinking by everyone, medical professionals
included. To make that happen, the American Cancer Society Cancer Action
Network, the advocacy affiliate of the Society, has sponsoredseveral pieces of
legislation to fund research, train health professionals, and bring national attention to
provide better patient centered care for those with chronic illnesses. Included in these
proposals are other approaches to encourage more professionals to become engaged
and lead the way to train others about palliative care, and to practice in the field of
palliative care. (You can find more information about this legislation on ACS CAN’s
website.)

9. Perhaps the goals of palliative care are best summarized in this brief comment that
appears on a short YouTube video that explains our support of palliative care research
and legislation:
“Palliative care improves quality of life for adults, children and families facing
serious illness like cancer by focusing on relief from pain, stress and other symptoms.
It is appropriate at any age and any stage and can be provided alongside curative
treatment. Palliative care is delivered by doctors, nurses, and other professionals who
work together in a team-based and person-centered approach that identifies patient
and family needs, explains treatment options, and gives people a voice in realizing
their treatment goals.”
Our hope is that by better understanding palliative care and its impact on the quality
of life of cancer patients, we can make a difficult journey a bit easier. We will need to
rely on legislation to provide some much needed support and resources to make that
happen. As we evolve our thinking, my hope is that we can expand the concept of
quality of life to embrace what it truly is, which is about the “whole person” through
the entire course of their illness. It is no longer just end-of-life.
If we can understand and appreciate that distinction, we can serve the millions of
cancer patients and survivors with the care and respect they deserve, and not consign
them to the fear of political retribution that visited past discussions of this important
and crucial issue.
Cancer and Palliative Care: A Patient’s Perspective
February, 2013
Webcast Today: PACE Cancer Perception Index
Reveals Public Knowledge and Attitudes on Cancer
January, 2013
This morning, PACE (Patient Access to Cancer care Excellence), a Lilly Oncology
initiative, released the PACE Cancer Perception Index: A Six-Nation, Public Opinion
Survey of Cancer Knowledge and Attitudes.

10. The survey, which comes in advance of World Cancer Day (February 4,) polled 4,341
individuals from six countries—the United States, France, Germany, Italy, Japan and
the United Kingdom and was commissioned by Lilly Oncology and conducted by
GfK, one of the world’s leading research companies.
There will be a webcast today (1/30) from 11:00 am to 12:00 pm EST to discuss the
findings and you can register for it by clicking
here:http://www.videonewswire.com/event.asp?id=91886
A Multimedia News Release on the survey features several resources illustrating the
findings, including an archived version of an audio webcast (available January 30
beginning at 1:30 p.m. EST)—in addition to a press release, infographic, video
interviews, survey fact sheet and PACE fact sheet.
To learn more about PACE and the PACE Cancer Perception Index, please
visitwww.pacenetworkpreview.com.
Lung Cancer and Palliative Care
September, 2012
Palliative care is specialized medical care for people with serious illnesses. It focuses
on providing relief from symptoms, pain and stress. The goal is to improve quality of
life for both you and your family. It is appropriate at any age and at any stage in your
illness and can be provided along with treatment meant to cure. (more…)
Kidney Disease, Kidney Failure & Palliative Care
September, 2012
The burdens of kidney disease and kidney failure can be profound. In addition to the
physical and emotional issues, you and your family also have to make difficult
decisions regarding your care. (more…)
HIV/AIDS & Palliative Care
September, 2012
HIV (human immunodeficiency virus) is a virus that is carried from person to person
through body fluids such as blood, breast milk, semen or vaginal secretions. As the

11. virus reproduces, it damages the immune system, which leads to illness and
infection. (more…)
Dementia & Palliative Care
September, 2012
Dementia is a deterioration of the brain. Although the disease progresses slowly, it
finally causes the brain to stop working. Families caring for a loved one with
dementia need a lot of support and assistance, and getting palliative care early is
important. (more…)
Chronic Obstructive Pulmonary Disease (COPD) and
Palliative Care
September, 2012
Chronic obstructive pulmonary disease (COPD) is a condition in which the airways in
the lungs become damaged, making it difficult for air to flow in and out. Symptoms of
the disease include shortness of breath, low oxygen in the blood, cough, pain, weight
loss and risk of lung infections. Patients may also suffer from emotional effects such
as depression, anxiety, insomnia and social isolation. (more…)
Disease Types
Congestive Heart Failure & Palliative Care
September, 2012
Congestive heart failure (CHF) is a chronic condition in which the heart is unable to
pump your blood properly. It can cause breathing problems and other symptoms, such
as weakness and swollen feet and ankles. (more…)
Cancer & Palliative Care
September, 2012
Palliative care specialists work in close partnership with your oncologist (cancer
specialist). Any person, of any age, with any type or stage of cancer can benefit from
palliative care—and the earlier, the better. (more…)
Breast Cancer and Palliative Care

12. September, 2012
Being diagnosed with breast cancer is scary. Suddenly the world is turned upside
down, and life becomes full of doctor visits, surgery, chemotherapy and radiation.
You are faced with the need to make health care decisions, plan for your future and
your family’s. You also may be suffering from pain or other symptoms such as
nausea, fatigue and anxiety. Everything feels overwhelming. (more…)
Alzheimer’s Disease and Palliative Care
September, 2012
Alzheimer’s disease (AD) is a type of dementia. Dementia means that a person has
difficulty with memory, judgment and reasoning. This might mean not recognizing
your surroundings or people familiar to you, or not being able to find the right words
or do certain tasks. The biggest risk factor for AD is age, but people under sixty can
also develop the disease. (more…)
ALS & Palliative Care
September, 2012
ALS— amyotrophic lateral sclerosis—is a disease that causes nerve cells in parts of
the brain and spinal cord to die, resulting in a progressive loss of muscle
function. Palliative care teams work in partnership with you, your neurologist and
other physicians to oversee the coordination of your care. These teams are expert in
managing the pain, symptoms and stress of your illness. They are also well-versed in
navigating the complex health care system. (more…)
ALS & Palliative Care
September, 2012
ALS— amyotrophic lateral sclerosis—is a disease that causes nerve cells in parts of
the brain and spinal cord to die, resulting in a progressive loss of muscle
function. Palliative care teams work in partnership with you, your neurologist and
other physicians to oversee the coordination of your care. These teams are expert in
managing the pain, symptoms and stress of your illness. They are also well-versed in
navigating the complex health care system.

13. So as you wrestle with a disease that challenges your ability to control your body and
your life, the palliative care team can offer tools and techniques to make sure that
whatever can be well-controlled, will be well-controlled.
A common concern of patients with ALS has to do with the loss of function. Most
people with ALS worry about how this loss will make them dependent on others for
even the most ordinary tasks, such as bathing, dressing or eating. And because ALS
also affects the muscles used for breathing, speaking and swallowing, it can cause
physical discomfort and emotional pain. Many people with ALS also become more
and more anxious about becoming wheelchair-bound in the later stages of the disease.
Your palliative care team can help you with all this and more. The team will be your
sounding board and your first line of defense against any symptoms of pain,
discomfort, depression or anxiety.
They’ll help you and your loved ones make both small and large decisions. They will
enhance communication between you, your family and your other doctors and help
you clarify your goals for care. They will also guide you through the necessary
process of advanced care planning, including decisions about the use of mechanical
ventilation and artificial feeding and hydration.
Evidence suggests that ALS patients who receive palliative care have improved
survival compared with those who receive care only from general neurology clinics.
At every stage, palliative care clears the way for you and your loved ones to enjoy,
together, the best possible quality of life.
Handouts for Patients and Families

14. Videos, Podcasts and Livechats
Parenting a Child with Life-Limiting Illness: A Film for
Families
August, 2013
National Tay-Sachs and Allied Disease (NTSAD) and bereaved parent, Blyth Lord,
recently produced “Parenting a Child with Life-Limiting Illness” as an effort to lessen
the isolation that parents feel and to deepen the understanding that providers have of
the family perspective, so as to improve the quality of care they deliver.
For more information, click here.
The Caretaker: A short documentary explores the
tender relationship between a caretaker and an elderly
woman in the last months of her life
June, 2013
“When we first visited the women, we immediately sensed that they had a unique
connection. Haru had recently lost the ability to communicate clearly with words, but
Joesy seemed to know what Haru needed. With a soft touch of the hand, a reassuring
voice and concerned attentiveness, Joesy cared for Haru 24 hours a day, seven days a

15. week. Their story represents just one of the remarkable relationships between
caregivers and the elderly that take place every day in the United States.”
Cancer and Palliative Care: A Patient’s Perspective
February, 2013
Palliative Care and the Human Connection: Ten Steps
for What To Say and Do
February, 2013
Dr. Diane E. Meier is Director of the Center to Advance Palliative Care (CAPC,) a
national organization devoted to increasing the number and quality of palliative care
programs in the United States.
In this video, Dr. Meier discusses 10 important steps in palliative care from over a
decade of research. This video will serve as a valuable training tool and guide for
medical professionals and their families.
Under her leadership the number of palliative care programs in U.S. hospitals has
more than doubled in the last 5 years.
Portraits of Life, Love and Legacy through Pediatric
Palliative Care
February, 2013
This project was inspired by the extraordinary spirit and legacy of countless children
with severe illness and disability and their families. It is also a testament to the
compassion and dedication of palliative care team members who have helped the
families navigate the complexities of care.
The goal of this film is to increase awareness and understanding of pediatric palliative
care. It showcases what care can be and should be for every family facing these
challenges. The program at Akron Children’s Hospital in Akron, Ohio, is presented as
a model of care that can be successfully developed and sustained in communities and
pediatric hospitals across the country.

16. The film is appropriate for current and future health care professionals, educators,
health care administrators, legislators and the community.
To order the DVD, fill out the order form and return, along with payment information
to:
•Email: mas@neomed.edu
•Fax: 330.325.5903
•Mail: Office of Palliative Care, NEOMED, St. Rt. 44, PO Box 95, Rootstown, Ohio
44272
For more information, please contact:
Office of Palliative Care
330.325.6360 or 330.325.6359
Get Palliative Care
February, 2013
The Journey of Palliative Care
October, 2012
Explore palliative care, and follow the experience of Joyce Jann and her family, as
they work with the palliative care team at Lee Memorial Health System in Fort Myers,
Florida.
Early Palliative Care: Improving Quality of Life
September, 2012
A landmark study on the integration of palliative care during early onset of a cancer
diagnosis was recently published in the New England Journal of Medicine. Jim
Windhorst, a stage IV lung cancer patient, describes how palliative care helped him
cope with his illness.
Patient: Palliative care helps me live my life to the
fullest
September, 2012

17. Jim Windhorst, palliative care patient at Massachusetts General Hospital, talks about
the acupuncture, physical therapy and other therapies that helps him live with lung
cancer.
Chasing the Tiger
September, 2012
Chasing the Tiger—a video adaptation of Gail Sheehy’s new play. Having acted as
her husband’s caregiver for 17 years, Gail Sheehy—who has chronicled every major
turning point for 20th-century Americans—understands firsthand the fears and
frustrations of family caregiving, and offers help.
Take the Quiz: Is Palliative Care Right for You?
Answer the following questions to determine whether palliative care might be right
for you or someone close to you. Remember, you can receive palliative care at any
point in your illness.
1. 1. Do you have one or more serious illnesses such as:
 Cancer
 Congestive heartfailure (CHF)
 Chronicobstructive pulmonarydisease(COPD),emphysema,lungdisease
 Kidneyfailure
 Liverfailure
 Neurological diseases(e.g.,ALS,Parkinson's)
 Dementia
Yes No

18. 2. Do you have symptoms that make it difficult to be as active as you would like to
be, or impact your quality of life? These symptoms might include:
 Painor discomfort
 Shortnessof breath
 Fatigue
 Anxiety
 Depression
 Lack of appetite
 Nausea
 Constipation
Yes No
3. Have you, or someone close to you, experienced the following:
 Difficultside effectsfromtreatment
 Eatingproblemsdue toa seriousillness
 Frequentemergencyroomvisits
 Three or more admissionstothe hospital within12 months,andwiththe same symptoms
Yes No
4. Do you, or someone close to you, need help with:
 Knowingwhattoexpect
 Knowingwhatprogramsandresourcesare available

19.  Making medical decisionsabouttreatmentchoices/options
 Matching yourgoalsand valuestoyour medical care
 Understandingthe prosandcons (benefits/burdens)of treatments(e.g.,dialysis,additional cancer
treatments,surgery,etc.)
Yes No
5. Do you, or someone close to you, need help with:
 Copingwiththe stressof a seriousillness
 Emotional support
 Spiritual orreligioussupport
 Talkingwithyourfamilyaboutyourillnessandwhatisimportanttoyou
Yes No
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