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.

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 communication2. Expert management of pain and other symptoms3. Help navigating the healthcare system4. Guidance with difficult and complex treatment choices5. 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

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.

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

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

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.

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.

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.)

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 PerspectiveFebruary, 2013

Webcast Today: PACE Cancer Perception Index Reveals Public Knowledge and Attitudes on CancerJanuary, 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.

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 CareSeptember, 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 CareSeptember, 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 CareSeptember, 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

virus reproduces, it damages the immune system, which leads to illness and

infection. (more…)

Dementia & Palliative CareSeptember, 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 CareSeptember, 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 CareSeptember, 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 CareSeptember, 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

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 CareSeptember, 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 CareSeptember, 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 CareSeptember, 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.

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

Videos, Podcasts and Livechats

Parenting a Child with Life-Limiting Illness: A Film for FamiliesAugust, 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 lifeJune, 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

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 PerspectiveFebruary, 2013

Palliative Care and the Human Connection: Ten Steps for What To Say and DoFebruary, 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 CareFebruary, 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.

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 CareFebruary, 2013

The Journey of Palliative CareOctober, 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 LifeSeptember, 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 fullestSeptember, 2012

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 TigerSeptember, 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 heart failure (CHF) Chronic obstructive pulmonary disease (COPD), emphysema, lung disease Kidney failure Liver failure Neurological diseases (e.g., ALS, Parkinson's) Dementia

 Yes   No

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:

Pain or discomfort Shortness of breath Fatigue Anxiety Depression Lack of appetite Nausea Constipation

 Yes   No

3. Have you, or someone close to you, experienced the following:

Difficult side effects from treatment Eating problems due to a serious illness Frequent emergency room visits Three or more admissions to the hospital within 12 months, and with the same symptoms

 Yes   No

4. Do you, or someone close to you, need help with:

Knowing what to expect Knowing what programs and resources are available

Making medical decisions about treatment choices/options Matching your goals and values to your medical care Understanding the pros and cons (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:

Coping with the stress of a serious illness Emotional support Spiritual or religious support Talking with your family about your illness and what is important to you

 Yes   No

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