understanding heart failure - palliative...
TRANSCRIPT
UNDERSTANDING
HEART FAILURE
CONTENTS
Page
Understanding Heart Failure
What is Heart Failure?
The Symptoms of Heart Failure
Warning Signs to Contact Your Care Manager
How is Heart Failure Treated?
− Common Medications for Heart Failure
− Weight and Diet in Heart Failure
Other Lifestyle Issues and Heart Failure
2
WHAT IS HEART FAILURE?
Heart failure (also called congestive heart failure) is a condition where the heart becomes less
able to pump blood throughout the body. Usually, heart failure is caused by a variety of things
that have weakened the heart. Many years of high blood pressure or problems with the heart
valves are just a few examples of things that can weaken the heart.
To better understand heart failure, you need to know a little about how the heart works. Your
heart has a right half and a left half. Each half has two chambers, one called the atrium and the
other is called the ventricle. (See picture). The right side of the heart receives blood from your
muscles and internal organs. With each heartbeat the blood is pumped through your lungs. In the
lungs, the blood absorbs the oxygen that you breathe in. Then the blood goes to the left side of
the heart, where it is then pumped to the rest of your body. When your muscles and internal
organs receive the blood, they use the oxygen and other nutrients that your blood carries. After
moving through your body the blood returns to the right side of the heart, and the process starts
all over again. During heart failure your heart cannot pump normally and cannot supply your
body with enough blood.
For most people, heart failure is a chronic condition. This means that while heart failure cannot
be cured it can be treated with medicines and managed with changes in your lifestyle. For
example, with good medication treatment and diet management, your symptoms can be reduced
and you can feel better.
3
UNDERSTANDING THE SYMPTOMS OF HEART FAILURE
When you have heart failure, your heart muscle doesn’t work as well as it should to pump blood
through your body. As a result, most people feel symptoms of heart failure. The symptoms you
might feel depend on which side of the heart is affected. For most people, both sides of the heart
are affected, meaning that most people have many types of symptoms.
Symptom Reason
Feeling tired or weak Your heart is responsible for pumping blood to your muscles. If
your muscles are not getting enough blood you may feel tired or
weaker than normal.
Feeling dizzy or lightheaded Your brain is an organ that also needs blood to work well.
Heart failure can cause you to feel dizzy or lightheaded,
especially when you stand up and your heart has to pump
against gravity.
Becoming short of breath or
coughing
When the heart is not pumping very well, blood can back up
into the lungs. When this happens, fluid can leak into the lung
causing you to become short of breath or cough. This can
happen both when resting and when you exert yourself.
Shortness of breath and coughing can also occur at night. When
you lie down or are sleeping blood returning to your heart from
your legs can collect in your lungs.
Gaining weight
OR
Swelling in the feet, ankles or
legs
Your kidneys are responsible for balancing the amount of fluid
in your body. These heart failure symptoms occur because your
heart doesn’t pump enough blood to the kidneys. Lack of blood
fools the kidneys into thinking that your body doesn’t have
enough fluid and causes them to hold onto as much water as
possible.
Losing your appetite The lining of your stomach and intestines get become heavy
d and you don’t feel hungry.
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Becoming short of breath or
coughing
When the heart is not pumping very well, blood can back up
into the lungs. When this happens, fluid can leak into the lung
causing you to become short of breath or cough. This can
happen both when resting and when you exert yourself.
Shortness of breath and coughing can also occur at night. When
you lie down or are sleeping blood returning to your heart from
your legs can collect in your lungs.
Gaining weight
OR
Swelling in the feet, ankles or
legs
Your kidneys are responsible for balancing the amount of fluid
in your body. These heart failure symptoms occur because your
heart doesn’t pump enough blood to the kidneys. Lack of blood
fools the kidneys into thinking that your body doesn’t have
enough fluid and causes them to hold onto as much water as
possible.
Losing your appetite The lining of your stomach and intestines get become heavy
d and you don’t feel hungry.
5
WARNING SIGNS TO CONTACT YOUR CARE MANAGER
Your care manager will thoroughly review with you the “warning signs” that your heart failure is
getting worse, because it is VERY IMPORTANT that you contact her if you have any of these.
The warning signs let you and your care manager know that we may need to change your
medications, have you come in to be seen by the doctor, or have a nurse come out to see you at
home.
♦ If I gain 2 or 3 pounds in one day I will call my Care Manager right away.
♦ When doing my usual activities, if I notice that I am short of breath or coughing more than
normal I will call my care manager right away.
♦ If I notice new swelling in my feet, ankles or legs I will call my care manager.
♦ If I think my medicine is giving me trouble or side effects I will call my care manager. I will
continue to take the medication until my doctor says not to.
♦ If I run out of medication or my medications have not arrived on time I will call my care
manager.
♦ If I think I might need to come into the hospital I will call my care manager. (Of course if it
is a real emergency call 9-1-1 immediately)
HOW IS HEART FAILURE TREATED?
You and your doctor will have to work together to successfully manage the symptoms of heart
failure. The best management is a combination of medications and changes in your lifestyle. As
described before, your heart failure can be treated and managed but not cured.
Depending on the type and severity of your heart failure, your doctor will prescribe the
appropriate medications. Each person responds a bit differently to medications so it may take
some time to determine the best medication and correct dose for you.
6
The most common types of medications that your doctor may prescribe for you come from the
following categories:
Type Purpose
Digitalis
For example: Lanoxin or Digoxin
To help improve the pumping of the heart or to
control fast or irregular heart rhythms.
Diuretics
For example: Lasix, Hydrochlorothiazide,
Metalozone
To rid the body of extra fluid, to prevent
swelling of the feet and legs. To decrease the
workload on the heart and make it easier to
breath.
ACE Inhibitors
For example: Lisinopril, Captopril
Vasotec, Fosinopril
To help prevent the blood vessels from
narrowing. To make it easier for your heart to
pump blood out to the rest of your body. To
prevent heart failure symptoms.
7
WEIGHT AND DIET IN HEART FAILURE
Two of the most important and helpful things YOU can do to manage your heart failure and stay
out of the hospital are:
Weighing yourself every morning
AND
Limiting the amount of salt (also called sodium) in your diet
As mentioned above, a common symptom of heart failure is retaining extra fluid and gaining
weight. Weighing yourself every morning is a good way to see if your body is keeping extra
fluid.
Ξ Weigh yourself every morning! Ξ
After you wake up
After you have gone to the bathroom
Before you eat breakfast
Always use the same scale
Always wear the same clothes
Always write down your weight
In your Care Diary write down your weight. If you gained 2 or 3 pounds since the day before
call your Care manager. If you weigh 5 or more pounds than you did 5 days ago call your Care
manager.
Controlling your diet, especially the sodium (salt) is the other important thing you can do to help
manage your heart failure. Salt causes your body to retain extra fluid. Your kidneys control the
amount of fluid in your body and respond to the amount of sodium in your diet. This extra fluid
can end up collecting in your lungs (causing you to be more short of breath), or your body
(causing your legs or other body parts to swell). So, by keeping your salt intake to an absolute
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minimum, you can help to minimize the amount of fluid that your body will hold onto. We’ve
included a special section on foods that you can eat, and foods that you should avoid, as part of a
low salt diet (see page __). The dietitian on the Pathways to Caring team can also help to teach
you about sodium in your diet.
As part of your diet plan, you also need to make sure that you keep well nourished. Heart failure
can make people feel like they don’t want to eat. Not eating will make you lose your strength.
Therefore, it’s important to eat foods that will give you calories and protein. The dietitian will
give you more information on how to keep a healthy diet.
Finally, your doctor might tell you that you need to restrict your fluids as part of your diet. This
might happen if limiting the amount of salt in your diet still doesn’t work to keep you from
building up extra fluid in your body. We will give you more information on fluid restrictions if
your doctor recommends your limit your fluid intake.
9
DIET GUIDELINES FOR PATIENTS WITH CHF
As described above, salt you eat can worsen symptoms of heart failure. Unfortunately, a lot of
the salt we eat doesn’t come from the salt shaker. Most of the salt in our diet come from
“hidden” salt that is already in many of the prepared foods we eat. Because of your heart failure
and the symptoms that can be caused by too much salt we recommend that you limit the salt you
eat to a total of 1 teaspoon a day which is equal to 2 grams of sodium per day (also the same as
2000 milligrams). This total includes salt from the shaker and “hidden” salt already in your
food.
Limit your salt to
1 teaspoon of salt = 2 grams of sodium
Here are some tips to help you limit salt:
Don’t salt your food before or during cooking
Take the salt shaker off the table
Avoid foods with visible salt (like crackers, pretzels, or chips)
Use other flavorings like lemon, garlic, onion, sodium-free or salt-free spices or herb mixes
Avoid flavor enhancers like MSG (monosodium glutamate)
Avoid cured meats like bacon, ham, sausage, pepperoni, salami, etc.
When eating out ask for your food to be prepared without salt, gravies or sauces
Read nutrition labels to check the amount of sodium (1000mg = 1 gram), anything
over (200?) mg per serving is too high
Look for labels which say “Sodium free” or “Very low sodium” or “Low sodium”
Ask your doctor whether you can use a “salt substitute”
The salt you eat is so important that you will be discussing it regularly with your care manager.
Be sure to let her know if you have any questions about certain foods or if you are having trouble
meeting the 2 gram (2 gram = 2000 milligram = 1 teaspoon) limit. Your care manager can give
you more information and advice on ways to reduce the salt you eat.
10
OTHER LIFESTYLE ISSUES FOR PATIENTS WITH HEART FAILURE
Almost everything you do in your life can affect your health. Living well in spite of your heart
failure often means making changes in your lifestyle. Lifestyle changes can help you manage
your illness. Examples of lifestyle changes we have already talked about are limiting the salt in
your diet and weighing yourself daily. Some other lifestyle changes that could help you to feel
better are listed below. Talk with your doctor and care manager about the best ways for you to
make lifestyle changes.
Getting more exercise
Exercise can be beneficial to everyone, regardless of
physical condition or ability. Certain exercises can
strengthen your heart. Most exercise can also improve
your mood. Your doctor can tell you what type and level of
exercise you should be doing.
Getting a good night sleep
Physical problems such as pain or discomfort can often
keep you from sleeping well. Lack of sleep can make you
feel worse. Talk to your care manager about ways to
improve your sleep.
Eating a healthy diet
Everyone with heart failure needs to limit salt. You may
also need to reduce fat or cholesterol and increase fruits
and vegetables. Ask your doctor for tips about eating well.
Quitting smoking or chewing
tobacco
The chemicals in tobacco can have a direct effect on your
heart’s ability to work well. We know quitting is very
hard, but you will feel the positive results. Ask your doctor
about the best way for you to quit.
Cutting down on alcoholic drinks
Drinking alcohol can interfere with the medications you are
taking. Ask your doctor whether an occasional drink is
allowed.
Losing weight
Your heart has to work harder if you are overweight. Both
eating a healthy diet and getting exercise are the best ways
to lose weight. Always talk to your doctor before starting a
new diet or trying new exercises.
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The next section – ‘Living with Advanced Congestive Heart Failure: A Guide for Family Caregivers’ by The Washington Home Center for Palliative Care Studies, A Division of RAND Corporation, November 2002 - can be viewed or downloaded at: www.medicaring.org/educate/download/chfbookfinal.pdf
Understanding the
Pathways of Caring Program
Welcome to Pathways of Caring!
This introductory booklet contains information about the Pathways of Caring program. We
prepared this booklet to give you some information about the Pathways of Caring Program and
how it will work for you. Also in this notebook is information about your illness and how you
can stay as healthy as possible. Please feel free to let us know if you have any questions or
concerns about anything.
The Pathways of Caring Team
12
Understanding the Pathways of Caring Program
CONTENTS
Page
What is the Pathways of Caring Program? 4
The Pathways Team 6
Your Notebook 11
Questionnaires and Surveys in the Program 13
Your Responsibilities in the Program 14
Our Responsibilities in the Program 16
14
WHAT IS THE PATHWAYS OF CARING PROGRAM?
Pathways of Caring is a new program at the Greater Los Angeles VA. It was created to give
veterans with serious medical conditions the best possible care. We feel that people with serious
illnesses need extra attention given to their medical needs, their quality of life and their families’
peace of mind. The program is based on five goals that we will work hard to meet:
Goal 1. Involve you as much as possible in your care. This means that you will have the
chance to learn about your illness, and get prepared for whatever may happen in the future. It
also means that you will work as part of a team with your doctor and nurse. You will take
responsibility for helping to manage your illness.
Goal 2. Give you the best medical treatment and services available. We will work hard to
manage your symptoms and improve your quality of life, help you live longer, and make sure
that you are comfortable.
Goal 3. Keep you as comfortable as possible. We will do everything in our power to keep you
from going through unbearable pain, shortness of breath, or other bothersome symptoms.
Someone will always be available to help you get relief.
Goal 4. Support you and your family’s needs. Throughout your illness we will support your
needs whether they are physical, emotional, or spiritual. We serve your loved ones too.
Goal 5. Use your wishes and values as our guide in providing your care. We will be asking
about your wishes regarding your medical care. We will always try to find the best match
between your wishes and your treatment options.
15
THE PATHWAYS TEAM
The Pathways of Caring program has a team of people who will be working with you. The
team’s job is to meet each of the program’s goals (see pages 4-5). The Pathways of Caring team
includes:
1. Your primary care doctor, who will see you on a regular schedule. This schedule will depend
on your illness and your specific needs.
2. A nurse called your “care manager.” She will be in regular contact with you. She will make
sure that you get the appointments, medications, education, and any other care or services
you need.
3. A dietitian to help with things related to your meals, special nutrition needs, and how they
affect your health.
4. A psychologist who can help with stress or coping with your illness.
5. A social worker who will be available to address financial, transportation, housing or other
concerns about your situation.
6. A chaplain who will help with any spiritual issues that you or your family would like to
discuss.
7. A pharmacist who will help teach you about your medications, and help with any medication
problems.
APPOINTMENTS WITH THE DOCTOR
AND OTHER TEAM MEMBERS
Starting now, you will be taking part in meetings with your doctor and the Pathways team
members. The other parts of the care pathway are as follows:
First visit --
You will probably begin by meeting with the program’s care manager. The care manager is the
team member that you’ll probably get to know best. During this first visit, you’ll have the
chance to get to learn more about how the program will work, and you will be able to ask any
questions you have about the program. Don’t worry if you don’t get the chance to ask the care
16
manager everything at this first visit. You will have plenty of chance to talk during regular
phone calls!
Second visit – meeting the team.
Within a few weeks of beginning the program you will have an appointment with the rest of the
care team. This will probably be a longer visit, and one of the only appointments you have in
our clinic. You will meet individually with the team’s dietitian, pharmacist, psychologist, social
worker, and chaplain for about 20 minutes each. You’ll have the chance to talk about how
you’re doing and you should ask any questions you might have. You may want to bring a family
member or close friend with you to this appointment.
As part of this appointment, you’ll also meet with a special team doctor whose job it is to talk
with you about advance care planning. Advance care planning means preparing for your
future medical care. Sometimes people become too sick to decide about different medical
treatments and procedures. Advance care planning involves talking with your doctor about the
things that would be important to you if you became very ill. For example, some people always
want to have the opportunity to live a little longer. Other people may feel that being comfortable
is the most important. Some say, “I don’t want to be a burden on my family.” Advance care
planning also means learning about how the medical team can help people reach their goals at
the end of their lives.
Part of advance care planning involves having the chance to complete an advance directive. An
advance directive is a written form that allows you to do two things. First, it allows you to name
someone who will make decisions for you in case you become too ill to express your own
wishes. And second, it allows you to tell your feelings about the medical care you would (or
wouldn’t) want to receive, if your condition worsened.
An appointment with a specialist.
Within a few weeks of beginning the program, you will probably have an appointment with a
doctor who specializes in the treatment of your serious medical condition. This specialist will
work closely with your primary care doctor and your care manager to make sure you get the best
17
care possible. The specialist will do a complete history and physical to decide the best way to
treat your illness. He or she and may even order some tests. The specialist will also teach you
more about your condition: things you can do to improve your life now and what might happen
in the future. The specialist may arrange for a follow-up appointment with you. The specialist
may just give your regular doctor help on an as-needed basis.
Regular phone appointment with the care manager.
After the first few meetings at the hospital a lot of your contact with us will be over the phone.
An important part of the program will be regularly scheduled phone visits you will have with
your care manager. Every one to two weeks you will call your care manager. You and your care
manager will work out a schedule for the phone calls. You can tell her how you’ve been doing,
report your symptoms, appointments, medications or any other concerns you may have. The
care manager can give you instructions to help with your care. If your symptoms are worsening
she may instruct you about how to manage them. She will also be in close communication with
your primary care doctor, the specialist, and the other Pathways of Caring team members.
The care manager will discuss with you other situations when it will be important to call her (for
example, if you are feeling very sick or you think you are reacting to your medication). You will
be able to call your care manager at anytime. If the care manager is not available her answering
machine message will instruct you what to do. In some cases you may need to call our on-call
physician. Or you can call the VA’s advice nurse (1-800-952-4852), who is available 24-hours,
7 days a week. This nurse will help you with urgent situations.
Regular visits with your primary care doctor. Your care manager contacts should help you to
feel as good as possible between your regular doctor visits. During your appointments with your
primary care doctor you will have the chance to discuss in detail how you have been doing and
any other medical conditions you may have.
18
YOUR PATHWAYS OF CARING NOTEBOOK
Your care diary is a special notebook that will help you and your care manager keep track of
your symptoms, medications and appointments, and how you are doing. Keeping the
information in your notebook up-to-date is one of your responsibilities as part of the program, as
it is very important to your care and health. You should bring your notebook to each visit, and
any other time you come to the hospital (for example, to the emergency room). Also keep it
handy for phone calls from your care manager.
Your notebook has several sections:
1. Information sheet. This sheet will give any doctor caring for you information about your
condition, contact information for your loved ones, and information about your wishes about
medical treatments (such as an advance directive, if you have one).
2. Background information about your condition. Your notebook will have information
about your specific illness and treatment, and services that Pathways offer to help you.
3. Medication list. The medication list will include the names of each of the medicines you are
taking, their dosages, and how often you should take them. When changes are made in your
medicines, they should be put on the medication list. Your care manager and doctor will
review the list with you regularly.
4. Appointment list. Your appointment list will help you to keep track of all of your visits, on
the phone and at the VA clinics. Each time a new appointment is made, it should be noted on
the appointment list.
5. Daily symptom log. The symptom log will have space for you to record what your
symptoms are like each day. Many will use a 0 to 10 point scale. There will also be space
for you to write in any comments about your symptoms that you want your care manager to
know about.
6. Personal thoughts and feelings. This section of the notebook is for you to record anything
you want to about your illness. Some people like to write about thoughts or feelings they
have. Others write down questions they want to ask their doctor or care manager at the next
19
visit. If you want to keep this section private, your doctor and care manager will respect that
(It is YOUR diary, after all!)
7. Advance directive. If you choose to complete an advance directive, or other information
about your treatment preferences. A copy of it will be put in your care diary.
QUESTIONNAIRES AND SURVEYS IN THE PROGRAM
As part of Pathways of Caring, you will get questionnaires about every three months. They will
help us learn more about your symptoms, quality of life, your satisfaction with the care you are
receiving, and any problems you are having. Your answers will help us improve the work we do
and serve you better. It is important to be honest. Filling out these questionnaires is very
important. They give us a good idea of how much the program is helping you and what we need
to correct.
We can’t fix a problem if we don’t know about it!
If you have difficulty completing the surveys for any reason, just let your care manager know
and she will arrange for you to get help. A friend or family member may also help you with the
questionnaires. Make sure your helper does not put down their own opinions!
20
YOUR RESPONSIBILITIES
You are the most important member of the Pathways to Caring team. In fact, the part that you
play will be the most important in seeing how well the program works for you. So we have
made a checklist of responsibilities you’ll have. Please check off each item. Then sign your
name to show you will try to meet your responsibilities.
I will do my best to learn about my illness. I will learn what my medicines are for, the things
I need to do to take care of myself, and the signs and symptoms that my illness is acting up.
I will keep all of my appointments with team members, including my phone contacts with my
care manager.
I will call the care manager promptly if I feel my symptoms are getting much worse.
I will keep track of my symptoms in my notebook logs each day.
I will take my medicines as the doctor prescribes. Even if I am feeling well I won’t stop
taking the pills or cut down unless I’m told to.
I will bring my notebook and all of my medications to all of my appointments.
I will fill out and return the Pathways of Caring surveys that I will be asked to complete.
I agree to the above responsibilities.
_______________________________ ____________________
Signature Date
21
OUR RESPONSIBILITIES
We will teach you about your illness, your medications, and how to take the best care of
yourself.
We will keep our scheduled appointments with you. We will call you on a regular basis to
see how you are doing and how we can help. We will be available to you during the entire
course of your illness.
We will use the best medical and other available resources to respond promptly to your
needs. We will treat you as a whole person including your physical, emotional and spiritual
well-being.
We will try to give you smooth and easy access to all services and resources by helping
coordinate your appointments and promoting communication among those caring for you.
We will do everything we can to prepare you for things that may happen during your
illnesses. We will ask you about your choices for different type of treatments. We will make
every effort to match your wishes with the best treatment options.
We will listen carefully to all of your concerns, criticisms and feedback about how we are
serving you. We will use your input to improve our work and give you the best possible
care.
We agree to the above responsibilities.
_______________________________ ____________________
Signature Date
22
Daily Medication Schedule
Medication/ Instruction
Breakfast Lunch Dinner Bedtime Reason for taking
Comments
Daily Symptom Logs, Today’s Date _______
My weight today is ________
I took my medications today ο YES ο NO
I’m running low on these medications ________________________________________
My next VA appointment is on _____________ in the _______________________clinic
23
How I felt yesterday (circle one number for each symptom):
No difficulty with breathing
1
2
3
4
5
6
7
8
9
10
Very difficult to
breathe
Not tired
1
2
3
4
5
6
7
8
9
10
Tired all of the time
I had the best day possible
1
2
3
4
5
6
7
8
9
10
I had the worst day possible
_________________________________________________________________________
Daily Symptom Logs, Today’s Date _______
My weight today is ________
I took my medications today ο YES ο NO
I’m running low on these medications ________________________________________
My next VA appointment is on _____________ in the _______________________clinic
How I felt yesterday (circle one number for each symptom):
No difficulty with breathing
1
2
3
4
5
6
7
8
9
10
Very difficult to
breathe
Not tired
1
2
3
4
5
6
7
8
9
10
Tired all of the time
I had the best day possible
1
2
3
4
5
6
7
8
9
10
I had the worst day possible
Call Your Care Manager at 1-310-268-3667 if:
24
You gained 3 pounds in 1 day or 5 pounds in 1 week Shortness of Breath wakes you up in the night
Your stomach feels bloated
Pants suddenly feel tighter
You are coughing more
Feet or ankles are more swollen than usual
You feel tightness or pain in your chest
You are urinating less often
Pathways of Caring-Heart Failure Program
Beverly Cummings, RN Kenneth Rosenfeld, MD
After Hours call: 1-800-952-4852 Section 1
We would like to know how your heart problems have affected you in the last month. Please circle the number that comes closest. Did your heart condition prevent you from living as you wanted during the last month by:
No Very Little
Very Much
25
u u u a. … causing swelling in your
ankles, legs, etc.?
0
1
2
3
4
5
b. … making you sit or lie down torest during the day?
0
1
2
3
4
5
c. … making your walking about or climbing stairs difficult?
0
1
2
3
4
5
d. … making your working aroundthe house or yard difficult?
0
1
2
3
4
5
e. … making your going places away from home difficult?
0
1
2
3
4
5
f. … making your sleeping well atnight difficult?
0
1
2
3
4
5
Did your heart condition prevent you from living as you wanted during the last month by:
No u
Very Little u
Very Much u
g. …making your relating to or doing things with your familyor friends difficult?
0
1
2
3
4
5
h. … making your working to earna living difficult?
0
1
2
3
4
5
i. … making your recreational pastimes, sports or hobbies difficult?
0
1
2
3
4
5
j. … making your sexual activitiesdifficult?
0
1
2
3
4
5
k. … making you eat less of the foods you like?
0
1
2
3
4
5
l. … making you short of breath?
0 1 2 3 4 5
m. … making you tired, fatigued, or low on energy?
0
1
2
3
4
5
26
Did your heart condition prevent you from living as you wanted during the last month by:
No u
Very Llittle u
Very Much u
n.
… making you stay in the hospital?
0 1 2 3 4 5
o. … costing you money for mediccare?
0
1
2
3
4
5
p. … giving you side effects from medications?
0
1
2
3
4
5
q. … making you feel you are a burden to your family and friends?
0
1
2
3
4
5
r. … making you feel a loss of self-control in your life?
0
1
2
3
4
5
s. … making you worry?
0 1 2 3 4 5
t. … making it difficult for you toconcentrate or remember things
0
1
2
3
4
5
u. … making you feel depressed? 0 1 2 3 4 5
27
Section 2 In this section we would like to know how often you may have had certain symptoms. Please circle ONE number on each line that comes closest to the way you’ve been feeling during the last month. How much of the time during the past 4 weeks . . . None
of the time u
A little of the time u
Some of the time u
A good bit of the time u
Most of the time u
All of the
time u
a. … have you been a very nervous person?
1
2
3
4
5
6
b. … have you felt calm and peaceful?
1
2
3
4
5
6
c. … have you felt down-hearted and blue?
1
2
3
4
5
6
d. … have you been a happy person?
1
2
3
4
5
6
e. … have you felt so down in the dumps that nothing could cheer you up?
1
2
3
4
5
6
Section 3
As you know, your health can affect more than just your body. In this section we would like to find out about the effect of your illness and health on other parts of your life. 1. How would you rate your overall quality of life?
1 2 3 4 5 Worst possible Poor Fair Good Best possible
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Please circle the number that best describes how much you agree or disagree with each item. Agree
stronglyu
Agree u
Neutral u
Disagree u
Disagree strongly u
f. I feel sick all the time………………………………
1 2 3 4 5
g. I am satisfied with current control of my symptoms………………………………………….
1
2
3
4
5
h My contentment with life depends upon being active and being independent in my personal care…………………………………………
1
2
3
4
5
i. I have recently been able to say important things to the people close to me……………….
1
2
3
4
5
j. At present, I spend as much as time as I want to with my family and friends……………
1
2
3
4
5
k. It is important to me to have close personal relationships……………………………………………
1
2
3
4
5
l. I am more satisfied with myself as a person now than I was before my illness……………..
1
2
3
4
5
m It is important to me to be at peace with myself……………………………………………………
1
2
3
4
5
n It is important to me to feel that my life has meaning…………………………………………………
1
2
3
4
5
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Section 4 In this section we are asking about the effects of your illness and health on other parts of your life. Directions: We would like to know whether you agree with one of two sentences. Read both Statement 1 and Statement 2. Decide which of the two comes closest to the way that you feel. Under the statement you think is true mark one box to show whether you agree strongly or agree with that statement. If you disagree with both statements or you are not sure, then you may check the neutral box. Mark only ONE box for each pair of statements. A.
Statement 1 Statement 2
Despite physical discomfort, in general I can enjoy my days.
OR Physical discomfort overshadows any opportunity for enjoyment.
ο ο ο ο ο
Agree strongly Agree Neutral Agree Agree strongly B.
Statement 1 Statement 2
I am still able to do many of the things I like to do.
OR I am no longer able to do many of the things I like to do.
ο ο ο ο ο
Agree strongly Agree Neutral Agree Agree strongly C.
Statement 1 Statement 2
I accept the fact that I cannot do many of the things I used to do.
OR I am disappointed that I cannot do many of the things that I used to do.
ο ο ο ο ο Agree strongly Agree Neutral Agree Agree strongly
D.
Statement 1 Statement 2
My affairs are in order; I could die today with a clear mind.
OR My affairs are not in order; I am worried that many things are
unresolved.
ο ο ο ο ο Agree strongly Agree Neutral Agree Agree strongly
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E.
Statement 1 Statement 2
I have a better sense of meaning in my life now than I have had in the
past.
OR I have less of a sense of meaning in my life now than I have had in the
past.
ο ο ο ο ο Agree strongly Agree Neutral Agree Agree strongly
F.
Statement 1 Statement 2
Life has become more precious to me; every day is a gift.
OR Life has lost all value for me; every day is a burden.
ο ο ο ο ο
Agree strongly Agree Neutral Agree Agree strongly
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Section 5 1. Please choose the answer that best describes how much of the time each of the following statements is true for you.
All of the time
Most of the time
Some of the time
Not much of the time
None of the time
a. Life has little meaning to me.
u u u u u 1 2 3 4 5
b. I enjoy doing things for others. 1 2 3 4 5
c. I feel loved by others. 1 2 3 4 5
d. I feel a sense of inner peace. 1 2 3 4 5
e. I live my life according to what is truly important to me.
1 2 3 4 5
f. I feel needed by others. 1 2 3 4 5
2. During the past 4 weeks, to what extent did you consider yourself to be a spiritual person?
Not at all Slightly Moderately Quite a bit Extremely u u u u u 1 2 3 4 5
3. During the past 4 weeks, to what extent did you consider yourself to be a religious person?
Not at all Slightly Moderately Quite a bit Extremely u u u u u 1 2 3 4 5
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4. Over the past year, how often did you participate in the following activities?
Less than once
Once
Several times
About once
a month
About once
a week
Every day
u u u u u u a. Pray privately?
1 2 3 4 5 6
b. Meditate in a way other than prayer? 1 2 3 4 5 6
c. Go to a religious service? 1 2 3 4 5 6
d. Talk to a religious or spiritual advisor? 1 2 3 4 5 6
e. Participate in another activity that you think of as spiritual?
1 2 3 4 5 6
5. People have different beliefs or images of a “spiritual core” or “higher power” that is often
called God. How connected have you felt to God (the spiritual core) during the past 4 weeks?
Extremely close
Very close
Somewhat close
Not very close
Not at all close
I can’t relate to God (spiritual
core)
u u u u u u 1 2 3 4 5 6
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Section 6 Please indicate whether you agree or disagree with the following statements. Strongly
Agree
Somewhat Agree
Neither Agree nor Disagree
Somewhat Disagree
Strongly Disagree
1 My pain or discomfort has been well controlled.
1
2
3
4
5
2 The health care team could be doing more to keep me free from pain.
1
2
3
4
5
3 I am comfortable most of the time.
1 2 3 4 5
4 For symptoms other than pain, the health care team should be doing more to keep me comfortable.
1
2
3
4
5
5 I have been able to communicate to the medical team what types of medical treatments I do and do not want to receive.
1
2
3
4
5
6 I want to be more involved in making decisions about my care.
1
2
3
4
5
7 The medical team is available to my family or those caring for me.
1
2
3
4
5
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Strongly
Agree
Somewhat Agree
Neither Agree nor Disagree
Somewhat Disagree
Strongly Disagree
8. The medical team is available to me.
1 2 3 4 5
9. I wish the medical team would do more to address my spiritual needs.
1
2
3
4
5
10. It is easy for me to understand the medical team’s descriptions of my illness and treatments.
1
2
3
4
5
11. The medical team really cares about me.
1
2
3
4
5
12. The medical team is not sensitive to my feelings.
1
2
3
4
5
13. I have been given the right amount of information about my illness and treatments.
1
2
3
4
5
14. It has been difficult for me to get all of the medical services I need.
1
2
3
4
5
16. All of my medical treatments seem to have the same goals in mind.
1
2
3
4
5
17. My doctors and nurses don’t communicate with each other about my needs and wishes.
1
2
3
4
5
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