Pathways of Caring- Lung Cancer Program Care Manager: Beverly Cummings, RN 310-268-3667 VA Triage After Hours Phone Number 1-800-952-4852 Table of Contents Understanding Lung Cancer I. What is Lung Cancer? 1-4 II. Is My Lung Cancer Curable? 5-6 III. Symptoms of Lung Cancer 7-8 IV. How is Lung Cancer Treated? 9-14 V. Managing Lung Cancer 15- 25 VI. Lifestyle Issues for Patients with Lung Cancer 26- 27 VII. Keeping Mentally Healthy 28- 34
Transcript
Pathways of Caring- Lung Cancer Program
Care Manager: Beverly Cummings, RN 310-268-3667
VA Triage After Hours Phone Number 1-800-952-4852
Table of Contents Understanding Lung Cancer
I. What is Lung Cancer? 1-4 II. Is My Lung Cancer Curable? 5-6 III. Symptoms of Lung Cancer 7-8 IV. How is Lung Cancer Treated? 9-14 V. Managing Lung Cancer 15-
25 VI. Lifestyle Issues for Patients with Lung Cancer 26-
27 VII. Keeping Mentally Healthy 28-
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VIII. Other Information for You 35-36 Understanding Pathways of Caring Program
I. What is the Pathways of Caring Program? 38-40 II. Your Treatment Team 41 III. Appointments with the Doctor and Other Team Members 42-45 IV. Your Care Diary 46-47 V. Questionnaires and Surveys in the Program 48 VI. Your Responsibilities 49-50 VII. Our Responsibilities 51-52 Medication Sheet Appointment Sheet Your Personal Journal
Each year, more than 170,000 people in the United States learn that they have lung
cancer. The purpose of this booklet is to give you some important information about
this disease. It explains what lung cancer is, how it’s treated, and describes many of
the issues that people with lung cancer and their loved ones deal with. Of course, the
information in this booklet cannot take the place of discussions with your doctor, the
health care team, and your loved ones. We hope that the booklet will help you with
those discussions.
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How the lungs work
The job of the lungs is to bring oxygen to your blood, so your heart can then pump
the oxygen-rich blood to the rest of your body. With every breath, air moves through
your airways: first, through the large airways called bronchi, then through smaller
airways called bronchioles, and finally to tiny sacs called alveoli. (See Picture) The
alveoli pass oxygen to the blood. If there isn’t enough oxygen in your blood, your brain
senses it and sends signals to your lungs to work harder (causing you to breathe
faster). Your brain will also let you know that you don’t have enough oxygen by
making you feel short of breath.
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What is Lung Cancer?
Cancer is a word that is given to a group of more than 100 different
diseases. Cancer occurs when cells become abnormal and keep dividing
and forming more cells without control or order.
Your lungs are made up of many types of cells. Normally cells divide to
make new cells only when your body needs them. This orderly process
helps keep you healthy. But if cells divide when new cells are not needed,
a mass of tissue forms. This mass of extra tissue is called a growth or
tumor and it can be either benign or malignant.
Benign tumors are not cancer. They can usually be removed. In
most cases benign tumors do not come back. Most important, the
cells in benign tumors do not spread to other parts of the body.
Malignant tumors are cancer. They can invade and damage other
tissues and organs. Also, cancer cells can break away from a
malignant tumor and enter the lymphatic system or the bloodstream.
When this happens the cancer can spread to the lymph nodes, or it
can spread to other parts of the body and form new tumors. The
spread of cancer to other parts of the body is called metastasis.
Common places where lung cancer can metastasize include other
places in the chest, as well as to the bones, brain or liver.
What Causes Lung Cancer?
Many people diagnosed with lung cancer wonder what caused the cancer.
Most lung cancers result from years of smoking tobacco. Tobacco smoke 5
has many chemicals that damage the cells in the lungs. Over time, the
damaged cells become cancerous. Even non-smokers can develop lung
cancer from many years of being around tobacco smoke. Former smokers
who quit reduce their chances of developing lung cancer, but they still
have a higher risk of lung cancer compared to people who never smoked.
Occasionally, people get lung cancer from other chemicals such as
asbestos or radon.
Types of Non-Small Cell Lung Cancer
Lung cancers are divided into two main types, called small cell lung cancer
and non-small cell lung cancer. This pamphlet will deal only with non-small
cell lung cancer, which is the type of cancer that you have been diagnosed
with.
Non-small cell lung cancer is grouped into three main types, depending on
the appearance of the cells that make up the cancer.
• Squamous cell carcinoma often begins in the bronchi, near the center
of the chest.
• Adenocarcinoma often begins along the outer edges of the lungs and
under the lining of the bronchi.
• Large cell carcinomas are a group of cancers with large, abnormal-
looking cells. These tumors also usually begin along the outer edges
of the lungs.
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Is Lung Cancer Curable?
Staging Lung Cancer After the doctor has determined that a person has lung cancer it is
important to find out how serious it is. Staging is the process used to
describe how advanced the cancer is, for example whether it has begun to
spread to other parts of the body. Staging usually involves doing one or
more types of special X-ray tests, such as CT scans (also called “cat
scans”), bone scans, and PET scans.
Staging is important because it will help the doctor know what treatments
might be able to treat the cancer. Knowing the stage also helps you and
your medical providers talk about your future health and how we may best
care for your illness.
Although sometimes lung cancer can be cured in its early stages, your
doctor has determined that your lung cancer is at an advanced stage. This
means that even though a number of different treatments may be
recommended for you, they will not be able to cure the cancer. But this
does not mean that there is no hope for the future, as the doctors and
other members of the health care team will do everything possible to help
you.
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Many people who have a disease that is not curable want to know how
long they have to live. Unfortunately this is very difficult to know. Doctors
can use statistics to tell you on average how long lung cancer patients at
your stage of disease usually live. But it is important to remember that
these numbers are only averages. Some people may live longer, while
others may live less long than the average.
Of all patients diagnosed with advanced lung cancer, on average patients
will live about one year after diagnosis. In other words, about one-half of
patients with advanced lung cancer will live for longer than one year, and
about one-half will live less than one year. About one out of twenty
patients will live for three years or longer. This means that about nineteen
out of twenty patients will live for less than three years.
While these numbers are averages, your doctor cannot be certain how long
you will live. How long people live with lung cancer depends on many
factors, including how well they are functioning when they are diagnosed
and how far the tumor has spread. In addition, certain treatments (such
as chemotherapy) on average can prolong a person’s life. We will discuss
more about chemotherapy and other treatment decision making in the
section called “How is Lung Cancer Treated?”
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Symptoms of Lung Cancer Lung cancer usually does not cause symptoms when it first develops.
However, as the disease advances, certain types of symptoms can develop.
Some of these symptoms include: coughing, pain, shortness of breath,
wheezing, repeated bouts of pneumonia or bronchitis, coughing up blood,
or hoarseness. Each of these symptoms is caused by the tumor, which
may invade or irritate the airways, blocking the passage of air.
Beyond the direct effects of the tumor on the lungs, there may be
symptoms that do not seem to be at all related to your lungs. Lung cancer
can cause fatigue, loss of appetite, and loss of weight. If the cancer
spreads to other parts of the body, it may cause headache, pain, and bone
fractures.
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Lung Cancer Symptoms and Their Causes
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Symptom Reason
Coughing Caused when the tumor irritates the airways or
blocks the passage of air to your lungs
Chest pain Caused when the tumor presses on (or grows
into) nerves or other tissues in the chest.
Shortness of breath Caused when the tumor blocks the passage of
air through the airways. This means that less
oxygen makes it into the blood.
Pneumonia Caused when a tumor blocks an airway. The
lungs cannot clear bacteria that cause infection
behind the blockage
Coughing up blood Caused if the tumor grows into a blood vessel
that carries blood through the lungs
Hoarseness Caused if the tumor presses or invades a nerve
that goes to the voice box
Fatigue, loss of appetite,
loss of weight
These are symptoms common among all types
of cancer
Headaches, confusion,
pain, bone fractures
These symptoms usually occur when the cancer
spreads from the lungs to other parts of the
body (brain or bones).
How is Lung Cancer Treated?
Treatments
Lung cancer can be treated in a number of different ways.
If you haven’t met with your doctor yet to talk about treatment options,
you will be doing so soon. People with lung cancer often have many
questions as they make decisions with their doctors about treatments.
Questions that patients often think about include:
• How important is it that I live as long as is possible, even if my quality
of life might be worse?
• How important is it that I am kept comfortable, even if I might not live
as long?
• How important is it that I feel that “everything was done” to help me
live longer?
• How important to me is it that I spend the time I have left at home,
surrounded by those who care for me most?
• How much do I want my family to be involved in treatment decisions?
For most people, more than one all of these goals is important, and your
doctor will try to help you reach. Unfortunately, in making treatment
decisions you might have to trade one goal, for instance maximum
comfort, for a chance to live longer. We will now discuss the different
tradeoffs involved in treatment decision making. The discussion is also
summarized in the table that follows the next section.
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• People whose main goal is to live as long as is possible.
For some people with advanced lung cancer, their main goal is to have
the chance to live as long as possible. For these people, the doctor will
usually recommend treatment with chemotherapy. Chemotherapy involves
giving medications into the bloodstream that are designed to fight the
cancer. Chemotherapy is most often given in cycles -- a treatment period
followed by a recovery period, then another treatment period, and so on.
Chemotherapy can be given either as an outpatient or as an inpatient.
On average, chemotherapy for advanced lung cancer may help patients
live about an extra three months. This means that for about half of
patients the chemotherapy will extend their lives more than three extra
months, and for the other half of patients the chemotherapy will offer less
than a three month benefit. Another way of looking at chemotherapy is
the chance that you will still be living about three years from now. About 3
out of 20 patients will live at least three years with chemotherapy,
compared with about one out of twenty with no chemotherapy. In other
words, 17 out of 20 patients who receive chemotherapy will live less than
three years, compared with 19 out of 20 who don’t receive chemotherapy.
For those choosing chemotherapy there can be many side effects.
Common side effects include nausea, fatigue, hair loss, and loss of
appetite. These usually last for several days after each cycle. In addition,
the chemotherapy will temporarily damage the body’s ability to fight
infection for one to two weeks after each cycle. This puts the patient at
increased risk for serious infection. Not everyone who receives
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chemotherapy will have these side effects, and the doctors will use
medications with the goal of relieving them as much as possible.
• People whose main goal is to be comfortable and “at peace.”
For other people with advanced lung cancer, living longer is not as
important a goal as making sure their remaining time will be as
comfortable as is possible. Many of these people feel that of the time they
have left they prefer to focus on being with family and friends, becoming at
peace with themselves, and maximizing their “quality of life.” For these
people, the doctor will usually not recommend chemotherapy but will focus
on helping the patient maintain a good quality of life -- treatments to
control symptoms, psychological or pastoral services for emotional and
spiritual health, and family counseling for family members’ well-being.
Many of these services can be offered at home, without the need to come
in to the hospital.
One type of treatment that may be offered to control symptoms of
advanced lung cancer is called radiation therapy. Radiation therapy to the
chest might be given if a lung tumor is causing severe coughing, shortness
of breath, or coughing up blood. Radiation to the bone may be given if the
cancer has spread there and is causing pain. Radiation to the head might
also be given if the cancer has spread to the brain and is causing confusion
or difficulty thinking. Radiation therapy involves aiming radiation, which
comes from a large machine, directly at the place where the tumor is
causing symptoms. The treatments are usually given 5 days a week for
several weeks, and the patient comes to the hospital each day to receive
the treatments. For people who cannot travel to the hospital each day for
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radiation, arrangements can be made to stay at the hospital during
treatment.
Patients who decide that their primary goal is comfort, and who are
thought to be in their final six months of life, often consider an option
called hospice. Hospice is a program designed to focus on maximizing
patients’ physical comfort and helping them and their families have
emotional and spiritual well being throughout the end of their lives.
Hospice services can be given either in the patient or their family’s home or
in a nursing home. Once patients are felt to be in their final six months,
they can decide to enter hospice at any time; if they later decide they do
not want hospice services they are free to discontinue them.
People may hope for more than one thing, and their goals often
change over time.
It is likely that most people hope both to live as long as is possible and
to remain comfortable and at peace throughout the rest of their lives. The
medical team caring for you, whatever your goals are, will do as much as is
possible to help you reach them. But it is important to understand that
aiming towards one goal might mean partially trading another goal that is
important to you.
Finally, goals can change over time. For example, if a decision is made
to try chemotherapy and it doesn’t seem to be working, the chemotherapy
can be stopped and the patient and doctor might talk about measures
focusing on comfort, including hospice. If your wishes or goals change at
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any time you should feel free to talk with your doctor about revising your
treatment plans to focus on a different goal.
Talking with your loved ones about treatment decisions.
For many people, talking with their family and friends is an important
part of the decision making process. Family and friends often know you
better than anyone else, and they can understand your goals and what is
important to you. If you want your family or friends to be involved in your
care, we encourage you to include them as part of the decision-making
“team.” Sometimes family members and friends often have strong
opinions about different treatment options. While many patients
incorporate those opinions into their decisions, you should remember that
treatment decisions should meet your goals and feel right to you.
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A Summary of Things to Think About When Making Treatment Choices
Treatment All appropriate treatments Some select treatments Hospice Care
Goals Extend length of life Mostly oriented towards comfort
Only treatments which promote maximum
comfort Factors Length of life • Average of 3 months
longer survival • 3 in 20 will live up to 3
years with chemo, 1 in 20 will live up to 3 years without chemo
• May extend life by treating a sudden illness
• Does not extend life
Symptoms and Symptom Control
• Side effects of treatments (e.g. hair loss, nausea, vomiting, weight loss, fatigue with chemo)
• Close attention to symptom control and minimizing side effects of chemotherapy
• Side effects of treatments (e.g. hair loss, fatigue with radiation therapy)
• Close attention to symptom control and minimizing side effects of treatments
• Natural disease process • Maximum management of
disease symptoms (coughing, shortness of breath, pain, etc.)
Common Feelings and Emotions
• “I’m going to fight this ‘til the end.”
• “To me, not trying all treatments would be giving up hope.”
• “If I can have more time, it would be worth it.”
• “I just don’t want to go through chemotherapy”
• “I want stay at home and be surrounded by my loved ones.”
• “I want to focus my time and energy to get my affairs in order”
• “I don’t want to go through any “artificial” treatments”
Other considerations • What impact will this have on my loved ones?
Managing Your Lung Cancer Regardless of the specific treatment plan that you decide on with your doctor, you can
feel assured that the medical team will make every effort to control the symptoms of
your disease. People with lung cancer may face a variety of symptoms. In the section
below we will first discuss each of these symptoms and then how they might be
managed. The symptoms we will go over are:
1. Pain Fact #1: YOUR PAIN CAN BE CONTROLLED Pain is a common symptom for most patients with advanced lung cancer. Fortunately,
there are many different treatments that the doctors can use to control lung cancer
pain. Because people differ in the way they respond to pain medicines, your doctor
will tailor a specific pain management plan to match your needs. The goal of the
treatment plan is to make sure that your pain is well-controlled throughout each day
and night.
Fact #2: YOU ARE IN CHARGE OF HELPING THE MEDICAL TEAM MANAGE YOUR PAIN. There are no tests or simple signs that tell us how much pain a person is experiencing.
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That’s why it’s important that you tell the medical team if you are having pain and how
bad it is. Always try to be as specific as possible by describing: the location of the
pain, what times of day the pain comes, what the pain is like (dull, sharp, throbbing,
etc.), and how the pain responds to pain medications. This will help the medical team
to adjust your medications for the best effect possible.
Fact #3: YOU WILL NOT BECOME ADDICTED TO PAIN MEDICINES. Many cancer patients are worried that taking pain medicines for cancer pain will cause
them to become “drug addicts.” Numerous studies have proven that cancer patients
do not become addicted to pain medications, even if they need very high dosages to
control their pain. If you have any concerns about becoming addicted to pain
medication, please discuss it with your doctor.
Fact #4: THE PAIN MEDICATION WILL NOT STOP WORKING.
Many people find that the dosage of pain medicine required to control pain increases
over time. That is a common and expected effect, as your body gets used to receiving
the medication. In almost all cases, the medical team can adjust the medication
dosage, or even switch the type of medication they are using, to give you the best
relief possible. The most important factor in making sure that the pain medication
doesn’t stop working for you is that you communicate the amount of pain you’re
having to the medical team.
Fact #5: SIDE EFFECTS CAN BE MANAGED. People taking pain medication often experience side effects such as constipation,
nausea, or drowsiness or confusion. It is important that you communicate any of
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these problems to the medical team, because there are ways to manage each of these
side effects. We will discuss some of these symptoms below.
Your Pain Management Plan
Pain is often a big concern for lung cancer patients, because pain can seriously affect
your quality of life. For this reason, your doctor will make a special effort to develop a
pain management plan with you. Pain management plans usually include medications
and non-medication treatments designed to keep your pain well-controlled throughout
the day and night. The pain management plan will detail different ways to reduce
your pain. It also contains instructions for dealing with any side effects of pain
medicines, as well as information about when and who to contact with questions.
Finally, part of the pain management plan includes using your diary that will help you
keep track of your symptoms and medications.
We are confident that we can control your pain, but only if you work with us as a
team. Your input into the plan is vital for its success. Here are some important
summary points you should keep in mind about the pain management plan.
1. Be sure the plan makes sense to you. You must be able to understand and follow
it.
2. Your plan might not always remain the same. By communicating regularly with the
medical team the pain medication plan can change according to how much and how
long you experience pain. Your Care Manager will help you make changes to your
pain management plan.
3. It is very important that you keep your primary care doctor or Care Manager
informed about your pain experiences. They need to know the details about your
pain (where, when, how, etc.) and any side effects you are having.
4. Writing down information about your pain will help you and the medical team
review the pain management plan. To help with documenting this information, we
have provided you with three easy-to-use log forms. These will be found in your
log section of the Pathways of Caring-Lung Cancer binder. More detailed
instructions on how to use these logs will be provided by your Care Manager. There
are also instructions and brief descriptions about these logs in the Pathways of
Caring-Lung Cancer program chapter.
5. If you have any questions about your pain, the pain management plan, or pain
medications you are taking, please feel free to call your Care Manager.
2. Shortness of breath
Shortness of breath, also called “dyspnea” (disp-nee-ah), is a common side effect of
lung cancer. Dyspnea is often described as a feeling that a person just can’t get
enough air into his lungs. This feeling can be quite frightening, and can actually lead
to even more dyspnea if it makes a person panic. There are a number of things that
people can do to help control dyspnea.
How to Control Your Breathing
There are a variety of different ways that often help to control dyspnea: pursed lip
breathing, abdominal breathing, relaxation, supplemental oxygen and medications.
Pursed lip breathing is a very effective technique. It will help you feel as if you are
getting enough air. Purse your lips by pretending that you are going to be kissing
someone; in other words, pucker-up.
1. Start by taking a normal breath, counting the seconds it takes you to inhale
through your nose.
2. Exhale, through pursed lips, for twice the number of seconds as you inhaled. For
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example, if you inhaled for three seconds, exhale for six seconds.
3. Try to make a slight whistling noise as you exhale.
4. Don't force the air out; just breathe out in a slow, controlled manner.
Abdominal breathing is another breathing technique that can reduce dyspnea.
1. Lie on your back with your knees bent or place a pillow under your knees.
2. Put one hand on your upper chest.
3. Place the other in the center of your abdomen, at the base of your breastbone.
4. Exhale slowly through pursed lips, squeezing your abdominal muscles upward
and inward. You will feel your abdomen pressing towards the floor. As you inhale
through your nose, you will feel your abdomen expand.
Relaxation exercises can often help breathing. Because tense muscles use up more
oxygen than relaxed muscles, learning how to relax your muscles can help with
dyspnea. The most important part of relaxation exercises is to know when you are
tense. When you feel tense, you can try some of things to relax your muscles:
Rotate your shoulders in a circular motion, or shrug them up and down. Do
this a few times each day to try to relax your muscles.
Find a comfortable position, take a few slow, controlled breaths, and imagine
a place that relaxes you and calms you – anything from watching the waves
at the beach to relaxing in your bed at home. Feel the tension leaving your
body.
Sometimes people with dyspnea can benefit by receiving supplemental oxygen
through plastic prongs that go in the nose. The prongs are attached to tubing that is
hooked up to an oxygen tank. Your doctor can determine whether supplemental
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oxygen may benefit your dyspnea.
The doctor may prescribe medications to help with dyspnea, especially if the other
methods are not working to control your shortness of breath. Low doses of morphine
ease the sensation of shortness of breath. For people whose shortness of breath
creates a lot of anxiety, anti-anxiety medication can also help.
3. Nausea and vomiting
Nausea in lung cancer is usually caused by either chemotherapy or medication used to
treat cancer pain. With chemotherapy, nausea and vomiting can start before
treatment and last anywhere from a few hours to a couple of days. Fortunately, most
nausea can be managed by a combination of changes in your diet and by medications.
Tips for minimizing the nausea after chemotherapy include:
Try eating frequent small meals so your stomach doesn’t feel so full
Avoid “heavy” or greasy foods
Eat and drink slowly
Chew your food well for easier digestion
If nausea is a problem in the morning try eating dry foods like cereal, toast
and crackers before getting up
Drink cool, clear liquids such as apple juice, tea or gingerale that has lost its
fizz
Avoid odors that bother you like cooking smells, smoke or perfume
Rest in a chair after eating but don’t lie flat for about 2 hours after eating
Wear loose fitting clothes
Breathe deeply and slowly when your feel nauseated, or try relaxation
techniques (see page 20)
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4. Constipation
Constipation is a very common problem for patients with lung cancer. Many things can
cause constipation:
Medications (pain medicines, some tranquilizers, muscle relaxants)
Decreased activity levels
Decreased fluid intake
Increased stress and anxiety
Probably the most common cause of constipation is certain types of pain medicines,
and nearly everyone who receives them gets constipation. For this reason, the doctor
will probably prescribe a medicine to prevent constipation. In addition to taking the
medicine regularly, there are other things you can do to prevent constipation:
Drink plenty of fluids
Eat foods that are high in fiber, such as fruits (especially prunes, figs, and
dates), vegetables, and whole grain cereals
Keep as active as possible
Avoid foods that you know constipate you – many people find cheeses, other
dairy products, and fried foods constipate them
5. Fatigue
Many people living with cancer, and especially those with lung cancer, experience mild
to extreme fatigue. Everyone has experienced being tired, and it usually goes away
after a good night’s sleep. Fatigue, however, is a much greater problem. Fatigue is an
excessive feeling of tiredness that may not be relieved by extra amounts of sleep or
rest. Fatigue may lead to difficulty in performing everyday tasks, even simple self-care
tasks like bathing or eating.
There are many causes of fatigue in patients with lung cancer. The cancer itself can
cause fatigue, as can emotional stress or the changes in your daily routine you’ve had
due to the cancer. The treatments you are receiving (chemotherapy, radiation, pain
medicines) can also cause fatigue. While the way that fatigue is treated often depends
on what is causing it. There are general strategies that anyone can use to deal with
fatigue:
1. Get plenty of rest, but don’t overdo it; short periods of rest are best
2. Eat well and drink plenty of fluids
3. Ask for help with tasks when you need it
4. Pace yourself. Accept that many activities will seem harder and will take longer
than you have been used to.
5. Ask for help with tasks when you need it.
6. Keep an activity journal and note your energy and fatigue levels at different
times of day and with different activities. Finding patterns may help you to plan
your day to minimize those activities that fatigue you the most.
6. Weight loss
• Loss of appetite, and weight loss are common side effects of cancer and cancer
treatments. Loss of appetite and weight can impact the quality of your life by
increasing fatigue, causing your muscles to waste, and further decreasing your
appetite. There are many possible causes of weight loss; including the cancer
itself, loss of a taste for food, uncontrolled pain, and depression. Although
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specific treatment for weight loss depends on what is causing it, there are some
general strategies you can use to avoid weight loss:
• When you are hungry, eat.
• Don't be concerned with calories and fat content.
• Snack throughout the day. Don't worry about eating three meals. Eat often, but
eat small amounts.
• Eat calorie packed foods. Don't just have a glass of milk, have a milkshake made
with super premium-high fat ice cream. Add protein powder to Jell-O and
milkshakes.
• Try eating foods you have never tried or liked before.
• Eat whatever tastes good to you. Eat it all day, and everyday if you want to.
• Let other people fix your meals. This will conserve your energy as well as keep
you away from cooking odors.
• If you are sensitive to odors, eat foods that are cold or at room temperature.
• Try some light exercise, such as a short walk, about an hour before you eat. This
may help you to feel hungry.
• Use food supplement products such as Ensure, Isocal, Sustacal and Carnation
Instant Breakfast. These products can help you get the nutrition you need when
you really can't eat. Try making milkshakes using the supplement and ice cream.
But we recommend that you use supplements between meals, not in place of
meals.
• Talk with your Care Manager, or nutritionist, about your weight loss. They may
have other recommendations or treatments that can help you with weight and
appetite issues.
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Lifestyle Issues for Patients with Lung Cancer Exercise
You will probably need extra rest now, but there is no need to stop doing the things you enjoy as
long as you feel able to do them. Take things one day at a time, enjoying life as much as possible,
and sharing it with others. Seeing other people and maintaining a social life are important.
Using your body can make you feel better about yourself, help you get rid of tension or anger, and
build your appetite. Be sure to ask your primary care doctor what activities are okay for you to do.
If you cannot work, it is important to stay involved in as many other activities as possible.
Nutrition It is very important to eat regular, healthy meals while you are having treatment. People who eat
well and drink lots of fluid can deal with side effects better and are better able to fight infection.
Even when you know it’s important to eat well, there may be days when you feel you just can’t. As
mentioned before, cancer generally decreases appetite. Chemotherapy also affects your appetite
because it affects how food tastes. When your appetite is poor, try these hints:
Try changing your mealtime routine. For example, eat by candlelight or in a different location.
Eat with friends or family members. When eating alone, listen to the radio or watch TV
If you live alone, you might want to arrange for a program like Meals on Wheels to bring food to
you.
Drink as much as you can. Small amounts taken often will help keep enough fluids in your body.
You may find popsicles, gelatins, and ice cream good substitutes for other liquids.
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Keeping Mentally Healthy
Knowing that you have a diagnosis of lung cancer can lead to many emotions. This is
a time to call on family or others you are close to for support. Remember other hard
times and how you managed to make it through and without giving up hope.
Common feelings and reactions of lung cancer patients:
Confusion. For example, a lot of times people wonder “why me?” And it is
tough to make a lot of difficult decisions when there are no “right” answers.
Anger. Sometimes it causes people to ‘attack/lash-out’ at family or friends.
Fear. Going through many physical changes, losing a sense of control, and the
unknown future can be very scary.
Sadness. You may not be able to do all that you could before, or do all that you
had planned.
Everyone may react differently at times like this. These are just a few of the reactions
to cancer that patients and their families have. Your emotions will probably change as
you undergo different treatments, as the prognosis changes, or as you experience
symptoms. It is normal to have a lot of different emotions as the illness and your
treatments change the way you feel, affect your life, disturb your routines and strain
your relationships. Be aware that conflicting or confusing feelings can affect your
ability to make many of the important decisions you may be facing. Learning some
ways of coping can help you deal with some of the emotions you may be having.
Coping Strategies
As we have already discussed, having cancer causes many changes in your life: your
activities, your responsibilities, your hopes for the future, and your thoughts about
29
who you are. This can often be very stressful and emotionally draining. The ways
that you choose to cope with your illness and its effects will help determine the quality
of your new life. There are a few ways of coping that are quite simple but can be very
beneficial as well.
1. Talking about it. Share your thoughts, feelings, symptoms, etc. with people around
you.
2. Taking control. Decide how you want to live this part of your life. Write down your
wishes. Get involved with your treatment by asking questions and communicating
your concerns. Let the medical team and your loved ones know when you need
something or when something is not going well. You may want to have a family
member be your spokesperson.
3. Doing pleasurable activities. Allow yourself to spend time doing things that you
enjoy. This can be anything you like. Some examples might be: listening to music
or radio program, visiting with friends/relatives, eating a favorite meal, doing a
crossword puzzle, watching a sunset or sunrise, or taking a walk.
4. Relaxation exercises. Using a few simple relaxation techniques is an easy way to
reduce tension, stress, and even symptoms like fatigue and pain. Relaxation can be
as simple as just sitting for 10 minutes in a quiet place and taking slow deep
breaths. Another way is by tensing and releasing the muscles in your body, starting
with your toes, feet and legs and working up all the way up to your neck. Your
Care Manager may be able to recommend other relaxation techniques as well
(meditation, biofeedback, imagery, etc.).
5. Keeping a diary or journal. Many people find it helpful to have a private place to
write down their thoughts and feelings in difficult times. Keeping a record of your
activities and thoughts can help you understand your feelings and symptoms.
Pathways of Caring has provided a journal for you in your notebook.
30
6. Try something new. Trying out a new hobby or learning a new skill can be fun. It
could also distract you from bothersome symptoms or reduce your level of stress.
How will my illness affect my loved ones?
Your illness can be a very difficult time for your loved ones too. Just like you they may
also be feeling different emotions. It may be difficult for them to get used to the idea
that you are very ill. Commonly, they can’t imagine life without you. They may be
uncomfortable talking about the situation because it scares them or because they
worry about upsetting you. They may think, “I just don’t know what to say” or they
may worry about saying the wrong things. You can help them just by talking openly
about your illness, your hopes or needs, how you are feeling and your fears. Sharing
information about your illness can make family feel more included and less anxious.
They will also understand better what you are going through if you share your illness
experiences with them.
Another common concern among patients is their fear that they may become a burden
to their family. If you have thoughts about this we encourage you to talk about it with
you Care Manager and your family.
We believe strongly that serious illness can have many positive outcomes as well as
negative ones. It can provide an opportunity for patients and their loved ones to
remember old times, resolve important personal issues, and spend some close
personal time together.
31
Sources of Support • Natural Support Systems: family, friends, neighbors, co-workers, etc.
Most people don’t realize it, but they already have support systems: their friends,
family, neighbors, co-workers and others already in their lives. Just talking about your
situation and sharing your feelings with other people can be beneficial to you. It may
be hard to ask for help –but it may help you get through the hard times. Your family
and friends likely can comfort, encourage and support you in ways that no one else
can. In addition to listening, people close to you can help you in other ways. When
people offer to help, take them up on it.
• Support groups: Support groups are made up of people who are going through
similar experiences with their illnesses. People with all types of cancer often find it
helpful to have the opportunity to talk about their experiences with their illness and
how it is affecting their life. Sometimes it may be easier to talk about certain things
with people in your same situation.
Support groups have anywhere from 4 to 12 people in them and are usually guided
by an experienced leader. Common topics might include: sharing a personal story, tips
for managing symptoms, experiences with a new treatment, family issues, and many
others.
Going to a support group does not mean that you have to share your personal
feelings, you can choose just to listen. And if you don’t feel well on a group day or
you don’t like a particular group you can always change your mind about whether to
go.
Support groups are in the LA area are offered by the Wellness Center, the
32
American Cancer Society, and other organizations. There is even a cancer support
group on the radio. You can call toll-free to join in the conversations, or just listen. It
is on KRLA 1110 AM every day from 1-3pm. Your Care Manager can also help find a
support group to meet your needs.
• Professionals: social workers, counselors, psychologists, etc.
The VA has many support services available to you and your family. For those who
need more structured and personalized help than they can get from a group session,
meeting individually with a social worker, counselor or spiritual advisor may be a good
option. They can help you adjust to the many changes you and your family will be
going through. For your convenience, many of these services can be provided to you
in your home or over the phone.
• Church and spiritual advisors: chaplains, ministers, rabbis, and other spiritual
advisors, etc.
In times of serious illness and life changes some people find comfort and strength
from prayers, rituals, or guidance from their spiritual advisors. It is also a time when
people question their place in the world, the actions of God or even their faith in
general. Spiritual advisors are usually very experienced in helping people and their
families with these issues. The VA has a number of chaplains (from different faiths) on
staff who are available to help you with these types of issues. Ask your Care Manager
about getting in touch with someone who can help you with any spiritual issues.
33
Other Information for You
Transportation
Let us know if you are having difficulty getting to your doctor’s appointments or to get
your treatments. There are resources available such as DAV(Disabled American
Veteran’s), ACCESS-Private Transportation Co., Senior Ride, and taxi coupons. Your
Care Manager and the Pathways Social Worker can help you make transportation
arrangements.
Other Health Care Services: Home care, visiting nurses, family caregiving
Home health care may not be necessary for long term but may be helpful during
transitional periods, for example when you are starting new treatments or when things
seem difficult to manage. Today, both basic and technical care can be brought to your
home where you can receive treatments in familiar surroundings and in the company
of your loved ones. In addition, home health staff can teach you and your family
members how to use and manage new equipment or treatments in the comfort and
privacy of your home. Some of the staff that may be caring for you in the home
include: nurses, therapists, home care assistants and social workers. The home care
staff can help you to remain in control and teach your family how to care for you as
well. Ask your Care Manager if you would like to know more or would like to receive
home health services.
Hospice and Palliative Care
When the time comes that your doctor feels that your care should be focusing on
comfort only, you may want to know more about Hospice care. Hospice is a
philosophy that guides care for persons with serious untreatable illnesses. Hospice care
is palliative (or comfort) focused rather than curative, with an emphasis on pain and
34
symptom control, so that a person may live the last days of life fully, with dignity and
comfort, at home or in a home-like setting. Remember, a choice to bring in Hospice,
does not mean giving up. It simply means your comfort will be the main goal while
working hard to treat your symptoms, especially pain, and respecting your particular
lifestyle. Some other facts about Hospice:
Hospice treats both the patient and the family
Hospice works as a team and has a variety of resources to meet your needs
Hospice is available 24 hours a day and 7 days week
Hospice follows the plan that you and your doctor have decided on
Hospice includes all equipment and medications
Hospice care can be provided at home or a nursing home
Hospice can be discontinued at any time
Talk to your Pathways team about any questions you may have about
Hospice care. If you think you and your family would like to receive Hospice care,
your Care Manager can assist in setting this up and making the arrangements for you.
35
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
Understanding the Pathways of Caring Program
CONTENTS
Page
What is the Pathways of Caring Program? 4
Your Notebook 11
Questionnaires and Surveys in the Program 13
Your Responsibilities in the Program 14
Our Responsibilities in the Program 16
36
i
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 w shes 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.
37
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.
38
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 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.
39
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 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.
40
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 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.
41
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!
42
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.
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
*Adapted from MHI-5
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
45
Please circle the number that best describes how much you agree or disagree with each item.
Agree strongly u
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
46
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.
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 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.
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
47
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 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.
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
*Adapted from the Missoula Vitas Quality of Life Survey
48
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
49
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
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
50
Strongly
Agree Somewhat
Agree Neither
Agree nor Disagree
Somewhat Disagree
Strongly Disagree
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
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
1 It is easy for me to understand the medical team’s descriptions of my illness and treatments.
1
2
3
4
5
1 The medical team really cares about me.
1
2
3
4
5
1 The medical team is not sensitive to my feelings.
1
2
3
4
5
51
Strongly
Agree Somewhat
Agree Neither
Agree nor Disagree
Somewhat Disagree
Strongly Disagree
13. 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
Daily Medication Schedule
Medication/ Instruction Breakfast Lunch Dinner Bedtime Reason for taking Comments
