Advanced Cancer

LIVING EACH DAY

NATIONAL INSTITUTES OF HEALTH

National Cancer Institute
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Health Service

National Institutes of Health

Advanced Cancer

LIVING EACH DAY
Table of Contents

Introduction ........................................................................1

Living One Day at a Time ..................................................3

The Will to Survive .............................................................3

How You May Feel When Time Is Limited .........................4

Your Inner Strength.............................................................7

What Can You Do for Yourself ........................................11

Facing the Challenge.........................................................12

Handling Your Emotions...................................................13

Talking It Over...................................................................14

Making the Unknown Known ..........................................14

Relieving Your Pain and Discomfort.................................16

Feelings of Isolation...........................................................17

The People in Your Life....................................................21

How Young and Teenage Children May React .................21

How Adult Children May React ........................................23

Partners ..............................................................................24

Intimacy.............................................................................24
Choices for Care...............................................................27

Hospice Care......................................................................27

Home Care.........................................................................29

Insurance Issues .................................................................30

Making Treatment Decisions.............................................31

Patients’ Rights ...............................................................32

The Patient Self-Determination Act ...............................32

Advanced Directives: The Living Will and Durable 

Power of Attorney for Health Care...........................32

Planning for Your Family ..................................................35

Conclusion........................................................................37

National Cancer Institute Information Resources..........38

Personal Checklist............................................................39

Personal Inventory ...........................................................40

Introduction

This National Cancer Institute booklet was written to help 

persons who have gone through the struggles of diagnosis, treatment, and, perhaps, recurrence of cancer, persons for whom a 

cure or long-term remission is no longer likely. Terms that doctors

use for this stage of illness are advanced, terminal, or end-stage

disease. Although these terms can have different meanings, they

are used interchangeably in this booklet.

Advanced Cancer is meant to help people who are facing death

from cancer live their remaining days as well as they can. 

It is based on the most current information available and on 

interviews with patients, their families, and their caregivers.

Throughout the booklet, several themes are stressed:

■ Many of your concerns can be eased with medical skill, 

support from caregivers, and knowledge about your illness.

■ Talking with others about your anxieties, frustrations, 

concerns, and problems may be one of the best things you can 

do for yourself.

■ Loss of control over your illness does not mean loss of 

control over the days ahead. You can choose the way you wish 

to face each day.

Some of the information in this booklet may not be suitable

for all readers. As you read this booklet, select the parts that are

right for you. Please keep in mind that Advanced Cancer was 

written primarily for adult patients and their families. If you are 

a parent, relative, or friend of a child or young person who has

terminal cancer, you may wish to call the National Cancer

Institute’s Cancer Information Service for more information (see

page 39).

We hope that this booklet will help ease your concerns.

Perhaps it will show you that each day can be meaningful and

offer comfort, sometimes in a new or unexpected way. Even at this

difficult time, there are many things that can be done to help you

lead a dignified, satisfying life. 

1

Living One Day at a Time

Few people like to think about dying. We all know that death

will come, but most of us spend little time thinking about it. 

Approaching death often brings a change in how we look at life

and what we value. For many people, having a serious illness leads

them to live one day at a time rather than to put off until tomorrow, next week, or next year what could be done or said today.

One patient expressed his philosophy this way:

“The death rate for any generation is 100 percent. We all die.

However, I know what probably will kill me, while most 

people don’t. We have no guarantee of how long we will live.

But I believe it is truly the quality of life, not the quantity,

that is most important.”

There is no right or wrong way to face the end of life. Do what

is most comfortable and useful for you. Many people with a serious

illness are able to find peace of mind by coming to terms with their

emotions and beliefs about life and death. You may be able to find

meaning for yourself, in your own way and at your own pace.

The Will to Survive

We are all born with the will to survive. Exactly what influence

this has on diseases — especially cancer — has been debated for a

long time. But there is little argument that a strong desire to live

can enhance the quality of life.

Many people with terminal cancer have lived far longer than

expected. They often share a positive attitude about the value of

life. They also seem to have a combination of hope, endurance,

willpower, and courage. When asked to explain how they have

managed, they often give answers such as, “I’m needed too much

at work,” or “I can’t die until my grandchild is born.” They do not

want to give up or retreat from living. A keen interest in daily

events helps to get them through uncomfortable treatments or 

disease-related problems.

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This does not mean that a positive attitude alone 

necessarily will lengthen your life. Nor does it mean 

that you are doing something wrong if you are sick and not getting better. But emphasizing the positive aspects of your life can

add meaning, purpose, and comfort to your remaining time.

How You May Feel When Time Is Limited

Each of us is unique, and we each find our own way to live

and die. Still, many patients with advanced cancer have many

feelings in common and may approach this time in their lives in

similar ways.

You may not experience all the emotions discussed in this

booklet or in the exact way they are described. Your feelings may

come, go away, and then come again. Information is presented to

reassure you and those close to you that your reactions are not

unusual; they are a part of the way we, as humans, make peace

with ourselves.

When patients are first told or first realize that their cancer can

no longer be treated effectively, they often react by denying that

this could be happening to them. They believe they will find a

way to beat the odds. This is a way of coping with an overwhelming situation, and it may be helpful at first. With time, however,

patients and their loved ones are often able to face reality. One

patient explained it this way:

“The reality of death does not go away by denying 

it. When you do this, you can miss the comfort you 

get from sharing fears and concerns. You miss the sense 

of well-being you get knowing you have taken care of your

loved ones.”

The feeling of “No, not me!” often changes to “Why me?” 

This question may result from feelings of anger and rage. You 

may be angry with the doctor, family members, neighbors, your

disease, and even yourself without good cause. This is a normal

reaction, and with some time, if you can accept and understand

your anger, hopefully it will pass. It may help to talk about your 

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feelings with your family, a close friend, or a social worker. It 

also may help to keep in mind that you are not responsible for

your disease.

Next you may begin to realize that there is no answer to the

question, “Why me?” Your anger is not the solution, and you

may find yourself “bargaining” for a longer life. People make all

kinds of promises in hopes of a longer life. A promise might be 

“If I can live just one more month, I’ll go to church every day,” or

“If I just can see my son married, I won’t ask for more.”

It is not unusual to bargain. In fact, taking notice of what you ask

for and then working to accomplish your wishes may help relieve

some anxieties about things left undone and words left unsaid.

At times you may feel depressed because you have lost control

of some aspects of your life or your independence. It may help to

focus on what you value most in life — family, friends, or other

things that you cherish — rather than on what you cannot change.

As your illness progresses, depression from losses that already

have occurred may give way to grief over the people and life 

you are going to lose. This grieving should not be discouraged; 

it must be worked through to gain peace of mind and acceptance.

Frequently, talking through these feelings with a loved one, 

clergy, social worker, counselor, or support group can ease the

grieving process.

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During this time, you may find yourself wanting to have fewer

people around. It may help you and your family and friends to

understand that this type of withdrawal often occurs toward the

end of life. Conversation may not be needed as long as someone

who cares for you is nearby. A smile or a gentle touch sometimes

can say much more than words.

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Not all people who face the end of life are able to find peace

and accept death; however, with time and support from those

around you, acceptance is often possible. You need to know that

everything that can be done for your peace and comfort will be

done. Don’t be afraid to ask for such support and assurances.

Your Inner Strength

Most people are overwhelmed emotionally when they first

learn that their cancer no longer can be controlled. They may not

be able to cope as well as they did in the past. Sometimes they

may temporarily lose their will to live, but their reactions often

change with time.

Your feelings of hopelessness may change because of physical

and emotional reserves you didn’t know you had. Calling on your

inner strength can help revive your spirits and your drive to enjoy

each experience and each day. Concentrating on the present

instead of the future can be helpful. For many patients, the future

becomes the end of each day. As one person explained:

“Before this happened I had a 5-year plan, a 10-year plan,

even a 20-year plan. No more. What I realized was that I

could only die in the future, but I was alive right now, and I

always would be alive in the here and now.”

Others prefer to plan ahead—days, months, even a year or so.

This reaffirms to themselves and others that they are not finished

with living and accomplishing goals. With places to go and things

to do, life stretches before them.

Your plans may involve doing things that you enjoy each day.

You may want to plan a few “special days” with family members

or friends—a day outing, a concert, or an afternoon together. Or

you may want to focus on fulfilling a lifelong dream, such as taking a trip. Without a plan, whether it is general or very specific,

you may find that your time consists only of routine daily activities. But try not to do too many activities. Becoming tired may

weaken your defense against depression and despair and may

make coping with your illness more difficult.

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Some people view their illness as a challenge to be met or a

battle to be fought. They think of each day they survive as a 

victory. One woman expressed her outlook this way:

“I get satisfaction by being engaged in the fight. It’s me and

my doctors against the cancer, and we know we might not

win in the end. But by God, we’re going to give it a run for 

its money.”

Others cope by rethinking what is important in their lives and

what is not. As one person said:

“Disease rearranges your values, and you cast off things. 

You reduce the trivia to a minimum; you simplify life.”

It may be helpful to put together a “living legacy” — a book,

cassette, video, piece of artwork, or poem that reflects who you 

are — to share with your family and other loved ones.

However you choose to cope, your inner strength can help 

you live each day as fully as possible.

8


What You Can Do for Yourself

Living with a serious illness can be discouraging. You will have

good days and bad days, just as you did before, and your ability to

deal with these changes may vary. In the morning you may feel

down, but by afternoon your outlook may improve. On one day,

you may have little energy, but on another, your mood and spirit

may rebound. During the bad times, try to remember the good

moments and remind yourself there can be more good times ahead.

Taking charge of your life is one way to help yourself. Take 

an active role in the kind of care you receive. Participate in daily

activities with your family and friends.

Do things for yourself that make you feel good, such as attending religious services or encouraging visits from friends. Let others

help you. Let them know what they can do for you and what you

can do for yourself. They will be grateful for specific suggestions.

Your caregivers may recommend things that don’t seem as important to you now, such as exercise, medications, and food. But

these measures will help you keep your strength and independence for as long as possible. Working with your caregivers and

family helps you maintain a sense of control, purpose, and hope.

Set the tone for those around you. Making those around you

feel comfortable now will help them to be comfortable around

you throughout your illness. As one patient said:

“You have to do this because no one knows how you want to

be treated, and they may be waiting for a cue. No one else

will talk about it unless you do.”

At the same time, remember that you don’t have to be noble

and heroic if you don’t feel that way. Sometimes loved ones may

want you to try to keep your feelings of sadness or anger inside

because they can’t face their own painful emotions; however, your

feelings are important and need to be shared.

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Facing the Challenge

It may be very hard to accept that your body is no longer as

strong and reliable as it once was. As cancer progresses, you will

not be as independent as you once were. This new dependence on

others may affect your self-respect.

Your role in the family and at work will change as well. When

this happens, remember that the qualities that made you a good

friend, loving parent, caring mate, or responsible worker haven’t

changed.

One woman had this to say about her feelings about herself:

“It shouldn’t take a fatal diagnosis to find self-awareness,

self-concern, and self-love. But, I’m afraid, for most of us, it

does. I think I’ve straightened myself out in these areas. In

fact, I’ve discovered that I’m a stronger person than I might

have anticipated. I am just a bit gutsier than I thought, and

I’m delighted to know that about myself.”

You may be able to continue many of your regular activities,

such as playing sports, doing volunteer work, or traveling. Advances

in the ability to control pain and to administer needed medications

and treatments outside the hospital can give those in the later stages

of cancer more independence while receiving medical care.

Arranging family albums, scrapbooks, or hobby collections;

working on a computer; or keeping a daily journal of your feelings

and experiences are activities you can do if you are less active. Just

remember to conserve your strength for the activities you really

want to pursue.

Keep in mind that you can have control over many aspects 

of your life whether you are bedridden or not. You can make 

decisions about your care, your activities, food preferences, and

what you need to make yourself comfortable. In the hospital, for

example, you can wear your own clothes or use your own blanket

and pillow. In some cases, you also may be able to participate in

decisions about your schedule for resting, bathing, and so on.

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Maintaining independence makes many patients feel better

about themselves. However, well-meaning family and friends may

try to make decisions for you, and sometimes you must rely on

others for your care. When you face situations such as these, just

remember: You know better than anyone what you need to make

the most of each day.

Handling Your Emotions

As mentioned earlier, people who are dying from cancer may

be sad, depressed, angry, scared, or all of these. These feelings are

very human and natural. You already may be grieving for the loss

of the person you were before you had cancer. As your friends will

grieve for you, you now may be grieving for your loss of them.

You may be wondering what experiences you will miss in life,

what the moment of death will be like, and whether you will 

continue to “be” after death. You may think about what will

become of your family and friends and how these people will 

react to your death. 

Don’t bottle up your emotions. Letting feelings out will help 

relatives, friends, and caregivers understand your needs; may relieve

some of your sadness, depression, or anger; and even may reduce

physical discomfort. For some people, writing about emotions can

help, and occasionally you may want to punch a pillow, scream, or

have a good, long cry. Go ahead and express your feelings.

If you are feeling angry, it will help both you and others to

understand that your anger may not be meant for them. You

might even think of ways to make your anger work for you. For

example, perhaps you can focus your energy on changing some

aspect of your care that displeases you.

Many people with a terminal illness develop an interest in

expressing or trying to resolve spiritual or religious issues. Even if

you don’t consider yourself a “religious person” or haven’t taken

part in religious services, you may find comfort in exploring 

spiritual matters with a friend, family member, or member of 

the clergy. For some, prayer and/or meditation can be a positive

spiritual boost.

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Talking It Over

Honest and open communication about your illness can help

you in several ways. It can help those close to you understand

how you want to be treated, and the weight of your problems may

be lightened just by talking them over with a family member, a

friend, or other cancer patients who may think of ideas to help

comfort you. Sharing your feelings also may reduce stress.

You may find this kind of communication difficult, and it may

be hard for others. Still, talking over your worries and concerns

and knowing how your loved ones feel can give you strength and

reassurance. To discuss these issues, try to choose people who are

comfortable with your illness.

Let your friends and relatives know that they can offer comfort

simply by being themselves, by listening without trying to solve

problems, and by being at ease with you.

But keep in mind, not everyone can handle your suffering and

loss. Friendships and family relationships may change — not

because of you but because others may not be able to cope with

their own emotional pain about your illness. If this is the case,

you might want to talk to a member of your medical team or to

someone trained in counseling, such as a nurse, social worker, psychologist, member of the clergy, or, if you are receiving care at

home, a professional home health care worker. Also, you may find

support by attending self-help groups where people meet to share

common concerns. Your caregivers, hospital or a hospice can help

find the right person or group for you.

Making the Unknown Known

Some say it is not death people fear but the days, weeks, or

months that precede it. Many are afraid that there will be pain

during this time and wonder if they will become a burden.

Patients with a serious illness fear the unknown, isolation, 

abandonment, and loss of physical and emotional control. 

They worry about the future of those who will outlive them.

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Understanding your condition can help you and your family

resolve these fears. The more you learn about your condition and

treatment, the more your fears of the unknown are reduced. Don’t

hesitate to ask your doctors, nurses, and other caregivers if there is

something you want to know. Remember: It is your right to receive

answers, even to the most direct questions about your future.

Sometimes your health care providers will seem hesitant to

offer information. They may not be able to explain exactly what

15
to expect. Or they may wait until you seem ready for the information. You can signal your readiness by asking specific questions —

about your life, your illness, and about dying.

Try to include one or more relatives, friends, or others who are

supportive in talks with your health care providers. If the health

providers explain matters directly to your caregivers, your caregivers

gain a clearer understanding of how they can help you, and their

concerns can be eased.

Relieving Your Pain and Discomfort

Many people with cancer fear physical pain. However, not

everyone with cancer has pain. And those who do have pain are

not in pain all the time.

If you have pain, it can be treated. Talk to your doctor or nurse

about pain control. Don’t wait until your pain is severe. Pain

almost always can be lessened.

Cancer patients may have pain for a variety of reasons. Pain

may be due to the cancer itself, or it could result from treatment

methods. For example, after surgery, a person feels pain as a result

of the operation itself. Sometimes, the pain is unrelated to the

cancer, such as a muscle sprain, a toothache, or a headache.

Whatever the cause, pain can be relieved.

The best way to manage pain is to treat its cause. Whenever

possible, the cause of the pain is treated by removing the tumor or

decreasing its size. To do this, your doctor may suggest surgery,

radiation therapy, or chemotherapy. However, your doctor may be

more likely to recommend pain relief methods to control your

pain. These methods include pain medicines, operations on

nerves, nerve blocks, physical therapy, and techniques such as

relaxation, distraction, and imagery.

Many people are reluctant to use pain medications for fear of

becoming addicted. But taking medication to relieve pain will not

make you an “addict.” In fact, studies show that medically supervised use of narcotics (also known as analgesics) to control cancer

pain does not cause addiction. Also, research shows that patients 

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who take medication to prevent rather than reduce pain, tend to

use less medication. And if the cause of your pain can be corrected, you will be able to stop taking your medications.

Physical therapy, biofeedback, relaxation techniques, self-hypnosis, and imagery also may help relieve pain. Other types of pain

control include skin stimulation, pressure, vibration, massage, cold

or warm compresses, menthol applied to the skin, and transcutaneous electric nerve stimulation. Some of these methods cause

nerve endings to become numb in a specific area of the body, providing pain relief without the drowsiness caused by some pain

medications. Special procedures that use anesthetics are available

for the 10 to 15 percent of patients whose pain therapy is ineffective or causes severe side effects.

You know the most about your pain, such as where it is, how

bad it is, what eases it, or what makes it feel worse. Your doctors

and nurses rely on you to tell them about your pain. Together, you

can decide which methods of relief might be best for you.

Don’t hesitate to talk about your pain to your doctor or nurse.

You have a right to the best pain control you can get. Relieving

your pain means you can continue to do the everyday things that

are important to you.

A booklet about handling pain, Questions and Answers About

Pain Control: A Guide for People With Cancer and Their Families, is

available from the Cancer Information Service (see page 39).

Feelings of Isolation

As cancer progresses, your life is disrupted. Social activities with

family, friends, or coworkers become less frequent. Routines change

because of treatments, visits to the doctor, or your need to rest.

These changes can lead to feelings of loneliness and isolation,

even when you are surrounded by family and friends. One way to

lessen these feelings is to live as normally as possible. Continue to

do the things you always have done, such as hobbies, reading,

walking the dog, or enjoying the company of children. Let your

family and friends know that you want to continue with life as it

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was before. Encourage them, as much as you can, to carry on with

their regular routines.

Don’t hesitate to ask friends and relatives to visit if you are

feeling up to it. They may want to stop by but may be afraid to

contact you because they don’t know what to say or how to act.

In spite of all your efforts, there will be days when you feel

alone because you realize others cannot fully understand or share

your experience. Some days you may simply want to be left alone,

and that is okay too.

People who live alone or those who do not have family and

friends close by may find an illness especially difficult. In these 

situations, some have found it easier to cope by having volunteers

or caregivers visit. For others, the company of a pet often helps.

Talking with other people who have terminal cancer might

provide the understanding and companionship you need. Joining

a support group, where you can talk with other cancer patients, is

another way to ease feelings of isolation.

At times you may need to rely on yourself for encouragement. If this happens, try to focus on the pleasures you can give

yourself, such as a leisurely walk, a beautiful bouquet of flowers, 

or a good book. Draw on your own strength and try to be your

own best friend.

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The People in Your Life

For many people, family and close friends are the most important sources of emotional support. As one man said:

“My wife and friends who love me are like a circle. 

They form a protective shield around me. I don’t know 

what I’d do without them.”

Those who are close to you need understanding as much as

you do. It may be helpful to try to consider how they feel and

what they can and can’t do. Your loved ones may need time, just

as you do, to adjust to your illness and to their feelings of confusion, shock, helplessness, or anger. Letting family and friends

know that you want them close and that you need their support

will help them cope with these difficult emotions. For many

patients and their families, sharing feelings and taking the time to

say goodbye provide reassurance and comfort. Don’t hesitate to

ask your nurse, social worker, clergy, or counselor to help bring

together family members to talk and listen.

How Young and Teenage Children May React

Children whose parent, grandparent, brother, or sister has 

cancer almost always are aware of a change in their lives. Even

very young children sense when something is wrong. They may 

be frightened by the changes in their daily routine or become

angry when someone they depend on is seriously ill. They may

worry that they might have caused the illness. It is important to

reassure children that nothing they said, did, or thought caused

the cancer and that someone will be there to take care of them.

Because of these possible reactions, it is best to be honest and

encourage communication. Let your children or grandchildren

know that it’s okay to ask questions and that you will answer

them as honestly and as thoroughly as you can. Tell children as

much as you think they can understand.

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Keep in mind that many young people understand more than

we can imagine. In fact, children who are not told the truth about

an illness in the family often depend on their imagination and

fears to explain the changes around them. For example, they may

believe that the family member’s cancer is punishment for something they have said or done. As a result, they may feel unnecessary anxiety and guilt. Health professionals generally agree that

telling children the truth about an illness reduces stress and guilt.

If you find it difficult to talk with your children or explain your

illness, you might want to ask a close friend, relative, or health

care provider for help.

Children need to know that they are still loved and 

important and that they will continue to be cared for as before.

Perhaps a friend can give some time and attention to a child who

needs comforting, affection, and guidance. Choose someone the

child likes and suggest that he or she help with a special project or

attend an important school event if you cannot; ask a friend or

family member to videotape your child’s performance and then

view it with your child when you can enjoy the time together.

Taking the time to listen to a child’s triumphs, problems, and

fears is important. This holds true for adolescents as well as for

younger children. Teenagers are sometimes expected to assume

responsibilities beyond their maturity. Try to give them the independence they need, but also be sure to include them as valued

family members.

Your doctor or social worker can guide you to an appropriate

counselor if you think outside assistance would be helpful. Local

hospice counselors also are a good source for helping family 

members cope.

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How Adult Children May React

The potential loss of a parent may change how adult children

feel about themselves, may raise questions and fears concerning

their own mortality, and may affect their views of what is 

important in life. Adult children also may be torn by the 

multiple demands in their lives: roles as parents, children, and

professionals. They can experience feelings of guilt about the limited time they are able to spend with you.

Throughout your illness, you and your children may have

some of the same emotional reactions. Some of these reactions are

shock and depression at the diagnosis; hope that treatment will

work; disappointment, frustration, anger, and fear when treatment

does not work; and grief associated with the changes and losses

that have occurred as a result of the cancer.

As your illness progresses, it will be helpful to share decisionmaking tasks with your children. Try to involve them in issues

that are important to you, such as wha type of treatment, if any,

you prefer or what types of activities you would like to continue.

Sharing these tasks with your children can minimize conflict 

and fears that may arise between siblings when other important

decisions need to be made.

Your ability to reach out to your children and openly share

your feelings, goals, and wishes will help them through this time.

It also will allow them to feel that they have contributed positively to making this part of your lives together the best possible. It

may help to remember that just as parents want the best for their

children, children want the best for their parents. Children want

to see that their parents’ needs are met in the most compassionate

and effective way possible; no child wants to see a parent suffer.

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Partners

Communication is a two-way street between you and your

partner. Being honest about your emotions can help you draw

support from each other. Loving words, hugs, and kisses can bring

a sense of comfort and closeness.

Be realistic about demands on your partner, who also may be

having a difficult time. Your partner may feel guilty about your 

illness and any time spent away from you. Another source of 

stress for a partner is their changing role in the family. For example, your partner may need to tackle new duties, such as paying

bills or providing childcare.

Talking things over is especially important if you have been

separated by hospitalization for long periods of time. Sometimes

in the absence of their partners, patients begin to draw support

from, and relate more personally to, members of their health care

team. Partners may have a hard time adjusting to this if they sense

they no longer are participating in your care.

Your partner also must take time to meet his or her own needs.

If these needs are neglected, your partner will have less energy,

cheer, and support to give. Try to have other relatives or friends

stay with you while your partner attends to the details of daily

life. Some time away from each other will refresh both of you. 

You must remember that you didn’t spend 24 hours a day together

before your illness. Try, as much as possible, to maintain your 

relationship in the same way that you did before.

Intimacy

You may find yourself unable to express yourself sexually as

you did before because of physical changes and emotional concerns. However, this does not mean that you must deny needs and

desires for intimacy. There are many ways to show love and find

satisfaction.

Open, honest communication is the key. Re-examining your

attitudes about intimacy will help you and your partner maintain

the closeness, warmth, and sense of belonging fostered in a loving

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relationship. Physical satisfaction can be found in a variety of

ways, such as touching, kissing, stroking, and holding.

Sexual problems may stem from feelings about your medical

condition or treatment as well as from the condition or treatment

itself. With patience and communication between partners, many

of these problems can be solved. Understanding why sexual activity may not be the same as before can prevent unrealistic expectations and relieve feelings of self-consciousness or anxiety.

Don’t be afraid to seek help or advice. You are entitled to all

the information you need or want. You may wish to seek counseling from a professional who specializes in addressing sexuality

issues. Your doctor, social worker, or other caregivers also may 

be able to offer some guidance. Or they may be able to suggest

books that deal with sexuality or that offer cancer patients specific 

information on this subject.

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Choices for Care

When dealing with advanced cancer, people may have different personal goals for their care. Some people choose to investigate every medical care option available. Others prefer to focus on

the quality of their life, perhaps with treatment to relieve or

reduce symptoms, called “palliative care,” but without aggressive

treatment of their cancer. Still others may choose not to have any

further treatment. Such decisions are deeply personal. If you

need to make this type of decision, you may want to carefully

review all available options. Your feelings and beliefs (and perhaps

those of your family or others close to you) are important to consider. To a great extent, personal goals help determine the level of

medical care that is appropriate for you, and the setting in which

that care will be provided.

There are different types of services available to patients with

advanced cancer. In today's changing health care environment,

many patients receive their care at home or in a facility such as a

clinic or nursing home, rather than in a hospital. Even when 

hospital care is an option, patients are often able to obtain care at

home as a practical and comfortable alternative to hospital care.

When you are considering various options, it’s helpful to keep in

mind that different types of health care service have different

goals. Hospice care and home care are two examples.

Hospice Care

Hospice care is designed to give supportive care to people in

the final phase of a terminal illness and focuses on comfort and a

person's quality of life, rather than cure. It is intended for patients

who no longer desire or can no longer benefit from treatment

aimed at curing their cancer. The goal of hospice is to enable

patients to be comfortable and free of pain, so that they live each

day as fully as possible. Aggressive methods of pain control may

be used. Hospice programs generally are home-based, but they

27
sometimes provide services away from home--in freestanding facilities, in nursing homes, or within hospitals. The philosophy of

hospice is to provide support for the patient’s emotional, social,

and spiritual needs as well as medical symptoms as part of treating

the whole person. Hospice caregivers address the needs of the

patient and also consider the concerns of those close to the

patient. 

Hospice programs use a multidisciplinary team approach,

including the services of a nurse, doctor, social worker and clergy

in providing care. Additional services provided include drugs to

control pain and manage other symptoms; physical, occupational,

and speech therapy; medical supplies and equipment; medical

social services; dietary and other counseling; continuous home

care at times of crisis; and bereavement services. Although 

hospice care does not aim for cure of the terminal illness, it does

treat potentially curable conditions such as pneumonia and 

bladder infections, with brief hospital stays if necessary. Hospice

programs also offer respite care workers, people who are usually

trained volunteers, who take over the patient’s care so that the

family or other primary caregivers can leave the house for a few

hours. Volunteer care is part of hospice philosophy.

The first hospice program in the United States began serving

patients in 1974; today more than 3,000 hospice programs across

the country offer comprehensive hospice care. Most insurance

plans include hospice as a covered benefit. The National Hospice

Organization promotes and monitors the quality of hospice care.

For information about hospice concepts, practices, and referral,

call the National Hospice Organization at 1-800-658-8898. Your

doctor, nurse, or social worker also can provide information on

hospice care.

28
Home Care

Unlike hospice programs, home care services may include

treatment that targets the cancer itself, not just the symptoms of

the cancer. Some people prefer to have cancer treatments and care

in the familiar setting of a home rather than a hospital. Home

care is provided through various for-profit and nonprofit private

agencies, public and private hospitals, and public health departments. Members of the health care team visit the patient at

home. Home health care professionals can provide cancer treatment, pain medications, nutritional supplements, physical therapy, and many complex nursing and medical care procedures. Like

hospice care, home care also can manage pain and relieve or

reduce other symptoms.

Home care can be both rewarding and demanding for the

patient and caregivers. It often changes relationships and requires

addressing new issues and coping with unfamiliar details of the

patient’s care. To help prepare for these changes, patients and

caregivers are encouraged to ask questions and get as much 

information as possible from the home care team.

Depending on your own needs and concerns and those of 

your family or others close to you, the home care team may

include many or all or of the following professionals: nurses or

nurse practitioners, social workers, dietitians, physical therapists,

pharmacists, oncologists, radiation therapists, and psychologists 

or psychiatrists. (Some health team members do not make home

visits). In addition, many patients find that they need a home

health aide to help with bathing, personal care, or preparation 

of meals. Your primary care physician will remain in close 

contact with the team and monitor your care through other 

team members, phone calls, and office visits.

Most insurance plans cover brief home visits from a nurse and

some cover having a home health aide several times a week.

Although more frequent visits and other home care services are

available, such as 24-hour care or respite care performed by trained

29
volunteers, these services often are not covered by insurance. As

always, you need to know exactly what your insurance plan does

and does not cover. If you have questions about your insurance

coverage, speak to a member of your health care team. 

Insurance Issues

When you are considering different health care services, be

sure to check your insurance plan. Insurance coverage may differ

depending on the type of care available and its purpose (e.g., comfort versus aggressive treatment). When you call for information

about your plan's coverage, it's a good idea to ask for written confirmation of any information you receive by phone. You also may

wish to discuss specific options, such as hospice care and home

health care, with your nurse, doctor, social worker, or clergy, as

well as your insurance company.

30

SOME BENEFITS OF HOSPICE AND HOME CARE

Hospice caregivers and home care professionals can help you

understand and work through some of the difficult emotional

issues that you and your family or others close to you may be

experiencing. In this situation, the social worker is an important

team member who provides emotional support, assists in planning hospice or home care, and eases the transition between

types of care. From the patient’s point of view, an advantage to

home-based medical services is that family members and friends

can be with you and help with your care. As one woman who

cared for her mother at home said:

"The times we all were together with Mom, the rest of the 

family usually sat and talked with her, while I attended to her 

personal care or coaxed her to eat. [During those times], we 

quietly seemed to draw strength from each other just by 

being together."
Making Treatment Decisions

It is your right to make decisions about your treatment. It is

also important for you and those around you to realize that these

decisions may change over time. Family, friends, and caregivers

may find it hard to accept, but for some patients, trying to cure

their cancer is no longer the goal. Quality of life becomes more

important. Other patients may want to try every available drug or

treatment in the hope that something will be effective. Either

way, it is up to you. Many patients turn to family members,

friends, or caregivers for advice. But the decision about how much

or how little treatment for you to have is yours. Sometimes a

patient is unable to make this decision, due to severe illness or

change in mental condition. That is why it is important to make

your wishes known in advance (See Advance Directives, page 32.)

Even though the decisions are yours to make, your family or

those close to you should not be left out. Families and loved ones

are often the most important source of support for patients at this

time. Patients are encouraged to establish a durable power of

attorney and a living will so that their wishes are known by family

members and the health care team. These options are discussed

on pp. 32-33.

Refusal of treatment does not necessarily mean immediate

decline and death; however, a decision to refuse treatment should

be based on your feelings about life, death, and the benefits and

side effects of treatment. If you decide to stop treatment, you can

still receive pain medication and treatments to reduce the symptoms of your disease. This is called palliative care, and its primary

focus is helping you remain as comfortable as possible.

Remember: You can change your mind and ask to resume more

aggressive treatment. If you do, however, be aware that such a

decision may raise insurance issues that you will need to explore

with your health care plan.

Your doctors will, almost certainly, offer information and

advice to help you decide whether or when to stop treatment.

Many religious groups have issued statements about the decision

to end treatment. You may want to explore the position that your

31
religious group takes on this issue. Contact a member of the clergy or other counselor if you would like more information. In the

end, you are the only one who can decide what is best for you.

Patients’ Rights

You have other rights, too. You are entitled to complete information about your illness and how it may impact on your life,

and you have the right to share or withhold that information

from others. You also should be informed about any procedures

and treatments that are planned, the benefits and risks, and any

alternative treatments that may be available. You may be asked to

sign an "informed consent" form, which includes this information.

Before you sign such a form, read it carefully and ask your doctor

any questions you might have.

The Patient Self-Determination Act

A Federal law, the Patient Self-Determination Act (PSDA),

requires all medical care facilities receiving Medicare and Medicaid

payments to inform patients of their rights and choices in making

decisions about the type and extent of their medical care. The

PSDA also requires medical care facilities to give patients information about living wills and power of attorney, which are described

below. For more information about the PSDA, contact any hospital or medical care facility in your area.

Advance Directives: The Living Will and Durable Power

of Attorney for Health Care

All states allow people to delegate some medical decisionmaking rights through "advance directives," but state laws differ

considerably. The two forms of advance directives are a living 

will and a durable power of attorney for health care.

A living will is a legal document, which has been properly 

witnessed by an authority (notary), that allows you to state, in

writing, that you do not wish to be kept alive by artificial means

32
or heroic measures. It is a recognized statement of your right to

refuse treatment and has been upheld in court. If you decide to

prepare a living will, be sure to talk with your doctor, nurse, or

lawyer to identify and define terms that may be important to your

future medical care, such as "artificial means," "heroic measures,"

and "code status." 

You also may want to consider creating a durable power of

attorney as a health care proxy (that is, a person who will stand in

your place to make medical decisions). This legal document

allows you to appoint someone who can make decisions for you

about your medical care if you can no longer do so. Choose a person who knows how you feel about specific treatments and who is

familiar with any religious considerations that need to be taken

into account. And make sure that the term "durable" appears 

in the power of attorney document you prepare. (A power of 

attorney can also delegate authority for financial and property 

management.)

33

HOW TO FIND OUT ABOUT YOUR STATE'S LAWS

Each state has its own laws concerning living wills and durable 

powers of attorney, and these laws can vary in important details. 

It is possible that a living will or power of attorney signed in one

state may not be recognized in another. You need to be aware of

this possibility if you move to another state or enter a hospital in a

state other than the one in which you live. 

Call Choices in Dying, Inc., a nonprofit educational organization, 

at 1-800-989-WILL to learn how to obtain a copy of the living will

used in your state and to learn more about a durable power of

attorney for health care (health care proxy). There is a small fee 

for obtaining the document. You also can contact your state 

health department for this information.
If you sign a living will or a durable power of attorney, tell

everyone close to you that you have these documents and give

them copies. Your health care team and lawyer, if you have one,

also should be informed and given copies. This information will

help ensure that your wishes are carried out.

34
Planning for Your Family

Careful planning reduces the financial, legal, and emotional

difficulties your family and friends face after your death. Though

it is difficult, discussing practical matters now, such as wills and

debts, can eliminate many problems later. Your early decisions

also help relieve unspoken family worries. Advice from professional advisers, including lawyers, clergy, social workers, and 

insurance company representatives, can help you make these

important decisions.

You may want to help your family plan a funeral or memorial

service that has your personal and special touch. Talk with your

family and clergy about how you would like to be honored and

remembered. Your choice of music, readings, and participants will

speak your personal message to those gathered to remember you.

You can help your family by organizing records, documents,

and instructions they will need. If you cannot gather all of these

items, make a list of where they are located. The papers should be

kept in a fireproof box or with your lawyer. If they are kept in

your safety deposit box, be sure a family member or friend has

access to the box so that papers can be removed when needed.

Although the original documents must be used for any legal purposes, you may want to make copies for family members. The

forms at the end of this brochure can serve as guides for collecting

your records.

35

Conclusion

We hope this booklet has been helpful to you and those close

to you. Our intention has been to give you some practical information and to encourage discussion with family and friends.

Open communication offers a chance to learn one of life’s

most important lessons. As one cancer patient said:

“We can choose to wait for death, or we can choose to live

until we die. Knowing that death is in the near future is no

reason to give up on the life we have today.”

We hope that this booklet will help you face this time in 

your life. Try to remember that even when there seems to be 

little hope, there are ways to fight feelings of hopelessness and to

acknowledge the good things around you.

Try to keep in mind that survival statistics are just numbers.

They are no guarantee that you will die at a certain time. In fact,

the numbers that should mean the most to you — and perhaps to

all of us at any time of life — are those that measure the good

days, the comfortable nights, and the hours of happiness and joy,

however you find them.

37
38

National Cancer Institute

Information Resources 

You may want more information for yourself, your family, 

and your doctor. The following National Cancer Institute (NCI)

services are available to help you.

Telephone

CANCER INFORMATION SERVICE (CIS)

Provides accurate, up-to-date information on cancer to patients

and their families, health professionals, and the general public.

Information specialists translate the latest scientific information

into understandable language and respond in English, Spanish, or

on TTY equipment.

Toll-free: 1-800-4-CANCER (1-800-422-6237)

TTY: 1-800-332-8615

Internet

This Web site may be useful:

http://cancer.gov

NCI’s primary Web site. Contains information about the

Institute and its programs, cancer issues, and clinical

trials.
39

PERSONAL CHECKLIST

Use the following personal checklist as a guide for identifying, 

collecting, and organizing important records, documents, and

instructions. Use the Personal Inventory form on the next few

pages to fill in more details about the documents and records 

that you have.

Personal checklist for__________________________________________.

(your name)

For a quick reference, place a check in the box next to the items

that you have. You may have all, several, or just one or two of the

items listed below. If you feel that some of the unchecked items

may be important to you and/or your family, it may be helpful to

talk with your family, doctor, clergy, lawyer, or insurance agent

about the specific benefits of that item before making a decision.

■ Birth certificate

■ Social Security number

■ Living will

■ Durable power of attorney for health care

■ Life insurance

■ Health insurance

■ Accident insurance

■ Pension plan(s)

■ Bank account(s)

■ Safe deposit box

■ Automobile(s)

■ Real estate/rental papers

■ Others ____________________________________________________

_____________________________________________________________

_____________________________________________________________
40

PERSONAL INVENTORY

Name _____________________________________ Date ______________

Address ______________________________________________________

Date of Birth ___________ Place of Birth ________________________

Social Security Number ________________________________________

Next of Kin: Name __________________________________________

Address__________________________________________

__________________________________________

Durable Power of Attorney (health care) ________________________

Employer

Name ________________________________________________________

Address ______________________________________________________

Company Benefits ____________________________________________

Personal Papers (birth certificate, living will, etc.)

Item Location

__________________________________________ __________________

__________________________________________ __________________

Insurance

Company (name and address) Policy Number 

Life: ______________________________________ __________________

Health and Accident: ______________________ __________________

Automobile: ______________________________ __________________

Other: ____________________________________ __________________

Banking Papers (include pension plans, if any)

Kind of Account Bank Name/Address Account

Number

__________________ __________________________ ________________

__________________ __________________________ ________________
41

Other Accounts (include pension plans, if any)

Type Where Account Number 

Safe Deposit Box __________________________ ________________

__________________ __________________________ ________________

Automobiles (make, model, year) ____________________________

______________________________________________________________

______________________________________________________________

Real Estate Papers __________________________________________

______________________________________________________________

______________________________________________________________

Personal Items of Value ____________________________________

______________________________________________________________

______________________________________________________________

Counselors Who Can Help With My Affairs

Attorney ______________________________________________________

Insurance Agent ______________________________________________

Doctor ________________________________________________________

Clergy ________________________________________________________

Other (broker, business associate, accountant) __________________

______________________________________________________________

______________________________________________________________

Funeral Arrangements______________________________________

______________________________________________________________

______________________________________________________________

Special Requests ____________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________
42

NOTES
This booklet was written and published by the 

National Cancer Institute (NCI), 31 Center Drive, MSC 2580,

Bethesda, MD 20892-2580.

The NCI is the U.S. Government’s main agency for cancer research

and information about cancer. The NCI’s publications may be

copied or reproduced without written permission.
NIH Publication No. 98-856

Revised September 1998

Reprinted November 1998

P084