Having advanced cancer can bring anxiety and uncertainty to your life. Some people respond well to different treatments and continue to live for months or years. But others are at a point where there is no treatment available or their cancer can no longer be controlled. This is also called end-stage cancer or terminal cancer. (Sometimes terminal cancer is called metastatic cancer, but they aren't always the same thing. To learn more, see Metastatic Cancer: When Cancer Spreads.)

When dealing with advanced cancer that can no longer be treated (also called terminal or end-stage), people have different goals for their care. These goals may change over time. Some people want to look for clinical trials. Others choose options such as palliative care or hospice care, which help control the symptoms and side effects of the disease.

Decisions for care when cancer is terminal are very personal and it's natural to want to do all you can. But you should weigh these feelings against the risks and benefits of available treatments as well as your own feelings about life and death. You should ask all the questions you need to. If you choose not to go through more active cancer treatment, you can continue to receive supportive care in order to keep you as comfortable as possible.

Clinical Trials for Advanced Cancer

People with end-stage cancer may be offered the option to take part in early-phase clinical trials. These trials are designed to look at the safety of a new treatment and to identify the best dose.

If a person is found eligible for a trial, the chance that the new treatment will benefit a patient in such a trial is low. However, some patients join these trials because they have hope that the treatment may help slow the growth of their cancer. Another reason may be that they want to benefit future patients by taking part in a trial.

If you decide to try a clinical trial, you will have to know details about your type of cancer and past treatments. Each study has rules about who can take part. For example, only patients in a certain age group or who have a certain genetic change in their tumor may be able to join. If a person has been admitted to hospice care, it's rare that they would be eligible to take part in a trial.

Clinical trials have both benefits and risks. And keep in mind that the costs vary with each study. Your doctor and the study doctors should fully explain these issues before you decide to join a trial.

Palliative Care

Palliative care is care that makes patients feel better but doesn't treat the disease itself. Palliative care should begin when the cancer is diagnosed. It continues through treatment and beyond. Research shows that palliative care improves the quality of life of patients and family members. All patients have a right to comfort and quality of life throughout their care.

Palliative care is especially important if you choose to stop treating your cancer. It includes:

• treating or preventing the symptoms and side effects caused by cancer treatment
• getting emotional and spiritual support
• addressing the practical concerns of patients and families

Palliative treatment: Many of the same methods that are used to treat cancer, such as medicines and certain treatments, can also be used to reduce pain or other symptoms and help a patient feel more comfortable. In advanced cancer, palliative treatment may be given to help a person feel better, even if it isn't intended to cure the cancer. For example, doctors may give chemotherapy or radiation therapy to slow the growth of a tumor that is causing pain. Or surgery may be performed to remove a mass that is pressing on certain nerves and causing pain.

To receive palliative care, members of your health care team may be able to help. However, sometimes a palliative care specialist may be the best person to treat problems. Ask your doctor or nurse if there is a specialist you can see.

Hospice Care for Cancer Patients

Hospice is a special type of care in which medical, psychological, and spiritual support are given to cancer patients and their loved ones when therapies are no longer controlling the disease. With hospice care, a team of health care professionals work with patients and families to provide the comfort and care they need closer to the end of life.

Hospice care is not the same as palliative care. Although both hospice and palliative care provide comfort and support for patients, palliative care is available throughout a patient’s experience with cancer. A person’s cancer treatment continues while one is receiving palliative care, but with hospice care the focus shifts to just relieving symptoms and providing support at the end of life.

Hospice care is a focus on caring, not curing. The goal of hospice care is to help you live each day to the fullest by controlling pain and other symptoms, making you as comfortable as possible. It is not intended to either hasten or postpone death.

Choosing hospice care doesn't mean that you've given up hope. Instead, hospice care means you’re changing what you hope for. This could be hoping for good quality of remaining life, including more time with loved ones and friends.

Hospice care can be given in different places. Hospice care most often takes place at home, but it can also be provided in special inpatient facilities, hospitals, and nursing homes. It can also take place along with professional home care if necessary. Hospice services will differ depending on where you live and the philosophy of the hospice itself, but generally includes:

• medical and nursing services
• medical supplies and equipment
• drugs for managing cancer-related symptoms and pain
• short-term inpatient care
• volunteers to give caregivers a break
• counseling and spiritual care
• social work services
• grief counseling and support

Hospice professionals and volunteers are specially trained. They are committed to supporting the emotional needs of both patients and their families and are trained to deal with medical symptoms. The hospice team usually includes doctors, nurses, home health aides, social workers, clergy or other counselors, and trained volunteers. The team may also include speech, physical, and occupational therapists, if needed. The hospice team will focus on your goals for end-of-life care, basing your care plan on your needs and desires.

Hospice can provide support for months. Even though many people unfortunately believe that hospice is only available in the last days or weeks of life, it can provide support for months. Many people have said that they wished hospice care had begun earlier. They were surprised by the expert care and understanding that they got from hospice caregivers.

Your doctor must certify that you are eligible for hospice care. Most insurance plans, including Medicare, will cover hospice care once they receive a statement by both your attending doctor and the hospice medical director that states you have a life expectancy of 6 months or less. You would also sign a statement saying that you’re choosing hospice care. Hospice care can be continued if you live longer than 6 months, as long as your hospice doctor recertifies your condition.

You always have the option to stop hospice care if you choose. Sometimes patients change their mind, decide to switch to another hospice provider, or their situation changes in some other way. Less common, but not unheard of, patients may be discharged from hospice if their condition improves, or if they resume cancer treatment. Although hospice care focuses on care at the end of life, it can be hard to predict for certain what will happen for an individual, and sometimes the unexpected occurs or a person's situation improves.

Joining a clinical trial. The hospice team or insurance provider can answer questions about whether certain care decisions, such as getting a second opinion or taking part in a clinical trial while in hospice care, would affect eligibility for hospice services. Often people receiving hospice care aren't eligible for a clinical trial for a number of reasons. These may include their past medical care, their current physical or mental condition, or their ability to travel to appointments, just to name a few.

Medicare and most Medicaid and private insurance plans pay for hospice services. Medicare is a government health insurance program for the elderly and disabled that is overseen by the Centers for Medicare & Medicaid Services (CMS). For information:

• The Medicare hotline can answer your questions about hospice benefits and Medicare-certified hospice programs. Call 1–800–MEDICARE (1–800–633–4227); callers with TTY equipment can call 1–877–486–2048.
• The Medicare website has other tips and resources about coverage for hospice, including the booklet Medicare Hospice Benefits.

Medicaid, a federal–state partnership program that is part of CMS and is administered by each state, is designed for people who need financial help for medical expenses. Information about coverage is available from local state welfare offices, state public health departments, state social services agencies, or the state Medicaid office. Information about specific state locations can be found online.

Information about the types of costs covered by private health policies is available from your hospital business office, hospice social worker, or from your insurance company.

Local civic, charitable, or religious organizations may also be able to help patients and their families with hospice expenses.

Choosing a hospice. Once you decide to use hospice care, talk to organizations as soon as you can. Choosing a hospice will depend on what services are in your area. Not all hospices provide the same services. It will also depend on which one appeals to you. Talk to family and friends who have used hospice services. Ask your health care team who they would suggest.

There are also organizations that can help you find a hospice. Examples are:

• The National Hospice and Palliative Care Organization (NHPCO) has the Find a Care Provider database which you can search by name or place.
• NHPCO's CaringInfo website offers information and publications focused on improving end-of-life care for adults and children, including Choosing a Hospice. Some Spanish-language publications are available.
• CMS has a tool to help you find and compare services in your area. Simply enter your zip code and the type of care you need.
• The Hospice Foundation of America has a How to Choose a Hospice Provider page with a list of helpful questions to ask.
• The National Association of Home Care & Hospice has a home care and hospice agency locator.

For more information about hospice, see the home page for the NHPCO. They can also be reached at 1-800-658-8898 (helpline) or 1-877-658-8896 (multilingual line).

Questions To Ask Your Doctor about End-Stage Cancer and Hospice Care

Deciding what to do next when cancer is terminal is very personal. Think about what’s most important to you and your feelings about life and death. Discussing the questions on this list may help you talk with your doctor and think through your choices.

• What information do I need that will help me decide my next steps for care?
• When should I think about having hospice care?
• How can I make sure I have the best quality of life possible – that I am comfortable and free of pain?
• Can I have hospice care in my home, or do I have to go to a facility?
• How can I get help with financial matters such as paying for hospital bills or hospice care?
• Who can help me prepare a will or fill out advance directives?
• How can I get help with my spiritual or religious needs?
• Who can help my family and me prepare for the next steps?

If you have a terminal cancer diagnosis (also called metastatic or end-stage cancer) or your disease has progressed to this point, you'll want to talk about future steps and what to expect with your health care team and family members.

Having these talks may not be easy. But knowing your options will make it easier for you to move forward with your care. You can hope for the best while still being informed about your choices. (Your loved ones may also want to go to our caregiver section for more tips on talking about advanced cancer.)

Talking to Your Doctor about Advanced Cancer

When you have a terminal cancer diagnosis, your doctor and other members of your health care team need to know what you want to know. Many people have a team of health care providers who work together to help them. It's important to sit down with them and talk things out together, so you can decide what is best for you.

Ask all the questions you need to in order to make the right decisions for yourself. This team wants to know your goals for care at this stage of your cancer and how you would like to move forward. Tell them what is most important to you now. For example, is it:

• controlling symptoms and feeling comfortable?
• receiving care at home?
• being open to experimental treatments?
• setting a date to attend a special event?

Their answers will help you know what to expect both now and in the future. For examples, see Questions to Ask Your Doctor about Advanced Cancer.

It's important to have good communication and an understanding of your goals with those who will be caring for you. Here are some topics you may want to discuss with your doctor or other members of your health care team:

• Who will make the decisions about your cancer care.
  Some people want to know all the details about their care. Others prefer to know as little as possible. Some patients want to make all the decisions, while others want family members to make most of their decisions. What would you prefer?
• What information you want to know about the stage of your cancer.
  Decide what you want to know, how much you want to know, and when you’ve heard enough. Choose the amount of information that is most comfortable for you. Let your doctor and family members know what that is and ask that they follow your wishes.
• Your pain control options.
  Some people assume that there will always be severe pain with advanced cancer. This does not have to be the case. Pain can be managed throughout the course of the disease. People whose pain is managed are able to focus on enjoying life. They can sleep better, enjoy friends and family, and focus on the daily activities they enjoy. It’s important to be honest and open about your pain. Tell your doctors if and where you have pain. To learn more about pain control, see Cancer Pain Control.
• What your family wants to know about your cancer.
  Some family members may have trouble coping with your cancer prognosis. This is even more true when it is metastatic or terminal. They may not want to know how far the disease has advanced or how much time doctors think you have. If you feel comfortable, ask your family members how much they want to know about your condition. Then let your health care team know their wishes. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones. If you haven't done so already, it is important to fill out advance directives.

Knowing How Long to Live with Advanced Cancer

It's normal for people to want to know how long they will have to live. It's also natural to want to prepare for what lies ahead.

But no one knows the future. Predicting how long someone will live is difficult. Your doctor has to take into account the type of cancer, treatment, past illnesses, and other factors. Your doctor may be able to give you an estimate. But keep in mind that it's a guess. Every patient is different.

Some patients live long past the time the doctor first predicted. Others live a shorter time. Also, an infection or other complication could happen and change things. Even the doctor can't know the answer for sure. And doctors don't always feel comfortable trying to predict how long someone will live.

In truth, none of us knows when we are going to die. Unexpected events happen every day. The best we can do is to try and live fully and for today.

Talking to Family and Friends about Advanced Cancer

When you tell your loved ones that your cancer is terminal, they may need time to adjust to the news. They need to come to terms with their own feelings. These may include:

• confusion
• shock
• helplessness
• anger
• sadness

Everyone copes with bad news in their own way. Knowing this will help you understand their feelings. Let people know that the best thing they can do for you is to be themselves and feel at ease with you. Ask them to listen when you need it, rather than try to solve every problem. Many people are comforted by sharing feelings and taking the time to say what they need to say.

Keep in mind that not everyone can handle the thought that they might lose you. Or some people may not know what to say or do for you. As a result, relationships may change. This isn't because of you, but because others have trouble coping with their own painful feelings.

Some things you could say if you'd like to:

• Tell them that you’re still the same person you always were.
• Let them know if it's alright to ask questions or tell you how they feel.
• Remind them that often just being there for you is enough.

It's also okay if you don’t feel comfortable talking about these issues. What you say to others is up to you. You also get to decide when or if you want to respond at all.

Talking with Your Spouse or Partner about Advanced Cancer

Talking about serious issues is never easy. It's hard to face an uncertain future and the possibility of death. Often people are uncomfortable or don't know what to say.

It’s likely that you and your loved one are both having the same thoughts and fears about the end of life. With an end-stage cancer diagnosis, there will come a time when you will need to talk about these issues together. These might include:

• when to stop cancer treatment
• preparing for the future
• talking about living arrangements and where to get care
• fears about death
• wishes at the end of life

There is no right or wrong way to communicate. But studies show that people who talk things out feel better about the care they get and the decisions they make. A few things to remember are:

• You can still have hope for comfort, peace, and acceptance. It's a good idea to talk about the fact that the future is uncertain. Avoiding important issues only makes them harder to deal with later. Talking over your concerns can bring comfort to both of you, as well as others in your life.
• Be honest about your feelings. It's important to get any thoughts or concerns you have out in the open.
• Know that the way each person handles situations is different. You each have to process your thoughts and fears in your own time and own way.

If you have trouble talking about these issues, ask for professional advice. A counselor or other mental health expert may be able to help you and your loved one explore topics that you don’t feel able to on your own. You can also talk about other concerns and feelings that you are dealing with right now.

Talking with Your Children about Advanced Cancer

Children of all ages can sense when things are wrong. Keeping your children's trust is still very important at this time. It's best to be as open as you can about the fact that your cancer is terminal. They may worry that they did something to cause you to get sick. They may be afraid that no one will take care of them. They may also feel that you are not spending as much time with them as you used to.

Some children become very clingy. Others get into trouble in school or at home. Let the child's teacher or guidance counselor know what is going on. It helps to keep all the lines of communication open, both with your kids and with the other people in their lives.

Although you can't protect them from what they may feel, you can prepare them. If they ask if you are going to die, you can tell them the truth with comfort and understanding. What you tell them and how they take it will depend on their age and what they have gone through already in life. While you can't protect them from pain and loss, you can help them cope with it and understand it as part of life. Try to:

• Be honest. Tell them you're sick and that the doctors are working to help you feel comfortable.
• Let them know that nothing they did or said caused the cancer. And make sure they know that they can’t catch it from you or others.
• Tell them you love them. Tell them it’s okay to be upset, angry, or scared. Encourage them to talk.
• Be clear and simple. Children do not have the focus of adults. Use words they can understand.
• Let them know that they will always be taken care of and loved.
• Let them know that it’s okay to ask questions. Tell them you will answer them as honestly as you can. In fact, children who aren’t told the truth about an illness can become even more scared. They often use their imagination and fears to explain the changes around them.

Talking with Your Teenagers about Advanced Cancer

Many of the things listed above also apply to teenagers. They need to hear the truth that your cancer is end-stage. This may help them from feeling guilt and stress. But be aware that they may try to avoid the subject. They may become angry, act out, or get into trouble as a way of coping. Others simply withdraw. Try to:

• Give teenagers the space they need. This is especially important if you have to rely on them more than before to help with family needs.
• Give them time to deal with their feelings, alone or with their friends.
• Let your teenager know that they should still go to school. Tell them they should keep taking part in sports and other fun activities.

If you have trouble talking with your teen about your cancer, you might want to ask for help. Try asking a close friend, relative, or health care provider for advice. You could also go to a trusted coach, teacher, or youth minister. Your social worker or doctor can help you as well.

Talking with Your Adult Children about Advanced Cancer

Your relationship with your adult children may change when you learn that you have terminal cancer. You may have to rely on them differently than you have in the past. It’s a normal reaction if you find that this is hard for you. Many people find this difficult. After all, you may be used to giving support rather than getting it. Or it may be hard for other reasons. Perhaps your relationship with your children has been a more formal or distant one.

Adult children have their concerns, too. They may become fearful of their own mortality. They may feel guilty because they’re overwhelmed by the many demands of their lives as parents, children, and employees and unable to be there with you as much as they want.

As your illness progresses, it helps to:

• Share decision-making with your children.
• Involve them in issues that are important to you. These may include treatment choices, plans for the future, or types of activities you want to continue.

Reaching out to your adult children and openly sharing your feelings and wishes may help them cope with your cancer. It could bring you closer to them as well. It may also help lessen any fears or conflicts that may arise between siblings when important decisions need to be made.

For more detailed information on talking to children about cancer, see the NCI booklets, When Someone You Love Is Being Treated for Cancer and When Someone You Love Has Advanced Cancer.

Talking to Children about Death

Children of all ages may wonder about dying, life after death, and what happens to the body. If someone close to them has advanced cancer, their world may be changing monthly, weekly, or daily. That’s why it's important to be honest with them and prepare them each step of the way.

It's important to answer all their questions. If not, they may imagine things or make up their own stories. Let them know that everything is being done to keep you comfortable.

Tell them the truth. Children deserve to be told the truth about a poor prognosis. Hiding the truth from them leaves them unprepared for your death and can prolong the grief they will feel. And if you don't talk about your condition or don't tell the truth about it, your children may have a hard time trusting others in the future.

By including children in the family crisis, you can give them healthy ways of coping with what is happening. You can show them how to hope for the best while accepting the likely outcome of death. If you're honest and up front, you're teaching them that death is a natural part of life. Your honesty shows them it’s okay to talk about death.

Counselors and oncology social workers can also suggest ways to talk to kids about death in ways they understand. They may know of local or national programs that offer help to children in these situations. Or they may suggest books, videos, and websites that explore these topics.

Family Disagreements with Advanced Cancer

Any problems your family may have had before the cancer diagnosis are likely to be more intense now that you have learned the cancer is terminal. And relatives that you or your family members don't know very well or who live far away may be around more often, which may complicate things.

It's common for families to argue over things such as:

• treatment options or whether to continue treatment at all
• when to use hospice care
• feelings that some family members are helping more than others
• money issues

Although everyone may be trying to do what's best, some family members may disagree as to what this means. Everyone brings their own set of beliefs and values to the table, which makes these decisions hard. It’s common for families to ask their health care team to hold a family meeting or to help with communication in some way.

Ask for Help or a Family Meeting

Often, talking with the people closest to you is harder than talking with anyone else. Some families are good at communicating with each other. And others have trouble expressing their needs to each other, even if they get along very well. Or sometimes families simply don’t get along.

If you don't feel comfortable talking with family members, ask a member of your health care team to help start a conversation. You could also ask a social worker or other professional to hold a family meeting. This may help family members feel more comfortable to openly express their feelings. It can also be a time for you and your family to meet with your team to solve problems that may have arisen and set goals.

It can be very hard to talk about the goals for care when someone has terminal cancer. But studies show that cancer care goes more smoothly when everyone stays open and talks about the issues.

You've probably felt a range of feelings while you've dealt with cancer. You may have had these emotions at other times in your life, too, but they may be more intense now. Everything changes when you learn that you have terminal cancer. Your thoughts may seem overwhelming at first. They may change each day or each hour. There’s no right or wrong way to feel or react. You may relate to all of the feelings below or just a few. You may feel them at different times, with some days being better than others.

Hope

You can still feel a sense of hope, despite your cancer. When you're told that remission may not be possible, you can hope for other things. These may include comfort, peace, acceptance, and even joy. Hoping may give you a sense of purpose. This, in itself, may help you feel better.

To build a sense of hope, set goals to look forward to each day. Plan something to get your mind off the cancer. Here are some tips from others with end-stage cancer:

• Plan your days as you’ve always done.
• Set dates and events to look forward to.
• Spend time with the people who matter to you most.
• Don’t stop doing the things you like to do just because you have cancer.
• Find small things in life to enjoy each day.

Don't limit yourself. Look for reasons to hope while staying aware of what's at hand.

Sadness and Depression

With a terminal cancer diagnosis, you may feel sad more frequently than ever before. You may want to cry a lot and at unexpected times. Feeling sad may cause you to have no energy or not want to eat. Know that you don't have to be upbeat all the time or pretend to be cheerful in front of others. Do what feels natural to you.

Depression can happen if sadness or despair seem to take over your life. Some of the signs of depression listed below are normal during a time like this. But it's a good idea to talk to your doctor if they last for more than 2 weeks. However, some of these symptoms could be due to physical problems. It's important to tell someone on your health care team about them because they can be managed, whatever the cause.

Signs of Depression

• feeling helpless or hopeless, or that life has no meaning
• having no interest in family, friends, hobbies, or things you used to enjoy
• losing your appetite
• feeling short-tempered and grouchy
• not being able to get certain thoughts out of your mind
• crying for long periods or many times each day
• thinking about hurting or killing yourself
• feeling “wired,” having racing thoughts or panic attacks
• having sleep problems, such as not being able to sleep, having nightmares, or sleeping too much

Grief

You may feel grief about having terminal cancer and the thought that you could be facing impending death. We all cope with loss or the threat of loss in different ways. How one person grieves may be different from another. It can vary depending on how you were raised or what culture you grew up in.

Some of the symptoms of depression can also apply to grief. But grief can also be expressed through constant feelings of sadness, loneliness, anger, fear, and guilt. It can even affect the way you think. For example, you may:

• get easily confused, can't concentrate, or feel lost
• have thoughts that repeat themselves over and over again
• feel low in energy or really tired
• feel forgetful or have a hard time remembering things
• not want to do things or see people

These are all very normal reactions to grief. What may help is to do the best you can to pace yourself. Accept that you're going through a lot right now and it's okay to feel what you feel.

What you grieve for is as varied as how you think and feel. You may grieve for:

• the loss of your body as it used to be
• the things you used to be able to do
• plans you made that may not get fulfilled
• leaving your family and friends

It's okay to take time for yourself and look inward. It's also good to surround yourself with people who are close to you. Let your loved ones know if you want to talk. Or let them know if you just want to sit quietly with them or would rather be alone. There is no right or wrong way to grieve.

Often, people who go through major change and loss need extra help. You can talk with a member of your health care team, a member of your faith community, or a mental health professional. You don't have to go through this alone.

Fear and Worry

Having end-stage cancer brings new fears and worries to life. Facing the unknown is very hard. You may be scared and concerned about:

• losing control of your life
• becoming dependent on other people
• what will happen to your loved ones in the future
• being in pain or feeling sick
• financial issues
• dying

All these fears are normal for many cancer patients. It takes time to come to terms with your illness.

Some people say it helps if you:

• Know what to expect.
  Learn more about your cancer and care options by asking questions of your health care team.
• Update your affairs.
  If you have not already done so, make sure your will, advance directives, and other legal paperwork are in order. Then you won’t have to worry about it.
• Try to work through your feelings.
  If you can, talk with someone you trust. Or ask for help from the hospital social worker or counselor.

If you feel overwhelmed by fear, remember that others have felt this way, too. It's okay to ask for help. Fear can be managed.

Anger

It's very normal to ask, "Why me?" and be angry at the cancer. You may also feel anger or resentment towards:

• your doctor and other members of your health care team
• healthy friends and loved ones
• if you're religious, you may feel angry with God

Anger often comes from feelings that are hard to show, such as fear, frustration, and helplessness. Give yourself time to sort through these feelings. It's okay to feel angry and you don't have to pretend that everything is fine. It's not healthy to keep it inside you. But at some point, you don't want to shut people out either. When you’re ready, talk with your family and friends about why you’re angry. Or ask your doctor to refer you to a counselor to work through your feelings.

Guilt and Regret

It's normal for people with advanced cancer to wonder if they did anything to add to their situation. They may:

• blame themselves for lifestyle choices
• feel guilty because treatment didn't work
• regret ignoring a symptom and waiting too long to go to the doctor
• worry that they didn't follow the doctor's advice in the right way

It's important to remember that the treatment failed you. You didn't fail the treatment. We can't know why cancer can be controlled in some people and not others. In any case, feeling guilty won't help—it can even stop you from moving forward with life plans or interacting with others.

So, it's important for you to:

• try to let go of any mistakes you think you may have made
• focus on things worthy of your time and energy
• look at what you can control, not what you can't
• forgive yourself

Some patients feel guilty that they’re upsetting the people they love by having terminal cancer. Others worry that they will be a burden on their families. If you feel this way too, take comfort in this: Many family members have said it is an honor and a privilege to care for their loved one. They consider it a time when they can share experiences and become closer to one another. Others say that caring for someone else makes them take life more seriously and causes them to rethink their priorities.

Maybe you feel that you can't talk openly about your feelings with your loved ones. If so, counseling or a support group may be an option for you. Let your health care team know if you would like to talk with someone.

Loneliness

As your cancer progresses, you may see family, friends, or coworkers less often and find yourself alone more than you would like. Or even if people are around, you may feel that they can't begin to understand what you're going through. Some people may even distance themselves from you because they have a hard time coping with your cancer. Others may think that you prefer to be left alone if you don’t feel well.

Although some days may be harder than others, remember that you aren't alone. Keep doing the things you've always done, the best you can. If you want more company, tell people that you don't want to be alone. Let them know that you welcome their visits. Ask that they reach out through mail, email, and telephone. You may also want to try joining a support group. There you can talk with others who share your feelings.

Inner Strength

You may have felt overwhelmed and in shock when you first learned that your doctors couldn't control your cancer. But at some point your feelings of helplessness may change. You may find physical and emotional reserves you didn't know you had. People often find strength in finding things they can do for themselves, no matter how small. Calling on your inner strength may help you feel better.

People work on their inner strength in different ways, such as:

• Some people find it helpful to focus on the present instead of the past or future. They accept that their daily routine may have to change.
• Others like to think ahead and set goals. They make plans for places to go and things to do that they enjoy.
• Some focus on the relationships they have with people close to them.

Inner strength is different for each person. Draw on the things in your life that are meaningful to you.

Thinking about the future can feel stressful, but there comes a time when it’s helpful to make certain decisions. Careful planning reduces the financial, legal, and emotional burdens your family will face after you're gone. For many people, it's hard bringing up these subjects. But talking about them now can avoid problems later.

Complete Advance Directives

If you have not done so already, it's important to fill out advance directives. These are legal papers that tell your loved ones and doctors what to do for you if you can't tell them yourself. Making these decisions now keeps you in control of how you want to be treated, and who you choose to be in charge of your care. By filling out advance directives, you're making your wishes known for all to follow. Doing so can also give your loved ones peace of mind.

Update Insurance Issues

Contact your health insurance company if you decide to try a new treatment or go into hospice. Most insurance plans cover hospice. They may also cover brief home visits from a nurse or a home health aide several times a week. But it's wise to ask in advance. This may prevent payment problems later.

Put Your Affairs in Order

You can help your family by organizing records, insurance policies, documents, and instructions. You may want to call a lawyer or financial planner to make sure you have taken all the right steps in doing these things. Your bank can answer questions about how to change accounts and credit cards. Other steps to take may be:

• Make a list of where your family can find important papers.
• Keep your papers in a fireproof box or with a lawyer.
• If your papers are in a safety deposit box, make sure that a family member or friend has access to the box.
• Although original documents are needed for legal purposes, give family members photocopies.

There are many different types of papers your family will need. You may not need all of the items on this list, but here is a guide. Write down contact information and what needs to be done for the following:

• Banks, savings, and loans
• Safety deposit box information
• Life insurance company
• Health insurance company
• Homeowners’ or renters’ insurance company
• Attorneys
• Accountant
• Pension or retirement plans
• Investment companies
• Credit card companies
• Employer

Making Funeral Arrangements

If it feels right to you, you may want to help your family plan a funeral or memorial service that has meaning to you. Although doing so may seem hard, planning this ahead of time will help your loved ones after your death. It will ease the burden of their having to make these choices themselves during a time of strong emotions and stress. Some people plan services that are celebrations, while others prefer something more subdued. Talk with your family about the type of service you would like.

What Are Advance Directives?

Advance directives are legal papers that tell your loved ones and doctors what kind of medical care you want if you can't tell them yourself. The papers let you state ahead of time what types of treatments you would like and who you choose to make sure your wishes are carried out. Planning your future health care is an important step toward making sure you get the medical care you would want.

All adults should have advance directives. It’s best to fill these out when you’re healthy in case you become ill or unable to make these decisions in the future. Think about taking action now to give someone you trust the right to make medical decisions for you. This is one of the most important things you can do.

What Are the Types of Advance Directives?

Living Will

A living will is a document used for people to state whether or not they would like to receive certain types of medical care if they become unable to speak for themselves. The most common types of care addressed by a living will are:

• The use of machines to keep you alive. Examples include dialysis machines and ventilators (also called respirators).
• “Do not resuscitate” (DNR) orders. These instruct the health care team not to use cardiopulmonary resuscitation (CPR) if your breathing or heartbeat stops.
• Tube feeding
• Withholding food and fluids
• Organ and tissue donation

Durable Power of Attorney for Health Care

A durable power of attorney for health care is a document that allows people to name another person to make decisions about their medical care if they are unable to make these decisions for themselves. (It is also called a health care proxy or medical power of attorney for health care.) People often appoint someone they know well and trust to carry out their wishes. This person may be called a health care agent, surrogate, or proxy.

Why Are Advance Directives Important?

Filling out advance directives gives people control over their health care. Choices about end-of-life care can be hard to make even when people are healthy. But if they are already seriously ill, such decisions can seem overwhelming. Some cancer patients want to try every drug or treatment in the hope that something will be effective. Others will choose to stop treatment. Although patients may turn to family and friends for advice, ultimately it is the patient’s decision.

It’s important to keep in mind that if a day comes where you choose not to receive or to stop treatment to control your disease, medical care to promote your well-being (palliative care) continues. This type of care includes treatment to manage pain and other physical symptoms, as well as support for psychosocial and spiritual needs. You have the right to make your own decisions about treatment. Filling out advance directives gives you a way to be in control.

When Should I Fill Out Advance Directives?

Ideally, these documents should be completed when you’re healthy. Yet many people connect filling out advance directives to making decisions near the end of life. But you don’t need to wait until being diagnosed with a serious illness to think about your wishes for care. In fact, making these choices when you’re healthy can reduce the burden on you and your loved ones later on. Talking about these issues ensures that when the time comes, you will face the end of your life with dignity and with treatment that reflects your values.

Talk to your doctor, nurse, or social worker for advice or help with filling out advance directives. Most health care facilities have someone who can help. As you prepare your advance directives, you should talk about your decisions with family members and loved ones and explain the reasons behind your choices.

It's hard to talk about these issues. But the benefits of talking to the people close to you about the kind of care you want are:

• Your wishes are known and can be followed.
• It often comforts family members to know what you want.
• It saves family members from having to bring up the subject themselves.
• You may also gain peace of mind. You are making the choices for yourself instead of leaving them to your loved ones.
• It can help you and your loved ones worry less about the future and live each day to the fullest.

If talking with your family and other loved ones is too hard, consider having a family meeting and invite a social worker or member of the faith community to guide the discussion. For more details on making these decisions, see the National Institute on Aging's page, Advance Care Planning. 

What Should I Do with My Advance Directives?

Once your advance directives have been completed, the next steps are:

• Review them with your doctor or other member of your health care team for accuracy before signing. Most states require a witness to be present at the signing of the documents.
• Give copies to your doctor, hospital, and family members after you sign them.
• Store copies in a safe place that's easy to access.
• Consider keeping a card in your wallet with a written statement that says you have a living will and durable power of attorney for health care and describe where the documents can be found.

Some organizations will store advance directives and make them available on the patient’s behalf. Contact the National Hospice and Palliative Care Organization for more information about companies that provide this service.

Can I Change My Advance Directives?

Even after advance directives have been signed, you can change your mind at any time. As a matter of fact, the process of discussing advance directives should be ongoing, rather than taking place just once. This way you can review the documents from time to time and modify them if your situation or wishes change.

To update your document, you should talk to your doctor and loved ones about the new decisions you would like to make. When new advance directives have been signed, the old ones should be destroyed.

Are There State Laws for Advance Directives?

Each state has its own laws regarding advance directives. Therefore, special care should be taken to follow the laws of the state where you live or are being treated. A living will or durable power of attorney that is accepted in one state may not be accepted in another state. State-specific advance directives can be downloaded from the National Hospice and Palliative Care Organization.

Looking for Meaning with Advanced Cancer

Many people who have advanced cancer look more deeply for meaning in their lives. They often want to:

• understand their purpose and their legacy
• examine the things they have gone through in life
• look for a sense of peace or a bond with others
• seek to forgive themselves or others for past actions
• look for answers and strength through religion or spirituality

Being spiritual can mean different things to different people. People have different ideas about life after death, miracles, and other religious beliefs. This is a very personal issue. And everyone has their own feelings about the meaning of life. Some people find meaning through religion or looking to a higher power. Some people find it by teaching or through volunteer work. Others find it in different ways, such as being in nature or through meditation.

Having advanced cancer may cause you to rethink what you believe. It may bring up anger, doubt, or other strong emotions. You may think about God or wonder about an afterlife.  This can bring a sense of peace and acceptance for some. For others, it can raise a lot of questions. Sometimes people feel they are being punished by God or have a loss of faith.  For some, once they learn they have terminal cancer, the beliefs they have may affect their treatment choices or how anxious they feel about death.

Learning you have advanced cancer may change your values. The things you own and your daily duties may seem less important. You may decide to spend more time with loved ones or helping others. You may feel like you’re learning what things are most important to you and who in your life you want to be with the most.

You may have already given a lot of thought to these issues. Still, you might find comfort in exploring more deeply what is meaningful to you. You could do this with someone close to you, a member of your faith community, or a mental health professional.

Or you may just want to take time for yourself to reflect on your experiences and relationships. Being in nature or spending time in places that bring a sense of calm and peace can help you reflect. Many people find that prayer, meditation, writing in a journal, or talking with others has helped them cope and explore their lives

Celebrating Your Life

Reflect on your life. Having advanced cancer often gives patients and family members a chance to look back on life and all they have done. They rethink the things that are important to them. Some like to:

• look at the different roles they have played throughout life
• think about what an event or certain time of life meant then, and what it means now 
• gather things that have meaning to them to give to their loved ones
• share memories or create projects with people who are close to them

Make a legacy. Doing the things above is often called "making a legacy.” Your legacy can be anything you want. Do whatever you want that brings joy and meaning to you. Some examples of things people have done:

• making a video or recording of special memories
• reviewing or arranging family photo albums or creating ones online
• charting or writing down your family’s history or family tree
• keeping a daily journal of your feelings and experiences
• building something with wood or metal
• making a scrapbook
• writing letters to loved ones and children
• reading or writing poetry
• creating art or jewelry
• giving meaningful objects or mementos to loved ones
• writing down or recording funny or meaningful stories from your past
• planting flowers or other plants with people close to you
• making a recording of favorite songs
• gathering favorite recipes into a cookbook

Create an ethical will. Some people with cancer also make what is called an ethical will. It's not a legal paper. It's something you write yourself to share with your loved ones. Many ethical wills contain the person's thoughts on his or her values, memories, and hopes. They may also talk about the lessons learned in life or other things that are meaningful. It can say anything you want, in any way you want.

Communication is important throughout cancer care. If you learn that you have advanced cancer, you will have choices to make about your care and what steps you need to take. For many, it’s hard to ask questions about what these steps should be. Some patients with advanced cancer benefit from new treatments, while others do not.

Whether you’ve just been diagnosed, or the standard treatment isn’t working, it's important to ask your health care team what to expect in the future. Studies show that patients who have these discussions with their doctor have a better quality of life than those who don’t.

You can hope for the best while still being informed about your choices. The more information you have, the better decisions you and your loved ones can make about how you want to move forward with your care. When you meet with your doctor, consider asking some of the following questions:

Questions about Your Cancer

• What does “advanced cancer” mean for me?
• How long can I live with my advanced cancer?
• Are there tests I should have now to better understand the extent of my cancer?

Questions about Treatment Choices

• What’s the best we can hope for by trying another treatment? What’s the goal?
• What are my treatment choices? Which do you recommend for me and why?
• Is this treatment plan meant to help side effects, slow the growth of my cancer, or both?
• Is there a chance that a new treatment will be found while we try the old one?
• Would a clinical trial be right for me?
• What kind of care will I receive to keep me comfortable if I decide not to have active treatment for my cancer?

Questions about Symptoms and Side Effects

• What are the possible side effects and other downsides of this treatment? How likely are they?
• How can I manage the symptoms of my advanced cancer or the side effects of its treatment?
• Can you refer me to a palliative care specialist to help me cope with my side effects?

Questions about Making the Transition from Cancer Treatment to Hospice Care

• How do I decide whether to continue or stop cancer treatment?
• When should I consider having hospice care?
• How can I make sure I have the best quality of life possible – that I am comfortable and free of pain?
• Can I have hospice care in my home, or do I have to go to a special facility?
• How can I get help with financial and legal issues (for example, paying for hospice care or preparing a will or an advance directive)?
• How can I get help with my spiritual needs?

Talking about these questions may help you decide whether to continue or to begin active treatment. Tell your health care team exactly what you want to know, and how much you can take in. If possible, it's best to involve your loved ones in this process. It will help you figure out your needs and the needs of others close to you.