ACS :: The Importance of Communication

Bill, age 65, with advanced cancer: "The doctors told me there was nothing else they could do for me except keep me comfortable. I felt like I wanted more say in what was going to happen next. They had offered me all they could; now I felt like I needed a little control. I wanted my family to suffer as little as possible and I wanted it to be as easy as it could be for them. I told the doctor I wanted him to be very honest with me about how long I had left. He told me he thought I had a few months. That was pretty much what I thought and I appreciated his honesty. It wasn't his fault..."

Bill did what many cancer patients do at this stage of life take. They choose to take more control and begin to actively plan the remaining part of their life.

Once the health care team says, "We have no more treatment for your cancer," the patient often thinks, "The ball is back in my court." Feeling this way is a healthy approach. Rather than being a passive recipient of care, you may now want to start thinking about how to help others accept and enjoy the time you have left. To do this, you will need complete and honest information. Telling your doctor exactly what you want to know and getting the information you need is an empowering step. (In the section, "Making end-of-life decisions," we will describe some ways for you to be sure that your wishes are followed, even if you become unable to communicate them.)

Some people are not willing to accept "no treatment." You may find that you want to get a second opinion and continue to actively fight the cancer. That's OK! It is your choice and you have to be comfortable with the decisions you make. Making your medical team and your loved ones part of the decision-making process will help things go more smoothly.

If you opt for more treatment in spite of a doctor's recommendations, explain your decision to those involved in your care. Even if they do not understand or agree, you still must pursue your own sense of what is right for you. As long as you have fully explored all options, your friends and family will most likely support you. Keep in mind that no decision is forever. You can change your mind about treatment at any time.

You may be a person who has never needed a large support network. Maybe it is not easy for you to reach out to others, especially when you may feel you do not have a lot to offer in return. Even so, there may be people in your life who want to support you through this time. They may be waiting for you to tell them what to do and how to help. If friends and family are not available, there are often others who are. Online networks of support are also available, such as the American Cancer Society Cancer Survivor Network. Your local health care community may have support groups, and your religious community may have people who simply enjoy serving others. Hospice teams (which we will talk more about later) offer support resources for people with cancer. It is unrealistic, and maybe even unhealthy, to try to get through this time without supportive, loving people in your life. This is the time to reach out and enjoy people and the gifts they have to offer.

Cancer takes up a great deal of time and energy. Cancer and end of life care places a huge physical and emotional burden on those closest to you. Your partner may be either your greatest ally or your most disappointing source of support. There are obvious reasons for this. Your partner is probably dealing with his or her own emotions and yet feels a lot of pressure to come through for you and meet your every need. Some people just can't handle that kind of pressure and may withdraw under these circumstances. They may pull away at a time when you feel you need them more than ever. This can be very painful.

On the other hand, your partner can be right there for you and that can be painful, too. It can be very troubling to know everything your partner is feeling and thinking and to see the pain they are going through. Sometimes partners try to protect each other from the pain they are both going through, but when this happens, honesty is sacrificed. Walls are built up, topics are avoided, and relationships can become strained and uncomfortable.

The death of a spouse is one of the most stressful events a person can experience. Living with and anticipating this loss every day is even more stressful. If at all possible, try to talk with your partner about what each of you is feeling. You will probably find that you are both going through the same kinds of emotions. Try to accept what each person says without judgment, argument, or defenses. Simply let each person say what they feel. Don't try to fix the feelings. Be aware of them and express your love and care for each other. This is another chance to try to make any past wrongs right and comfort each other. But just because you are sick doesn't mean that you won't get angry and frustrated with each other. Try to focus on the comfort you can give each other and let the petty arguments go. Focus on the good times, happy memories, and the times you have been there for each other.

It is also important to allow each other personal space and private time. Reassure each other that you still love each other, but it's OK if you both need some time to be alone. This is a common need as a person faces the end of life. No one can be with someone 24 hours a day. And you cannot squeeze a lifetime into 2 months. Make the most of each day, be grateful for it, and greet the next one as a new chance to enjoy each other.

At this stage of your illness it may be hard to be as sexually close as you have been in the past. You may be tired, in some pain, or simply not interested in sex. But you can still keep physical contact in your relationship and share intimacy. Talk with your partner about your needs. Tell him or her that you want to be close but that you do not feel you are able to have sex. Make sure your partner understands you want physical closeness and affection. At this time simply touching, hugging, and holding hands may feel more intimate than other forms of physical contact.

You may need to talk to your partner if you are worried about the burden they are under because of taking care of you. Ask how he or she is managing it. Your partner may show signs of emotional and physical stress, such as depression, headaches, trouble sleeping, or weight loss or gain. Remind your partner to take care of him or herself. Ask a friend or another family member to help out if you think it is too much for your partner and tell him or her you are going to do that. In this way, you can take care of your partner, too.

Cancer is a family illness. Your loved ones are hurting too. Each member of your family is working through his or her own emotional responses to the fear of losing you. They need your love and understanding. Though it may seem impossible, there are things you can do to help them manage better.

You can help adult family members by being open about your disease process, the amount of time you've been told you have left, and any other needs you may have. It also helps to share with them the expected symptoms of the dying process, and how to manage them should they occur. Explain to your family that you are open to discussion and that there is nothing that you aren't willing to talk about. Explore, with your family, their thoughts and feelings. Tell them that although you are open to talking, there may be times you do not feel like talking and you will let them know when that is. Tell them that you would rather not try to put on an act and have to act happy if you don't feel happy. Explain to them this doesn't mean you aren't OK. It may just mean you are feeling a little blue or tired.

Tell your family that you will be as honest with them as you can be and would like the same from them in return. Give them information about what you expect to happen in the future so they will be prepared. Tell them about preparations you have made or need to make and get their input. Adult children may be juggling their own children, jobs, and caring for you. It is a stressful time. Sometimes they may not be able to meet your expectations. Open, honest communication will help you all support each other through this time.

It is natural to want to protect children from the harsh reality that you will not be here in a few months. Professionals who work with families would strongly encourage you not to do that. Your children, even the youngest ones, need some type of preparation for the future. Honesty is important. Children can usually sense changes or stress in the household and know when something is wrong. Many times what they imagine is far worse than anything you have to tell them.

Children naturally focus mainly on themselves. And they often think they caused the problems they sense in those around them. They may even believe that something they've done caused the cancer to grow. It is up to you to assure them that they had nothing to do with your cancer, with its growth, or with the fact that you will not win your battle against it. Let them know that you will keep fighting, but the doctors have given you all the treatments they can.

Tell them you want to share some good times with them before the cancer takes over. Children also need to know the plan that will be in place when you are no longer there. Explain in some detail what will happen when you are gone; how they will be cared for and by whom. If the child is mature enough, tell them that you will always be in their heart even if your body is not around. This will be a hard discussion. It is sad for you and for them, but they need to know these things. Tell your child that no topic is off limits. They can talk to you about or ask you any question they want.

Sometimes it helps to suggest people and places they can turn to when they are sad. Encourage your children to talk about their feelings. Make sure they know that you would consider it normal, and even helpful, if they had counseling or were in a support group to help them through this experience. Encourage your child to help you with some physical tasks, such as getting things for you or reading books to you. This way they do not feel so helpless or in the way. It is easy for busy adults to ignore or push children out of the way without meaning to do so. Don't allow your child to feel devalued at such a critical time. These moments with your child are precious. They will become fond memories they can cherish in the future.

Some friends respond as you would expect them to -- they are warm, supportive, and available. Other friends may seem to be more awkward around you. They may act as if they don't know what to say or do and seem to have a hard time being "normal." Sometimes you can talk to your friends about their discomfort. Explain that you are the same person and you would like to spend some of your remaining time with them, if they are willing to do that. Try to understand that what you are going through may cause your loved ones to think about the fact that they, too, will die. Because this is not a pleasant thing to do, they may avoid spending time with you.

Taking part in a group can give you sense of belonging. It also gives you a safe place to talk about fears and emotions that you may feel uncomfortable talking about to other people. Group involvement has been shown to ease isolation and reduce stress.

There are many types of support groups, both formal and informal. Some of the formal groups are set up for caregivers, others for people with certain types of cancers, or people of certain ages. There are bereavement groups for adults and even some for children who have lost a loved one to cancer. In a support group, you are with people who are coping with the same problems and issues that you are facing. The encouragement and understanding found in a group of people sharing a critical life experience can be very valuable. Groups may only last a given number of weeks or months or be open ended.

You may find it hard to go out to meetings in your last weeks of life. Some of the more informal groups, such as a neighborhood group of friends or a church group, may be willing to meet you in your home. Internet support groups may be a good option for people who are homebound and able to use a computer. Often hospice organizations are involved in the last months of life and they offer the help of staff members who can give specific types of support around specific needs. For example, there are staff members who talk about emotional support. There are also those who focus on spiritual concerns. Clergy or other spiritual leaders are often willing to make home visits to people in the last months of life.

You can get information on available support groups from your medical team, your facility or hospice social worker, or from your American Cancer Society.

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