Communication with Others as You Near the End of Life

This is written for the person with cancer, but it also can be helpful to the people who care for, love, and support someone with advanced cancer. You can use this information to help get answers to your questions and concerns about this very sensitive and difficult time.

Who do you need to talk to?

You and your health care team

Communication between you and your cancer care team about decision-making during the final stage of life is very important. Ask questions, take more control, and begin to actively plan the remaining part of your life. It's normal to want to be prepared for the future.

Honest discussions about your options and your decisions is helpful for everyone involved in your care. Your cancer care team needs to know about any preferences you might have, such as where you want to receive care. It's also important to let them know about any cultural, religious, or spiritual beliefs or values. Telling your doctor exactly what you want to know and getting the information you need are empowering steps.

Your partner

Focus on the good times

Cancer takes up a lot of time and energy. Cancer and end-of-life care often puts a huge physical and emotional burden on those closest to you. Some people might thrive as caregivers, while others withdraw under these circumstances. They could grow closer to you, or pull away just when you feel you need them more than ever. Remember that your partner is dealing with their own emotions and probably feels a lot of pressure to be strong and to meet your needs.

It can be troubling to know what your partner may be feeling and thinking and to see the pain they’re going through. Sometimes partners try to protect each other from the pain they’re both going through. Relationships can become strained and conversations can be uncomfortable.

The loss of a partner 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, talk with your partner about what each of you is feeling. You may find that you’re both going through the same kinds of emotions. Try to accept what each person says without judgment, argument, or defending yourself. 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 having cancer 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 petty arguments go. Focus on the good times, happy memories, and the times you have been there for each other.

Alone time

It’s also important to allow personal space and private time for yourself and your partner. 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. Make the most of each day, be grateful, and know each day is a new chance to enjoy each other.

Sex and intimacy

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 and whether you feel you are able to have sex. . It's OK to feel like you want to just touch, hug, or hold hands.

Help take care of your partner

You may need to talk to your partner if you’re worried about being a burden to them because they’re taking care of you. Ask how they are managing it. Your partner might 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 themselves. Ask a friend or another family member to help out if you think there’s too much for one person to do. If you decide to ask others to help, be sure to tell your partner you’re going to do that. In this way, you can help take care of your partner, too.

Your family

Cancer is a family illness. Your loved ones are hurting too. Each member of your family is working through the idea of losing you. They need your love and understanding. Though it might seem unlikely, there are things you can do to help them manage better.

Adults

You can help adult family members by being open about your cancer, any news you've been given from your doctor, and any other needs you may have. Explore their thoughts and feelings with them. Tell your family...

• That you’re open to discussion and that you’re willing to talk about anything.
• That there may be times you don’t feel like talking and you’ll let them know when that is.
• That you’d rather not try to put on an act and have to pretend you’re happy if you don’t feel happy. Explain to them this doesn’t mean you aren’t OK. It might just mean you are feeling tired or a little down.
• That you’ll be as honest with them as you can be and would like the same from them in return.
• What you expect to happen in the future so they’ll be prepared. It also helps to share with them the expected signs of the dying process, and how to manage them should they occur.
• About plans you’ve made or need to make and get their input.

If you have adult children, they might be juggling their own children, jobs, and caring for you. It’s a stressful time. Sometimes they might not be able to meet your expectations. Open, honest communication will help you support each other through this time.

Children and teens

It’s natural to want to protect children from the harsh reality that you won’t physically be there for much longer. But professionals who work with families strongly encourage you to avoid trying to protect them. Even the youngest 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 tell them.

For more on talking with children and teens, see Helping Children When a Family Member Has Cancer: Dealing With a Parent’s Terminal Illness.

Your friends

Some friends respond as you would expect them to – they’re warm, supportive, and available. Other friends might seem to be more awkward around you. They might 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’re the same person and you’d like to spend some of your remaining time with them, if they’re willing to do that. Try to understand that what you’re 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 think about, some people may avoid spending time with you.

Religious or spiritual counselor

Religion and spirituality can be a source of strength for many people. Some find new faith during a cancer experience. Others find cancer strengthens their existing faith or their faith provides newfound strength. On the other hand, those who have never had strong religious beliefs may not feel an urge to turn to religion.

Spiritual questions are common as a person tries to make sense of both the illness and their life. This may be true not only for the person with cancer, but for loved ones, too.

Here are some suggestions for people who may find comfort in spiritual support:

• Be sure your doctor and cancer care team are aware of any beliefs that might affect your care decisions.
• A spiritual counselor can often help you find comforting answers to hard questions.
• Religious practices, such as forgiveness or confession, may be reassuring and bring you a sense of peace.
• A search for the meaning of suffering can lead to spiritual answers that can be comforting.
• Strength through spiritual support and a community of people who are there to help can be priceless to the patient and family members.

For those who are interested, a minister, priest, rabbi, other clergy member, or a trained pastoral counselor can help you identify your spiritual needs and find spiritual support. 

What do you need to talk about?

Treatment decisions

The goal of any cancer care is to give you the best possible quality of life. At this time, you may want to feel as well as you can without any more cancer treatments and side effects. This is a very personal issue. There are ways you can be sure that your family and your health care team know what’s important to you and what you want to be able to continue to do. Keep in mind that decisions do not have to be forever. In some cases, you can change your mind about treatment. Or, you can change your mind about some other part of your care. Still, it’s your choice and it's important that you are comfortable with your decisions.

You may find that some people question your decision to stop getting cancer treatment. Even if they don’t understand or agree, you still must follow your own sense of what’s best for you. If someone questions you, explaining that you have fully explored all options together with your doctor should be enough to help them understand. You may want to share the reasons for your decision so they can better understand. Making your medical team and your loved ones part of the decision-making process can help things go more smoothly. It might not be possible to completely relieve all symptoms that you have, but they can be treated. Treatment of symptoms, like discomfort and pain, is different from treatment aimed at the cancer itself.

Advance directives

It might not be enough to just tell your family about your medical care wishes. You can choose the kind of treatment you get and refuse any treatment that you don’t want, but only if you plan ahead. If you haven’t already made a decision about your care at the end of your life, now is the time to do it. Advance directives put your decisions about your future health care in writing. Advance directives are legal documents.

Talk to your family about your wishes so they know what you want. Be sure your closest family members can quickly and easily find a copy of your advance directive.

See Advance Directives for more details on the types of documents available, how to create one that meets your needs, and what it means if you have one.

An important note: If someone calls 911 or Emergency Medical Services (EMS), even after an expected death, the law often requires that EMS try to revive the patient or take them to a hospital. Be sure that your family and friends are ready and know exactly what you want, so that they don’t dial 911 in confusion or panic.

Choosing hospice care

It’s usually not the act of dying, but the quality of dying that’s one of the biggest concerns at the end of life. People who come to accept dying as a natural and normal part of life may not want to prolong the process. But thinking about whether to stay at home or go elsewhere for care is one decision many want to make. Some are in the hospital and want all treatment available to keep them alive as long as possible, no matter what their condition might be. Some choose to receive hospice care at home. Others choose to go to an assisted living center, a nursing home, or an inpatient hospice program. Again, you should make the choices that you feel are best for you, your family, and your situation.

At this point it’s important to think not only about how you’re going to live the next few months, but also try to think about and prepare for how you’re going to die.

Hospice care puts you and your loved ones in the care of experts on end of life concerns. Hospice care focuses on quality of life rather than length of life. The hospice philosophy accepts death as the final stage of life: it affirms life and neither hastens nor postpones death.

Hospice care is used when your disease can’t be cured, and you are expected to live about 6 months or less if the illness runs its usual course. It gives you supportive or palliative care, which is treatment to help ease symptoms, but not cure the disease. Its main purpose is to improve your quality of life so that you can be as alert and pain-free as possible. You, your family, and your doctor decide when hospice care should begin.

Learn more in Hospice Care.

Organ and tissue donation

Some people are interested in donating organs. Some people with cancer may not qualify to be organ donors. Others may have the options of donating certain organs or tissues or your entire body for medical research. If you would like your body to benefit someone or some cause after your death, you should ask your doctor about these options.

Organ and tissue donation instructions can be included in your advance directive. Many states also have organ donor cards or add notations to your driver’s license. Be sure that your family and those close to you know your wishes about this.

For more information on this see Can I Donate My Organs If I’ve Had Cancer?

Letter of instructions

Although this is not a legal document, it can be very helpful. This letter can be a guide for your family to help them make decisions at the end of your life and after you are gone.

In the instructions, you can name who you want to look after or take in your children or pets. This is useful if the guardian you’ve named in your will lives out of state. You may also list names and phone numbers of those who should be contacted right after your death. This could include relatives, your lawyer, your financial adviser, the human resources manager at your former job, your insurance agent, or whomever else might need or want to be involved at this time.

You should list the location of important papers and bank and investment accounts. Note also the person who should contact these organizations. You may also want to leave instructions about the kind of funeral or memorial service you would like.

Copies of instructions should be given to the executor of your will, trusted family members, and/or other loved ones. Be sure to talk with the people who will need to carry out these instructions. Be sure they’re willing to follow your requests and see if they have any questions about your wishes.

Keep all of these documents in a safe place in your home. You can put them in a safe deposit box if you want, but give copies to close family members, members of your health care team, and your lawyer. It’s important to make sure more than one person knows where these documents are and can get to them quickly. It’s also important to tell your health care team what the documents say when and if the need arises. If your wishes have changed since you last set up such a document, be sure that old copies are destroyed and that your loved ones know where your new documents are.