The importance of communication when the end is near
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. Use this information to get answers to your questions and concerns about this very sensitive and difficult time.
Who do you need to talk to?
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...”
Your health care team
Bill did what many cancer patients do at this stage of life. They choose to take more control and begin to actively plan the remaining part of their life.
Once the health care team says, “There are no more treatments that might cure your cancer,” the patient often thinks, “The ball is back in my court.” This 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 need complete and honest information. Telling your doctor exactly what you want to know and getting the information you need are empowering steps.
Focus on the good times
Cancer takes up a great deal of time and energy. Cancer and end-of-life care puts a huge physical and emotional burden on those closest to you. Your partner may be either your greatest ally or a big disappointment as a 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 try to meet your every need. Some people just can’t handle that kind of pressure and might withdraw under these circumstances. They could pull away just 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’re going through. Sometimes partners try to protect each other from the pain they’re 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 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, try to talk with your partner about what each of you is feeling. You’ll probably 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.
It’s 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 can’t squeeze a lifetime into a few months. Make the most of each day, be grateful for it, and greet the next one as 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. Tell him or her that you want to be close but that you don’t 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.
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 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 there’s too much for one person to do. Be sure to tell your partner you’re going to do that. In this way, you can help 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 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.
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.
- Explain to your family that you’re open to discussion and that you’re willing to talk about anything.
- Explore their thoughts and feelings with them.
- Tell them there may be times you don’t feel like talking and you’ll let them know when that is.
- Tell them 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.
- Tell your family that you’ll be as honest with them as you can be and would like the same from them in return.
- Tell them 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.
- Tell them about plans you’ve made or need to make and get their input.
Adult children may 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 be there in a few months. But professionals who work with families would strongly encourage you not to try that. 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.
Some friends respond as you would expect them to – they’re 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’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 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 his or her 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:
- 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?
You may find that some people aren’t willing to accept 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 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. Still, it’s your choice and you have to be comfortable with your decisions. 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 will help things go more smoothly.
At this time, you may prefer to focus on the quality of your life. You may want to feel as well as you can without any more cancer treatments and side effects. Know that any symptoms you have can always be treated. Treatment of symptoms, like discomfort and pain, is called palliative or supportive care, and it’s different from treatment aimed at the cancer itself.
Helen, age 72, with advanced cancer: “I’m going to tell my husband that I don’t want anyone pounding on my chest or putting tubes down my throat if I stop breathing. I just want to go naturally. I’m going to tell my children too.”
It’s usually not the act of dying, but the quality of dying that’s the biggest concern at the end of life. Most people who come to accept dying as a natural and normal part of life do not want to prolong the process when it won’t really change the outcome. But thinking about a good death is not something most people do. Some people want to stay at home and have hospice care there. Others choose to go to an assisted living center, a nursing home, or an inpatient hospice program. Some are in the hospital and want any treatment available to keep them alive as long as possible, no matter what their condition might be. Again, you should make the choices that you feel are best for you, your family, and your situation.
The goal of any cancer care is to give you the best possible quality of life. 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.
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.
Choosing hospice care
Hospice care puts you and your loved ones in the care of experts on the 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.
Contact us to learn more about Hospice Care.
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. An advance directive puts 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 you call 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.
Organ and tissue donation
Some people are interested in donating organs. Even though you have cancer, you still may have the options of donating either your corneas (from your eyes) or your entire body for medical research. If you would like your body to benefit someone or some cause after your death 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.
Babcock EN. When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer Patients. New York: New York, Bantam Books. 1997.
Coyle N and Ferrell BR. Textbook of Palliative Nursing. New York: New York, Oxford University Press. 2001.
Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With Physician Among Patients With Advanced Cancer. J Clin Oncol. 2015;33(32):3809-3816.
Foley KM, Back A, Bruera E, et al. When the Focus is on Care: Palliative Care and Cancer. Atlanta, Georgia: American Cancer Society. 2005.
Glass AP, Nahapetyan L. Discussions by elders and adult children about end-of-life preparation and preferences. Prev Chronic Dis. 2008;5(1):A08.
National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology. Palliative Care – Version 1.2016. Accessed at nccn.org on April 26, 2016.
Last Medical Review: April 29, 2016 Last Revised: June 8, 2016