Plans and Decisions for End-of-Life Care as a Cancer Caregiver

Making New Decisions for Cancer Care

Your loved one may be struggling with advanced cancer or with a cancer recurrence. Doctors may be saying that the cancer isn’t responding to treatment. You may have been told that long-term remission isn’t likely. Or your loved one may have decided to discontinue treatment and live out their days to the fullest. 

This may be a time when new decisions need to be made. The burden of making these decisions together may seem much heavier than it used to be. These choices often come with many emotions, such as sadness, anger, and the fear of the unknown. But people usually cope better when they have information and know their options. Your loved one still deserves good medical care and support from the health care team even if the treatment changes.

For many families, it's important that the person with cancer be in charge of making decisions. Yet in some families and also in some cultures, it's common for family caregivers to make most of the decisions. And they may make them with or without the patient knowing. Or, sometimes the patient wants the caregiver to make all the decisions. Making these decisions may be hard on you for a number of reasons including:

• Your own desires for your loved one’s care may make it hard to decide what is best for them.
• Your ideas about how to move forward may differ from those of other family members and friends.
• The person with cancer may have different beliefs about care than you or other loved ones.
• The opinions of your health care team may differ from the patient’s or yours.

If you and your loved one with advanced cancer have different thoughts about next steps for care, you should talk about your opinions with each other. However, in the end, it's their choice. If you can't agree, you may want to ask someone else to guide the conversation between you both. You might talk to a member of your faith community, a social worker, other people dealing with cancer, or a hospice worker.

There may also come a time when you have to make medical decisions for your loved one because they can't anymore. It's important to get a sense of how they feel about certain issues while they can still tell you. For example, who would they like to be in charge of their medical decisions? Have they signed advance directives to express the care they want to receive?

Knowing what your loved one wants may mean letting go of some of your own opinions. For example, you may want to keep them alive, whatever it takes. But they may wish to stop receiving life-sustaining measures at a certain point. Try to keep things in perspective by looking at how the disease has advanced. Listen to the doctors and others who are giving care. Get the facts about the care you wish your loved one would get versus what is being given. 

If advance directives can’t be found and your loved one can’t speak for themselves, you may feel anxious and stressed as you decide what choices to make for their care. Think about what they would want, or imagine what they would say if they could talk. Try to remember if something was said in the past that would help you decide.  

Know that it’s common for family members to disagree on what kind of care to give your loved one. If this is the case for you, ask a member of your health care team to hold a family meeting and lead a discussion. They can explain the goals of the medical care being offered. For example, are they to:

• Slow the cancer?
• Lessen pain and other symptoms?
• Prolong life?

Talking about these issues can help answer remaining questions. Having this talk with everyone present may lessen the conflicts and help the family reach a decision for your loved one.

Changes that May Occur as Cancer Progresses

Sometimes, as the disease progresses, changes take place in the person with cancer. These may be due to the side effects of treatment or the cancer itself. Or they may be caused by other drugs. Some caregivers have said that they wished they had known sooner about what changes to expect.

Changes may occur in:

• looks
• personality or mood
• memory
• sleep
• appetite or nutrition needs

The person you're caring for may or may not go through any of these changes. But you should ask the doctor whether you need to be aware of them and what you can do about them if they happen.

Appetite changes. It’s okay to offer your loved one food but try not to pressure them to eat. We often think of eating well as bringing good health. But when people have advanced cancer, they may not have an appetite. Also, their bodies may need less food than in the past. 

Although giving food may be a way you feel you can nurture your loved one, it’s important for you to try not to force them to eat. If you’re worried that they aren’t eating enough or eating properly, ask the doctor or nurse for an opinion.
 

Making Decisions about Living Arrangements

After deciding on your loved one's choices for care, sometimes questions arise about whether the person with advanced cancer should live at home or be moved to a nursing or assisted living facility. When making these decisions, here are a few good questions to ask:

• What kind of help does your loved one need?
• If you’re the spouse or other person living with them, are you capable of taking care of them?
• If they live alone, is it risky for them to keep doing so?
• What are the options for home care?
• How often will they need help?

You’ll also need to consider how your loved one feels. They may fear:

• losing their independence
• being seen as weak or a burden to others
• moving to a health care or other type of assisted living facility

Sometimes it's easier to consider a change in living arrangements when the advice comes from a health professional. Social workers, including visiting nurses, those who work with older adults, and others may be able to help you talk to your loved one about these decisions.

What to Say to Someone with Advanced Cancer

What do you say to someone with terminal cancer? Whether it’s a spouse, family member, or friend, talking about serious issues is never easy. It’s normal to not know what to say to someone with end-stage cancer, or to worry that you’ll say the wrong thing. But the most important thing is not what you say, but that you're showing you care. For detailed information, see Talking to Family and Friends about Your Advanced Cancer. 

Words to try with someone with terminal cancer

Instead of: Dad, you are going to be just fine.
Try: Dad, are there some things that worry you?

Instead of: Don’t talk like that! You can beat this!
Try: It must be hard to come to terms with all of this.

Instead of: I can’t see how anyone can help anymore.
Try: We will be there for you always.

Instead of: What do the doctors know? You might live forever.
Try: Do you think the doctors are right? How does it seem to you?

Instead of: Please don’t give up. I need you here.
Try: I will miss you terribly. But we will get through somehow.

Instead of: There has to be something more to try.
Try: Let’s be sure to get the best of medical treatments, but we will be together when we have done all we can.

Instead of: Don’t be glum. You’ll get well.
Try: It must be hard. Can I just sit with you for a while?

From J. Lynn, J. Harrold, and J.L. Schuster. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University Press: New York, NY. 2011. Reprinted with permission.

Preparing Children for A Visit with Someone with Advanced Cancer

If your children don't live with the person who has terminal cancer, it's helpful to prepare them before they visit. The decision of whether or not to let them visit is up to you, the person with cancer, and perhaps other family members. However, children should also have a choice about whether or not they want to visit.

If your loved one is in a hospital or other facility, explain what the area and the room will look like. Tell them who might be there and what they might see. Also explain gently if their loved one’s physical condition or personality has changed.

For a younger child, you might say something like this:

• "Grandma is very sick. When you see her, she will be in bed. She may not have a lot of energy to play with you or talk to you as much. She may look a little different too."
• "Mom may be sleeping while you're there. Or she may be awake but won't talk because she's resting. But she'll know and be happy that you're there. She loves you!"
• "Don't worry if you're visiting Uncle Bill and he says things that don't make sense. Sometimes the medicine he takes makes him do that. If it happens, we can tell his doctor about it to make sure he's okay."

Sometimes children don't want to visit, or can't for other reasons. In that case, there are other ways of showing they care. They can write a letter or do artwork. They can call the patient or leave messages or songs in their voicemail. Encourage them to show love and support in any way they choose.