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Planning for End-of-Life Care as a Cancer Caregiver

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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.

No one told us what these pills would do. My partner started to have mood swings and get really angry at me for no reason. Her nurse told me later that this was common when taking these drugs, but how was I supposed to know that?

Ashley

Making Decisions about Living Arrangements

After deciding on 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 Terminal 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.

This section offers advice on how to talk about terminal cancer. Your loved one with cancer may want to go to our patient section, Talking about Your Advanced Cancer, for tips as well.

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

  • the stage of the cancer
  • preparing for the future
  • fears about death
  • wishes at the end of life

Some families talk openly about these sorts of things, while others don’t. There's no right or wrong way to connect. But studies show that families who talk things out feel better about the care they get and the decisions they make. A few things to remember are:

  • You and your loved one 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 all involved.
  • Keeping the truth from each other isn’t helpful. It's important to get any thoughts or concerns you both have out in the open. You may find that you both are thinking the same things. Or you may find you’re thinking very different things. 
  • Often the best way to communicate with someone is to just listen. This is one of the main ways of showing that you’re there for them. It’s important to be supportive of whatever your loved one wants to say. It’s their life and their cancer. They need to process thoughts and fears in their own time and their own way.

Talking about Hard Subjects Related to Cancer

Bringing up issues related to terminal cancer can be tough. You may think, for example, that your loved one needs to try a different treatment or see a different doctor. Or they may be worried about losing independence, being seen as weak, or being a burden to you. 
What's important to remember is that your loved one has the right to choose how to live the rest of their life. Although you may have strong opinions about what they should do, the decision is theirs to make. Here are some tips on how to bring up hard topics: 

  • Practice what you’ll say in advance. 
  • Find a quiet time. Ask if it’s an okay time to talk.
  • Know what your goals are having this talk. What do you want as the result? 
  • Speak from your heart. 
  • Allow time for your loved one to talk. Listen and try not to interrupt. 
  • You don’t always have to say, “It’ll be okay.” 

Some people won’t start a conversation themselves, but may respond if you start first. But if you have trouble talking about painful 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. And if they don't want to go to the counselor with you, you can always go alone. You may hear some ideas for how to bring up these topics. You can also talk about other concerns and feelings that you're dealing with right now.

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.

Understanding Your Loved One's Wishes for Care

A terminal cancer diagnosis brings up a number of decisions to make. These may be about what type of care or treatment to receive. Or they may be about the kind of information patients and loved ones want to hear. Or deciding where to continue getting care.

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 what kind of 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.

Talking to Children about Death

Children of all ages may wonder about dying, life after death, and what happens to the body. 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 their loved one comfortable. Tell them that you will keep them updated. (For much more detailed advice on talking to children and others about advanced cancer, see our Talking to Others about Advanced Cancer section.) 

Tell the truth. Children deserve to be told the truth about a poor prognosis. Hiding the truth from them leaves them unprepared for their loved one's death and can prolong the grief they will feel. And if you don't talk about your loved one's 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 guide them toward healthy ways of coping with what is happening. You can help them prepare for their impending loss in healing ways, such as providing opportunities for them to say goodbye.

Know your own views. To answer tough questions from your kids about the potential death of your loved one, you need to know your own views on the subjects, including:

  • What are you hoping for?
  • What do you think will happen?

You can show children 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. You can also tell them that they won't be alone in their time of need. You will always be there for them.

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.

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.