Caring for a Terminally Ill Child

Approved by the Cancer.Net Editorial Board, 11/2022

Curing childhood cancer is not always possible. Sometimes, treatment cannot make cancer go away completely. But the health care team can still treat a child's cancer and make them comfortable.

Children with advanced cancer sometimes live for many months or even years. They can have treatment to control the cancer and symptoms. This can help them live as well as possible for as long as possible.

As a parent, you are very important to your child's treatment and quality of life. It is important to be honest with the health care team about:

  • What your family wants

  • What your child wants

  • Any concerns you or your child have

Many people on the health care team have skills, experience, and knowledge about children with advanced cancer. They can help you and other family members when the cancer cannot be cured.

Is there help for my child's symptoms and side effects?

Yes. There are specific types of care for children with advanced cancer.

Palliative care. Palliative and supportive care helps with cancer symptoms and side effects. Your child can have this care at any time, even during active cancer therapy and they can continue to receive it even if active therapies are unsuccessful.

Palliative care is given to help your child live as comfortably as possible. It can also include help with emotional, social, and other needs.

Hospice care. Hospice care is given when someone is expected to live 6 months or less. Hospice care is often given at home. If your child wants to be home with family, pets, and other familiar things, hospice care can help them stay there.

Your child can also have hospice care at the hospital if you or your child prefer to be there. Talk with your child’s health care team about where you and your child want hospice care.

How do I talk to my child about dying?

Talking with your child about dying can be very difficult. Here are some questions and answers that may help.

When should I talk with my child? How and when you talk with your child is up to you. Before talking with them, you might want to think about:

  • How the doctor expects your child's cancer to develop (get worse)

  • What you think your child needs to know

If your child's cancer progresses slowly, you have more time to think about what to say. If the cancer will get worse more quickly, you might want to talk with your child sooner. You are the best person to decide what to tell your child and when.

Do I have to tell my child they are dying? You might want to protect your child by not telling them. But most children with advanced cancer already know they are dying or think they might be. They know this from watching and listening to adults around them. They may also sense the changes in their bodies.

Not talking with your child takes away the chance for them to share their worries and ask questions. Talking helps you both prepare, share memories, and say how much you love each other.

Be as honest and open as you can. Your child will feel less anxious knowing what to expect. Also let your child talk about their questions and fears.

Does my child really understand death? Knowing what your child thinks about death will help you talk with them and answer questions. Typical ways children think at different ages include:

  • Preschool age: These children are too young to understand that death is permanent.

  • School age: These children are just starting to learn that death means the end of physical life.

  • Teens: Teens usually understand that death means an end to the physical body. Dying goes against their age-appropriate need to feel independent and control their future.

Things that affect how your child thinks include:

  • How your culture thinks about death

  • Your family's religious or spiritual beliefs

  • Things your child has seen, heard, or read

You can learn more in an article on this same website called How a Child Understands Cancer.

Tips for talking about death

Talking about death and dying is difficult. You can ask someone on the health care team for advice or to be with you, if you want. Other tips include:

  • Look for signs that your child is ready to talk, such as bringing up the subject of death or asking questions about it.

  • Look for signs that your child is done talking for now. These include changing the subject, looking away, fidgeting, or playing with toys.

  • Find chances to talk about your child's thoughts and feelings about death. These can include when a pet dies or someone in a book or movie is sick.

  • Use simple words, such as "death" and "dying," instead of “passing away” or “going to sleep.”

  • Ask open-ended questions that let your child share their thoughts, such as "How did you feel when Grandma died?" Avoid yes or no questions, like "Were you sad when Grandma died?" These questions give your child less of a chance to say what they are thinking.

  • Look for hidden questions about death. For example, your child may ask, "What do you think happened to Grandma after she died?" This might be one way of asking what you think will happen when they die.

  • Use toys or art to help you talk with young children. Your child might be able to talk more easily about a child in a picture than themselves. Or they might be able to tell you how a teddy bear or other toy is feeling.

How can I comfort my child?

Here are some things to say that may comfort your child.

  • Tell your child they will not be alone. It is important for your child to hear that you or another person they love will be there when they die and that you will always love them.

  • Tell your child that all their pain and discomfort goes away after death and never comes back.

  • Help your child remember special things they have done. Talk about the friends, family, teachers, nurses, and others who will always remember them.

  • Talk about your faith or other ideas about death and what happens afterward.

  • Tell your child it is OK to die if you think it might help. Your child might feel guilty about leaving you. They might worry about what will happen to you and others without them.

How can I help my child?

You might feel helpless if your child has advanced cancer. But you can still help with your child's physical, emotional, and social needs. These needs will change as the cancer progresses. Pay close attention to your child so you can help with what they need most.

Here are some ways to help your child fully enjoy being a kid for as long as possible.

  • Give your child time to play and do other normal activities, such as watching videos or TV, reading, and playing outside.

  • Encourage your child to keep going to school, even just part-time. If they miss a lot of school, ask the teacher if their class can send letters, pictures, or videos.

  • Encourage your child to keep up with friends and other people who mean a lot to them.

  • Encourage your child to have goals, like learning to read or taking a special trip. Meeting short-term goals gives your child a sense that they did something important. It also helps them feel that life has meaning.

  • Keep setting limits on your child's behavior. Practice normal parenting. Without limits, your child will feel overwhelmed and out of control.

  • Talk with the health care team if your child has pain or other symptoms. It is important to have these treated quickly so your child feels as comfortable as possible.

Things you can do before the end

Your child will have some different needs towards the end of life. Here are some things to think about doing around this time.

  • Give your child as much privacy and independence as you can.

  • Encourage your child's end-of-life wishes. They may want to give away special belongings, write letters or make videos, or go on a special adventure. Learn about organizations that help children fulfill their wishes before the end of life.

  • Give your child time to say goodbye to family, friends, teachers, and other special people. They can do this in person, with a letter, video or phone call, or through you.

  • Talk with your child's health care team about your child's physical symptoms. Controlling pain is especially important.

  • Talk to your child about what might happen physically as the end gets closer. Remind them that the health care team will help them feel better. Knowing what to expect will ease your child’s anxiety and fear.

Getting help coping with your child's death

It is not natural for parents to live longer than their children. Nothing can take away the sadness and distress you feel when your child has advanced cancer. But there are ways to feel less alone. Things that might help include:

  • Talk with your spouse, family members, or friends about your feelings and fears. It is normal to feel angry, frustrated, guilty, and extremely sad.

  • Talk to a professional grief counselor. Or join a support group with other parents of children with advanced cancer.

  • Say yes when family and friends offer to help whenever you are able. This can make you feel less exhausted, physically and emotionally.

  • Ask your child’s health care team what to expect when your child is near death. They can tell you what you might see and hear, such as changes in breathing. Knowing what to expect will help you feel more prepared.

  • Make sure advance directives and any other legal documents are complete before you need them.

  • Consider making funeral arrangements ahead of time. You can also make other plans, such as deciding whether you want an autopsy. Planning ahead lets you spend more time with your child at the end of life. This also helps avoid making decisions in a crisis.

Throughout this experience, spend time with your child. Tell them how much you love them. You might want to look through photos, watch videos, or spend time with other family members and friends. You can share stories and memories of all the times you have had together.

Learn more about taking care of yourself as a caregiver.

Questions to ask the health care team

Here are some questions you might want to ask your child's health care team about advanced cancer and end of life (EOL) care.

  • How long do you expect my child might live with advanced cancer?

  • Should my child still have treatment to slow down the cancer or shrink tumors?

  • What symptoms or side effects could my child have? How can we treat those?

  • What activities can my child still do?

  • What might help my child live longer or feel better?

  • Is there any support available for my child, such as a group or an organization that helps kids fulfill special wishes?

  • Is there a support group for me or our family? Who can help me find support?

Related Resources

How a Child Understands Cancer

Grieving the Loss of a Child

Care Through the Final Days