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When your child's cancer treatment stops working

End of life care - children; Palliative care - children; Advance care planning - children

Sometimes even the best treatments are not enough to stop cancer. Your child's cancer may have become resistant to anti-cancer drugs. It may have come back or kept growing despite several rounds of treatment. This can be a difficult time for you and your family as you make decisions about ongoing treatment and what comes next.

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What it Means When Treatment Stops Working

It is not always clear when to stop treatment directed at the cancer. If the first treatment did not work, doctors often try several different approaches. Usually, the chance of success goes down with each new line of treatment. Your family and child's health care providers may need to decide whether further treatment directed at the cancer is worth the side effects it causes your child, including pain and discomfort. Treatment for side effects and for the pain associated with the cancer and its complications never ends.

What Happens Next

If treatment is no longer working or you have decided to stop treatment, the focus of care will change from treating cancer to making sure your child is comfortable.

Even if there is no hope that the cancer will go away, some treatments can keep tumors from growing and reduce pain. Your child's health care team may talk to you about treatments to prevent unnecessary pain.

If you have not done so already, you will need to make some decisions about the end of your child's life. It is incredibly hard to even think about, but taking care of these issues can help you focus on making the best of the rest of your child's life. Things to consider include:

• What kinds of treatment to use to help your child stay comfortable.
• Whether or not to have a do not resuscitate order.
• Where you want your child to spend their final days. Some families are more comfortable in a hospital where a provider is right around the corner. Other families feel better in the comfort of home. Each family has to make the decision that is right for them.
• How much to involve your child in decisions.

Support for you and Your Family

It may be the hardest thing you have to do, but changing your focus from treating cancer to protecting your child from treatments that will not help can be the best thing for your child. You may be better able to understand what your child is going through, and what your child needs from you, if you are realistic about what is happening.

You do not have to figure this out on your own. Many hospitals and organizations have services to help children and parents cope with end-of-life issues.

How and When to Talk to Your Child

Children often know more than their parents think. They watch adults' behavior and listen to what they say. If you avoid difficult subjects, you could give your child the message that the topics are off limits. Your child may want to talk, but not want to upset you.

On the other hand, it is important not to push your child to talk if they are not ready.

Your child's behavior can give you some clues. If your child asks questions about death, it could be a sign that they want to talk. If your child changes the subject or wants to play, your child may have had enough for now.

• If your child is young, consider using toys or art to talk about death. You may talk about what happens if a doll gets sick, or talk about a book about an animal that dies.
• Ask open-ended questions that give your child a chance to talk. "What do you think happened to Grandma when she died?"
• Use direct language that your child will understand. Phrases like "pass away" or "go to sleep" may simply confuse your child.
• Let your child know that they will not be alone when they die.
• Tell your child that the pain will go away when they die.

How to Help Your Child

Your child's energy level will play a key role in how to spend the next weeks or months. If possible, keep your child involved in normal activities.

• Stick to routines like family meals, chores, and bedtime stories.
• Let your child be a child. This may mean watching TV, playing games, or sending texts.
• Encourage your child to stay in school if possible.
• Support your child's time with friends. Whether in person, on the phone, or online, your child might want to stay connected to others.
• Help your child set goals. Your child might want to take a trip or learn something new. Your child's goals will depend on their interests.

Help Your Child Prepare

As sad as it is, there are ways you can help your child prepare to die. Let your child know what physical changes may happen. Your child's provider may help you with this. While it is best not to include scary details, knowing what to expect can help your child feel less anxious.

• Create family memories. You might go through photos and create a website or photo book together.
• Help your child say goodbye to special people in person or through letters.
• Let your child know what lasting impact they will leave behind. Whether it was being a good son and brother, or helping other people, tell your child how they have made the world a better place.
• Promise you will be OK when your child dies and will take care of the people and animals your child loves.

References

American Society of Clinical Oncology (ASCO) website. Caring for a terminally ill child. www.cancer.net/navigating-cancer-care/advanced-cancer/caring-terminally-ill-child. Updated April 2018. Accessed November 4, 2022.

Mack JW, Evan E, Duncan J, Wolfe J. Palliative care in pediatric oncology. In: Orkin SH, Fisher DE, Ginsburg D, Look AT, Lux SE, Nathan DG, eds. Nathan and Oski's Hematology and Oncology of Infancy and Childhood. 8th ed. Philadelphia, PA: Elsevier Saunders; 2015:chap 70.

National Cancer Institute website. Children with cancer: A guide for parents. www.cancer.gov/publications/patient-education/children-with-cancer.pdf. Updated September 2015. Accessed November 4, 2022.

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Review Date: 8/9/2022  

Reviewed By: Stergios Zacharoulis, MD, Associate Professor of Pediatric Oncology at Columbia University Irving Medical Center, New York, NY. Review provided by VeriMed Healthcare Network. Also reviewed by David C. Dugdale, MD, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team.

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