When your child's cancer treatment stops working
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 treatment. This can be a difficult time for you and your family as you make decisions about ongoing treatment and what comes next.
End of life care - children; Palliative care - children; Advance care planning - children
What it Means When Treatment Stops Working
It is not always clear when to stop treatment. 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 is worth the side effects it causes your child, including pain and discomfort.
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:
Support for you and Your Family
It may be the hardest thing you have to do but changing your focus from treating cancer to letting go 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 she is not ready.
Your child's behavior can give you some clues. If your child asks questions about death, it could be a sign that she wants to talk. If your child changes the subject or wants to play, your child may have had enough for now.
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.
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 doctor 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.
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 August 14, 2018.
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 August 22, 2018.
National Cancer Institute website. Pediatric supportive care (PDQ) - patient version. www.cancer.gov/types/childhood-cancers/pediatric-care-pdq#section/all. Updated November 13, 2015. Accessed August 22, 2018.
Review Date: 7/26/2018
Reviewed By: Todd Gersten, MD, Hematology/Oncology, Florida Cancer Specialists & Research Institute, Wellington, FL. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team.
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