End of Life
When Children Ask
Many parents with cancer or other serious illnesses say that one of their greatest worries is that their child might ask a question about death. Sometimes this worry interferes with a parent’s willingness to have any conversation with their child about their diagnosis or treatment. When asked by a child “Are you going to die?” some parents promise they will never die and others try to dodge the question by saying, “Everyone dies sometime.” Unfortunately, neither of these responses engages a child in a way that helps her cope with her real worries and may leave a child alone with unaddressed questions about a parent’s health.
Perspective and honesty
A number of key guiding principles will help you answer your child’s questions. You need to really understand what the child is wondering or worrying about when a question about dying is asked. Recognizing how children understand death at different stages of development will help you frame your answer in a way that is most likely to make sense to your child.
It is wise for the answer to be fundamentally truthful, so it is important to have an understanding of your medical status. Discussing your illness honestly will teach your child that you are trustworthy and that honesty is valued in your family. At the same time, you want to present your answer in a way that encourages a child to feel as safe as possible within a particular timeframe and assures her that updates can be expected if things change.
- First, ask your child to help you understand what led to the asking of this question. Is there a specific worry? Was something overheard? Or does your child assume everyone dies from cancer?
- Focus on the positive. Depending on what is truthful about your medical situation, you may tell your child that some people do die from cancers, but that you and your doctors are not worried about you dying now.
- Let your child know what the goal of your medical care is at this time. Are you being worked up to assess where the cancer is and what would be an appropriate treatment plan? Are you in treatment with a plan to do more tests to see how the treatment is working in weeks or months? Are you in remission? Do you have a recurrence that is being assessed or are your physicians considering further treatment?
- Explain what the treatment would do if it were successful. Some examples: The goal is for the surgery to remove the biggest part of the tumor and for the chemotherapy to get rid of any remaining cancer cells. The goal of this treatment is to keep the tumors as small as possible for as long as possible so that I can live with them for a long time. The goal of the radiation is to shrink the tumor that is causing the pain in my back.
- Identify a period of time in which your child does not need to worry about your survival. Some examples: We are not expecting any major changes in my health this summer, but if anything changes I will let you know. No one is worried about my dying in the next few weeks and I plan to enjoy every day and hope you can do the same.
- Explain the end of active treatment. If you have an advanced cancer and you are transitioning to palliative or comfort care, let your child know that further chemotherapy or radiation would not shrink your tumors or help you to live longer with your cancer. Let your child know that your plan is still to live as long as possible, but that this will not include the use of any of the treatments that have not worked. If your child notices changes in you including more fatigue, less mobility, or other symptoms associated with your advancing cancer acknowledge that these observations are accurate and that you too are sad that the cancer has grown and continues to spread.
Note: When you are in treatment for cancer it is often difficult for children to differentiate between symptoms of advancing cancer and side effects of treatment. Identify common side effects such as hair loss, fatigue, nausea, anti-nausea medication induced sleepiness, and so on, as side effects of treatment.