Talking to your child about death

Talking about death is a very difficult part about caring for a child with advanced or incurable cancer. Most parents have no idea where to start or how to go about it. How, when and if you talk to your child about death can be influenced by many things. Your healthcare team can help you to create an environment where it is safe for you and your children to talk about these serious issues. This does not always result in an actual conversation about death, but that is OK.

Be honest

Some parents believe they can protect their child by not telling them the truth. Sometimes a child may know that they are dying before their family is willing to acknowledge it. Ask the palliative care team about ways you can talk to your child about death. Talking about death can allow you and your child to share memories, express love and say goodbye.

Pay attention and listen to your child

Pay special attention to and look for hidden meaning in your child’s comments and questions. They may be suggesting that they are ready to talk about a difficult subject. When talking to your child, look for signs that your child is uncomfortable with the conversation or doesn’t want to talk about something, such as changing the subject, looking away, fidgeting or playing with toys. Respect that they do not want to talk about the subject right now.

Be flexible and ask questions

Try to use everyday chances to talk about what your child is thinking and feeling. If you wait for the right moment, it might never come. By having many conversations with your child, you let them know that you are always available to talk. Try to ask questions that don’t have a yes or no answer. This allows your child to answer in their own way and may lead to more talking and questions. If your child isn’t interested in talking, try to let your child express themselves in other ways, such as through play or art.

Get help from the healthcare team

Your healthcare team can help you and provide support. They can answer difficult questions or provide ideas on how to talk to your child in ways that show your love, honesty and acceptance. They don’t know your child like you do, but they know a lot about how children usually behave and react. A child psychologist has special training in a child’s normal development. They can be a huge help in talking to a child about their cancer experience because they can adapt discussion to a child’s developmental age. A child psychologist is also helpful in providing support and treatment for siblings and parents who are expecting loss or grieving.

Give information appropriate to your child’s age

How children understand illness, death and dying depends on their developmental age. Knowing how your child understands or views death can help you know what kind of information to give your child and can also help to answer any questions they may have.

Babies and toddlers (children under the age of 3) are too young to understand death. Babies and toddlers are affected by the emotions of their parents and other people around them. Changes in routine and being separated from caregivers upsets them. Showing them all the time that you love them helps them feel secure no matter what is going on around them.

Children aged 3 to 5 often believe that death is temporary or reversible and they may not see it as a sad or bad thing. A great concern for them is being separated from their parents. They understand words literally – for example, they might be afraid of going to sleep if death is described as “going to sleep.” They may believe that death can be caused by thought and can blame themselves. Children this age need simple and clear explanations. Try to correct any of their ideas that are wrong, and avoid using euphemisms. An example of a euphemism is saying “pass away” instead of “die.”

Children ages 6 and older understand that death is final and can’t be changed. Children 6 to 8 years old may not think that death can happen to them. Around the ages of 8 to 12, children understand that death is universal and can happen to them. Children 6 to 12 years old may associate death with a tragic event. They may think of death as being done by something or someone bad rather than something going on in the body. These children may fear death. They may have a lot of questions about the details of death and what happens to the body. They may see death as both a physical and spiritual thing. They understand that death is permanent and that it can occur naturally as well as by accident. They can often understand abstract ideas, including the uncertainties and unknowns about death.

Teenagers often have an adult understanding of death. Teens may reject adult support and feel that no one understands them. They often have strong emotional reactions and may find it hard to talk about their feelings. Teens may find it easier to talk about things and find emotional support from their peers. Offer support to your child when needed, but also support their independence and help them get the support they need from other teens.

Expert review and references

  • American Society of Clinical Oncology (ASCO). Caring for a Terminally Ill Child: A Guide for Parents. Alexandria, VA.: American Society of Clinical Oncology (ASCO); 2015.
  • Fochtman D. Palliative care. Baggott C, Fochtman D, Foley GV, Patterson K (eds.). Nursing Care of Children and Adolescents with Cancer and Blood Disorders. 4th ed. APHON; 2011: 13: 468-509.
  • Friebert, S, and Hilden, J. Palliative Care. Altman, A. J. Supportive Care of Children with Cancer: Current Therapy and Guidelines from the Children's Oncology Group. 3rd ed. Baltimore, MD: The John Hopkins University Press; 2004: 21: pp. 379-396.
  • Kane, J. and Himelstein, B. Palliative Care in Pediatrics. Berger, A. M., Shuster, J. L. Jr., & Von Roenn, J. H., (eds.). Principles and Practice of Palliative Care and Supportive Oncology. 2nd ed. Philadelphia: Lippincott Williams & Wilkins; 2007: 73: pp. 813-824.
  • Care of the Dying Child and the Family. Tomlinson, D. & Kline, N. E. (Eds.). Pediatric Oncology Nursing: Advanced Clinical Handbook. Germany: Springer; 2005: 30: pp. 431-442.
  • Ulrich C, Sourkes B, Wolfe J. Palliative care for the child with cancer. Pizzo PA, Poplack DG (eds.). Principles and Practice of Pediatric Oncology. 6th ed. Philadelphia: Lippincott Williams & Wilkins; 2011: 49: 1404-1427.

Medical disclaimer

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