An excerpt from Rethink’s new resource: Talking To Kids About Metastatic Breast Cancer written by Child Life Specialist, Morgan Livingstone, edited by Registered Psychotherapist Andrea Warnick, and illustrated Ashley Doyle.
Talking About Dying and Death
The other BIG question some kids ask, and parents tend to dread, is: “Are you going to die?”
Yep, that’s a BIG question, and one you want to be prepared to answer. Take some time to prepare how you will respond. For many of us, talking about death is scary but avoiding the topic can actually add to our fears.
No matter how far away your death is, it will take time to prepare children. Your eventual death will require difficult and emotional conversations that require preparation and time. Not sharing information with children and excluding them from the planning and preparations can create challenges in their coping abilities and can have a negative impact on them. When a family is facing the possibility of a death, this discomfort about death can sometimes create distance between children and loved ones. This distancing can be avoided with open and honest discussions about living with incurable cancer.
When responding to the “Are you going to die” question, it is best to respond in an honest and age-appropriate way.
“The doctors and nurses cannot make this cancer go away completely. They will work to treat the cancer in my __________ (include all areas where there is evidence of metastases) using medications/chemotherapy/radiation/surgery. At some point the medication will no longer work and I will die from this cancer. In the meantime I want to focus on spending quality time with you.”
“The doctors and nurses cannot make this cancer go away completely. I will have treatment to help slow the spreading cancer, and this treatment may last a long time to help me continue to live, but I will not survive this cancer. This cancer will eventually cause me to die.”
“We know that the cancer has spread to (a) different part/parts of my body. Where the cancer is now will impact my ability to live a long life. The cancer is difficult to treat now. This cancer will cause me to die. We are not exactly sure when this will be, but if we think it is getting close we will let you know”
It is important to use the actual words, “die”, “death”, “dying” and “dead”, instead of more abstract wording, such as “pass away” or “pass on” to prevent confusion about what is happening. Many young children have an unrealistic idea about what death is since so many cartoon and movie characters are able to “come back to life” after dying. It is important to be clear and help children understand how to differentiate between pretend deaths and real deaths. This can be done by explaining that when someone dies in real life, their body stops working and can never work again. It is forever.
Teachable moments: life and death are all around us
All around us in the world are living things that will all experience death at some time. “Life” can be explained to children as being what happens to all living things between the time of their birth and the moment they die.
Find opportunities to illustrate this for young children in nature, your community and even your home. There will be examples of death, such as a flower or plant that died, a fly on the windowsill that died, or a bird or squirrel that died in the yard. These are teachable moments that highlight death as a natural part of life. Explain to children that death is something that will happen to all living things.
Even when exploring these opportunities in nature, it is important to use the correct words: “dead”, “dying”, “died” and “death”.
“This flower has died. There could be many reasons why it died — not enough water, damage by bugs or an animal, too much cold, too much heat — or it was just at the end of its lifetime”.
“The squirrel died. It was hurt by a car/fell out of a tree. Its heart is no longer beating. Its lungs are no longer breathing. The squirrel is dead.”
There are many books available in bookstores and local libraries for children of all ages to learn about dying and death. These books provide the opportunity to discuss such topics either as a family or independently, since some children may prefer to read privately as they explore these concepts.
Many children’s movies offer stories of loss, dying and death and can be used as an opportunity to begin discussion about the characters’ experiences, as well as dying, death, and grief in general. Some movie deaths may not be peaceful, while others may be very peaceful. Some movies include the death of a pet, while others are about the death of a friend or family member.
Often surviving movie characters experience grief following the death. Use these moments to normalize that people have many different feelings after someone dies, and that most of these feelings are natural and healthy. In some instances, the movie may include a funeral or ceremony to acknowledge the death, which offers you a chance to share your personal beliefs and discuss your family’s beliefs and traditions about what happens after a person dies.