What do children need to know?

Some people’s cancer may be advanced when they are first diagnosed. For others, the cancer may spread or come back (recur) after initial treatment. If the cancer has advanced, it is important to keep talking with your children. Again, just as with the initial diagnosis, children may sense that something is happening, and not telling them can add to their anxiety and distress.

Children may have similar feelings to adults after hearing the cancer has advanced. These include shock, denial, fear, anxiety, sadness, anger, guilt, or loneliness.

Preparing children and young people for the loss of a family member is a daunting and challenging thing to do. The following is a guide to what to cover in the initial conversation. These suggestions can help you use words they will understand.

Learn more about:

Being open and honest
Telling them what to expect
Balancing hope with reality
Waiting for your children to ask
Using words they can understand

Listen to our podcasts on Explaining Cancer to Kids and Family Dynamics and Cancer

Be honest and open

Once children know the cancer has advanced, they will need to be given some idea about what this may mean in terms of the outcome (prognosis). With some cancers, the prognosis is fairly clear and people will know that they may have only months to live. However, more and more people with advanced disease are surviving for a longer time, sometimes for many years.

If death is likely in the short term, it is best to be as honest and truthful as you can while trying to make the subject of death less frightening. For example, avoid saying that death is always peaceful as this may not be the case. If you need to talk about yourself or your partner, this can be an especially hard thing to do. You don’t need to do it on your own: social workers and other health professionals at the cancer treatment centre or the palliative care service can help you to tell your children.

Being open about death gives you and your family the chance to show and say how much you care for each other, as well as the opportunity to work on any unresolved issues. The chance to talk through old arguments and make amends seems to be particularly important for older children.

Tell them what to expect

Prepare children by explaining how the illness might affect the person in the days ahead and what treatment they may have. For example, they might be sleepy or need a lot of medicine. Young children tend to think in concrete terms, and it helps to talk about death as a change in function. For example, “When Grandma dies, her body will stop working. She will stop breathing, and she won’t feel anything either.”

Balance hope with reality

A diagnosis of advanced cancer does not mean giving up hope. Some people live for years with cancer that has advanced, and sometimes receive palliative treatment alongside active treatment. They can continue to enjoy many aspects of life, including spending time with their children and other people who are important to them.

As the disease progresses, the things that are hoped for may change. You can still be honest and offer hope. For example, a person may now focus on living comfortably for as long as possible or being able to celebrate a particular event. You can share these hopes with children while still acknowledging the reality of the situation and allowing them to prepare for the loss.

Wait for your children to ask

When you talk with your children about death, offer simple and short explanations. Give brief answers to questions they ask. Wait for the next question to emerge and respond to that. It usually doesn’t help to offer lots of explanations if your children aren’t ready to hear them. If they ask a question you don’t know the answer to, say you’ll find out and let them know.

Use words they can understand

Terms such as “passed away”, “passed on”, “lost”, “went to sleep”, “gone away” or “resting” can be confusing for children. It’s best to use straightforward language. This includes using the words “dying” or “death”. See What words should I use for some examples of how to explain these concepts.

This information was last reviewed in December 2018. View who reviewed this content.

We thank the reviewers of this book: Professor Kate White, Chair of Nursing, The University of Sydney, NSW; Sarah Ellis, Psychologist, Behavioural Sciences Unit, Kids with Cancer Foundation, Sydney Children’s Hospital, NSW; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Chandra Franken, Program Manager – NSW & ACT, Starlight Children’s Foundation, NSW; John Friedsam, General Manager of Divisions, CanTeen, NSW; Keely Gordon-King, Cancer Counselling Psychologist, Cancer Council Queensland; Stephanie Konings, Research Officer, CanTeen, NSW; Sally and Rosie Morgan, Consumers; Dr Pandora Patterson, General Manager, Research and Youth Cancer Services, Canteen, and Adjunct Associate Professor, Cancer Nursing Research Unit, The University of Sydney, NSW and Visiting Professor, Faculty of Health and Life Sciences, Coventry University, UK; Suzanne Rumi, Consumer; Michael Sieders, Primary School Program Manager, Camp Quality.

We would also like to thank the health professionals, consumers, organisations and editorial teams who have worked on previous editions of this title, and we are grateful to the parents and young people whose real-life stories have added to the richness and relevance of this book.

We thank and acknowledge Dr Paula K. Rauch, MD, Founding Director, Marjorie E. Korff PACT (Parenting At a Challenging Time) Program and Associate Professor of Psychiatry, Harvard Medical School, whose research and writing on helping parents talk to their children about cancer was used as source material for this book and has been adapted in several sections: pages 8 -11, Different views of cancer; page 24, Answering key questions: Are you going to die?; pages 26 -27, Involving the school or preschool; pages 30 -31, Prepare for hospital and treatment centre visits; and page 37, Encouraging family time. We also thank the American Cancer Society for permission to use and adapt material on pages 8 -11 from its book Cancer in Our Family: Helping children cope with a parent’s illness (2013); Macmillan Cancer Support for permission to use its book Talking to Children and Teenagers When an Adult Has Cancer (2013) as a source of information; Jessica Watt, Oncology Social Worker, Children’s Hospital Westmead, for her contribution on page 18, When another child has cancer; Diane McGeachy, Hobart Counselling Centre, for contributing material for page 38, Spending one-on-one time; and Dr Ranjana Srivastava, and The Guardian for permission to adapt €œHow do you tell your children you have cancer? €_x009d_, on pages 21 and 47 – full story is available at https://www.theguardian.com/society/2015/nov/29/how-do-you-tell-your-children-you-have-cancer.