When cancer won’t go away

This information is a starting point for talking to your children if someone they love has cancer that has come back or spread. The issues are complex, emotional and personal, so you may find reading this information difficult. If you want more information or support, talk to the professional staff at the hospital.

How adults react

  • If you are told that the cancer is advanced, you suddenly confront challenging emotional issues and the possibility of death. You might feel strong emotions, such as fear, anger, guilt, loneliness or denial.
  • Many people say that the news of advanced cancer is more devastating than the original diagnosis. Anxiety and depression are common and it can be harder to cope emotionally.
  • You may be worried about the impact of the cancer on your family. Some people avoid talking about the advanced cancer because they don’t know what to say. However, people with advanced cancer who express their emotions and communicate with family and friends may find it easier to cope.
  • For some people, faith and spiritual beliefs can help them get through tough times. For others, cancer can test their beliefs. Either way, you may find it helpful to talk to a spiritual adviser.

How children react

  • If the cancer has advanced, it is important to keep talking with your children. Again, just as with the diagnosis, children may sense that something is happening, and not telling them can add to their anxiety and distress.
  • How you react to a diagnosis of advanced cancer can affect how the whole family adjusts. If you are anxious and depressed, the family may be too.
  • Some studies of people with advanced cancer show that family members often feel more distressed than the person with cancer. This seems to be more common where there is a lack of communication.
  • When children find out that the cancer is advanced, they may have similar but more intense reactions than when they found out about the original diagnosis. They are likely to feel insecure, although teenagers may not want you to see this. Depending on their age, kids usually have different immediate concerns when they hear the news.

What should I tell my children?

Preparing children for the loss of a parent is an incredibly hard thing to do. The following is a guide to how you can approach the initial conversation.

Be honest and open

  • Once children know the cancer has advanced, they will need to be given some kind of an 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 only have 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 as you can. 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 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 unresolved issues. The chance to talk through old arguments and make amends seems to be particularly important for older children.

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.

Tell them what to expect

  • Prepare children by explaining how your illness might affect you in the days ahead. For example, you might be sleepy or need a lot of medicine.

Wait for your child to ask

  • Give brief answers to questions they ask. It usually doesn’t help to offer lots of explanations if your child isn’t ready to hear them.

Balance hope with reality

  • Parents worry that if they talk about the death they take away their children’s hope. You can still be honest and offer hope. Tell your kids how the person with cancer is being cared for – the treatment they’re having, what the doctors say, and what things can be put in place to make things easier for the family.

What children understand about death

In preparing children for the loss of a parent or other loved one, it can help if you understand how death is perceived at different ages.

Newborns, infants and toddlers

Understanding of death
  • Babies don’t have any knowledge of death.
  • Can sense when routine is unsettled.
  • Confuse death with sleep and don’t understand its permanence.
Possible reactions
  • may worry persistently about the well parent
  • they may think that they or their behaviour caused the cancer to become advanced
  • angry with the parent for not being able to give them more attention
Suggested approaches
  • Avoid explaining death to young children as sleeping, because it can cause distress about sleep. Children may have frightening dreams and ask lots of questions about death.

Younger children, 3-5 years

Understanding of death

  • Understand the concept of death but struggle with the permanence of it (e.g. they may ask when the dead parent is coming home).
  • Death can be hard to explain because young children don’t have an adult concept of time. They only understand what’s happening now. For example, a four-year-old knows what it’s like to have two sleeps till her birthday but doesn’t grasp the meaning of a reduced life expectancy.
Possible reactions
  • may feel it is somehow their fault
  • angry with their parent for not giving them enough attention
  • can react as if they were much younger when they are feeling stressed
Suggested approaches
  • Watch their play for clues to their feelings.

Older children, 6-12 years

Understanding of death

  • Understand death but often don’t have the emotional maturity to deal with it.
  • Younger children may think death is reversible and that they are responsible.
  • Older children have more of an understanding of the permanence of death.
Possible reactions
  • sadness or distress
  • anger
  • worry about being responsible
  • may ask questions about what happens when somebody dies
Suggested approaches
  • Encourage them to talk about their feelings, but realise they may find it easier to confide in friends, teachers or other trusted people.
  • Provide plenty of physical and verbal expressions of love.
  • Be sensitive but straightforward.
  • Talk about role changes in he family.
  • Provide privacy as needed.

Secondary school, 13-18 years

Understanding of death

  • Understand death as much as an adult, but may not have the emotional capacity to deal with its impact.
  • Research suggests that teenagers need preparation for a parent’s death as much as possible. They’re often more distressed when their parent is ill than after the death.
Possible reactions
  • may deny their feelings or hide them in order to protect you
  • may not look to others for support thinking they can handle it alone
  • may distance themselves from their family and talk to their friends instead
  • struggle with not being able to do their normal social activities
  • worry that death is frightening or painful
Suggested approaches
  • Encourage them to talk about their feelings to friends or another trusted adult.
  • Negotiate role changes in the family.

Answering key questions

How you answer these questions depends on the nature of the cancer and the effects of treatment. It may help to think about questions your children may ask in advance and to think about how you want to respond.

Asking the same question repeatedly is normal for children. By answering your children’s questions over and over again, you are helping to ease their worries. Sometimes children may test you to see if your answers stay the same. Try a different approach to answer your child’s questions each time they ask.

Q. When will Dad/Pop/you die?

Time is a difficult concept for young children so it may not help to give even vague timeframes. Older children may want some idea. It is still important to balance hope with reality.

A. “Nobody knows for sure when anyone will die. The doctors have said Dad/Pop/I will probably live for at least … months/years. Whatever happens, we want to make the most of that time. Dad/Pop/I will be trying to live for as long as possible.”

When death is near, you may need to give a different answer.

A. “I honestly don’t know, but Dad/Pop/I will probably get a little weaker each day now.”

“No-one can answer that, but we hope there’ll still be some good days.”

“Pop is very ill now because the treatment hasn’t made him better. He’s not having any more treatment and will probably die soon.”

Q. Who will look after me?

Many children will still be worried about who will look after them, so it’s best to tackle the question early on.

A. “It’s very important to me that you will always be safe and looked after. Dad will be there for you and your Aunty will help you all.”

“In case you’re worried about what will happen if the treatment doesn’t work and I’m not around, I’ve already talked to your Uncle and Grandma and they will be there for you and look after you.”

Q. Is it my fault?

A. “It’s no one’s fault. Nothing you, or anyone else, did or said made me ill.”

Q. What happens if Mum/Dad/Nanna dies too?

A. “When someone you love is very sick, it can make you feel very scared. But Mum/Dad/Nanna are well and healthy now and they will be around to look after you. Whatever happens, we will make sure you are cared for and looked after.”

Q: Am I going to die as well?

A. “You can’t catch cancer. Most people die when they’re old and their bodies get worn out. It’s very unusual and sad for someone young like you to be so ill that the doctors can’t make them better.”

Issues with going to school

It can be difficult to know whether to send your children to school each day if you think someone in the family may die soon. You may feel like you need to keep them at home to be with their loved one as much as possible.

Maintaining routine in your child’s life can help them to feel more stable and safe. It may help them to go to school and see that normal life can continue, even though things are changing at home. However, there may also be days when keeping them home may feel like the right thing to do.

You may want to consider talking to your child’s teacher about what is going on at home. You don’t have to tell them anything in detail if you don’t want to, but it’s helpful for the school to know about any major changes in a pupil’s life.

If you have older children, it’s important to ask them what they want you to do. Teenage children might choose to tell their teachers themselves. They may not want their teachers to know at all because they don’t want the attention or to be thought of as different from the other students. Reassure your teenager that their teacher can help and won’t tell anyone else without their permission.

Being together

When cancer is advanced and life is even more uncertain, many families find new ways to make the most of every minute. Here are some ideas for maximising your time with your family and preparing them for the future:

  • Accept offers of help. It not only allows friends to feel that they are contributing, it frees up your time and energy for your family.
  • Make a memory box.
  • Plan a special outing with your family. You might have always wanted to take your kids to the beach, the ballet or the grand final football. You might want to show your kids where you grew up, or maybe there is somewhere special that your children would like to take you.
  • Listen carefully to what your child wants to say. If your child has any regrets, let them express them at the time.
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