Living with advanced cancer

Thursday 7 March, 2019

This section 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 section difficult. If you want more information or support, talk to hospital staff or contact these services.

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.

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."

A big hole

"I was in my teens when my mother died of cancer. These were the days when patients were not told the truth. In case she didn't know, when I visited my mother I kept up the charade and didn't mention death. She didn't bring it up. This was a great loss to me and I'm sure to her too. A big hole in my life, to this day, is that I don't know how she felt about her death's effect on me, my sister and our father." - Eva, now a mother herself with teenage daughters

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 below for some examples of how to explain these concepts.

How children react

How you react to a diagnosis of advanced cancer can affect how the whole family responds. 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 if family members don't communicate well.

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. See typical reactions from children and young people.

Children of separated or divorced parents need to be given the opportunity to see their ill parent, to prepare for the loss, and to say goodbye.

What words should I use?

If you need to prepare a child for the death of someone they care about, it can be confronting to find the right words to use. See tips on answering specific questions.

  Infants, toddlers & preschoolers Younger children
Older children & teenagers
When advanced cancer is diagnosed “Some people with this sort of cancer get better, but some don’t. I am going to do everything I can to get better.” “Some people with this sort of cancer get better, but some don’t. I’m trying to do everything I can to treat the cancer, and I will always let you know how I’m feeling.” “Some people with this sort of cancer recover, but some don’t. I’m planning to do everything I can to keep the cancer under control, and I will always let you know how the treatments are going.” 
When end of life is near “Daddy is very sick now. The doctors say there isn’t any medicine that can make him better. We think that means he is going to die soon. We will try to spend some special quiet time together.”  “The doctors say that the treatments have stopped working for Dad. There isn’t anything else they can do to treat the cancer. We think that means Dad will die soon. We want to make the most of the time he has left.” “The doctors say that the treatments haven’t worked for Dad. There isn’t anything else they can do to treat the cancer. We think that means Dad will die soon. We want to make the most of the time he has left.”
To explain death “When Grandma died, her body stopped working – she can’t breathe or move or cuddle you anymore. A dead body can’t come back to life. We won’t be able to see Grandma again, but we will always know she loved us.” “I have some very sad news to tell you. Grandma died last night. She can’t breathe or move anymore. Is there anything you’d like to know about how Grandma died?” “I have some very sad news. Grandma died last night … Is there anything you’d like to know about how Grandma died?”

Answering key questions

How you answer these questions depends on the nature of the cancer and the effects of treatment. Work out in advance what your children might ask and 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.

Q: Why?

At some stage, children are likely to ask why such a terrible thing is happening. This may be a question that you are grappling with yourself and how you respond will depend on your belief system, but there are no easy answers. The important thing is to let children know it is okay to talk about it.

A: "I don't know. Life feels unfair sometimes and we don't always know why sad things happen. Why do you think sad things happen?"

Q: Is it my fault?

A: "It's no-one's fault. Nothing you, or anyone else, did or said made me ill. And being kind and well-behaved can't stop someone from dying either."

Q: When will you/they die?

Time is a difficult concept for young children, so it may not help to give even vague time frames. 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 I will probably live for at least X months/years. Whatever happens, we want to make the most of that time. 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 I will probably get a little weaker each day now."

  "No-one can answer that, but we are hoping that there will 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 all of you."

"You might be worried about what will happen if the treatment doesn't work and I'm not around. I've already talked to Grandma and Grandpa, and they will be there for you and will look after you."

Q: What happens if Mum/Dad dies too?

A: "When someone you love is very sick, it can make you feel very scared. But Mum/Dad is well and healthy now and they will be around to look after you. Whatever happens, we'll make sure you are safe and loved."

Q: Am I going to die as well?

A: "You can't catch cancer. When someone you love dies, it's normal to think `Am I going to die too?' It's very unusual and unlikely for someone young like you to die or be so ill that the doctors can't make you better."

Q: What happens to people when they die?

How you answer this question depends on your personal or spiritual beliefs. You may need to probe further to check what the child means by this question. Responding with an open-ended question such as "What do you think happens?" can help you work out what the child really wants to know. They may be asking what the physical process of dying involves or what happens to the body after death. Keep your explanations simple, concrete and honest. If there will be a cremation, adapt the following example – follow the child's lead to work out how much detail to give.

A: "The body goes to a funeral home until it's time for the funeral. Then they will put the body in a big box called a coffin, which will be carried into the funeral service. After the funeral is over, the coffin is buried in the ground in the cemetery."

(However, the question may be prompted by more spiritual concerns, such as whether there is an afterlife. How you explain the spiritual aspects will vary depending on your own culture and belief system. You may want to explore what the child already believes before explaining your own view.)

A: "People believe different things about whether a person's soul lives on after death. What do you believe?"

Supporting grieving children

Each child will react to loss in their own way. Do not underestimate the impact of a bereavement, even if a child is very young or does not seem sad. Their grief may be expressed through play or other behaviour.

Children often work through feelings slowly, facing them in bearable doses. Allow children space to grieve – you do not need to "fix" their sorrow. Let them know that it is natural for people to express sadness in various ways, just as they express other emotions.

For bereavement information and support, call Cancer Council 13 11 20 or contact one of these organisations:

Different views of death

In preparing children for the loss of a parent or another significant person, it's helpful to understand how death is perceived at different ages. Children's grief may be expressed through play or behaviour.

0–3 years

Newborns, infants and toddlers

Babies don't have any knowledge of death, but can sense when their routine is disrupted and when their carers are absent. Toddlers often confuse death with sleep and do not understand its permanence.

3–5 years

Possible reactions

  • babies: unsettled and clingy
  • toddlers: may worry persistently about the well parent and think that they or their behaviour caused the advanced cancer
  • may also be angry with parents for not being able to give them more attention

Suggested approaches

  • avoid explaining death as "sleeping", because that can cause distress about sleep
  • provide comfort
  • be prepared to patiently answer the same questions many times
  • maintain routines and boundaries

Preschoolers

By the preschool years, children are starting to understand the concept of death but struggle with its permanence (e.g. they may ask when the dead parent is coming home). Young children don't have an adult concept of time and understand only what's happening now.

Possible reactions

  • may feel it is somehow their fault
  • may be angry with their parent for not giving them enough attention
  • can react as if they were much younger when under stress
  • may have frightening dreams
  • may keep asking about death

Suggested approaches

  • watch their play for clues to their feelings
  • offer comfort
  • answer questions in an open, honest way
  • maintain routines and boundaries

5–12 years

Primary schoolchildren

By the primary school years, children may 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.

Possible reactions

  • may be openly sad or distressed
  • may express anger
  • may worry about being responsible for the death, but also might blame someone else
  • may ask confronting questions about what happens when somebody dies
  • may be more able to talk about their feelings and act sympathetically

Suggested approaches

  • encourage them to talk, 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
  • discuss changes to family roles
  • provide privacy as needed
  • maintain routines and boundaries

12–18 years

Teenagers

Teenagers can understand death, but may not have the emotional capacity to deal with its impact. They need as much preparation as possible for a parent's death. Like adults, teenagers' responses to death vary. Some may be more upset when their parent is unwell than following the death, others become distressed after the death.

Possible reactions

  • may deny their feelings or hide them in order to protect you
  • may think they can handle it alone and not look for support, or may distance themselves from family and talk to friends instead
  • may react in a self-centred way and worry about not being able to do their normal activities
  • may express distress through risk-taking behaviours (e.g. skipping classes, experimenting with drugs and alcohol, acting recklessly)
  • worry that death is frightening or painful, and struggle with their own mortality

Suggested approaches

  • encourage them to talk about their feelings with friends or another trusted adult
  • support them to express their feelings in positive ways (e.g. listening to music, playing sports, writing in a journal)
  • negotiate role changes in the family
  • maintain routines and boundaries
  • let them know that support and counselling are available
  • offer them the opportunity to participate in a public or private memorial service

Family life

When cancer is advanced and life is even more uncertain, many families find new ways to focus on the things they value most. Here are some ideas for maximising your time with your family and preparing them for the future:

  • Accept offers of help. It not only frees up your time and energy for the family, it also allows friends to feel that they are contributing.
  • Make a memory box, choosing keepsakes together. These will be personal choices, but could include: treasured photos; a DVD of a family event; special birthday cards; a favourite cap, tie, scarf or another item of clothing; a list of shared memories; tickets from special outings; a family recipe; a pressed flower from your garden; a bottle of perfume or aftershave; and a lock of hair.
  • Plan a special outing with your family. You might have always wanted to take your kids to the beach, the ballet or the football grand final. 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 children want to say. Allow your children to express any regrets that they have.

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 let them spend as much time as possible with their loved one. Maintaining routine in a child's life can help them to feel more stable and safe. It might 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 your children home feels like the right thing to do.

You may want to talk to your children's teachers about what is going on at home. It's helpful for the school to know about any major concerns in a student's life so they can understand and respond appropriately to any changes in behaviour or academic performance.

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.

Key points

  • Children and adults can react very strongly to the news that cancer is advanced.
  • It is important for people to be able to express their emotions and to grieve in their own way.
  • Children should be given some idea about the person's prognosis.
  • Be open about death. Let your kids ask questions and express their fears.
  • Reassure your kids about the future.
  • Let your children spend time with the person who has cancer so they can create meaningful memories together.
  • Give kids realistic hope, e.g. that the family can still enjoy time together or that the person with cancer will have some good days.

Expert content reviewers:

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.

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