Living with advanced cancer

What do children need to know?

For some people, the cancer may be advanced when they are first diagnosed. For others, the cancer may spread or come back (recur), even after the initial treatment seemed to be effective.

Living longer with advanced cancer

More and more people with advanced disease are surviving for longer periods of time.  Treatment can often keep the cancer under control and maintain quality of life for many months, and sometimes for many years. When this happens, the cancer may be considered a chronic (long-term) illness.

If the cancer has advanced, it is important to keep talking with your children. 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, sadness, anger, guilt or loneliness.

Uncertainty about what the future holds will be a challenge for both you and your children. You may be able to reassure children that, although the cancer cannot be cured, there are treatments that can help you feel better and you may be able to stay well for a long time.
Remember that the concept of time can be different for younger children. While several years might seem to be a short time to you, it can seem like a long time for children.

Offering realistic hope

A diagnosis of advanced cancer does not mean giving up hope. Some people with advanced cancer can continue to enjoy many aspects of life, including spending time with their children and other people who are important to them.

If the disease progresses, the things that are hoped for may change. 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 loss.

Conversations about the end of life

While some people with advanced cancer live for years, for others, the outcome (prognosis) is fairly clear and they will know that they may have only weeks or months to live. If death is likely in the short term, it is best to be as open as possible about this while trying to make the subject of death less frightening. For example, avoid saying that death is always peaceful because 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. Hospital social workers and other health professionals can support you and help you to find ways to have these challenging conversations with your children.

You may ask children what they know about death and what they think it means. This can help you to clear up any misconceptions about death.

Talking to children about death in an open way may help them to feel more comfortable spending time with their family member who has cancer. Acknowledging that someone is likely to die also gives your family the chance to show and say how much you care for each other, and it allows families to work on any unresolved issues. For older children, the chance to make amends for past mistakes may be particularly important.

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”.

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.”

How children react

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. 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 in families who have not spoken with their children about cancer.

Dealing with denial

Some children and teenagers find it difficult to accept that their parent is dying. This is a normal and understandable response to such a painful and difficult situation.

Try to be gentle and supportive of young people who have this reaction. Pushing someone to accept that their parent is dying may be stressful to both the young person and their parents or carers. It’s also unlikely to lead to acceptance.

While an impending death of a parent from cancer may mean that there isn’t much time, try to stay calm and be available to listen to your children’s fears and concerns.

When parents are separated or divorced

All families are different and sometimes family members may not be on good terms. This can affect the way they talk to each other and negotiate challenges, such as cancer.

In most cases, children of separated or divorced parents need to be given the chance to spend time with the parent with cancer. If the parent is likely to die, it’s important that children are prepared for the loss, and that they have the opportunity to say goodbye. It’s also important that a clear plan for the ongoing care of the children is agreed before the parent’s death. If you need help in negotiating difficult family relationships at this time, it may help to talk to a hospital social worker.

Answering key questions

How you answer questions depends on the nature of the cancer and the effects of treatment. It’s a good idea to 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 questions over and over again, you are helping to ease your children’s worries. Sometimes children may test you to see if your answers stay the same.

Q: Why is this happening?

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

“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?

“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. For younger children, it may be helpful to talk about time in relation to upcoming events (e.g. school holidays, a birthday). Older children may want some idea of how long a parent is likely to live. It is still important to balance hope with reality.

“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 hope to be well enough to go to your kindy concert.”

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

“I honestly don’t know, but I will probably get a little weaker each day.”

“No-one can answer that, but we hope 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.

“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.”

For some children, the death of a parent from cancer will mean a substantial change in the child’s living arrangements. For example, if they are living with only one parent and that parent dies, they may have to move to a different house to live with their other parent. In these situations, it’s important to discuss this before the sick parent dies, and to include the other parent or guardian in discussions.

Q: What happens if Mum/Dad dies too?

“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, loved and well cared for.”

Q: Am I going to die as well?

“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 work out 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 and straightforward, and follow the child’s lead to work out how much information to give.

“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.” (This example can be adapted if a cremation is planned.)

Questions about what happens after death may also 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.

“People believe different things about whether a person’s soul lives on after death. What do you believe?”

What words should I use?

If you need to prepare a child for the death of someone they care about, it can be hard to find the words to use.

When advanced cancer is diagnosed

Infants, toddlers and preschoolers

“Some people with this sort of cancer get better, but some don’t. I am going to do everything I can to get better.”

Younger children

“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.”

Older children and teenagers

“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

Infants, toddlers and preschoolers

“I am very sick now. The doctors say there isn’t any medicine that can make me better. We think that means I am going to die soon. We will try to spend some special quiet time together.”

Younger children

“The doctors say that the treatments have stopped working for me. There isn’t anything else they can do to make me better. We think that means I will die soon. We want to make the most
of the time I have left.”

Older children and teenagers

“The doctors say that the treatments haven’t worked for me. There isn’t anything else they can do to treat the cancer. We think that means I will die soon. We want to make the most of the time I have left.”

To explain death

Infants, toddlers and preschoolers

“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.”

Younger children

“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?”

Older children and teenagers

“I have some very sad news to tell you; Grandma died last night. Is there anything you’d like to know about how Grandma died?”

Newborns, infants and toddlers 0-3 years

Babies don’t have any knowledge of death but can sense when their routine is disrupted and when their carers are absent. Toddlers often do not understand that death is permanent.

Possible reactions

• newborns and infants: unsettled and clingy
• toddlers: may worry persistently about the well parent and think that they or their behaviour caused the advanced cancer
• may be angry with their parent 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 3-5 years

By the preschool years, children are starting to understand the concept of death but struggle with the idea that death is permanent (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
• may have frightening dreams
• may keep asking about death
• may repeatedly ask when their parent will return

Suggested approaches

• watch their play for clues to their feelings
• offer comfort
• answer questions in an open, honest way
• maintain routines and boundaries
• explain that the parent has died and they won’t be coming back, which makes everyone sad

Primary school children 5-12 years

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

Teenagers 12–18 years

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, self-harm, 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
• ask if, and how, they would like to participate in a public or private memorial service

Key points: Living with advanced cancer

• 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 have time to create  meaningful memories together.
• Give kids realistic hope. For example, reassure them that the family can still enjoy time together or that the person with cancer will have some good days.