We also offer advice about how to start talking about death and dying. This includes some thoughts that children have when thinking about what happens after someone dies.
Be aware of your own limitations at such a stressful time and don’t expect to always get it right. Remember that this is never a one-off conversation, more an ongoing process. The more open the communication, the easier it can be for a child who wants to talk. It may be useful to look at the section on children’s ideas and understanding of death to help you get ready for preparing your ill child and their brother and sisters. What you say will depend very much on how old your child is and what they already understand. Younger children will, of course, have a very different understanding of what death is than an older child.
How do I decide if I should tell my child they are dying?
No one can say what is right for your child and your family. Some parents are worried about frightening their child. Children with cancer nearly always know they have a serious disease. Many know that you can die from it and may know of other children who have died. Some children who are dying start to distance themselves from family, friends and others. Their social world may begin to shrink. If parents can communicate both good and bad news in a way that makes their child feel safe, then the child will feel comforted. They will also believe that their parents will help no matter what happens.
Parents sometimes feel under immense pressure to tell their child that he or she will die, or indeed not to tell the child. Whatever you decide needs to feel comfortable for you as a family. It is important to be able to let your child know they can ask questions and to remember that often children feel they need permission to talk about death.
Try to see it from your child’s point of view:
- Has he or she been able to raise the subject?
- Do you avoid the subject?
- Are you not letting him or her talk about difficult subjects because they are too painful for you?
- Are you asking the right questions?
- What do they think is happening?
- Is there anything they are worried about?
- What do they think is going to happen?
- Is there anything they have not been able to ask, but want to?
Not all children or teenagers want to talk about the fact they are dying, but some definitely do want to talk about it. Some cultures forbid such open discussion. Other families just cannot talk about death because it is too painful or totally outside their experience. Remember that for some dying children it can be hard for the child if the parent remains silent. Silence from a parent can be seen as a barrier to talking, even if that was not their intention. Young children might have fears or fantasies about what is happening. It may be useful to ask yourself what your child will imagine is happening if they are not told they are dying?
How do I know what they already know, and what they want to know?
It may be useful to talk with your child about what has happened to them so far. You could ask what they think is going to happen to them, or if there is anything they are thinking or worrying about. Often this can lead into: “Am I going to get better?” At this point you might say, “The treatment doesn’t seem to be working any more and we think you might not get better”. Ask your child if they would like to talk about what may happen next, or if they have more questions.
This is an incredibly difficult and painful discussion to have and it may never take place for some families. Often it is easier to have this type of conversation while you are doing an activity. A child has the right to be told if they have a wish to know. Remember that some children may not want to talk about this with their parents, but may talk with other people. Try to offer your child plenty of opportunities to have this sort of conversation.
Our booklet, Facing the death of your child, contains a list of some very good books and booklets which can be a good way of opening up conversations.
What do I tell my child?
Most children will already have been told about the cancer and treatment and know that it is serious. They will sense that something has
changed. Suddenly, lots of other people start to visit and people who always visit start to come more regularly. You may also look and act differently, no matter how well you try to disguise it. Children are very good at reading faces, expressions and body language.
Everyone is scared of saying the wrong thing. Generally, it is better to be as honest as possible. Try to agree on what to say, to avoid giving your child confusing messages. One 8-year-old girl needed to talk about her wish to go to heaven so she could wear her special wings. That conversation helped to comfort that little girl and make her feel safe. It also helped her mum to understand what her daughter thought was going to happen.
Other children need to have information given out a bit at a time. This allows some time for the information to sink in and they can check what is happening. A bit at a time helps some children feel that they are in control and can choose either to carry on talking about it or decide they have had enough of talking.
How do I tell my child?
Hardly anybody feels they do this perfectly. You will know best whether to talk to your child on their own or together as a family. Don’t be afraid to cry. Your tears can’t make them any more upset and can give them permission to cry too. Choose a time when they feel safe and comfortable and when they have shown that they want to know what is happening. Give out small bits of information gradually. You may need to repeat part or all of it.
Try and keep the conversation short and be prepared to come back to it later when your child wants to. Use simple words that you know they will understand, and stop when they or you have had enough. Some children react immediately; some act as if they did not hear what has been said; some want all the information at once and some clearly only want a little bit of information. Encourage them to ask anything they want and let them know that you will be with them every step of the way. In this way, you are giving them permission to talk and to take the conversation further if and when they wish. You know your child best, and will be able to tell when they have had enough talking. Your child will feel that you respect them and that it is okay to stop then and to talk again later.
What will we talk about?
At this time, it can be really supportive to use words and examples from your experience of others who have been ill and perhaps died. Religious examples or familiar stories may be helpful. Your child may want to feel safe and to know who will be there when they die. If talking about death is brought out in the open, it can be an opportunity for the child to say goodbye and do the important things that they want to do. Some children may want to plan their own funeral. They feel it is their way of saying goodbye and to make known their last wishes.
It is important not to feel pressured at this time to do anything against your or your child’s wishes or beliefs.
Once a conversation about the possibility of dying is started, there is an opportunity to talk about many things. For example, what they think is going to happen, their feelings and thoughts about death, afterlife, heaven, God or angels. It is important to let them describe what they think is going to happen. It is what they believe that matters.
It can be confusing, as many children, especially teenagers, talk about knowing they are going to die and then talk about their future. This is a common way of needing to both show that they understand what is happening, but also that they need to talk as though it was not. Go with this conversation. If you just talk about death, it may stop your child having conversations about what they want to achieve, even if they really know it is not going to happen.
How can I explain dying?
Try not to use euphemisms such as ‘pass on’, ‘pass away’, ‘go to sleep’ and ‘lost’. They do not help a child to tell fact from reality, and can be confusing for children. Death is seen and talked about on television and in films. Children are probably best told while being cuddled. Touch is very important and comforting. You may find it helpful to use a book to explain death. An example is Doris Stickney’s Water Bugs and Dragonflies. This uses the example of a water bug’s short life under water as a person’s time on earth, before emerging as a dragonfly after death. Children can understand this idea of leaving the old body behind. When you die, the body does not work anymore and that there can be hope and beauty after death. Using some of the workbooks “When someone is very ill” can be an excellent way of opening up conversations whilst drawing and writing, and can make it easier for your child to start talking.
Many children just want to explore that when someone dies they will go to heaven, a beautiful place. For some, this means becoming an angel and for others, living on a cloud. Depending on your religious and spiritual beliefs, the idea of heaven or an afterlife can help a child feel safe. It can be difficult to understand, so be prepared for further questions. Lots of parents and children talk about heaven, or paradise, or an amazing world as a safe place. There, they will meet others who will look after them and the rest of the family.
Another metaphor often used is of a caterpillar. This represents the healthy person who, when they become ill, develops like a caterpillar into a cocoon. When their body does not work any more and dies, the cocoon is shed and the butterfly (like the soul) flies off somewhere else.
An image of the child in a sailing boat, sailing towards the horizon may be helpful. The child sails further and further away, until they can no longer be seen. You know they are there and they know that you are on the shore watching, waving and loving them.
You could explain that bodies stop working. Go slowly. Explain that when you die, your body doesn’t work any more, it can’t get better; you don’t breathe, can’t eat or drink and will not be in any pain. This can feel very final to explain to a child, but remember that some children are looking for a biological explanation. Some parents find this impossible to explain. At these times, it might be useful to use another adult to help talk this through.
For active children, an active metaphor can help. A 10-year-old boy worked out that dying is like being a space rocket. In life it is full of energy and it combusts. You can see flames and it shoots out from earth, then slowly it slows down. The first section disengages and falls away, then the second part, getting smaller and smaller so there is only a little part left. Then it disappears so all you can see is a trail in the sky. Then even that disappears. You know it‘s still there, even though you can no longer see it.
What if my child has nothing that they believe in?
Children and teenagers often have their own theories which may not fit in with any particular religion or philosophy. They need to know that you really are listening to what they are saying. Some children find it impossible to believe in anything, and may ask you for your beliefs. This can be an ideal time to explore together what you both understand and feel. Your knowledge and experience can help them to feel safe. Some children believe that life just stops.
It is important to listen to their views, and to try to understand why they think that.
How do I know what my child is really asking?
It is useful to ask your child what they really want to know, as understanding the question will help you to answer. You can reassure them that you will reply as best you can but that you won’t always have the answers. It’s OK to say that you don’t know the answer. You hope that dying will be as peaceful as possible and whatever happens, they will be with people that love and care for them.
If your child asks “What is going to happen?” it may be a sign that they need to talk about what they think might happen. They may not
necessarily be asking for your views. Do they want you to tell them what you think, or do they want to say what they think is going to happen?
One young boy got very upset and eventually was able to say that he was scared of being in heaven all on his own, waiting for everyone else. We then talked together with a vicar, who told him that in heaven, time is on a different time scale. In heaven, time passes in a flash and then everyone is together. On earth, time is much slower. He found this very useful and said that he wasn’t afraid of dying.
If the child or teenager believes in heaven or afterlife, they may find this comforting. Sometimes they feel there is nothing. If this is the case, it is important to just listen. Ask them what helps, as trying to impose your beliefs when they may be in despair may not be helpful.
What if my child does not want to talk?
If your child does not want to talk to you, remember that it might not be the right time, in the right place, or even with the right person.
Talking about such a difficult subject may be possible later or with someone else. Some children never want to talk about it, which may
be their way of coping. Giving children the chance to talk will give them the opportunity to do so if they change their mind at a later date.
Some children may wish to collect special things together in a box (often called a memory box), to leave for others. Memory boxes can be very comforting both to make and for those who look at it after your child has died. Your ill child may like to collect special things or to write letters to give to others. In this case, it can be very powerful to choose or make a special box with your child, to talk about what and why things are important. It can also be very moving to make up a memory box either for yourself or for your other children after
your child has died. It can be a private, precious collection to cry over and to remember good times.
What about school and how school can help?
When your child is so seriously ill, school and education can seem unimportant. To the child, however, any kind of normality can be a
great distraction and really help them to cope. Schools usually want to help, but they do not want to intrude on the family’s privacy.
Your child may feel that they would appreciate some contact with the outside world but cannot manage a whole day in school. It may be possible to do part of a day, with a member of staff designated to take responsibility. Schools are usually helpful with these kinds of arrangements. These are easier at primary school level where your child will have one special teacher. At secondary level, there are often year heads or special needs teachers who can help.
If your child is too unwell to manage school at all, perhaps a short visit with a few carefully chosen classmates could be welcome. Consider using social media, video messaging or Skype, but bear in mind that your child may not want to be seen on a screen themselves if they are self conscious about any change in their appearance, or haven’t seen anyone face to face for a while. This could be monitored and organised by the teacher responsible. The chances are that teachers and classmates will have followed your child’s illness from the start. This may make them feel involved and wish to help in some small way to make the last days special.
Having a liaison person at the school is essential. This should be someone you can be in contact with and trust to give out information in the way you and your family prefer.
Schools can also provide home tutors. These are trained teachers, who often have a special empathy for very seriously ill children and their families. They can become a good source of support.
Tutors usually tailor their sessions to how your child is feeling. They take into account special interests and hobbies. Nobody worries too much about the national curriculum, but it may still be very important to your child to learn new skills like their friends are doing. If you would like a tutor and your child’s school has not offered this, you can contact the school office or the local education authority. Staff in the school room at the hospital (or local home and hospital tuition service) may also be able to help.
Your child’s nurse specialist (key worker) and hospital teacher can contact the school on your behalf and liaise with the special educational needs coordinators (SENCos) and classroom teachers in planning for your child’s education. They can provide advice and support to the school staff as well as to you and your child. Our resource, Bereavement: Sources of help and support, may be useful for schools.
What about my child’s friends?
Most children like to remain in some sort of contact with their friends throughout their illness. It gives them a chance to talk about normal, and often silly things. They can be themselves and not just an ill person. You may need to prepare friends for how your child is looking or behaving, or the fact that your child is very ill. Not all children want contact with others and you may have to act as a negotiator. Your child’s friends may have different views, needs and desires to your child’s. Sometimes, alternative non face-to-face types of contact work very well: email and videos, social media, and either texting or speaking on the phone.