How do I tell my child that they are dying?
How, when and whether you talk with your child about what's going to happen will be steered by many things, like your child’s age, personality, level of independence and your own views about what is right for your child.
Should I tell them?
It’s normal to want to protect your child. You might believe the best way to do this is by not telling them their prognosis, especially if they are very young.
However, many children will suspect what is going on because of how they feel. They could also become aware by observing what’s happening around them, such as people visiting more and the general atmosphere. So it’s best to prepare for having a conversation with them, whether you initiate it or they ask you outright.
It can be very hard if you and your partner have different views on this. Coming to an agreement might not be easy – there is no ‘right’ answer and it will take honest conversations and compromise but ultimately, your decision will be in the best interest of your child.
Sometimes, you may not have been told outright that your child is going to die. It’s more a slow realisation or growing understanding in the back of your mind. Let them know that it’s ok to talk about anything with you. They don’t need to stay strong for your benefit. Keep looking out for signs that they’re ready to talk.
My husband didn’t want my 13-year-old son to know he was going to die and wouldn’t talk about it, but I felt it was important to be honest and give him the opportunity to talk. Ultimately, we agreed that we wouldn’t bring it up unless he asked directly, which as it happens he did.
How much will they understand?
Your child’s developmental level will play a major part in their understanding of death. Some may not be able to make sense of it yet. Others will have a better grasp than most children of their age, often due to spending time in hospital or knowing of other children who have died.
Preschool-aged children are too young to understand the concept of death—particularly its permanence. School-aged children are just beginning to understand death as a final separation. Meanwhile, teenagers typically have an adult understanding of death, but it directly challenges their feelings of immortality and their growing need for independence.
To understand more about this, take a look at CCLG’s guidance about children’s ideas and understanding of death according to their age.
How do I know if they are ready to talk?
Look out for opportunities to talk about what your child is thinking and feeling. This may include the illness of a character in a movie or in a television show, or the death of a pet. You might also want to start by talking about what has happened so far and asking your child if there is anything they are thinking about.
This goes for teenagers too. Some may be able to communicate clearly about what they do or don’t want to talk about, how, where and when. But they may also hold fears and thoughts that they might find difficult to share. This may also be because they’re feeling guilty or are trying to protect you. Simply letting them know you’re there to talk about anything they need to can give them the permission they need to open up.
With younger children, listen for signs that your child is ready to talk or wants to explore the concept of dying with you even though that’s obviously extremely painful for you. This could be asking questions or bringing up the subject in conversation. Your child might do this indirectly, for example, by asking what you think happened to a pet after they died. This could be their way of broaching the subject with you.
You may also face direct questions from your child that can take you by surprise and feel very painful. This is why it’s important to at least be prepared so that it doesn’t catch you out, and you can use this opportunity to talk openly. This way, they’ll know they can come to you with any more questions or worries and they can trust you to be honest with them.
Sacha, DD's Mum
Knowing that we fulfilled all our child’s needs and wishes before he died is our biggest consolation in grief. The basis of this was not putting off painful conversations.
How do I do it?
Often it is easier to have this type of conversation while your child is doing an activity to remove some of the intensity and pressure. If possible, try to make sure your environment is calm and comfortable. Conversations can’t always be planned for though. Your child may surprise you with a direct question whilst watching TV or having a bath. If this happens then go with it and be led by your child.
If they change the subject, become fidgety or move on to another activity then that probably means that they want to finish talking for now. That’s ok – sometimes it’s better to have a series of shorter chats than one long one.
What do I say?
You might feel anxious about saying the wrong thing but avoiding the subject, especially if your child has raised it, can create more confusion and fear. Explaining to your child that the treatment isn’t working anymore and that they aren’t going to get better will be incredibly difficult for you. But being honest will help your child feel less anxious if they have an idea of what to expect. Don’t be afraid to cry. Your tears can give them permission to cry too.
It’s important to use clear language. Using terms like ‘passing away’, ‘going to sleep’ or ‘going to a better place’ can confuse and mislead children. Some children will also want a biological explanation. It can feel severe to explain to your child that dying means a body will stop working and people will no longer breathe or eat or feel pain. Many parents understandably won’t be able to talk about it in these terms but there are resources at the bottom of the page to help.
The conversation doesn’t have to be traumatic if you can talk in a way that makes your child feel safe and comforted. Reassure them that you’ll be with them every step of the way.
Support and advice can be given by your Young Lives vs Cancer Social Worker, community nurse, CNS or local children’s hospice. These services can help you prepare for this conversation and guide you with what language to use. They can also offer to be with you if there is a time planned to talk with your child and in some circumstances will have the conversation for you if you feel unable to do so.
Give your child the opportunity to ask questions and encourage them to explore issues with you. This will let them know that they can talk to you when they need to. Remember that it’s ok to say that you don’t have all the answers.
It can sometimes help to ask them questions as well. Try to make sure they’re open-ended rather than ‘yes or no’ so your child can explain themselves in their own way, without feeling like there’s a right or wrong answer. It is a good idea to ask them what they think will happen to gauge what their understanding is before you start to explain in your own terms.
We all hope that dying will be as peaceful as possible, and your palliative care team will work hard to manage all eventualities. Whatever happens, your child will be with people that love them and can be kept comfortable by whoever is looking after them. You can look at our end of life section for more about this.
Use comforting thoughts
Reassure your child that he or she will not be alone. It is important for children to know their parents will be with them when they die and that parental love and support will continue. Be aware that it doesn’t always happen as you’d expect or wish – some children die just at the moment when their parents pop out of the room. Many parents harbour terrible guilt for this, so tell your child that you’ll be with them, whilst knowing that you can forgive yourself if you aren’t.
Some parents like to say that a loved one will be waiting for them.
Although we weren’t really religious, when my son was very ill we were visited by a minister who described dying as going into the sea for the first time when you’re little. He said that to start with the waves seem big and scary but you’re holding on to your Mum’s hand and after a while it doesn’t seem so scary anymore. He said when you let go of your Mum’s hand Jesus would come and take your hand and walk with you, so you wouldn’t be alone. This thought really comforted my son. When my daughter was dying I told her that she had fought long and hard enough, and it was time to rest now. I said that when she let go of my hand that her brother (who had died before her), would be waiting to take it instead, and that it was time to go and be with him until we could all be together again.
If your child has strong feelings about where they want to die, for example, then you can also let them know that you’ll do everything in your power to make sure their wishes will be fulfilled.
If your child is a teenager, they may be harbouring feelings of guilt about being a burden or feeling that they are causing you and others around them sadness. It’s not uncommon for children to experience this to some degree as well, worrying about leaving their parents.
Sometimes, it can help to give your child “permission” to talk about dying, simply by saying – “I’m ok to talk about this if you want to. I’m here for you”. If they find it easier to talk to someone outside the family, the palliative care team could help.
What about religion and spirituality?
Your child’s understanding of death may be influenced by your family’s religious beliefs, and possibly things they may have seen on TV or read in books. It’s common for children to know about heaven or angels, and you could use this if you’re comfortable with that idea. Believing that they will go somewhere beautiful or re-joining other family members who have died can help children to feel safe.
Be cautious though if this isn’t something your child is familiar with, as introducing new concepts may cause more confusion.
If you don’t hold a particular belief, you’re still likely to want to include some comforting thoughts and concepts, but it can be tricky to do this without feeling like you’re being dishonest. You could try talking about death as a natural cycle and that everything will eventually go back into the earth, which will help plants to grow and feed new life. You can tell your child they will always be all around you, up in the stars and in your heart. You could find a metaphor that works for them, like a boat sailing away from the shore, or a rocket flying into space.
There are many publications and resources available to help your child make sense of what will happen to them. They will find their own path and notion of what it may be like and it is important to validate this with them. Your palliative care team can help you with resources and support, or you can look at the suggestions we’ve listed at the bottom of this page.
If your child is a teenager, they may have formed different beliefs to you, or may not believe in anything after death. It’s important to respect their views and listen to how they feel. It might be something you can explore together.
If your culture or religion restricts open discussion, or you simply can’t broach the subject because it is too painful, try to remember that silence can feel scary for a child. Let your child know that they can talk to someone else about their fears, so they are not left to their own imagination and the unknown.
How will my child react?
Give your child a bit of time for all this to sink in. They may want to return to the subject later and might even choose to ignore it. It’s quite common for younger children to respond to devastating news in surprisingly ‘normal’ ways – like asking to go and watch TV, or changing the subject. This goes for siblings too.
Sometimes, your child might talk about the future even when they know that they are going to die. This may seem worrying but go with it – it’s just their way of processing what’s happening and needing to talk about it as though it wasn’t.
Older children and teenagers will sometimes want to start actively playing a bigger role in what’s ahead. They might start making decisions about their funeral, or find special ways to say goodbye to people.
Where do I go for help?
Social workers, nurses, child psychologists, hospice staff and other palliative specialists can give advice about how to talk about death with your child. Pick one that you know if you can. Your child may find it easier to talk about the feelings of a sick teddy bear or a child in a picture. Play therapists could also help younger children to communicate through play or art.
Bereaved parents will also be able to share their valuable insight and range of experiences with you. You can find communities and groups online, or by asking your medical care team or hospice.Connect with the Young Lives vs Cancer Parents and Carers Bereavement Facebook Group
As part of our Facebook support group (My Kid Has Cancer), sometimes a parent will be in that situation of end-of-life care with their child and I and fellow bereaved parents have been able to provide advice, comfort, understanding and the knowledge that they aren’t alone. For me that understanding is invaluable.
For starting conversations about dying
Talking to a child about their wishes by the Courageous Parents Network: a short YouTube video
Gentle willow: A story for children about dying by Joyce Mills: written for children who may not survive their illness, this touching tale helps address feelings of disbelief, anger and sadness with love and compassion. 4-8 years
On The Wings of a Butterfly: A Story About Life and Death by Marilyn Maple: a story about a young cancer patient who finds comfort in her friendship with a caterpillar. As the caterpillar prepares for transformation into a butterfly, the two share their fears about the unknown.
Water Bugs and Dragonflies by Doris Stickney: This uses the example of a water bug’s short life underwater 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.
Duck, Death and the Tulip by Wolf Erlbruch: A tender and simple story that gently deals with dying and the afterlife through the friendship of a duck and a character called Death.
For reassuring children that they are loved and will be remembered
Always and Forever by Alan Durant: A story about Fox and his family that reinforces the power and importance of remembering.
Fred by Posy Simmonds: A storybook about a beloved pet cat who has died.
I’ll Always Love You by Hans Wilhelm: A little book with a tender story that can be used as a conversation starter.
No matter what by Debi Gliori: A heartfelt story about the unconditional love each parent feels for their child.
For exploring the afterlife
The Mountains of Tibet by Mordicai Gernstein: For children aged 7 and up, a story of a Tibetan woodcutter who embarks on a new journey after death
Up in Heaven by Emma Chichester Clark: A story about a little boy’s dog that may help children to discuss their views and ideas about heaven.
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