How do I tell my child they're dying?
Answering your child’s questions around death and dying if they’ve received a terminal brain tumour diagnosis
Having your child diagnosed with a terminal brain tumour is one of the most devastating and terrifying things that can happen to any parent. And if your child starts asking questions about their illness, it can be desperately difficult to know what to say. How much you decide to share with your child and their siblings is a very personal decision and there is no ‘right way’ that fits every family. If you do wish to talk to your child, there are some steps you can take to help you feel more prepared and to make these conversations as meaningful as possible.
Here, Clinical Psychologist, Dr Emma Porter, shares her thoughts on navigating this incredibly difficult time.
Firstly, there’s no ‘one way’
Parents feel under immense pressure to get it ‘right’ and can hear very conflicting views about what they ‘should’ do. For example, some parents believe that they have to say everything straight away to manage their child’s fears, whereas others believe that they cannot say anything for the same reason. Parents can also worry that their child may never get over the pain of hearing the truth and will lose hope, and others feel it is an important step in starting to prepare each other for what happens next.
Whatever you decide to do, it will be influenced by many factors. For example, younger children will have a very different understanding of what it means to die than older children. How much you share and at what time will also be influenced by where your child is in their journey, what is important to you as a family and what questions they are asking.
No matter what you say, it is important that parents and family members are consistent in what they share. This will not only help to reduce confusion, but will also help your child to feel safe and able to talk about any fears that they may have.
Think about why you want to have the conversation
One reason that you might decide to talk to your child is if they ask lots of questions, start acting differently or are becoming more unwell. Children are very good at picking up on change. If their treatment suddenly stops, their parents seem upset or they are being kept out of conversations, they will sense that something has shifted. Many will also already know that they have a serious illness and that you could die from it.
Without enough information to make sense of these changes, children will often fill in any gaps using their imaginations. This can lead them to form unhelpful ideas and beliefs that might be frightening and confusing. Being as honest as you can gives them a chance to learn more from someone they trust and signals that it’s OK to ask you questions. As things change it also allows you to build on what they know already, which makes it easier to understand and trust you.
You may also want to talk to your child so that they can be part of decisions being made. For example, a 14 year old might want to have a say in how they say goodbye, decisions about their care and what they want to get out of their remaining time. These conversations not only help families to start to prepare together for what is happening, but can also give your child important opportunities to feel heard and more in control.
“Telling a child they are going to die is one of the most difficult things for parents and doctors to have to do. Some people don’t tell their child they’re going to die and, if they’re little and never ask, I understand why you wouldn’t.
However, it would be a mistake to assume that all children and young people do not want to know, that they won’t understand and being told makes it worse for them.
There is of course no one way to approach telling a child they are going to die but honesty is – generally – best. Blogs and hospital youth forums show that young people want to talk about what is going to happen: what the effects of treatment will be, what will happen when they die and afterwards at their funerals. I believe that young people are the experts in their own condition – the key is for parents and doctors to really listen to them and not allow our own preconceptions to guide decisions on their behalf
We decided to always tell my son DD the truth about what was happening. Young people often want to know that you will be OK but can be reluctant to start the conversation for fear of upsetting you. By talking to DD about death, we were able to honour his plans before dementia caused by the tumours affected him.”
Sacha Langton-Gilks’ 16 year old son, David (DD), died of a brain tumour in 2012.
Sacha has written a book, Follow the Child: Planning and Having the Best End-of-Life Care for Your Child, with contributions from other mothers who share their own experiences of caring for and losing a child with a terminal illness.
Feeling as ready as you can be
Parents worry about saying the wrong thing or not being able to answer their child’s questions. It can be helpful therefore to talk through what you would like to say beforehand with a trusted person.
Parents can also worry that they won’t be able to talk without breaking down and upsetting their child. It would be unrealistic to expect you to not experience strong emotions during these conversations and to hold back any tears. It might also be confusing for your child if you were totally emotionless. Showing your emotions can give your child permission to also show and talk about how they feel. Touch and proximity can also be important ways of communicating and offering comfort, particularly if you are struggling to find the words.
Think about the setting
Although there will never be a perfect time, it’s best not to talk to your child about difficult topics just before they go to school, bed or to a friend’s house. Try to find a time when you can be together uninterrupted in a safe place around people that they care about.
Engaging in an activity, like drawing, playing a game, driving, going for a walk or petting the dog – anything that makes the conversation less direct – can help to take some of the intensity and pressure out of it. It can also help introduce natural breaks into the conversation, which can feel more comfortable.
Follow your child’s lead
Children need consistent information that is as honest as possible. Every child is different however and the amount of information needed at any one time must be led by them. Some children will want to talk and others may never want to. Both are OK and it is important that they feel listened to. Knowing that they can ask you if they were to change their mind, in itself, can feel containing.
A good place to start is to find out what they understand already and what else they would like to know. For example: “What do you understand about what’s happening now? Do you have any worries about what’s happening? What do you think will happen next? Is there anything else that you would like to know?”
When having these conversations, follow your child’s lead and stop if you think the conversation is getting too much for them. For example, watch out for non-verbal cues, such as fidgeting and reduced eye contact. This can signal that it is time to check in and explore whether it’s a good idea to keep talking or to pause and continue another time.
Don’t expect to have the conversation all in one go
Try not to give too much information all at once as your child may find this overwhelming and may struggle to take it all in. Instead, try to give them small chunks of information each time so that they can go away, process what’s been said and then come back with any questions.
What they will want to know and how they make sense of this information is also likely to evolve over time as they get older or as things progress. It is therefore not a one-off event, but an ongoing conversation.
Being mindful of tone and language
When talking to your child, try to use language that they understand and that fits with the way that you normally talk to them. For example, small children can take terms such as ‘going to sleep’ literally and might start to worry about going to bed each night in case they don’t wake up. The word ‘dying’ therefore can be less confusing.
Your child may also give you the language that they want to use. For example, if they start questions by saying ‘when I go to heaven…’ they are giving you the words they feel comfortable with, which you can then mirror in your replies.
Your tone of voice is also important. People can talk quite quietly or rapidly when they become anxious. Try to remain calm and talk at a slower pace. This will give you the chance to think about what you are saying and to keep an eye on where your child is at.
Consider how you might tackle difficult questions
A helpful place to start is to find out what they really want to know. Are they worried about what will happen next? Are they scared about feeling pain? Or perhaps wondering what happens after you die?
How you answer questions about dying will of course depend on your own beliefs. Some parents may be very honest with their child and let them know as much as they can. Other parents might not feel ready to do this or there may be uncertainty about how things will progress or if further treatment will be offered. Parents may instead choose to say something like “your treatment isn’t working anymore and so we’re going to give you medicine to help you keep doing the things you want to do.”
Many children will already have ideas and hopes about what will happen after death. From turning into a space rocket that leaves the Earth to becoming an angel that watches over loved ones, children can hold the most beautiful beliefs. By letting them describe and explore their ideas with you, they are giving you the language that makes them feel safe and comforted. There are also some excellent books you can try (please see below) that can be helpful in starting these conversations.
It is also completely natural to not have all the answers. You can reassure them that you will reply as best you can and will find out more where possible.
Reassure them they can keep asking questions
Children can find it hard sometimes to open up to their parents in case they worry them. It’s important therefore to give your child real permission to talk about important issues and reassure them that you are ready to listen. For example, you might say “it’s OK to ask me anything you want, even if you think it might upset me. We’re in this together, no matter what happens.”
You can also show this by continuing to offer your child opportunities to ask questions. This reassures them that you are there for them, now and in the future.
Sometimes children find it easier to talk to someone outside of their immediate family, like a psychologist, teacher or relative. This does not mean that you are doing anything wrong; there is no right or wrong way of coping. Sometimes talking with others first can help them know what they want to say to those that are closest to them.
Making siblings feel informed too
A lot of the ideas in this article apply to siblings too. For example, they are also likely to have picked up on any changes happening around them and so will need support to help them make sense of this and feel included. Whether you talk to them together or separately will depend on their age and what you as a family decide will work best. If you do decide to share information with one child and not another, hold in mind that it might put them in a difficult situation. Try to think about what they need to know now to help them make sense of what is happening and prepare them for what might happen next.
Having opportunities to talk about and explore their feelings in a safe space is also important. If you are struggling to find these opportunities, is there a trusted person who could help with this, such as a family member or someone from school?
Remember that conversations may never go perfectly
Be kind to yourself. Parents understandably want these conversations to go as well as possible. Remember, this is a stressful time and there are no perfect words. No matter how it goes, the most important thing is that your child feels heard and knows that you are there for them no matter what.
You’re not alone
Looking after your child is important, but so are you. There are lots of people, services and resources out there – such as your hospital team, school or close friends and family - that can support you to keep doing what you feel is best for you and child.