St Gemma's Hospice
Providing access to palliative care information and education for patients, carers and professionals to promote end of life choices
A nurse comforts a child

Explaining to children

How do I answer my children’s questions about what is going to happen?

Families tell us that talking to children about death and dying is one of the most challenging things they will do, we understand how difficult this is.

It is our instinct to protect children from distress and to not give them additional pressure or stress, unfortunately when someone close to them is dying the child needs to be involved in what is happening. They need to be given information in language that they understand and as difficult as it is, we need to be able to talk to children about death and dying using these words, it is critical that children know that death is final and that the words you use cannot be misinterpreted.

The first thing to bear in mind is that children will wonder what is happening whether you tell them the truth or not. They are sensitive to their emotional environment and will pick up on feelings and changes in mood, despite any attempts to hide them. What you don’t say will be imagined, such as that they have done something wrong or that they aren’t loved any more, so it is important to tell them what is going on in a sensitive way while offering lots of reassurance. It is probably better to tell them yourself directly, seeing as you will be continuing to support them later, but this might feel too difficult to manage. You might therefore prefer to have someone who works with children in this area explaining things to your child with you in the room to comfort and reassure them.

It is important not to diminish the seriousness of the situation by giving partial or incorrect information. The truth will become apparent in time whatever you tell the child, so it is important to ensure that nothing you say will be contradicted later. You need to retain the child’s trust so try and be honest with them at all times. A ‘right time’ might never present itself, so it’s more important to get the information across so the child knows what is happening. This is better than leaving them to ask increasingly difficult questions, which become increasingly difficult to answer.

Try not to become concerned if your child seems unaffected or ambivalent about the information once you have given it to them. Children tend to be more natural with their emotions than adults, and they may not react or respond as you expect them to. They often take the information away with them and think about it later on, sometimes at unexpected times such as when they are in the middle of playing. It is important to offer reassurance and be there to comfort them when they feel they need it. Try and let them decide when to bring the matter up for discussion, as they are usually very good at picking a time when they are best able to deal with it, it is very hard to ‘force’ a child to talk about painful emotions and in most situations a child will walk away or change the subject if pushed into doing this.

Another thing to remember is that children are good at switching on and off from the seriousness of the situation. In many ways, we would do well to learn from them in this way. This is a healthy response in times of crisis and during prolonged stress is to switch on and off from confronting the difficulties. This is known as a confrontational / avoidant approach, and it involves taking time out to switch onto more distracting and pleasant pursuits to give the mind and emotions time to recharge. Children will therefore have a real need to do fun things as usual, and you should continue to make sure they have plenty opportunities to play and feel that things are normal (even though it is obvious things are anything but normal). It will probably do you good to take some time out with them, so try and put serious discussions aside at these times. With children, there is definitely a time for seriousness and a time for play, so try not to confuse the two.

When visiting a patient in the hospital with children, make sure they have something to occupy their minds. Their sensitivity to emotional undercurrents might cause them to misbehave or to become very quiet, so having something for them to lose themselves in is always a good idea. They also tend to have shorter attention spans and are more sensitive to what is going on around them, so try not to stay for overly long visits, and it might be good idea to take them somewhere fun directly after the visit, like a fast food restaurant or an activity centre. Changes in the appearance of the patient due to weight or hair loss can be explained before the visit so that the child is prepared. This might prevent them from asking questions directly to the patient, who might be upset by it. The main thing to tell them in preparation is that although the person might look different, they are the same person they were before. Children should be able to decide how much contact they want with their special person when they are dying, they can be prepared for this, even if this may feel overwhelming.

It is usual for children to become angry when they discover someone they love is dying, providing an outlet for this is important, having regular physical activity can help to regulate emotions, in most circumstances the anger is linked to sadness, frustration and confusion as the child begins to understand what is happening. Under 5s tend not to have the sophistication of language or the understanding of emotions to be able to describe how they feel, but they may act out and ‘play’ their sadness and distress.

Children at different ages and stages of development will deal with grief in different ways. It is often very difficult for the under 5s to have a sense of the finality of death and it is not unusual for them to say they understand daddy is dying but will then ask ‘will he be home for tea’, ‘will he visit at christmas’. It is normal and to be expected that younger children will regress, it is worth asking yourself, if you see behavioural changes, “is this age appropriate?”, if not “at what development stage do you see this behaviour”. You might find that your 6 year old starts to hit other children, not something you expect for their age but behaviour more commonly seen in toddlers. Bedtime routines are also often more difficult when a child knows that their special person is terminally ill, it is important that we do not tell children that the dying person is ‘sleeping’ or has gone to sleep and will not wake up, this can cause worry about their own sleep.

Teenagers may struggle in different ways when they understand that someone close to them is dying, they are naturally more engaged with friends and relationships outside of the family and can feel torn when a relative is terminally ill. It is important to share information with older children, not to give every detail about treatment and side effects but as they engage more with the Internet and social media it is easier for them to search terms like, ‘cancer’, ‘hospice’, ‘palliative care’ and it is much better that information is given to them by people who know them and care about them than gathering this from the Web. Teenagers in particular, can feel that they have not been trusted with information, if they are shielded, this may feel protective but can in the future cause more issues as they question adults about what is not being said to them.

You may not have all the answers to the questions the child might ask, but don’t feel bad about it. It’s fine to say you don’t know the answer to something and it’s more honest than telling them something that isn’t true. Remember, being honest is what matters most. Stick to the facts and don’t use flowery language. Obscuring the truth and the harsh reality by being evasive lessens the chances of the child grasping what you are saying to them, which can then lead to confusion and distrust. You will worry about saying the wrong thing and not having the right words, trust your instincts and do not be afraid to ask for advice or to consult the available leaflets and guidance.

Children will ask about what happens after someone dies, it is worth asking them what they think happens, to check for example, if they have a belief in heaven. Families can feel that it is a good idea to offer reassurance to a child, that gran ‘will be a star in heaven’, this can cause additional loss when it is cloudy and the star cannot be seen. Telling children that a relative will always be ‘watching over you’ may also result in additional stress, they may feel that they cannot misbehave or have any privacy. Children need to maintain a relationship with the person who dies and this can be described as ‘keeping the person in your heart and in your head’. We do not need to be prescriptive about believing in an afterlife but need to support children who do have faith to develop their understanding and what this means for them.

If you would like help from someone who can advise you on talking to children about these serious issues, your district nurse, community palliative care/Macmillan nurse or social worker can put you in touch with organisations that may be able to help.

Books that might help young children

Books that might help older children

  • The Copper Tree (2012) Hilary Robinson & Many Stanley £6.99 Strauss House Productions ISBN 978-0-9571245-0-9
  • The secret C: straight talking about cancer (2000)
    Julie Stokes
    Winston’s Wish, £3.95
    ISBN 0953912302
  • A dragon in your heart (1999)
    Sophie Leblanc
    Jessica Kingsley, £6.95
    ISBN 1853027014
  • Two weeks with the Queen (1999)
    Morris Gleitzman
    Penguin Books, £4.99
    ISBN 014130300X
  • Dr Dog (1996)
    Babette Cole
    Red Fox, £5.99
    ISBN 0099650819
  • The soul bird (2004)
    Michal Snunit
    Constable and Robinson, £4.99
    ISBN 1841198978
  • The huge bag of worries (2004)
    Virginia Ironside
    Hodder Children’s Books, £5.99
    ISBN 0340903171
  • Laura’s star (2000)
    Klaus Baumgart
    Little Tiger Press, £5.99
    ISBN 1854306960
  • Fred (1998)
    Posy Simmons
    Red Fox, £5.99
    ISBN 0099264129
  • Laura’s star (2000)
    Klaus Baumgart
    Little Tiger Press, £5.99
    ISBN 1854306960
  • Love you forever (2001)
    Robert Munsch
    Red Fox, £5.99
    ISBN 009926689X

Please also see Winston’s Wish and Cancer Research UK – both websites have a list of books for children.

Websites you might find helpful:

Cancer Research UK – Talking to children about cancer, common misunderstandings, list of books for children, etc.

Macmillan Cancer Support have a section on their website for schools and young people, including advice about Talking to children about cancer.

Marie Curie Cancer Care has booklets available to download including ‘Talking to children when someone close is very ill’ and ‘Helping children when someone close dies’.

Riprap – This excellent website is unique in that it is designed to allow children to communicate with other children who also have a parent with cancer.

Winston’s Wish – A charity for bereaved children which offers practical support and guidance to families, professionals and anyone concerned about a grieving child. This website has an online store of children’s books.

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    This website has been developed in partnership by NHS and health and social care organisations in Leeds following the Marie Curie Delivering Choice Programme.
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