Supporting a Child in Advance of a Death

Serious illness, when death is expected

It is very upsetting to know that a family member or friend will die. This can be a very difficult time for a child if they do not fully understand what is happening. It’s painful to see a child upset, but children do cope better with sad news when they are told the truth.

Clear, age-appropriate communication can ease a difficult task.

Who should tell the child?

  • Parents and guardians who care for their children every day are usually the best people to communicate the news. Get support from a friend or relative if necessary.

When is the best time?

  • Waiting for ‘the right time’ to have a difficult conversation may delay giving a child important information. Conversations should take place as early as possible in the illness to allow the information to sink in. Then the child can ask questions later on, when they have had time to think.
  • Talking to children about illness should be an on-going process (the timing will depend on whether you are dealing with a sudden or long-term illness). Children find it hard to take in too much information at once, so break it down for them. Take small steps and add a little to the story each time.
  • Avoid bed-time conversations if possible.
  • Talk quiet place where you won’t be interrupted.

What to say:

  • Decide in advance what information you want to give, and in what words: both depend on the age of the child and their ability to understand what is said. Children of different ages will need different levels of information.
  • A useful start can be to say you want to talk to them about the person who is sick.
  • Children often notice changes in the appearance of an unwell person and the daily routine. Check what the child already understands about the person’s condition, and the conversation can build from there.
  • Be as honest as you can about what is happening to the person.
  • It is usually helpful to say the name of the illness.
  • Use simple, familiar words and communicate clearly without being rushed.
  • Books or drawings of the body may be helpful to explain a condition.
  • Children need very clear languge. Although it may be hard to use words such as ‘death’, these words can help children to understand. Children cannot infer meaning as adults do, and so need concrete language.
  • Vague words confuse children.
  • Avoid using the term ‘going to sleep’ to explain death. It is confusing and can make a child worry about bedtime.
  • Reassure them that no one is to blame for the illness.
  • When you have broken the news, ask what they understood. This will give you a sense of how much they have taken in.
  • If children are not told the truth about what is happening, then they will make up their own version of the story, which can cause misunderstanding and upset.

Dealing with questions

  • Let the child ask questions, either then or later on. Tell them who they can talk to if they have other questions. Children often need to ask a question several times before they can understand the answer. Repetition is important, especially for younger children.
  • Try to answer their questions honestly, and don’t give false hope.
  • Be guided by the child. Some children don’t want all the details.
  • If your child tends to be anxious, give them information in manageable amounts.

Emotions & managing change

  • Reassure the child about how they might be feeling and encourage them to be open about their feelings. It can help to share a little of how you are feeling, as that shows a child that it’s okay to be upset or angry.
  • Listen to the child and observe their emotional reactions and any changes in behaviour.
  • Children react differently. A child may behave as if they have not been told anything, or they may be upset or angry. It will be important to re-visit the conversation again.
  • If death is thought to be very close, children should be given the choice about spending some time with the person. This will help them to make sense of what is happening and to feel involved. This will of course depend on the ill person’s condition and whether this would be frightening or distressing for the child.
  • Practically, letting children know when the person may die can be difficult, but clarity about time does help where possible. Telling the child the person’s illness has got worse prepares them for what is coming next and gives them time to do what they need with the person. They may want to tell the person they love them, say goodbye, or write them a letter.
  • Communicating helps a child to feel included; that they are an important part of the family.
  • Advise children of any changes that might happen, either to the person or the household routine. This is really important if a normal routine is going to change. Keeping some of their routine, such as going to school, can help some children and it is important to let their teachers know about the illness in the family. It helps to give children some choice about going to school and that they are not forced at a time when they want to be with the sick person, particularly if time with them is precious.
  • If possible, try to keep changes to children’s routine for meals and bedtime to a minimum.
  • Children may worry that someone else in the family will become sick, so they may need to talk about this and to be reassured that it is hoped that no one else in the family will get sick in the same way, being careful not to promise that no-one will ever get sick again.
  • Strong emotions may be expressed indirectly, such as by being stubborn, arguing, or keeping to themselves. Such ‘acting out’ is a normal reaction to a situation that is out of their control.
  • Children will need a lot of reassurance and love during distressing times of change for the family. They need to know that even though you are very sad yourself, you will still be able to care for them. Child minders, family members and willing friends can often be a great support in providing this care.

Contact with the ill person

  • Contact between a child and the person who is ill – particularly if it is their parent, carer or sibling – is encouraged when possible.
  •  Particularly for younger children, keep visits short. The child should be told what to expect before they visit (for example, what the person will look like; whether they are asleep or awake; and any medical equipment they might see).
  • It can mean a lot to the child later on if they have been involved in a small way in providing care, such as getting a glass of water for the ill person. Children find tasks like this can give them a sense of control, though don’t burden them too much.
  • Time can help a child to feel they have said goodbye. Even if those words are not said, the sense can be felt in a hug or holding the ill person’s hand.

Care for yourself

  • Supporting children when someone is seriously ill can be hard, as you may be tired and dealing with your own emotions. Accept support from family or friends. It may help to talk to the healthcare team looking after the person who is ill.