Living with illness: when someone is expected to die

Telling your child(ren) that you or someone else is unwell can be very daunting, particularly if you are still processing this news yourself. It is natural to want to protect them from difficult news, to avoid them becoming upset. However, children can often sense when something isn’t quite right, and therefore being honest and communicating with them can help them understand what is going on, and be more prepared for changes that may happen as a consequence of a loved one being unwell. It will give them a chance to share any worries they have, and be involved in discussions about future plans.

Tips for talking to children about a loved one’s illness:

• Decide who is going to tell them - difficult news is best coming from someone that is close to the child, such as a parent, family member or close family friend. If you have children at different ages, you may wish to tell them separately. If you do tell your children together, ensure you spent some 1:1 with them after, allowing them to ask any questions and talk about their feelings.
• Choose the environment - talk to them in a quiet space, away from distractions. Younger children may engage better in conversation if doing something such as drawing or painting while talking. Try not to tell them before bedtime, as they may then have trouble sleeping afterwards. Telling your child during the weekend may give them a little time to take in some of the information before returning to school.
• Consider the language - try to use simple language and avoid euphemisms as this may be confusing to the child. If you are using medical terms such as ‘tumour,’ be prepared that your child might not understand what this means and you may need to explain it.
• Be honest - try to be as honest as possible in an age appropriate way. Try not to offer any false hope as this can lead to confusion and disappointment.
• Check that they have understood - ask questions afterwards to ensure that they have understood the information. Younger children may need information to be repeated.
• Acknowledge emotions - acknowledge that it is okay to feel however they may be feeling. Using words such as ‘sad’ and ‘worried’ helps to name and normalise these emotions. Some children and young people may not want to talk about their emotions with their parents, let them know that it’s okay to reach out to others too.
• Offer reassurance - younger children can often have ‘magical thinking’ and may believe that that their loved one is unwell due to something they have done. It is also not uncommon for them to think that they may catch the illness like a cold. Offer reassurance that there is nothing they have done to cause the illness, and there is no way that they can catch it.
• Get support - reach out to family and friends. Speak to your child’s school so that they can ensure that the right support is available to your child in school.
• What next? - Once children have been told about their loved ones illness, try to maintain routine where possible as this can help make their world feel more predictable. Keep them informed of any changes and spend some 1:1 time with them where possible, allowing them to share their feelings and any worries. Spend time trying to capture memories.

Starting the conversation:

If you have already told your child some information, you might want to start the conversation by gauging their current understanding. Ask them what they know about their loved ones illness. This will help you to recognise any gaps that they may have. You can then ask if they have noticed any changes (such as more tired than usual), and you can let them know that their illness has been getting worse and the doctors have been trying their best to do all they can, but nothing is going to make them better. This means that they won’t live much longer and they will die. It is hard to when this will be but the doctors think it will be soon.

Remember that not all of the information needs to come from one conversation. You could re-visit the conversation to check understanding, fill in any gaps and answer any questions that they may have. Giving information gradually can sometimes feel easier than giving it all in one go.

Children can react in different ways. Some children may become upset, angry or withdrawn. Others may not react initially at all. All of these responses are normal. Offer reassurance that it is okay to feel the way that they are and let them know that you are there to talk if they’d like to.

As time goes on, you may feel that they’d benefit from some additional support. Find out about the support that the 565 service offers below.

Answering difficult questions:

Should your child ask questions that are difficult to answer, it is okay to let them know that you don’t have the answer to all of them, but you will get back to them. Here are some examples of things that children may ask, and some suggestions on how to answer:

“When will they die?” you could respond with an answer such as, “It is hard to know exactly when they will die, but the doctors think it could be soon (days, weeks, months). Until then, the doctors and nurses will continue to look after them and make them feel as comfortable as possible.

“What happens when someone dies” you could reply with “when someone dies, their body stops working. Their heart stops beating and they stop breathing. They do not feel any pain. Once they die, they will not come back to life again.

“Will I get ill too?” It is common for children to worry about their own health or the health of others around them. Explain that their loved ones illness cannot be caught and that most people will die when they are much older.

“What will happen to me when they die?” If the person who is expected to die plays a significant caring role to the child, they may worry about what will happen to them. Where possible involve them in the planning and discussions around the changes that will happen.

Books:

Books can be a great way to help explain death and dying and can be an opening point to further discussion. Here are some books that we recommend:

• When your Mum or Dad has Cancer, by Ann Couldrick
• Cancer Party, by Sara Olsher
• When Dinosaurs Die, by Laurie Krasny Brown an Marc Brown
• Beginning, Endings and Lifetimes in Between- Bryan Mallonie

Getting further support:

If you would like some further support and guidance, 565 service at St Elizabeth Hospice may be able to help. Please click here for further information.

To make a referral to the 565 Service, please contact us on our emotional and spiritual wellbeing enquiry line, 0300 303 5196, Monday to Friday, 9am – 4pm, alternatively, email on emotionalwellbeing@stelizabethhospice.org.uk.