How to support your child when they’re dying

What to expect at the end of your child’s life

Knowing what to expect at the end of your child’s life can help you provide the best possible care and support for your child.

Physical changes in your child

If your terminally ill child is dying, they’ll go through many physical changes. For example, they might have an increase in their symptoms, find it harder to move around, and need more medical intervention.

Your child’s thoughts, feelings and behaviour

There might be intense and changing emotions too. For example, your child might feel:

embarrassed about losing their privacy
worried about you
worried about pain
frustrated that they can’t do the things their friends are doing
angry about medicines, hospital stays or appointments
excited about an upcoming treat
happy to spend time with their grandparents
grateful for your care.

Your child might also be thinking about how they’d like people to remember them or what they’d like people to remember them for.

If your child is younger or very ill, they might express these feelings through behaviour. For example, they might be withdrawn or more clingy than usual.

Things you might not expect

Your child might also think and behave in ways you don’t expect.

For example, if your child is younger than 7 years, they might think they got sick because of something they did, like being mean or wearing a particular hat on the day they got sick.

Teenagers might understand their illness but find it hard to understand why their treatment interferes with things like seeing friends.

Your child might not always say how they’re feeling. Instead, they might express feelings about their situation through behaviour, play, drawing or writing. It’s important to look for signs of how your child is feeling and talk with your child about the end of their life.

Practical tips for supporting your child at the end of life

Here are ways to support your child near the end of their life.

Family life

Try to continue with familiar routines as much as possible – for example, family dinners, chores, weekend movie nights and bedtime routines. Even modified routines give your child a sense of stability and predictability.
Respond to your child’s behaviour as usual. For example, remind your child of your family rules if they swear or speak rudely. Without limits, your child is likely to feel out of control.
Try to fit in ordinary family activities together, like watching a favourite TV series.
Continue with family rituals as much as possible – for example, birthday celebrations, family nicknames or crazy handshakes.

Social connections

Get your child to school or school activities if you can. Your child could visit a class, have lunch with their friends, or watch a school production with friends.
Welcome visits from your child’s friends and loved ones, if your child is comfortable with this. But note that teenagers can feel embarrassed by their appearance or a lack of privacy as their illness progresses.
Encourage your child to keep in touch with friends via social media and video calls, especially if they’re not comfortable with visits.
Watch for when your child is tired of visitors. You could have a code word your child can use to let you know that they’re ready for the visit to end.

Goals and activities

Find ways to do enjoyable things when you can. Young children might still want to play. Teenagers might want to continue with activities they enjoy.
Encourage your child to have short-term goals, like learning to read or going away for the weekend. This will help your child feel that life still has purpose and meaning.

Your child’s end-of-life wishes

It can be difficult to raise the topic of end-of-life wishes, but it’s good for your child to talk early about their wishes. This gives them a say in decisions. Or your child might prefer for you to make all the decisions, and that’s OK too.

Your child’s end-of-life wishes might include:

coming home from hospital if that’s possible
having a certain relative or friend care for them sometimes
going on a special holiday or doing a ‘bucket list’ activity
spending time with friends, relatives and pets and saying goodbye
taking photos, making videos or writing letters for their loved ones
choosing gifts or special belongings to give to friends and family members
creating a memory box for their family to keep
contributing to funeral plans or to a special ritual to help family and friends remember them.

Organisations like the Make-A-Wish Foundation fund a ‘wish’ for terminally ill children.

Professional support for your child

It’s important to get professional support for your child. If your family is being cared for by a palliative care team or hospice, they can support your child. This support might include a referral to a psychologist with experience in end-of-life support.

You could also contact Paediatric Palliative Care or Canteen.

It’s important to look after yourself when your child is dying. This is a very challenging time. If you can look after your own health and wellbeing, you’ll be better able to care for your child. Professional support can help. You could start by speaking to your child’s care team or your GP.