What to expect at the end of life: physical changes, thoughts and feelings

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.

When your 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.

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, and angry about medicines, hospital stays or appointments. They might also be excited about an upcoming treat, happy to spend time with their grandparents, and grateful for your care. And they might 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 For example, they might be withdrawn or more clingy than usual.

Your child might also think in ways you don’t expect. For example, if your child is younger than 7 years, they might think they caused the illness by behaving badly, 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.

Children and teenagers don’t always say how they’re feeling. 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 at the end of their life.

Practical ways to support children and teenagers 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 of 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 pleasurable 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.

End-of-life wishes: how to support them

It can be difficult to raise the topic of end-of-life wishes, but children and teenagers usually want to talk early about their wishes, so they can have a say in decisions. Or your child might prefer for you to make all the decisions, and that’s OK too.

Children’s and teenagers’ end-of-life wishes might include:

• coming home from hospital if that’s possible
• having an aunt, uncle, grandparent or special 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 that will help family and friends remember them.

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

Professional support for children and teenagers who are at the end of life

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.