How to support a dying child

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HealthWiki > Helping Children Live with HIV > Chapter 6: Helping children through death and grief > How to support a dying child

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In this chapter:

 

In this chapter:

• Chapter 6: Helping children through death and grief
• Helping children when caregivers are very ill
• Helping children after a caregiver dies
• How to support a dying child
• Community support for grieving families

To face the fact that your child is dying and you must somehow support him through that is very difficult for any parent. Most people want to avoid discussing serious illness with a child, or try to hide their grief from the child, thinking it will protect him from pain. How can you tell your child he is dying? How can you help your child have as good a life as possible until he does die? As difficult as it may be, doing these things for a dying child can help the child feel less fearful and lonely.

Did I do something bad? No one will tell me what is wrong.

Dante was 5 years old and for his last few weeks of life he was in a hospital. Once it was certain he was going to die, he was moved out of the children’s ward to a room at the end of a hallway. The health workers felt they had failed, and Dante’s family could not face the idea he would die, so all but his mother stopped visiting him. Dante wondered what he had done to drive everyone away. Two weeks later, Dante died, without the chance to say goodbye or cry together with his family or to feel their love and companionship.

When to tell a child he may be dying

When a dying child is old enough to worry about his illness and whether he might be dying, it can help him if someone will discuss his condition honestly, in simple words appropriate for his age. This gives him a chance to think about it and ask questions if he wants to. When a dying child is helped to understand his condition, and can share feelings and questions with his family, it can bring them closer during a difficult time.

A child’s age matters. Children younger than 3 years old cannot understand death at all. But children age 4 or 5 and older often understand more than we think they can. Some very ill children feel the changes in their bodies and see how the adults around them are upset. They may already suspect the worst.

Your child may ask questions about his illness or about death that you do not feel you can answer. Or you may feel too upset to be loving and close with your child. Seek the support you need to be better able to help him during this time.

You are the expert about your child and can decide how to tell him and when. When you begin to talk, follow the lead of your child. He may want or need to know only a little.

Children often let you know they have heard enough by changing the subject, looking away, becoming restless, or playing with toys.

Preparing to talk to your child

We avoid discussing death with children not only to spare them pain, but because of our own fears and discomforts:

I don’t know what to say. What if my child gets upset?

I feel so helpless

What if I cannot stop crying?

I don’t want to take away hope.

It feels wrong to talk to a child about death.

Talking with other parents who have gone through this themselves may help you deal with your own feelings and know what to do and say. The whole family should discuss together how to prepare for the child’s death and what to say to the child. Guidance from a counselor, a village elder, a health worker, or hospice worker can be useful. Also, your religious beliefs may help you.

For more about how children understand death, how to talk with them about it, and ways to prepare for these difficult conversations, see Chapter 5.

How to tell a child he will likely die

Will I ever be well?

I do not think so, dear boy. The doctor said she cannot fix the problem inside you.

What will happen to me?

You will get more and more tired. After some time your body will simply stop working. I will be here with you the whole time.

When you are ready, say a little at a time, answering only what the child asks, while being as open and honest as you can. Use plain language, and avoid vague terms for death that try to soften the idea, such as “passing away,” “living in the sky,” “going on a long journey,” or “going to sleep forever.” These may confuse children, cause new fears, or give them wrong ideas about death.

Older children may be frightened about dying or what happens after death. Fear of pain, of being alone, and of what happens to their body are common. There is no one right way to answer children’s questions about death, but your support will make them feel less afraid and less alone. Talking honestly with children may upset them at first, but sharing what you know usually makes children more peaceful and relaxed, and brings families closer.

Reassure your child that he will not be alone, and you will continue to love and support him. Remind him about people who care about him and will always remember him — friends, teachers, nurses and others. You might discuss your family’s religious or spiritual beliefs about death and what happens after death.

How to support your child during this time

Remember when Uncle came to visit and he took us on a boat?

That was fun, wasn’t it?

• Talk about favorite things with your child.
• Do what you can to keep him comfortable. Make sure any pains or discomforts are treated as fully as possible. See Chapter 12 and Chapter 13.
• Try to find ways to make each day count. Give your child time to play and do other activities as possible. Encourage people who are close to your child to visit, including friends his age.
• Keep his daily schedule the same as much as possible and make sure he is not left alone.

When talking with the family or older siblings about a child dying, be honest about the coming death and listen patiently to any questions, fears, and concerns they have. Encourage family members to collect photos and mementoes of the child, share stories, and create a memory box.

Community and spiritual support can help families as they prepare. It may help both you and your child to pray together.

Signs that death is near

Thank you for coming. It seems Koji will not live through the week.

• The child may be confused, see things that are not there, or speak in ways that do not make sense.
• He may gasp, snore, breathe with difficulty, or make a rattling sound in his throat.
• He may have a slower heartbeat as his heart gets closer to stopping.
• He may not focus his eyes, and more of the white part may show.
• He may have colder arms and legs, and darker nails and lips.
• He may vomit or pass stool or urine.

Gently calm the child. Help the family understand that these are common signs the child will soon die.

Ways to comfort a dying child:

Loosely hold the child or baby close. Softly talk, sing, or hum to the child.
Gently fan a child having difficulty breathing
	Do not force your child to eat or drink. Instead wet his lips with a clean, wet cloth.
Keep the child warm and dry. Change clothing and bedding often if needed. Keep giving pain medication. If a child can no longer swallow, you can gently give pain medicine rectally in the anus (butt hole)
Stay with the child. When he has stopped breathing and has no heartbeat, the child has died.

Ways to comfort your family

Some family members may want to see the child’s body, others may be afraid to. While seeing and touching the body can help some people grieve, do not force anyone, especially other children, to see or touch the body if they do not want to. Spend as much time as you need to with the child’s body.

Cry as much as you want, dear sister.

We will miss your boy!

It is OK and healthy to cry or wail. Make sure young children have someone who can reassure them or take them away if being near the dead child or seeing the family’s reaction upsets them.

After the death of a child, it is normal for family members to be sad and angry. Sometimes these feelings last for many months and make it difficult to do daily work and care for each other’s needs. Seek help from others in your community for the support you might need to cope with your loss.

How can they play?

Children are like this. It is good for them to run. They are sad too, when they think of their brother.

Siblings may grieve differently than adults. Some children act as if little has changed, continue to play, and seem unbothered. Other children have a lot of sadness, guilt, or other feelings. Some are lonely when family members are busy grieving and cannot give them attention. However siblings respond, make sure they are getting attention and support.

For information about how children of different ages show grief, and what they need, see Help children with grief in this chapter.

See the bird Lilia? Maybe your sister’s spirit flies above us like that.

Very young children will not be able to talk about their feelings, but they too are grieving and need extra love and attention after the death of a sibling.

Giving a child a toy or other possession of the sibling who has died can provide some comfort, and will also especially help a grieving child with a disability, such as deafness or mental slowness.

Sometimes children have a confusing mix of feelings after the death of a sibling. Support from other children can help.

I feel bad because my sister is gone and I am still here.

I’m sad too. Sometimes I think my father wishes it was me who died.

I used to feel that way. But now my mother is doing better. She cries less and I feel less worried.

This page was updated:27 Nov 2019