The final stages of life can be confusing and scary for children if they do not understand the changes they see happening.  Not all terminally ill people will go through these changes, but talking about them ahead of time can help children be prepared.

Loss of Strength
The disease may weaken the body so much that the person will need lots of rest.  At some point, the person may not have the strength to talk.  Explain that he or she is still able to hear their voice and feel their touch.

Loss of Appetite
The person will slowly lose their appetite until they may not eat anything at all.  It is important to tell children that because of the disease, the person does not feel hungry or need food like they did before.

Pain or discomfort
The person may sometimes have pain or other discomforts from their illness.   Let children know that the care team is doing all they can to keep the person comfortable.

Personality changes
Some people may act differently as the disease weakens their body.  They may be more irritable, sad, or quiet.  Let children know that these changes are caused by the disease and not by anything anyone in the family has said or done.

Confusion
Some diseases cause the ill person to be confused as they get closer to the end of life. They may start saying or doing things that don’t make sense.   This can be very frightening for children.  Explain that the disease is causing the confusion and reassure children that nothing they did or said caused it.

Breathing Changes
It is common during the last few days of life for breathing to change.  There may be pauses between breaths or breathing might sound loud and heavy. There may also be a sound like the person needs to clear his or her throat.  Explain that these breathing patterns are like snoring – uncomfortable to listen to, but the person is not feeling any discomfort from them.

Explain to children that the family will not be calling 911 to prevent the death but will be doing everything to help the person stay comfortable.

The transition from life to death is often peaceful. Witnessing this can give children a sense of reality and comfort.  If you feel comfortable being with the person as they are getting closer to dying, ask your children if they would like to join you.  The child should decide; never force them to be there against their will.  Assure children that they do not need to feel guilty if they aren’t there at the moment of death.  If you feel uncomfortable having your children present, you may want to tell them about it later instead.

Don’t promise children they can be present at the time of death. Since many people die when everyone is out of the room, being with them is not always an option.  Gifts of words and art are other ways children can say goodbye.

Age-related Responses to Children at the Time of Death

Warm, loving concern should be shown to children of any age when they learn that the person has died.  Let children know they can say goodbye even if they are not in the same room or house with the person who has died.  

3-5 Preschool children will watch the reactions of the people around them. Their own reactions happen later, when they begin to understand that the person is gone from their life.  Once this happens, they may feel sadness and disappointment or have trouble believing that the person is gone.

6-8 There are many different ways children of this age may respond to the death. They might have no response at first, or cry quietly. They may sob or scream, even if they knew that the death was coming. These responses may last a few minutes to about an hour.  After this, most children usually return to what they were doing before the news.

9-11 Children this age often put on a brave face to help them deal with their strong feelings.  They may look like they are not feeling grief, but this is not the case. They sometimes show anger as a way to cover up their fear, anxiety and sadness.

12-18 Adolescents are able to talk about the fact that their loved one has died and show sadness and cry.  They also become anxious as they face the loss and how it will impact their life.

Remember that being patient with your child is the most helpful way you can support them at this difficult time for everyone.