Do children know that they are dying?

Most children sense that they are dying

“Hala once described a dream to her father in which she was with her dead grandmother who had ‘come to take her and fly into the sky.’ In her dream she also saw her friends Hosam and Raed who had died from the same condition as hers. They played together in the sky using stars. This conversation proved upsetting to her father.”

Extract from: Downing, J. Children’s palliative Care: An International Case-Based Manual (2020) Springer

What do most dying children understand about death?

The Private Worlds of Dying Children by Bluebond-Langner, M. (1980 Princeton Paperbacks Series. Princeton University Press, Princeton)

Most dying children:

  • Can understand that they have a serious illness by the age of 3 years.

  • Can understand that their illness is getting worse even if no one tells them.

  • Soon realise that adults find it difficult to talk about death.

  • May discover death is a safe topic to discuss with other children who are often eager to share information.

  • Learn to safely discuss their illness away from parents.

  • Are very frightened of separation, particularly from their family, but also from friends and from school.

  • Are frightened of pain.

  • May view illness and death primarily in terms of separation and pain.

  • Will not really understand the differences between curative and palliative approaches.

The stages of understanding children with long-term life-limiting illnesses go through

These are the stages that children generally go through over time and as their illness progresses.

  • I am sick.

  • I am sick, but I am going to get better.

  • I am going to keep on getting sick, but I will still get better each time I am sick.

  • I am going to keep on getting sick and I will not get better.

  • I am going to die.