Supporting children with a life-limiting illness
Kassam, 2015Kreicbergs, 2004Paediatric Palliative Care Service, 2014
Children’s understanding of illness and death evolves as they grow. The concepts that need to be understood before a child is said to have a complete understanding of death include separation, causality, irreversibility, cessation of bodily functions, universality and insensitivity; for a description of these concepts, and the average age at which they are understood, see Children’s understanding of the concepts of death.
Three-year-old children are aware of death but think of it as a temporary, reversible state. Most 8- to 9-year-old children have a mature understanding of death (have an understanding of the concepts outlined above). Most 12-year-old children have, in addition, some understanding of what a dead person looks like. However, there is considerable variation, particularly in younger children, and children may regress at times of extreme stress, such as illness and grief. It is essential to assess the child’s level of understanding and tailor communication accordingly.
The experience of life-limiting illness can also impact on a child’s understanding and behaviour. Children are able to distinguish between a potentially life-threatening illness and an acute or chronic illness from which they will recover. A chronically ill 6-year-old child may know more about illness and death than a healthy 9-year-old child. Children who are aware they have a life-limiting illness may show the following:
- preoccupation with death in conversation and play
- displaying anger, especially in relation to procedures and medications
- reluctance to discuss future events
- social withdrawal.
Healthcare professionals and parents often worry about what to tell children. Even when children are nursed in isolation and ‘protected’ from information, they rapidly find out about their disease, their prognosis and the fate of other patients. It can be more helpful to focus on how best to support the child and respond to their questions.
Children are extremely sensitive to nonverbal communication. They know when parents and healthcare professionals are avoiding their questions or answering them dishonestly. They also know when their parents are upset or anxious. Effective communication can minimise anxiety and feelings of isolation in the child. Key points for communicating with children are outlined in Key points for healthcare professionals communicating with children who have a life-limiting illness.
Respect the parents’ views and expertise on how best to communicate with their child.
Listen carefully to learn what a child already understands, what their concerns are and what they want to know.
Take the child’s hopes and desires seriously.
Be honest and provide information in simple, age-appropriate language.
Repeat information and check comprehension.
Be alert to misunderstandings that may arise from immature concepts of death (eg the child views illness as punishment for misbehaving).
Validate the child’s questions (eg ‘That is an important question to ask’).
Be curious about what the child says (eg ‘Why do you ask that?’).
Be honest if you do not know the answer to a question (eg ‘Can I think about that?’).
Express your own emotions to help the child do so.
It is important to find out what a child’s real concerns are. The subject of death may concern adults, but children do not necessarily share this anxiety. They may be more worried about whether they will be in pain, who will be there for them, what their friends will think, and changes in their appearance and physical ability. Children may also fear the loss of attachment and bonds they have with their family.
Play is important to allow children to express their concerns and preferences. Both parents and healthcare professionals can use age-appropriate activities for children to express themselves (eg play, art, music, story books). Parents may find some of the subject matter disconcerting; reassure them that ‘playing funerals’ and drawing graves and dead people can be appropriate in the context of a life-limiting illness.