22.2 Developmental Concepts of Death

Dying and Grieving in Children and Adolescents: Developmental Concepts of Death

When we think of death and dying, we naturally focus on the elderly, and when we think of children in this process, we typically think of adult children, who often act as caregivers for their aging and dying parents. However, children and adolescents are also involved in both dying and bereavement. An understanding of age-appropriate grief reactions and conceptions of death are important when assessing a child’s response to their own terminal illness and how they are dealing with the death of a loved one. This section reviews key developmental concepts and describes strategies for supporting children and adolescents who are grieving as well as those who are dying.

Children grieve differently than adults. They often grieve in spurts and can re-grieve at new developmental stages as their understanding of death and perceptions of the world change. Childhood grief may be expressed as behavioral changes and/or emotional expression. The two most important predictive factors of a child’s successful resolution after suffering a loss are the availability of one significant adult and the provision of a safe physical and emotional environment.

Infancy (0-2 years) 

Children at this age have no cognitive understanding of death. If they themselves are dying, they are not aware of this fact. Their reactions are based completely on local conditions, including their contact with caregivers and their own current levels of pain and suffering. Infants can be comforted by the presence of secure attachment figures and palliative care to reduce pain. The process of dying is much more psychologically painful for caregivers than for infants, but hospitals and hospice care know how important the active participation of a caring and responsive attachment figure can be, one who is making medical decisions based on the balance between the probability that a treatment will be effective (vs. prolonging the dying process) and the pain that treatments cause.

In terms of infants’ reactions to the death of a loved one, even if infants are not cognitively aware of death, they are cognizant of separation and loss, and so separation anxiety and grief reactions are possible. Behavioral and developmental regression can occur as children have difficulty identifying and dealing with their loss; they may react in concert with the distress experienced by their caregiver. There is a need to maintain routines and to avoid separation from significant others.

If the death is the primary attachment figure, the presence of grief and the severity of the infant’s reaction will depend on their age and the quality of care they receive from their new primary caregiver. Before the age of 6 months, the long term effects of maternal death depend almost entirely on whether a sensitive responsive substitute caregiver can be found who can take over immediately. For children older than 6 months, who have formed a specific attachment to the primary caregiver, expressions of grief and loss are common, but the transition is easier if the new primary caregiver is someone who the infant or toddler knows and with whom they already have a trusting relationship (e.g., father, aunt, grandmother). As mentioned previously, children may repeatedly revisit and re-grieve the loss of a primary caregiver at successive ages as they develop cognitive capacities that allow them to to reflect on the loss in qualitatively different ways.

Early Childhood (2-6 years)

Preschool age children see death as temporary and reversible. They interpret their world in a literal manner and may ask questions reflecting this perspective. When children themselves are facing death, they take their cues about what is happening almost entirely from their caregivers and the other people around them. They have typical developmentally-graded concerns about attachment and abandonment, and have a hard time understanding why they have to accept painful treatments and why they can’t just go home and get back to life as usual. They can have tantrums and difficulty regulating their emotions and behaviors, and it can be hard for parents to discipline or set limits with a terminally ill child. However, the same kinds of high quality parenting that are good for children in other circumstances, namely, love (affection, caring, and concern) combined with firm and reasonable limits, and autonomy support (validation and opportunities for free expression of preferences and perspectives), are helpful for young children in these situations. Young children should be protected from adult anguish, but they can sense when adults are upset. Small children benefit from familiar routines, assurances that familiar adults are going to be with them the whole time, support for whatever emotions children are actually experiencing, and developmentally-attuned explanations and answers to young children’s questions.

When preschool aged children are dealing with the death of a loved one, especially a central person in their lives, like a mother, father, or sibling, their conception of death makes the process of grieving more difficult. They may believe that death can be caused by thoughts and provide magical explanations, often blaming themselves for the death. The conviction that death is reversible makes it difficult for preschoolers to cognitively accept the death as final. They sometimes beg parents to go get the dead person and bring them back home, and they can become frantic if they are told that the person has been buried. In the context of this conception of death, it is challenging to provide simple and straightforward explanations that emphasize that the child is not to blame, that the loved one cannot return even though they did not want to go, and that the absent person still loves the child.

Even when adults avoid euphemisms and try to correct misperceptions, preschool children often regard death like a kidnapping (with the dead person taken far away against their will) until they reach the concrete operational stage of cognitive development, when they rework their understanding of the death. It is this combination of developmental characteristics– when a young child has a full-blown attachment to a primary caregiver and a conception of death that makes it impossible to accept death as final– that puts children this age at particular risk for complicated grief and long-term negative neurophysiological and psychological effects. As with infants, the greatest protection against developmental risk is provided by the immediate presence of a loving and stable attachment figure, preferably one to whom the young child is already securely attached.

Middle childhood (6-8 years)

When children reach the concrete operational stage of cognitive development, they understand that death is final and irreversible but do not believe that it is universal or could happen to them.  Death is often personalized and/or personified. Expressions of anger towards the deceased or towards those perceived to have been unable to save the deceased can occur. Anxiety, depressive symptoms, and somatic complaints may be present.  The child often has fears about death and concerns about the safety of their other loved ones. In addition to giving clear, realistic information, offer to include the child in funeral ceremonies. Notifying the school will help teachers understand the child’s reaction and provide additional adult support.

Preadolescence (8-12 years)

Children at this age have an adult understanding of death – that it is final, irreversible, and universal. They are able to understand the biological aspects of death as well as cause-and-effect relationships. They tend to intellectualize death as many have not yet learned to identify and deal with feelings. They may develop a morbid curiosity and are often interested in the physical details of the dying process as well as religious and cultural traditions surrounding death. The ability to identify causal relationships can lead to feelings of guilt; such feelings should be explored and addressed. To facilitate identification with emotions, it may prove useful to talk about your own emotions surrounding death and to offer opportunities for the child to discuss death. The child should also be allowed to participate, as much as they feel comfortable, in seeing the dying patient and participating in activities surrounding the death.

During middle childhood and preadolescence, children have a concrete operational understanding of death. When children in this stage are themselves terminally ill and facing their own death, their concrete understanding of death can lead to a relatively matter-of-fact acknowledgement of the actual situation. At this age, adults should still follow the child’s lead in terms of questions and explanations, and share their own grief and sadness only as appropriate. Children may show a wide variety of emotions, but they still have developmentally-graded concerns focused, for example, on keeping up with their friends and their schoolwork. To the extent that the parents of a child’s friends are willing to let them keep the dying child company, the presence of friends can provide both distraction and comfort to the child. Connections with friends can also be maintained through letters, notes, phone conversations, and virtual meetings, where the friends can play games or work together on their homework.

Adolescence (12-18 years) 

Adolescents also have an adult understanding of death. At the same time, however, they are also developing the ability to think abstractly and are often curious of the existential implications of death. They often reject adult rituals and support and feel that no one understands them. They may engage in high-risk activities in order to more fully challenge their own mortality. They often have strong emotional reactions and may have difficulty identifying and expressing feelings. It is important that adults support independence and access to peers, but also provide emotional support when needed.

When adolescents face their own deaths, they also have full blown emotional and psychological reactions. Like adults, they can grieve the lives and possibilities that are lost with death at a young age. Parents and peers can help them create legacy projects, like blogs, videos, music, or books, that can enable adolescents to feel that they have accomplished at least some parts of their life purposes. However, they remain adolescents, with developmentally-appropriate concerns and problems. For example, the emotional instability and need for autonomy that is characteristic of adolescence can sometimes make it difficult for parents to provide helpful support under such circumstances. Adolescents can get into arguments with parents about whether or not they will accept certain medical treatments, especially if the treatments affect their physical appearance. Adolescents, especially young adolescents, can find life-threatening diseases embarrassing, because it makes them different from their peers during a time when they are concerned with peer conformity. However, adults can rest assured that even if they do not always acknowledge it, adolescents count on the presence, wisdom, and support of their parents.

In sum, the generalizations and strategies provided here only serve as a framework when helping a child come to terms with their own death or that of a loved one. The overarching message is that children and adolescents have age-graded conceptions of death, and developmentally-appropriate concerns and challenges in dealing with grieving and dying. They also need individually and developmentally attuned supports during these processes, which can be demanding for their adults. When in doubt, seek help from pediatricians, child-life specialists, mental health professionals, and others specializing in bereavement.

Loss during Childhood

Loss of a family member. For a child, the death of a parent, without support to manage the effects of the grief, may result in long-term psychological harm. This is more likely if adult caregivers are struggling with their own grief and are psychologically unavailable to the child. The surviving parent or caregiver plays a crucial role in helping the child adapt to a parent’s death. Studies have shown that losing a parent at a young age does not just lead to negative outcomes; there are also some potentially positive effects. Some children showed increased maturity, better coping, and improved communications skills. Adolescents who have lost a parent value other people more than those who have not experienced such a close loss (Ellis & Lloyd-Williams, 2008).

The loss of a parent, grandparent, or sibling can be very troubling in childhood, but even in childhood there are age differences in relation to the loss. A very young child, under six months of age, may have no reaction if a caregiver dies, but older children are typically affected by the loss. This is especially true if the loss occurs during the time when trust and dependency are formed. During critical periods such as 8–12 months, when attachment and separation anxiety are at their height, even a brief separation from a parent or other person who cares for the child can cause distress.

Even as a child grows older, death is still difficult to fathom and this affects how a child responds. For example, younger children see death more as a separation, and may believe death is curable or temporary. Reactions can manifest themselves in “acting out” behaviors: a return to earlier behaviors such as sucking thumbs, clinging to a toy or angry behavior; though they do not have the maturity to mourn as an adult, they feel the same intensity. As children enter pre-teen and teen years, there is a more mature understanding, but strong emotional reactions are still normal.

Loss of a friend or classmate. Children may experience the death of a friend or a classmate through illness, accidents, suicide, or violence. Loss from sudden violence, like drive by or school shootings, are particularly traumatic. Initial support involves reassuring children that they are safe, that their emotional and physical feelings are normal, and that support is available. Schools are advised to plan for these possibilities in advance. Planning and participating in rituals and memorials may be helpful, but will also challenging. Some children choose to continue visiting with the parents or family of their dead friend or classmate, to keep the connection, share the loss, and comfort the family.

Other forms of loss. Children can experience grief as a result of losses due to causes other than death. For example, children may grieve losses connected with divorce and pine for the original family that has been forever lost. As with other losses, they may re-grieve this transition as they get older and have more sophisticated cognitive capacities to reflect on and rework the meaning of the divorce. Relocations can also cause children significant grief particularly if they are combined with other difficult circumstances such as neglectful or abusive parental behaviors, other significant losses, etc. It is also possible for children who have been physically, psychologically, or sexually abused to grieve over the damage to or the loss of their ability to trust. Since such children usually have no support or acknowledgement from any source outside the family unit, this is likely to be experienced as disenfranchised grief.