Children
How children view dying & death | telling | supporting
Introduction
This chapter addresses situations in which a child or children are in a family where someone is terminally ill. I don't know enough about caring for children who are dying to write on that painful topic.
Many of the processes and problems of adults and children are similar; so much of the information in other chapters of this book is helpful to parents or others caring for a child with terminal illness. There are, however, also significant differences between adults and children in processes, problems, and care.
Often the first response to the presence of a child in a terminal situation is to somehow shield or "protect" the child from the realities of the situation. Even very young children have some conception of dying and death, and attempting to completely disavow the reality of a terminal situation is futile and counterproductive.
Attempts to completely completely shield children from terminal illness are futile because children nearly always sense that something is very wrong. These attempts are counterproductive because the understanding that something is very wrong leads to attempts on the part of the child to determine what is wrong. Not being able to make an accurate determination leads inevitably to an inaccurate determination. Moreover, with distressing frequency, attempts on the part of a child to determine what is wrong lead the child to think that he or she is in some way at fault for what is wrong. Finally, when the patient dies, the child is unprepared for the death and subsequent grief of all concerned. Later, the child remembers, often with resentment, that he or she was denied knowledge and participation.
Influences on How Children View Dying and Death
The way a child views dying and death changes over time, and even from day to day, hence there is no infallible formula to determine how a particular child views dying and death. There are, however, factors that help adults understand how children view dying and death. These factors include the child's developmental stage, life experiences, social support, gender, who dies, how the death occurs, who survives, and the way in which adults close to the child deal with the issues.
Understanding a person's developmental stage gives important clues to how he or she might deal with terminal illness or other major life issues; and, in the case of a child, how a parent might help the child deal with the problems. Regardless of what is happening in a family, the development of a child goes on. Terminal illness may enhance or delay development, depending on how the child's development and the illness are addressed by parent(s). Readers will notice that terminal illness, especially of a parent, seems to create conflict with several of the crises or developmental tasks of children. In early and late adolescence, for example, while the child's identity as separate from the family is developing, the illness may result in a need to be closer to the family. This is not the contradiction it may seem: Both the developmental tasks and the family needs are important.
Although there may, at times, be some delay in a developmental task, in most cases, participating in a terminal situation is better than not participating. Nearly all children (and many adults) regress to some extent or show behavior characteristic of an earlier stage of development at some time when a loved one is terminally ill. An independent child may begin to cling and whine; a child previously able to manage bowel and bladder may begin to wet the bed; or a child previously able to control feelings may begin again to have temper tantrums. This normal and almost universal response may be viewed as an unconscious attempt to go back to a time when these terribly difficult things were not happening. They are a child's way of running from pain and asking for solace.
Young children often think in magical terms and may thus believe that a loved one is not really dying, or that when it is over, the person who is terminally ill will not really be gone. In general, the older the child, the better able he or she is able to understand the finality of death. Note that in the stages presented below that (1) these stages are not absolutes and there are exceptions to them, (2) ages given are approximate, (3) resolution of psychosocial crises is a gradual and often intermittent process, (4) to successfully resolve a psychosocial crisis of a particular stage it is necessary to resolve that of the previous stage, (5) some people never move beyond an early stage, and (6) negative resolution in one stage usually results in negative resolutions in subsequent stages.
Developmental Stages/Psychosocial Crises With Notes on Promoting Positive Resolution
Trust vs. mistrust (infant - birth-2 years): Infant needs for food, warmth, nurturing, etc. should be consistently met. The infant is begins to develop an awareness of separation and loss. While maintaining the bond with the person who is terminally ill, ensure that at least one other strong bond is formed and is maintained after the death.
Autonomy vs. shame and doubt (toddler - ages 2-4): The child gradually develops a sense of self-control without shame being used as a means of discipline. Death is viewed as applying to others and as separation like travel, hence temporary and reversible. Terminal illness brings immense conflict between the need for independence and the need to be dependent. Adults should work to recognize and respond to both needs - often moment to moment.
Initiative vs. guilt (early school - ages 5-7): The child develops a sense of mastery and competence. Gender identification begins, and role models are important. There is a growing understanding of death as final and irreversible. Death is viewed subjectively, i.e., others may die, but personally, death is avoidable. Death may be personified with such symbolic representations as angels, the grim reaper, skeletons, and so on. The child's efforts to help in caring for the person who is dying should be accepted with appreciation. Think for a moment before saying "no."
Industry vs. inferiority (mid school - ages 8-12): Staying busy and accomplishing are important. Death is understood as final, universal, personal, and inevitable. There should be reasonable expectations for the child to help - if not in care - then in the home, etc.
Group identity vs. alienation (early adolescence - ages 13-17): These are challenging years under any circumstances. Adolescents are capable of abstract and generalized thinking (interspersed with periods or moments of concrete thinking). Concepts of death deepen and mature; and personal philosophical and/or religious views of life, death, and meaning develop. Given an opportunity to participate meaningfully in caring for a terminally ill family member, most teenagers make a significant contribution to the care and their own development. Finding a balance between family and teen peer group and dating needs is difficult. Help in dealing with emotional pain related to dying and death may help prevent destructive behavior now or later. Writing poetry or other forms of writing or art can be very helpful in teens expressing and dealing with emotional pain.
Individual identity vs. role diffusion (late adolescence - ages 18-22): Important life choices are made during this time; some may be delayed by the terminal situation. The situation may ultimately result in better choices being made. Independence is a major issue.
Intimacy vs. isolation (young adult - ages 23-30) The intimacy of this stage is with a spouse or in a similar relationship. A lasting primary or sole focus on the family of origin may result in isolation for the young adult.
Regardless of developmental stage, children benefit from closeness and honest communication - especially with parents. Although older children are often unwilling to be physically close (holding hands, hugging, and so on), there still is a need to be close. Honesty is essential. Children are always "reading" parental behavior and responses, and it will be clear from the beginning of the illness that something is seriously wrong. Trying to hide serious matters from a child only produces anxiety and no benefit for the child. It is not uncommon for children to support parental attempts to hide the truth by hiding their own anxiety and fear - for the parent's benefit. What a burden for a child!
Factors other than developmental issues play important and sometimes dominant roles in how children view and react to dying and death. Life experiences or circumstances may mean that a child has extensive or no experience in life and death issues. The death of a pet or other losses may have profound impact on how a child approaches dying and death.
The emotional and social bond with the person who is dying (and those who love that person) is certainly important. The presence or absence of strong social networks and support can mean the opportunity (or its lack) to experience support, companionship, and the means by which feelings and fears can be explored. Gender often affects the ability to express and explore feelings, with girls tending to express and explore more than boys. Whether the death was a surprise or expected, the degree of suffering, and the extent and nature of the child's involvement in the dying process all affect how a child views and responds to the situation.
How to Tell a Child that a Loved One is Terminally Ill; Talking About Dying and Death
It is difficult to tell a child that a loved one is terminally ill, but even more difficult to later on tell the child that the death occurred - especially if the child was unprepared. For obvious reasons most parents would rather avoid than deal with this issue. Since a sudden, unexpected death is usually more traumatic than an expected death, parents are to some extent, forced to deal with the issue.
In most cases, it is best to simply sit down with the child and tell him or her in terms that are understandable to that particular child first that there is some bad news, second what is expected to happen in general terms, and third, who will stay with the child and other key reassurances. It is necessary to later determine what the child understands - several times. The reasons for giving the information in this manner are as follows:
Talking about dying and death is guided in large part by the last two principles given above: reassurance and ongoing interactions. Dying and death bring into focus a great (and often unvoiced) fear of most children: abandonment by parent(s). A fundamental characteristic of children is self-centeredness, and thus the impending death of a parent is seen in large part as abandonment. This is not a character or moral deficit; it is the way children, and to some extent adults, perceive life. Reassurance that Mommy or Daddy (whoever is not terminally ill) will not leave may not be greeted with visible relief. Indeed, the fear of abandonment may be so deep and powerful that acknowledging it may be beyond the child's capability.
Interactions about dying and death tend to stretch across time because children usually are able to deal with only a little information at one time. When they reach their limit they may signal by anxiety or inattention. Once attention is lost, further attempts to address the issue are usually futile. Especially with smaller children, it is often helpful to use means other than conversation to deal with dying and death.
In most cases it is to the child's advantage if he or she is attending worship. While religion may not provide all the answers or the answers for which a person - child or adult - is looking, it does provide at least some of the answers. Religion also tells the child that there is something more and greater than what is happening at the moment.
It is essential to remember that understanding and coming to terms with terminal illness is a process that can only occur at the child's pace. Misunderstanding is inevitable and frequent clarification of the child's understanding is necessary. Realistic reassurance is important in all cases.
How to Support a Child in Grief
Children grieve deep and hard - but do not necessarily express the grief like adults. Children may have the same sense of unreality; feel the same sadness, the same despair, the same guilt, the same ambivalence; have the same abdominal pain, shortness of breath, trouble sleeping - but they go quietly to their rooms, or play, or become "behavior problems," "act out," "develop problems in school, or in some other way, live and struggle with the grief.
| In many ways, grief seems to be adult territory. Sometimes children must traverse this lonely place, more alone, it seems, than adults. |
Too often, we (adults) devalue a child's experience and feelings - "She's only four, she doesn't really understand" . . . "He's only six, he'll get over it." To help a child who is grieving, it is essential to view the child's experience and feelings with at least the same respect as an adult's experience and feelings. The four year old who loses a loved one does not understand the loss in the same way a forty year old would; but she understands something very bad happened, and although unable to articulate it, eventually understands that the loss is lasting. The six year who loses a loved one will seem to "get over it" relatively quickly. He is likely to be playing shortly after the death and is unlikely to bring up the loss to others very often. That is what children do. Adults go back to work and children go back to play and they both are not "over it."
One of the greatest obstacles in adults communicating with children about dying, death, or grief is the adult inclination to give answers and want to make things better. Thus the focus is often on the adult being an adult and wiser than the child rather than on the child's experience and feelings. Of course there is no wisdom in this, only a desire to play a role - and it is unhelpful.
Another obstacle for adults is that (younger) children may ask the same question over and over again. Repetition is a clue that the issue is (1) important and (2) difficult to deal with. The best way to address repetition is to give clear, simple concrete explanations over and over. There may even be elements of the child trying to make connection with the adult via these questions.
The greatest help to most children in most circumstances for a loved one to stay with or near the child in a consistent and companionable manner. Consistency is critical, so if there is to be a regular Saturday morning mutual activity, for example, it should every Saturday morning. The child is free to play or participate in an activity, and in that context, may or may not bring up concerns. That a child does not bring up concerns or pain is not a problem. The focus here is on the companionship or presence that simply is, and does not demand.
It is also helpful to share briefly one's own feelings or experiences in relation to the situation - again, not from a role of "wisdom," but simply as an expression of self, e.g., "I've cried every night since he died." Expressing one's own feelings is not a technique to elicit the same from a child. It is the means by which one makes contact. In this and all related matters it is necessary to be honest.
Many children, especially older or teens, need some degree of solitude. Sometimes the need is related to escape from solicitude or attempts to cheer, and sometimes it simply is time to be alone.
When a close relative dies, children should attend the funeral. Sometimes it seems like it would be better for a child to not attend. Funerals are usually difficult for children to endure. But, like so much else in terminal illness, there is not a choice between something good and something bad; only a choice between something hard and something still harder. In almost every case, the child has no later regrets about going to the funeral: Participation is better than exclusion. It is helpful to explain to the child what will happen at the funeral.
There are times when a parent is too deep in her or his own grief to be helpful to a child. The role of giving support may then be given to a close relative or friend who can guide the child through the funeral.
After a loved one dies, children place enormous importance on keepsakes or other symbolic representations of the person who died. Adults should respect the value placed by the child on the object or representation.
School, church, or other support systems should usually be involved in support of the child (but often are not). Most children do not want to be treated differently or receive excessive sympathy after a loved one dies. Sensitive teachers or clergy can offer discrete, non-intrusive support. Others should know of the death, but wholesale class announcements should be discouraged. Generally, the children with whom the bereaved child plays or who might be most supportive are the ones to tell either directly or through their parents. Sometimes other parents need help in understanding that they are not required to do anything other than continue to have the bereaved child over to play and otherwise carry on. A relative or other person close to the child should intercede with other adults and sometimes children. This is not the time to develop independence.
Whether in a child or adult, grief lasts a long time. The need is not for answers or everything to be fine. The need is for presence and support.
Authors: Charles Kemp & Stephanie Allen
References
Backer, B.A., Hannon, N., and Russell, N.A. (1994). Death and Dying: Understanding and Care (2nd Edition). Albany: Delmar.
Newman, B.M., and Newman, P.R. (1975). Development Through Life: A Psychosocial Approach. Homewood, Illinois: The Dorsey Press.
Silverman, P.R. and Worden, J.W. (1992). Children's reactions in the early months after the death of a parent. American Journal of Orthopsychiatry. 62(1), 93-104.
Gibbons, M.B. (1992). A child dies, a child survives: The impact of sibling loss. Journal of Pediatric Health Care. 6(2), 65-72.