8 - Psychological impact of life-limiting conditions on the child
Editors: Goldman, Ann; Hain, Richard; Liben, Stephen
Title: Oxford Textbook of Palliative Care for Children, 1st Edition
Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)
> Table of Contents > Section 2 - Child and family care > 7 - Children's views of death
7
Children's views of death
Myra Bluebond-Langner
Amy DeCicco
Introduction
Did you ever think when a hearse goes by that you may be the next to die? They wrap you up in a big white sheet and then they bury you ten feet deep. The worms crawl in and the worms crawl out. They chew at your gizzard and spit it out. And then you turn a vomit green and the pus rushes out like sour cream. [Children's street rhyme portions dating back to the 18th century].
Death, like sex, is a topic which adults find difficult to discuss with children. Talking about it seems to them to be a painful, confusing intrusion into a child's world. This assumes that death is foreign to a child's usual thoughts, that it is distressing for a child to even consider, and that it is difficult for him/her to grasp. Ideally, thoughts and talk about death should wait for a time of more maturity, both emotional and cognitive.
As we all know, discussions of death are usually forced upon us by the death of a pet, relative, close friend, or even the impending death of the child himself/herself. This leads us to ask whether adult reservations about discussing death with children are well founded. What should we say? What can they understand?
In this chapter, we consider what needs to be taken into account in assessing children's understanding of death, and suggest guidelines for talking to well and ill children about their own dying and the deaths of others. We begin with a review of the literature on well children's views of death and then move into a discussion of terminally ill children's views of death, followed by a brief presentation of the thoughts of well siblings of children with life-threatening and fatal illnesses and how they communicate with their ill siblings.
Children's views of death
The literature on children's views of death is dominated by a developmental perspective, which focuses on the emergence of a mature concept of death. Scholars have differed about the particular age or stage when a particular view emerges, and about the prevalence of particulars views at a given age or stage (see Table 7.1). But, prevalent throughout developmental work is the assumption that at points in the maturation process the child casts aside immature notions for the elements of the adult or mature concept of death (see Chart 1). According to developmental thinking, there are five essential components to a mature concept of death: non-functionality (all life functions cease at death); irreversibility (being cannot come alive again); universality (all persons, indeed, all living things, die); causality (causes of death); personal mortality (the individual himself/herself will die) [18]. As children grow up, then, their view of death changes from that of death as a reversible occurrence, not unlike sleep or being transported to a different place, to a view of death as an irreversible and universal event, a consequence of physiological process, aging and disease, something that befalls everyone including oneself. Mature views feature scientific notions and immature ones draw upon fantasy.
In the developmental model, then, the child's understanding of death is seen in terms of a linear process of development linked to age and a definite endpoint. The essential components of the endpoint concept are of a cognitive sort and a particular one at that what Klatt [19] calls a biologized concept of death. In the age-graded developmental approach not enough attention is given to experience social, cultural or personal or to emotional factors like anxiety, and how these impact a person's understanding of death and the meaning death has for them.
Our own view is that people's views of death do not lie neatly on a progression. Young children can show sophisticated understanding of death and adults do not necessarily abandon what developmental researchers regard as childish notions. Research from both developmental and a non-developmental perspective supports this. For example, Candy-Gibbs, Sharp and Petrun [20] did not find correlations between age and concepts of irreversibility. Atwood [21] found that while a majority of kindergartners studied
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Table 7.1 Children's views of death:Developmental perspectives | ||||||||||||||||||||||||||||
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acknowledged that they could die, the sixth-graders did not (reversing the prediction of developmentalism).
Looking at studies of adult views of death, Kastenbaum and Aisenberg [22] reported that adult descriptions of death are replete with macabre images. Personifications of death (a view of death associated with school-age children) as gentle comforter, gay deceiver, grim reaper, wrinkled old woman are not uncommon all conceptions associated with a not fully mature view of death. Kubler-Ross's [23] work with terminally ill adults is also relevant in this respect. She demonstrated that
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even among patients who were able to conceive of themselves as dying, there was a preoccupation with death as the ultimate separation, and a tendency to portray themselves as going on to another life after death. Patients painted themselves in scenes where God takes them into the splendor of heaven. These are views that, in the context of the age-graded, developmental model of concepts of death, are associated with young children at very early stages of cognitive development.
Studies of children's views of death that attend to factors such as children's religious and cultural background, as well as the children's own personal experiences with death and dying, raise serious questions about the saliency, and in some cases even the relevancy, of age in assessing a child's view of death [22, 24, 25, 26].
Candy-Gibbs et al's [20] study of 114 white children of ages from 5 to 9, from middle income families, found that age was not a significant factor in children's views of the irreversibility and finality of death. 50% of the children who attended Baptist schools held a view of death that included an afterlife. 81% of the Unitarian children saw death as complete, final and irreversible. Religious background also played a role in the children's views of the causes of death. Baptist children saw death as stemming from external catastrophic events. Unitarian children saw death as stemming from internal natural causes.
Also relevant with regard to religion and religious instruction is a study by Anthony and Bhana [27], cited by Kenyon in her extensive review of the literature on children's views of death, where despite clearly understanding most of the components of death by 6 years of age, religious teachings were reflected in Muslim girls' assertions at all ages, that death was reversible and the dead could return to life . [18]
In Bluebond-Langner's study of religious and ethnic differences in American children's views of death, she and her students found that Jewish American children saw death as the result of natural or medical events, whereas Baptist African-American children and Catholic Hispanic children saw death as the result of catastrophic accidents and violence [28]. April Zweig [29], in a study comparing 10- and 11-year-old African-American children from a poor area of Chicago with Jewish American children of the same ages from a middle class area, found that African-American children usually attributed death to an outside force, usually violent, whereas Jewish American children saw it as a result of a medical or natural event. Unlike the Jewish American children, the African-American children also personified death and did not see death as final. And with a focus on ethnicity, Brent et al [30] found a better understanding of irreversibility and non-functionality in the Chinese children (ages 3 17) than in American children. In short, these are not differences of maturity.
The salience of factors other than age or stage of development in a child's conceptualization of death is given further credence when one considers the findings of those who have studied and compared children from cultures and societies outside the United States with those within the United States. For example, Schonfield and Smilansky [31] found that second grade children in Israel were clearer about finality and irreversibility than second graders in the US. However, the American children were more likely to see death as universal all living things will die. Schonfield and Smilansky attribute the difference to the children's experiences. The Israeli children are living in the context of war, where they are regularly exposed to the finality of death, and where adults try to comfort children (many of whom have fathers and siblings in the military) by telling them that not everyone dies.
In assessing a child's view of death, one must also consider how the child's view was elicited, by whom and in what context. Some of the contradictions in the literature may be attributable to the variety of methods of study open-ended interviews, questionnaires, story completions, analysis of drawings. But this still doesn't explain the variations that occur even when a single method is used. For example, in Carol Irizarry-Hobson's study [32] of the views of death of children who experienced the death of a grandparent, she found that what the children told or asked their parents with regard to their grandparent's death was different from what they told her. Further, the less mature view came through with their parents and the mature view with the researcher. For example, one 7 year-old asked his mother when they were packing for a vacation, six months after his grandfather had died, if he would see his grandfather. He also told the researcher, quite clearly, that dead is dead, you don't come back. Or take the 8 year-old who asked her mother if her grandfather had socks in the grave to keep him warm; she gave the researcher a lengthy account of her grandfather's death from a heart attack.1
Just as the child's presentation may be affected by who he/she is talking to, so too it may be affected by whether one is asking about death in some abstract sense, or with regard to a stranger, or a family member. For example, Orbach et al [33] asked children of ages 6 11 to answer questions about death, in terms of people they knew, and in terms of strangers. Orbach et al [33] concluded that the stress and other emotional issues that revolve around thoughts of the death of a loved one distorted the children's actual conceptions of death such that children's concept of death when referenced to loved ones was less developed than that referenced to strangers.
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A child's response may also be limited by his verbal ability. He may understand more than he can articulate or explain. Consider how the toddler can follow multi-step directions, but cannot necessarily give multi-step directions. Toddlers and young children are exposed to death (for example, dead animals, sometimes even human individuals) before they can talk about their experiences in any detailed way. Yet, we know from their non-verbal responses that they respond to the experience [22, 34].
In sum, as Koocher states [24], The child's comprehension of death is a complex phenomenon mediated by his own cognitive capabilities, personal experiences, cultural background, and emotional reactivity. Their presentation of their views requires consideration of these factors as well as the context of the discussion about death who the child is speaking with, where the conversation takes place, as well as how the issue is put forward.
Terminally ill children and death
The need to look beyond an age-graded, developmental model for explanations of children's views of death was dramatically demonstrated for Bluebond-Langner [25] in her research with terminally ill children, when she found that age was not at all predictive of the children's views of death, their awareness of their condition, or the ways in which they communicated that awareness. For example, the 5 year-old concerned with separation who talked about worms eating him, and who refused to play with the toys from deceased children, was the same 5 year-old who knew that the drugs had run out and demanded that time not be wasted. So, too, the 9 year-old who drew pictures of herself on blood red crosses and knew that the medication was damaging her liver she was the same 9 year-old who never mentioned the names of deceased children, and could not bear to have her mother leave her for a moment.
In each of these children we find views that are expected for their age, as well as views one would not expect from children of that age. Yes, to hear a 5 year-old speak about worms eating him, and being concerned about separation, is predictable from the developmental perspective. But discussion of drugs running out is something that, according to these models, would not occur until much later, in middle childhood. Similarly, that a 9 year-old girl could state that drugs were damaging her liver is not terribly surprising, but a taboo on names of deceased children is more problematic in terms of the development model. In short, in both children all of the elements of a mature view of death are there, as well as elements on an immature view.
What is going on here? Why these contradictions? Have these children both gained in wisdom and regressed? We would suggest that children, like adults, are capable of simultaneously holding several views of death, even seemingly contradictory ones. The particular view that comes out at any one point in time reflects the child's concerns, thoughts, and feelings, not to mention the person the child is speaking to at that point in time.
Of primary concern to terminally ill children is separation: leaving everything and everyone behind. At the same time, they seek to protect those they care about often their siblings, particularly their parents. For example, Jeffrey was a boy who often yelled at his mother. When asked why he simply replied, Then she won't miss me when I'm gone. When Bluebond-Langner asked Jeffrey's mother, Why does Jeffrey yell at you so much? She replied, He knows when I can't take it in that room anymore. He knows that if he yells at me I'll leave. He also knows I'll come back [25]. Displays of anger, banal chitchat, and silence were all distancing strategies, if you will, or, as some staff saw them, rehearsals for the final separation. As folks at St. Christopher's Hospice say, Withdrawal is not necessarily a hostile act . They also were a part of mutual pretense.2
As noted above, death as a separate personality is often present in both adults' and terminally ill children's views. Bluebond-Langner [25] found that the tendency to view death as a separate personality, or more commonly, to identify death with the dead, was notable among the ill children in two significant ways. First, it was through the death of a peer that the children internalized the terminal nature of their illness, which they would then present in conversation through comparisons of the deceased with themselves.
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Benjamin went through this conversation with everyone he saw that day. When asked why, he responded, I want to know who my friends are.
Second, the identification of death with the dead was apparent in their reluctance to mention the names of deceased children, or to play with toys brought by the deceased's parents, or purchased in the child's memory as if death were somehow contagious. These magical fantasy views may be
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coupled with very real scientific views of death, as Tom's conversation with a nurse so dramatically illustrates.
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In this conversation, we see a notion of death as the time when the drugs (chemotherapies) would run out. Following this interchange, his conversations about drugs and their side effects diminished. The drugs were not the answer that he and his parents once thought them to be. As with other children aware of the prognosis, he made little reference to his condition or progress. What was there to say? There were only indications of further deterioration and closeness to death. For these children, death is the result of a biological and inevitable process marked by steady deterioration. I just get weaker and weaker and soon I won't even be able to walk.
With dying comes a loss of identity. Children with life-threatening and life-shortening illnesses feel that they are not like other children. For example, Bluebond-Langer [25] noted that the children whom she studied spoke of not getting braces, clothes to grow into, or going to school. What is the identifying marker of childhood if not becoming? Looked at another way, to say these things meant that they knew that they had no future, that death is final. Death marks the end, the future is cut off. They did not mention what they would be when they grew up, and some became angry if others did.
One child who, when first diagnosed, said that he wanted to be a doctor, became angry with his doctor when she tried to get him to submit to a procedure with, I thought you would understand, Sandy. You told me once you wanted to be a doctor. He screamed back at her, I'm not going to be anything, and then threw an empty syringe at her. She said, OK, Sandy. The nurse standing nearby said, What are you going to be? A ghost, said Sandy and turned over [25].
To these children, closeness to death also meant no future; consequently, conversations about the future declined noticeably. The future was limited to the next holiday or occasion. The children knew that holidays and events had a new significance for parents as well. Children would often talk about the way that holidays used to be celebrated and the way in which it was celebrated now that they were ill.
At the same time, the children also tried to rush these holidays or occasions, to bring them closer to the present. For example, one child asked for his Christmas presents in October; another wanted to buy a winter coat in July. In June, several children asked the physicians if they could go back to school in September.
Even doctors who doubted that a young child could know the prognosis without being told regarded these actions as indications that the child was suspicious, and perhaps even probing for how much longer he or she had to live. The child's lack of interest in future plans does not reflect a lack of interest in the passing of time.
Children with chronic life-shortening illnesses are very much concerned about the time that they have left, often pushing themselves to get things done. Bluebond-Langner [25] reported how some became angry when people took too long to remember things, or to answer questions, or to bring things to them. The parents and staff often commented on such behavior. As one staff member commented, They demand because they know time is short. It's as if they know that if they wait too long, they might be dead by then. They're not just being difficult, the staff person included, Those children know something.3
Some children verbalized their fear of wasting time directly with phrases like, Don't waste time, or We can't waste time. The staff often noted the activity and urgency that followed the death of a peer [25].
Time takes on meaning not usually found in young children. These children are having their time cut short, and they know it. Death and disease are constants in their lives. Images of death and disease fill disease related as well as non-disease-related play and conversations.
Well siblings' views of illness and death
Bluebond-Langner [25] found that death and disease are also constants in the lives of the well siblings of children with chronic, life-threatening illnesses.4 Their thoughts about the incurability of the disease reach a peak when the complications of the disease (for example, refractory infections, intermittent use of oxygen, development of Burkholderia cepacia, onset of diabetes). At this time the well siblings start to view cystic fibrosis (CF) as a chronic, progressive, incurable disease that shortens the life span.
But I still get worried about my sister. I just know that with CF you could die from it and you get all skinny, and your lungs fill up with mucus, and you can't breath, and you die [35].
Acknowledging a shortened lifespan or a terminal prognosis for persons with CF does not necessarily mean acknowledging
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that one's own sibling will die at an early age from CF. While well siblings may glibly link incurable and terminal, they do not necessarily internalize it as an outcome for their own brother or sister, at least not in the near future. There is an attempt to distance oneself, one's sibling from the imminence, if not the eventuality of death.
The well siblings' views are sprinkled with conditions and qualifiers.
It's one of the deadliest diseases. You are in the hospital a lot. Your chances of surviving are almost zero. That's a lot, really scary [35].
The disease is a despised enemy to be fought.
My sister has cystic fibrosis and I hate it. I wish there was a miracle; that they could have a medicine for cystic fibrosis [35].
In their eyes, there is still room to do things. As a well sibling, whose sister now required oxygen during hospitalization, said, There are still things they can do. I'd worry with the oxygen and all, but I know Andrea's a fighter. (N.B. The use of oxygen is a highly charged issue for families. Siblings and parents often refer to the use of oxygen as a turning point. )
Increased deterioration
In the face of still further and increased deterioration, well siblings find it increasingly difficult to separate the disease and its sequelae from what will happen to my brother or my sister.
She acts like she's gonna grow old some day, and have a real nice car and stuff. (Pause) It would be nice, but sounds impossible. Everybody never makes it, (pause) that far. All of her friends die. She thinks that maybe she'll beat it. I don't, but it's hard to say. Maybe she'll beat it [35].
As the deterioration becomes more marked with the patient more oxygen dependent, activities more restricted, and thought given to the insertion of central lines, many well siblings come to see CF as a chronic, progressive, incurable disease that will claim the life of their own sibling in the near future. There is a quality of hopelessness in their statements. Gone are the conditional tense (for example, could die ), the use of qualifiers, (for example, chances of survival are almost zero ), the possibility of controlling the disease, the hope for a cure.
They express their views of CF and their sibling's condition in short, declarative statements.
I know they're not going to find a cure. With the lungs filling up you die. Everybody never makes it. All of her friends die. She'll never be O.K. She's got cystic fibrosis. She'll never be O.K. There's no cure for her [35].
There is no doubt about the finality of death, not to mention the cause. As one well brother explained, My mom always asks me how come I never go down to the hospital to see them [his siblings who have CF]. I don't want to go to the hospital. I don't want to go down there and see them in the hospital. Not the fact that I don't want to go see them; it's just that I know what's going to happen. You know it's inevitable. You know the progression of the disease will get worse. That's inevitable.
Awareness of the imminence of death comes in the terminal phase of the illness. For some well siblings, the awareness is there earlier than it is for others, as illustrated in this conversation between two well sisters of a recently deceased brother.
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Without speaking, they could maintain distance from the imminence, if not the eventuality, of death. As Roberta continued, I was afraid to talk to him because I didn't want him to tell me that he was dying. I didn't want to talk to him because of that. So I would go in and he'd be in his room, on oxygen and I would talk to him, but I would never; you know, I didn't want it to get to the point where he would start telling me, You know it's going to be over soon.
Much as they might want to or even try to avoid the finality of death and its frank irreversibility, they knew otherwise, as is evident in this mother's recollections. Even when Ethan died, Ian [well brother] knelt by the bed and said, He isn't dead. He knelt by the bed and said, See, he's still here. Ian would come home everyday after school and say how much better Ethan looked. He'd go, See how much better he is. I had to shake him and say, He isn't going to get better. But he knew that. His teacher told me he knew.
Communication
For both well siblings and children with chronic life-threatening illness, communicating with each other as well as with their parents about the illness and death is problematic throughout the course of the illness. Conversation about the illness and death is often shrouded in mutual pretense.
In the practice of mutual pretense, each party knows what is happening, but neither wishes to speak or acknowledge it to the other. As outlined by Glaser and Strauss [36], in the context of mutual pretense: dangerous topics are avoided; safe topics dominate the conversation; individuals provide a way for the other party to leave the conversation if it appears that they will break down and the pretense get shattered. Behaviors such as avoiding discussion of the future, display of anger,
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withdrawal, and banal chitchat so that people will have an excuse for leaving reflect adherence to these rules.
The reasons for the practice of mutual pretense are many, but in case of well and ill siblings, two reasons are primary. First, mutual pretense is in part a means to avoid having to confirm, in no uncertain terms, one's certain knowledge that the disease is terminal, and all that having that knowledge brings in its wake. As one adolescent with CF explained, It's hard to talk about, to even think about Sid and the others who have died, and still keep doing what you to. And then if you did as much as they wanted you to do, you wouldn't have much of a life in the outside world, which they want you to do too?
Talking about another's deterioration or death, not to mention one's own, especially when one is beginning to experience some of the complications of the disease, brings the prognosis, of which people with CF are well aware, to the forefront of their minds, where they would rather not have it.
Confirmation is not desired by well siblings, either. One well brother summarized the feelings of many when he said, with regard to not wanting to talk to his mother about his sister's condition, We don't talk about it. I try to stay away from it, because I don't like to hear it. I already know for a fact what's going on. I know as much as I need to know. I don't care to hear anymore about it. If they come up with a cure that's great. Then I won't have to worry about it all. But they haven't, so we don't talk about it.
To receive confirmation of their sibling's fate and then to talk about it raises a host of problems for well siblings, not least among them the ability to ask for and make demands directly.
Well siblings aware of the chronic, progressive, incurable nature of the disease, not to mention their parents' binds, feel less justified, less able to make some of the demands that they had made earlier in the course of the illness. For example,
The girls [sisters who have CF] are angels, you know, as far as my mom's concerned. And, I'm always spiteful of them. I mean, Aw, come on. How come they get so much and we [well brothers] You know, like they're going to the shore and stuff. But I'm only saying that because, you know, in a joking manner. You know, I realize what the situation is. How, you know, the disease works and everything. So, I know, she's [mother] just trying to spend as much time with them as she can to make them happy, to keep it out of their minds, you know. It doesn't bother me that much. Every once in a while it will build up and be a big explosion. [35]
A second reason for the emergence of mutual pretense is concern about the impact of such a conversation on the other persons in the interaction: Will they be upset? Will they never want to speak with them again? Will they then even avoid them? As one ill child, in discussing why she didn't talk to her well brother about her condition, remarked,
He worries a lot. He worries about me mostly. I don't know why. Sometimes he talks to me about what he worries about. Sometimes. I wouldn't say much because he doesn't want me to know. He just, well, I can hear it on the phone that he is [worried]. [35]
Well siblings are similarly concerned. As one well sibling said, I don't think I'd be able to talk about it. I might say something that would get her mad or upset. I'm really scared about what her reactions will be. Maybe something would come up that my parents don't want her to know. I don't want to tell [what I know] because I don't know what is going to happen. I don't know how she is going to react. I don't know if she's just going to say, Well, when it happens, or if she's going to start crying or something like that.
Siblings' reluctance to speak often occurs with full recognition that the ill sibling not only knows the prognosis, but also knows that people are not willing to talk about it. As one 12 year-old sister commented, I think she sort of feels out in the cold about that we know more about it that what we're telling her. I think she knows, from the people that we have known, who have had CF and died. We haven't said that kid had cystic fibrosis, or anything like that. We sort of say it's a shame and leave it at that. We don't really tell her. But she knew one [who died] and that he had treatment like her.
The struggle over what to say, let alone what to do, remains problematic right up to the moment of death, as seen in this conversation between two sisters recalling the time of their brother's death.
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Guidelines for talking to children about death
Assessment of children's understandings of death, and illness for that matter, must proceed with an awareness of the social, cultural, and emotional factors that are in operation whenever the subject of death or dying is before the child. We must look beyond age and verbal presentations for indications of the child's conception of death and his understanding of chronic, life-threatening illness. In general, we would do better not to look at the concept of the disease or death as fixed, but rather as fluid, in process, and as such, subject to change. From this perspective, several specific suggestions for talking to children about illness and death emerge.
Above all, listen to the child. Take your cues from the child. As you listen as well as when you speak, bear in mind the following: (1) the child has the ability to learn about illness whether or not we choose to tell him; (2) children have fluctuating needs and desires at different points in their illnesses; (3) children can simultaneously hold magical as well as scientific views of death; (4) and most of all, children desire to keep those they care about around them a desire which leads them to follow the rules we set up. Children are wilful, purposeful, capable individuals aware of their own needs as well as those of others. If the child senses that an individual is uncomfortable talking about death and illness, chances are that he will not pursue the discussion.
The issue is not to tell or not to tell , but rather what to tell, when to tell and who should do the telling. Children want to know about illness and death, and will try to figure it out regardless of what we say or do not say. Bluebond-Langner [25] found that all of the ill children whom she studied became aware that they would die, regardless of whether or not they were told. Misinformation is always around, and wrong conclusions are all too easy to draw. Silence teaches that death is taboo, dangerous, and too difficult even for adults to handle. In framing your response to the child's questions, do not simply be guided by the child's age. Very young children can understand or at least have feelings about what it means to die. Bowlby [34] found that very young children can experience a deep sense of loss and mourn. As noted earlier in the chapter, children are capable of talking and thinking about illness in rather sophisticated terms.
Children share different kinds of information with different people at different times. For example, what children say to the minister about death is different from what they want to talk about with the physician, or with their parents. Children may share feelings with friends or teachers, and not with parents, lest they upset them. Discussions about illness and death may proceed rather differently when the child feels the parent wishes to pursue further treatment, but the child does not [37].
Similarly, parents may not wish to discuss various aspects of proposed treatment or death with their child, or have anyone else do it, for that matter. In such situations, it is extraordinarily important, as well as beneficial, for the physician to pursue with the parents why they do not want particular information shared with the child. Bluebond Langner, Belasco, and Goldman found that in talking with parents about what they don't want the child to know, the physician also became aware of misunderstandings about various care and treatment options, such as prognosis or other issues in the family that may be affecting choice of care [37]. Continued discussions with parents about what they do not want discussed with their child is an opportunity not to be missed.
The physician should open the dialogue with the parents by acknowledging that he/she understands where they are coming from. In the course of conversation, the physician might note that from his/her experience the child knows the likely outcome. The physician might give some examples of the ways in which children indicate their desire to know more from their parents, as well as the cues that children give to indicate what they know, and their desire for more information. He/she might ask the parents what they are most afraid of, if the topic of dying or the efficacy of other treatment alternatives came up. The physician might suggest that perhaps further discussion with the child, either with them present, or with the physician alone, would be helpful for all of them if not straightaway, then perhaps in the future.
The parents may continue to refuse to have discussions with the child about particular issues, or to even allow the physician to have discussions with the child that would broach, for example, the child's prognosis, side effects or efficacy of various types of treatment. However, the groundwork has been laid for further discussions, and insights have been gained that will serve the physician well in other situations as they arise with the parents and their child.
In discussing illness-related issues with children, remember that what is going on in the child's mind is not always the same as what comes out of his mouth. Children can understand or know more than verbal statements indicate. Tell the child what he wants to know and can understand, in his terms. Use terminology and approaches that the child can understand. Sometimes, it is helpful to ask the child to repeat back what you have said. One can check the child's understanding through statements like, Now if you were the doctor, how would you explain this ?
Remember that the child's questions are not necessarily yours; his needs are not your needs. Children want to know
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different things at different times. It takes a long time before children with life-threatening illness or their siblings see the illness as life-shortening, let alone see themselves or their sibling as terminally ill. For this reason it is helpful to elicit as much information as possible about the child's understanding of the disease, and his perception of his condition, before responding to a child's question. For example, embedded in a question, How does the chemotherapy work? may be a desire to know not just how the drug attacks various cells or what the side effects will be, but also the proposed efficacy of the treatment. It is important to be concrete when talking to children. Diagrams and pictures are often helpful. For example, draw pictures of body parts in question lungs, cells, or tumor.
A child's way of expressing loss may be quite different from adults, and from what we would expect. For example, when her brother died, one well sibling said, Good, now I can have all his toys. Obviously, there was more there than the statement would suggest. Children can be sad one minute and out playing the next that doesn't mean the child doesn't hurt or doesn't need someone to talk to. We must keep in mind that children are often frightened by adult displays of grief and need reassurance. As dialogue proceeds, try to elicit the child's concerns so that you know what is on his mind.
Children may ask questions that we see as obvious, or in some cases even offensive. For example, Well, how did they know Grandpa was really dead? and, When will you die? Some children have a real passion for gory, macabre details. Watch children at a wake given the opportunity, they might touch the corpse, ask about embalming not necessarily behavior adults would engage in.
Remember that one conversation is not enough. The desire of a child, whether well or ill, to talk about death does not necessarily go away after one discussion. There will be different questions and concerns in the face of different experiences. As various new experiences are processed, the issues that they raise need to be addressed.
Be honest do not say to a child what you do not believe. This does not mean, however that one needs to be brutal! It is important to reassure the child that he is loved and will be cared for, not abandoned.
Finally, all children will at some point face loss and will grieve. We do not have to, nor should we even try to, fix a child's grief. It is the child's alone, he owns it and must work though it. But children need not and should not do it alone. Let us offer children our support and encouragement in a way that respects their awareness of the situation in which they find themselves.
Notes
1 The need to look at context in assessing child's view is further explored in succeeding sections on ill children and their siblings.
2 For further discussion of mutual pretense particularly with regard to ill children and their parents see Bluebond-Langner 1978. See Section IV for discussion of mutual pretense among ill and well siblings.
3 For example, Mary was a demanding child who never said anything directly about her prognosis. When she died, a list of all the children who had died, and under what circumstances, was found in a bureau drawer along, with a list of whom she wanted to receive particular belongings.
4 For a full discussion of the well sibling's views of the ill child's condition, prognosis and death over the course of the illness, see Bluebond-Langner 1996.
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