3 Children’s Voices
The Experience of Patients and Their Siblings
Anna C. Muriel, Abby R. Rosenberg, and Barbara M. Sourkes
Life is so strange. Sometimes you feel it’s like a book with chapters to fill, never ending.
Sometimes it’s like a chess game where you have to make each move so carefully.
Other times it’s like a mystery where each hidden chamber reveals its secrets. It is even a war, where to live it is to win it.1(p. 131)
karen beth josephson, age 10
It’s no privilege having someone with cancer in your family. Of all the things I ever could have chosen, having my brother get cancer is not one of them.2(p. 38)
8-year-old sibling
Children with serious chronic illness experience high burdens of symptoms which can only be identified by asking. For example, physical symptoms like fatigue, pain, shortness of breath, and nausea, and emotional symptoms like anxiety, sadness, and irritability are common in children with medical illness. Poorly managed symptoms affect quality of life, satisfaction with care, and parent and family well-being both during the child’s illness experience and thereafter.3,4,5,6,7 Furthermore, the utility of colloquial questions like “how are you feeling” is limited; the answer to this question is not consistently associated with measurable patient- or parent-reported symptom burden.8 Rather, pediatric palliative care clinicians must understand not only the developmental and disease-based communication needs and norms of different patients, but they must also be familiar with various techniques of connecting with patients and assessing their needs.
A few weeks before her death, Evangeline, age 13, spontaneously drew a pot of three flowers: two similar blooms nestled into one another, the other flower of a different kind leaning away. She was an only child who worried about how her parents would manage without her after her death (Figure 3.1). She mused, “What will I call this drawing? ‘Flowers on a Journey’ . . . No . . . ‘Flowers Forever’ . . . No. I think I will call it ‘Magnificent Flower.’ ” She moved away from the title that reflected her vulnerability and instead chose the least-threatening option.
Figure 3.1 Magnificent flower.
While much of our clinical literature and training focuses on the patient, we must not ignore their siblings. Although healthy siblings live the illness experience with the same intensity as the patient and parents, historically, they have stood outside the spotlight of attention and care.9,10 Many of these children demonstrate positive growth in their maturity and empathy. Yet their distress can be significant, including elevated rates of anxiety and depression, symptoms of posttraumatic stress, few peer activities, lower cognitive development scores and school difficulties, diminished parental attention, and overall ratings of a poor quality of life.11,12 Sibling relationships are a crucial axis within the family system, and the children’s mutual caring and devotion can be enhanced rather than overlooked (Figure 3.2).
A group of siblings were asked: “Imagine that you are doing a campaign on behalf of siblings of seriously ill children. Draw a poster to illustrate your cause.” The children drew an ill child in a hospital bed, surrounded by medical equipment, the parents at bedside. No siblings are present. They entitled their poster: “Don’t brothers and sisters count, too??”13 (Figure 3.2).
Figure 3.2 Don’t brothers and sisters count too??
Reprinted with permission from Sourkes B, et al. Food, toys, and love: Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care. 2005;35(9):345–392.
A 6-year-old sibling of a child who had been hospitalized for months spontaneously drew a smiling person—then changed the smile into a downturned mouth and said: “This is me. I am crying because I want my brother to be with me (Figure 3.3).
Figure 3.3 This is me. I am crying because I want my brother to be with me.
Reprinted with permission from Sourkes B, et al. Food, toys, and love: Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care. 2005;35(9):345–392.
In many ways, the patient and his or her siblings live the illness in mirror-image fashion: while the patient endures the physicality of the illness in all its relentless and insistent presence, the siblings are witness to its ravages. All the children must cope with great uncertainty, confronted with the threat, if not the actuality, of premature separation, loss, and death.
Certain psychological themes are universal for both patients and siblings, although the mode of expression will depend on the child’s level of cognitive and emotional development. These factors determine how he or she understands and integrates the illness itself as well as the responses of close family and friends. Also significant is the nature of the illness—its manifestations, its overall time course, and the particular phase at a given time.
This chapter provides a portrait, through the voices of both patients and siblings, of the experience of living with life-threatening illness. The words and images of children are essential touchstones for understanding pediatric palliative care. A conceptual overview of developmental considerations can frame the discussion of selected clinical themes: the impact of the illness itself, the children’s awareness of their condition (or their sibling’s), and anticipatory grief. The experiences of the children in this chapter are universal; however, the degree of openness and candor of their expression is a function of individual and family psychology, cognitive competence, and cultural background. The impact of culture emerges particularly in the discussion of the voice of the child in decision-making. The unique contributions of health professionals who provide mental health interventions such as child psychology, psychiatry, and social work, as well as the contributions of health professionals who provide other therapeutic supportive care, such as child life and art/music therapy, are all part of truly interdisciplinary pediatric palliative care.
Developmental Considerations
Infants and Toddlers (Ages 0–3)
The earliest years are crucial for children’s development of attachment and trust through their relationship to the primary caregiver, often, though not always the mother. At 6 to 12 months of age, infants go through a phase of stranger anxiety, mitigated by the proximity to the primary caregiver. Separation anxiety, which emerges between about 10 and 18 months, is a response to discrepancy: the more regular the presence of the caregiver, the earlier this anxiety manifests. By toddlerhood, the infant “becomes” a child with advances in motor, language, and social development.
The implications of serious illness, hospitalization, and pain for such young patients and siblings are enormous. At a critically formative time, the ill child may be overwhelmed with pain, strange people and situations, and separation. Nursing or feeding in infants is often disrupted, if not precluded. Parents caring for an ill child may be incapable of adapting to the cues of infant siblings. Toddlers, too young to fully comprehend verbal explanations, lack the means to make sense of crisis and unpredictability. Parents of such young children may be young themselves, or first-time parents. They are thrust into the medical world, often without experience of “normal” parenting. Much of the intervention with infants and toddlers (both patients and siblings) is to help the parents reestablish a secure routine and framework to enable the resumption of developmental progress.
Two-year-old Jimmy had been hospitalized for 6 months and had undergone many traumatic medical procedures. He was withdrawn; fearful of noises, sudden movements, and new people who entered his room; and disinterested in food or toys. Prior to his discharge home, the parents requested strategies from the psychologist to “get him back” to his pre-hospitalization level of functioning. Recommendations to the parents included
Preschool Children (Ages 3–5)
Natural egocentricity, magical thinking, and associative logic all characterize preschool children’s thinking. They are therefore prone to interpret illness and suffering in terms of their own thoughts and actions and to have misconceptions about the cause of the illness or the reasons for medical treatment. Temporal coincidences may be interpreted as causal, and they may experience illness or treatment as punishment. While most of these children cannot yet express abstract concepts of time or the permanence of death, they are acutely aware of the emotional climate around them, particularly separation from caregivers and changes in routine.
Young children’s reporting of symptoms is usually situation-specific, and they rarely can report their experience of physical or emotional symptoms over time. Thus, for example, responses about how they feel today as compared with yesterday, or concepts of better or worse may not be accurate indicators. However, these young children can readily express, through words and actions, their fears or dislike of specific sensations and circumstances.
Irritability may be a generalized response to physical discomfort or to the disruptions in routines. The behavior of a child with delays in language or cognitive development may appear particularly regressed and out of control, with disorganized or potentially aggressive responses to distress and frustration.
Similarly, while brothers and sisters may not report their sibling’s symptoms accurately, they often resort to catastrophic images, often involving themselves, to express that something is drastically wrong. Symbolic play, stories, and drawing may be the most accessible expression of their experiences.
Matthew, 4, who was receiving palliative care for a brain tumor, told the psychologist: “I’m not sick anymore” and adamantly denied any discomfort. His response to most queries by his parents or the medical team was “I’m OK” or “I’m fine” even when it was obvious that he was not. In fact, his non- or underreporting of symptoms made it difficult for his mother to administer pain medication effectively. The psychologist introduced Matthew to a rabbit puppet that he promptly named Donald Bunny. She used the puppet to model the reporting of symptoms (e.g., Donald Bunny has a headache, his eyes hurt when it is too bright, etc.). Matthew watched and listened with some interest. The psychologist left the puppet with him. At the next session, his mother said Matthew had begun reporting symptoms attributed “through the voice” of Donald Bunny. He still would not verbally acknowledge that he had any of these problems; however, his drawing of a dark and threatening “batman tunnel” (Figure 3.4 connoted distress and pain and contrasted with his earlier bright image (Figure 3.5). By the next session, while Matthew still would not initially mention any of what had been “bad” during the week, he did allow his mother to list some of his symptoms and would nod affirmatively to them. He then added spontaneously for the first time: “I don’t like when I cough.”14
Figure 3.4 Batman tunnel.
Reprinted with permission from Sourkes B: “Psychological impact of life-limiting conditions on the child.” In Goldman, Haines, Liben, eds., Oxford Textbook of Palliative Care for Children. Oxford University Press, 2006.
Figure 3.5 Untitled early image.
Reprinted with permission from Sourkes B. Psychological impact of life-limiting conditions on the child. In Goldman, Haines, Liben, eds., Oxford Textbook of Palliative Care for Children. Oxford University Press, 2006.
A 3-year-old sibling manifested intense anxiety both at home and at preschool during his sister’s long hospitalization. He drew a picture of the hospital with the following commentary: “A building with only three windows because some fell out and broke on the street. People have to be careful or their toes could get cut off. Nobody is in the hospital—they were all in a meeting. But you were there and were happy to see us and then everyone else came back. I was born and I got poison ivy and I died in the car. My sister was scared” (Figure 3.6).
Figure 3.6 Hospital picture.
School-Age Children (Ages 6–12)
Children in these middle years are ordinarily consumed with mastering skills in a range of physical, intellectual, and social activities. They are invested in fitting in with peers and with the social norms of their immediate community. Children struggling with illness are set apart by physical changes and loss of bodily integrity, absence from their usual activities, and, overwhelmingly, the ramifications of the diagnosis. They may experience the loss of friends and changes in their relationships with family members. Thinking patterns are characterized by relatively concrete cause and effect with an interest in bodily functions and factual information. They have an understanding of the permanence of death and yet may not always integrate that it is universal. There may be less direct expression of emotion and more coping by using cognition, activity, and distraction.
School-age children are aware of the impact of their illness and distress on others and may amplify or minimize their communication based on others’ reactions. These children may not consciously change their behavior or be aware of the interplay between their emotions and their physical experiences. While children in this age group may use words more effectively than younger children, they may also need encouragement and normalization of experiences to freely describe their physical symptoms or emotional experience. Drawing and displacement through play or storytelling may continue to be important methods for expression.
Through a drawing (Figure 3.7), an 8-year-old boy captured the immediacy of his response to the diagnosis of a life-threatening illness: “When I heard that I had leukemia, I turned pale with shock. That’s why I chose yellow—it’s a pale color. Scared is red—for blood. I was scared of needles, of seeing all the doctors, of what was going to happen to me. I was MAD [black] about a lot of things: staying in the hospital, taking medicines, bone marrows, spinal taps, IVs, being awakened in the middle of the night. I was sad [purple] that I didn’t have my toys and that I was missing out on everything. I chose blue for lonely because I was crying about not being at home and not being able to go outside. Green is for hope: getting better, going home, eating food from home, and seeing my friends.” He has articulated the shock; the fear of everything from the concrete medical procedures to the sudden possibility of an altered future (“what was going to happen to me”); the constellation of sadness, grief, and loneliness of separation; and the absence from his normal life. Accompanying all these feelings is a forthright statement of hope.1(p. 31)
Figure 3.7 How I felt when I heard that I had leukemia.
Reprinted and adapted with permission from Sourkes BM. Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. University of Pittsburgh Press, 1996.
Tim, an 11-year-old boy, had struggled with recurrent cancer since the age of 4. He was troubled by insomnia and anxiety during an inpatient stay in isolation for intensive treatment. Upon discharge, he continued to have significant anxiety, avoiding school and playing with friends. His medical team had cleared him for all activity, and he did not report pain or side effects of his medication. Tim had been using escalating doses of benzodiazepines at bedtime, as well as when needed during the day. When interviewed alone by the psychiatrist, he reported feeling “nervous and worried.”
psychiatrist: About what?
tim: About dying.
psychiatrist: Which part?
tim: Just being dead.
When questioned further, Tim articulated specific worries about many issues: dying suddenly while away from his parents; wondering what dying will feel like and what the afterlife holds; not being able to “come back as a ghost” to visit his family if they were to move away from their current house. He denied worry about pain: “I have been sick so long and had lots of pain.” The discussion continued on a spectrum from the current stable status of his illness to his feelings about God and spirituality. Following this session, Tim engaged in the most direct conversation with his medical team ever: about his illness, the stability of his scan results, and the fact that death was not imminent. The team reassured him that there would be time to talk more when death was closer at hand. Over the next few months, Tim returned to active play with peers, engaged in video games and early romantic interests, prepared for the next school year, and articulated future plans to go to college and get a job.
Siblings also experience a sense of “apartness,” of being different or stigmatized by having a seriously ill brother or sister. These children often live in fear of becoming sick themselves, along with suffering a complicated mix of guilt at having escaped the illness and shame at feeling this relief. They are exceedingly conscious of the physical exigencies of the illness, as well as the impact on the child’s functioning. Private theories about what caused the illness are common, and the siblings frequently implicate themselves in the explanation. They often express a fervent wish to understand and be more involved.9,10
Bobby, 10, reported his version of the sequence of events that led to his sister’s diagnosis of osteosarcoma and amputation: “She hurt her leg on the chain of her bike. She didn’t even notice it until I pointed it out to her. I don’t even ride my bike anymore. One night I went out and broke the chain so I couldn’t ride it. I told my mother it broke by itself, but I broke it.”9(p. 55) He wrote a story: “This is my sister (drew a one-legged stick figure) and this is me (drew a two-legged stick figure). There is a difference. But I still think that this is the same Cindy and I know that she is not the same to you and I think that she is beautiful.” He then drew a picture of Cindy, stressing her very short hair and her stump. He expressed much concern about how the stump would look3(p. 57) (Figure 3.8). In a subsequent session, Bobby admitted to nightmares of “the same thing” happening to him (Figure 3.9).
Figure 3.8 Bobby’s portrait of Cindy.
Reprinted with permission from Kellerman J. Psychological Aspects of Childhood Cancer. Charles C. Thomas, 1980.
Figure 3.9 Bobby’s nightmare.
Reprinted with permission from Kellerman J. Psychological Aspects of Childhood Cancer. Charles C. Thomas, 1980.
A 10-year-old sibling spoke about her brother’s diagnosis of a brain tumor: (Figure 3.10) “I feel scared (green)—I feel as if I don’t really know what is happening. Sad is blue—at first my parents just told me that my brother needed an operation. They didn’t say it was cancer. Confused is yellow—just all mixed feelings—I don’t know what to think. Hopeful is purple—bright—I don’t really have a lot of hope, but maybe just a little. Angry is red because that is a mad color. Why him? What did it have to happen to him? My drawing is called ‘Mixed Messages’ because I have all of these different feelings and everyone is telling me different things. Like they say mostly that he is going to be OK, but they—and I—don’t really believe it.”15
Figure 3.10 Mixed messages.
Reprinted with permission from Pizzo P. Principles and Practice of Pediatric Oncology, 5th ed. Lippincott Williams, and Wilkins, 2006.
Adolescents (13–18 Years)
Adolescence is characterized by an evolving process of identity formation, appreciation of abstract concepts, and increasing sophistication in both intellectual and emotional understanding of situations and relationships. Future orientation is paramount in the areas of educational and career goals and the development of intimate relationships. Just as these young people are struggling to establish separation and autonomy from family, they must contend with the enforced dependence and vulnerability imposed by the illness. While adolescents understand the permanence and universality of death, they may still feel personally and emotionally invincible. Offering adolescents a role in decision-making is always important, whether or not they accept. They may need assistance from the medical team or mental health clinician to distinguish their preferences from those of their family. Because many adolescents try to protect their parents from their own distress, it can be a frightening prospect to make their own needs known. Peer relationships and activities and self-directed symptom management are critical components of quality of life for adolescents. Written expression, music, media, and web-based activities can provide windows into the impact of the illness on their life and how it has impinged on their sense of self.
In the words of Katherine (age 18):
Younger children are not developed in themselves yet, in their own persons, in their own individualism. They can still be with their mother. Older people are away from their mother; they’re detached, more adult. When you’re in the middle, parents don’t want to let you go. You want to be set free a little bit, but you want to be able to come back. I just felt that I was denied any sort of chance. . . . Instead, it was decided for me: You are going to mature very fast right now. You have to make life-and-death decisions. You have to accept things that children who are young adults between the ages of 13 and 19 don’t normally have to face.” It’s like: “Grow up right now and become what you have to become to deal with this.” I never had the chance to be sweet 16. I never had the chance to be gay old 17. I had to automatically be an adult, and it was very hard.2(p. 101)
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