Although the 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.³^–⁴ 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 post-traumatic stress; few peer activities; lower cognitive development scores and school difficulties; diminished parental attention and overall ratings of a poor quality of life.⁵^–⁶ Sibling relationships are a crucial axis within the family system and the children’s mutual caring and devotion can be enhanced rather than overlooked (Figs. 3-1 and 3-2).

Fig. 3-1 Don’t brothers and sisters count too??

(Reprinted from Sourkes B et al. Food, toys, and love: pediatric palliative care, Curr Probl Pediatr Adolesc Health Care 35(9):345–392, 2005.)

Fig. 3-2 I am crying because I want my brother to be with me.

(Reprinted from Sourkes B et al. Food, toys, and love: pediatric palliative care, Curr Probl Pediatr Adolesc Health Care 35(9):345–392, 2005.)

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??”⁷

A six-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.”

Certain psychological themes that emerge 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 child psychology, psychiatry, and other mental health professions, as well as the specialty of child life, are delineated as they contribute to providing 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, usually the mother. At 6 to 12 months of age, infants go through a phase of stranger anxiety, mitigated by the proximity to the mother. Separation anxiety, which emerges between about ten and eighteen months, is a response to discrepancy: the more regular the presence of the mother, 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 re-establish a secure routine and framework to enable the resumption of developmental progress.

Two-year-old Jimmy had been hospitalized for six 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-morbid level of functioning. Recommendations to the parents included:

• Take a gradual and consistent approach with Jimmy in all areas. The 6-month disruption in his development will not be righted overnight; he needs to re-familiarize himself with his family, room, house, and toys.

• It is fine if he wants you within sight at all times. After all the coming and goings of the hospital, he will crave your presence. The intensity will abate with time. Very gradually, once he re-engages with toys, try to move away from him as he plays (first in the same room, then out of the room). Initially, do so for only moments at a time.

• Jimmy has to re-learn how to play and have fun. Start with a few toys that he can get to know over the first few weeks, such as blocks to build up and knock down, a cloth for peek-a-boo, pull toys that encourage crawling, and cuddly stuffed animals. Keep the toys around him and do several play sessions with him each day.

• As much as possible, have him on the floor or in his playpen rather than in your arms. Put him into the playpen for as little as ten seconds and gradually increase the time. Reinforce him with hugs and verbal praise for being a “big boy.” Put toys or food slightly out of reach to tempt him to crawl and to stand to reach them.

• Jimmy should eat all his meals in his high chair, always in the same location. Put only a bite of each kind of food out at a time. Because he seemed to eat more in the hospital when he was playing, use small toys as both distraction and enjoyment.

• It is important that Jimmy begin to use his words again. When he points to an object, give him its name and develop a back-and-forth language game with him.

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, responses to distress and to frustration of expression.

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” connoted distress and pain (Fig. 3-3) and contrasted with his earlier bright image (Fig. 3-4). 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.”⁸

Fig. 3-3 Batman tunnel.

(Reprinted from Sourkes B: “Psychological impact of life-limiting conditions on the child.” In Goldman, Haines, Liben [eds]. Oxford Textbook of Palliative Care for Children (2006). By permission of Oxford University Press.)

Fig. 3-4 Untitled early image.

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” (Fig. 3-5).

Fig. 3-5 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 virtue of 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 (Fig. 3-6), 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)

Fig. 3-6 How I felt when I heard that I had leukemia.

(Reprinted and adapted from Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness by Barbara M. Sourkes, 1996, by permission of the University of Pittsburgh Press.)

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 than ever before: 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 is 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.³^–⁴

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.”³ (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 look.³ (p. 57) (Fig. 3-7) In a subsequent session, Bobby admitted to nightmares of “the same thing” happening to him (Fig. 3-8).

Fig. 3-7 Bobby’s portrait of Cindy.

(Reprinted with permission from Kellerman, J. Psychological Aspects of Childhood Cancer. (1980). Courtesy of Charles C. Thomas, Publisher, Ltd., Springfield, Illinois.)