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.)

Fig. 3-8 Bobby’s nightmare.

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

A ten-year-old sibling spoke about her brother’s diagnosis of a brain tumor: (Fig. 3-9) “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 okay, but they—and I—don’t really believe it….”⁹

Fig. 3-9 Mixed messages.

(Reprinted with permission from Pizzo, P. Principles and Practice of Pediatric Oncology, 5th Edition. 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.

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 thirteen and nineteen 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 sixteen. I never had the chance to be gay old seventeen. I had to automatically be an adult, and it was very hard.”²

(Katherine, age 18) (p. 101)

Adolescent siblings are caught in a similar web: just as they are beginning to develop their individual identity and to negotiate their own independence, they are pulled back into the family. They are preoccupied and worried. These young people have difficulty sorting out their role and needs from that of being another parental figure.

Joanne fell on the stairs at school and split her lip open on the day before Cindy’s amputation. Her explanation: “I was walking in flat heels on the stairs. I thought of Cindy’s operation. That’s why I fell.”³ (p. 63)

In response to the question: “What has been especially hard for you during your brother’s illness?” an adolescent sibling responded: “Waiting while he is in the OR and worrying about what they are finding.”

Clinical Themes

The illness experience

The patient experiences the illness both physically and emotionally through symptoms, changes in appearance and body image, and also the intrusion of technology. These traumatic aspects reverberate for the siblings as well and may become a source of great distress because they often go unacknowledged.

Psychologist: If you could choose one word to describe the time since your diagnosis, what would it be?

Patient: “PAIN—once I felt as if the IV was exploding in my arm!”

The child went on to describe the excruciating pain he had felt amidst the chaos of his IV pole falling over and crashing⁷ (p. 365) (Fig. 3-10).

Fig. 3-10 IV exploding in my arm.

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

In response to the question: “What is the scariest feeling, thought, or experience you have had since your sister became ill?” a child drew her response: “Dreaming of my sister in pain.” She depicted herself as a diminutive brown figure in a small bed, overwhelmed by the dream image of her sister in bright orange screaming “OW” (Fig. 3-11).

Fig. 3-11 Dreaming of my sister in pain.

A 12-year-old child with end-stage renal disease depicted his absolute dependence on hemodialysis to live. He entitled his drawing “MY machine.” One hand is literally plugged into the machine while the other is in a “thumbs up” gesture. His facial expression is ambiguous—triumph, horror, or a combination of the two (Fig. 3-12). A sibling’s drawing of his brother hooked up to multiple wires and monitors communicates his fear at what he has witnessed (Fig. 3-13).

Fig. 3-12 MY machine.

Fig. 3-13 My brother in the hospital.

Concerns about sexuality can be quite pronounced in children living with serious illness. Sexuality in all its facets represents a life force, which is exactly the struggle in which these children are engaged. Furthermore, the body is the focus of illness and sexuality is an integral part of that same body. Sexual identity, functioning, and fertility—and the potential or actual losses thereof—loom particularly large for adolescents, although younger children may also harbor worries about immediate and long-term effects of illness and treatment.¹⁰

An 18-year-old boy who had had his leg amputated expressed fears about his sexual functioning and how his girlfriend would react. On a clinic visit shortly after surgery, he greeted the psychologist: “You’ll be glad to know I still work! I was glad too!”¹⁰

A 12-year-old girl insisted on reading the informed consent for her bone marrow transplant. When she asked what “sterility” meant, her physician replied: “It means you can’t have babies.” She retorted quickly and with spirit: “Then I’ll adopt!” However, following this discussion, she spoke frequently about her sadness at the loss of fertility.¹⁰

An 8-year-old sibling talked about her adolescent sister’s hair loss secondary to chemotherapy. With some embarrassment, she admitted that she had glimpsed her sister in the shower and only then realized that she had lost her pubic hair as well. She was disturbed at seeing her sister’s body looking like that of a young child again.

For all the children, their longing to return to their “normal life” or their “life from before” (or, in situations where a child has a congenital condition, “life without sickness”) is counterbalanced by the recognition that the presence of illness in the family cannot be erased, nor its impact reversed.¹ Rather, the children are confronted with the extraordinary challenge of pursuing the developmental tasks of childhood and adolescence while negotiating the illness experience.

Awareness of the life-threatening nature of the illness

Children’s awareness is a fluid process not a static state, and depends on factors including: their current medical status and knowledge about the illness (or that of the sibling’s), their “wisdom of the body,” the urgency and intensity of treatment, the emotions of family and caregivers, the family communication style and encounters with other children who are ill.^1,¹¹ These issues are particularly poignant when more than one child in the family has the illness. References to death may be somewhat veiled and allusive, or direct and explicit.

During a psychotherapy session in the last few months of her life, 13-year-old Evangeline drew a picture entitled “My Lungs.” She portrayed herself as a heart with a sad face between (and connected to) two lungs: “One of my lungs is sad because it has disease in it; the other lung is smiling because it is still OK” (Fig. 3-14). Her use of the word “still” expressed her qualified confidence in its current state.

Fig. 3-14 My lungs.

A 4-year-old child had always done medical play with a stuffed Curious George monkey, giving him shots and bandages. In a session close to her death, she methodically covered him with tissues and taped them in place. By the end of her play, he appeared to be buried under a shroud. She was very quiet during her activity and made no comment about her play ⁸ (Fig. 3-15).

Fig. 3-15 Curious George under a shroud.

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.

An 8-year-old boy with muscular dystrophy was tripping and falling constantly, but adamantly refused to use a wheelchair, protesting that he did not need it. His older brother with the same disease was already severely compromised. In a family drawing, the child portrayed himself jumping and smiling; he drew his brother as an incomplete almost ghost-like figure at the computer. The extremities of all four family members are distorted or missing. This child’s awareness—and attempted denial—of his own progressive deterioration as well as his brother’s status (and thus his own in the future) are embedded in the drawing (Fig. 3-16).

Fig. 3-16 I am jumping.

A 14- year-old boy with hemophilia who had just been informed that he was HIV-positive graphically described the experience: “Before hearing the news, I was just thinking: I hope they are not going to tell me I have HIV” (on a “happy” purple background). After hearing the news, he depicted himself in a coffin against a black background saying: “I hope I’ll be alive when they get the cure…” (Fig. 3-17).

Fig. 3-17 Before and after.

An 8-year-old sibling said his biggest worry was that his brother might die of his illness. He drew a somber picture of two faceless black figures lowering a coffin into the ground, next to a tombstone inscribed “RIP“and a pile of dirt. Anxious scribbling filled part of the page (Fig. 3-18).

Fig. 3-18 Rest in peace.

Anticipatory grief

Psychologist: “Are you in any pain? Does anything hurt?”

Jenny: “My heart.”

Therapist: “Your heart?”

Jenny: “My heart is broken…. I miss everybody.”¹ (p. 153)

Children’s expressions of anticipatory grief—for many cumulative losses—accompany their awareness of the implications of the illness.¹–^2,¹² Patients grieve the loss of control over their body and disease, the loss of identity of what had been their roles and functions in the family and in the outside world, and the foregoing of future goals. The children face the ultimate leave-taking, the departure from all that is familiar and loved. Loss of relationships—expressed through fears of separation, absence, and ultimately death itself—is paramount, and is the dimension shared with the siblings.

An interchange between Mariesa, 16, and Mikaela, her 10-year-old sister with a brain tumor:

Mariesa: “We’ve always been really close. I just hate to think of… just too many scary thoughts and too many feelings…. I just know one thing: I just want everything to be OK and everything to go away and hopefully it will work out.”

Mikaela: “Same with me.”

Mariesa: “And she knows that I love her no matter what.”¹³

An adolescent with thalassemia, whose brother had died in infancy of the same disease, drew a cemetery image (Fig. 3-19).

Fig. 3-19 Cemetery.

“My parents and friends are surrounding me [the large cross]. Others who passed away are buried there—especially my little brother—actually, he was my oldest brother. It’s raining—sad and depressing. Rain means that something has happened or will happen. I would like people to remember who I am. I don’t want any enemies around my grave—or to visit me.”

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 (Fig. 3-20). 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.

Fig. 3-20 Magnificent flower.

A 7-year-old girl had a recurrent dream: “In the dream, I want to be with my mother, and I can never quite get to her.” The girl recounted the dream in a joint psychotherapy session with her mother. Whereas the mother found the dream “excruciating,” her daughter articulated that “even though the dream is very sad, it’s not a nightmare.” The dream eventually provided the focal image for mother and child to work through the anticipatory grief process ² (p. 70).

The distillation of anticipatory grief to its essence marks the imminence of death. At times imperceptibly, at other times dramatically, children often turn inward as they pull back from the external world. Cognitive and emotional horizons narrow because all energy is needed simply for physical survival. A generalized irritability is not uncommon. Children may talk very little, and may even retreat from physical contact. Although such withdrawal is not universal, a certain degree of quietness is almost always in evidence. This behavior is a normal and expected precursor to death.¹

The Voice of the Child in Decision-Making

Mikaela drew a picture entitled “This or This.” (Fig. 3-21) when she found out that her disease had recurred. On one side of a doughnut she depicted tumor cells, on the other side she drew a needle for spinal taps. In the middle of the doughnut is a little stick figure of a person. At the time of drawing the picture, Mikaela said: “I hate needles and spinal taps, but I also don’t want my tumor to come back. If I don’t have all the needles, then more tumor cells will grow. So if I don’t want them to grow, I have to have all those awful needles. That’s why I feel as if I am stuck in the middle of a doughnut.” Reflecting on the drawing months later, Mikaela elaborated more explicitly: “What I mean by ‘I was stuck in a doughnut’ is that I had two choices and I didn’t want to take either of them. One of the choices was to get needles and pokes and all that stuff and make the tumor go away. My other choice was letting my tumor get bigger and bigger and I would just go away up to heaven…. My mom wanted me to get needles and pokes. But I felt like I just had had too much—too much for my body—too much for me…. So I kind of wanted to go up to heaven that time…. But then I thought about how much my whole entire family would miss me and so just then I was kind of like stuck in a doughnut….”⁷

Fig. 3-21 This or this.

(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 10-year-old sibling whose sister was critically ill stated intensely: “I am mad at all the doctors. I think that they are giving up too soon. I KNOW that my sister will not die, I just know it. But I feel like it’s only me who feels that way and no one listens to my opinion.” She then drew a heart called “wants to burst” with a black dot of “depression, madness and sadness” (Fig. 3-22).

Fig. 3-22 A heart that wants to burst.

Over the last decade, there has been increased recognition of children’s participation in making treatment decisions. Attention to children’s experience of their illness is essential not only to enhance their quality of life, but also as a guide to clinical decisions and goals of care. This may become more challenging as an illness progresses, especially if the family and clinicians are reticent to discuss death with children. A landmark study ¹⁴ showed that bereaved parents who had talked with their child about death had no regrets about doing so, whereas those who had not engaged in such discussions were often left with regret. While younger children may not be able to take an abstract or time-based perspective, their expressed fears, concerns, and specific preferences can provide the basis for decisions. Older children and adolescents who have more capacity to plan over time can engage in complex end-of-life decisions that may be driven by interpersonal relationships.¹⁵^–¹⁶ However, because actual assessment tools are only in the early stages of development, clinicians are often left to rely on their own judgment to assess children’s understanding of the contingencies they face.

Children are often aware of the diminishing curative or life-prolonging options available. It is at this time that they may ask anxiously: “What if this medicine doesn’t work? What will you give me next?”¹ Input from members of the interdisciplinary team can be crucial at this juncture: children often express their understanding, awareness, and thoughts about treatment options and living or dying to individuals other than their parents or primary physician. Frequently, their most candid disclosures evolve within the context of psychotherapy.

The ethnic and spiritual culture of the family is a significant factor in how the child’s voice is incorporated into the decision-making process. It is especially critical for clinicians to understand how a family’s culture defines the construct of “childhood” in terms of protectiveness (e.g., if to tell, how much to tell a child, should a child be an active participant in planning?). A child’s expressions about the illness experience must be understood within this framework. The current emphasis in mainstream American culture on the “rights” of children to have access to information and participate in decisions is far from universal. Furthermore, the zeal to include children may inadvertently create a burden on the child that he or she does not feel equipped to manage.

The following vignettes illustrate a spectrum of children’s involvement in decision-making.

Child’s voice is instrumental in determining plan:

A 7-year-old girl told her parents that she was too tired to fight anymore, and that she wanted to give up. She added: “If I have to continue suffering, I would rather be in heaven.” She repeated this statement to the medical team. The parents acknowledged that their child’s statements were major determinants in their shifting to a palliative care plan ¹ (p. 156).

An adolescent is comfortable within his family culture of non-involvement in decision-making:

A 16-year-old boy from the Middle East had HIV disease secondary to hemophilia. His parents were adamant that he not be told his diagnosis of HIV or the prognosis: “No child of any age should be burdened with such things.” The boy politely and repeatedly declined staff’s queries about whether he wanted more information about his condition or whether he had any opinions that he wished to express about treatment options. His knowledge, however “veiled” was nonetheless accurate: he stated that he had a serious immune condition in addition to the hemophilia, that he was aware of body fluid precautions including safer sex, and that he fully trusted his parents’ decisions about treatment. He maintained active involvement in school and with friends until his death.

The inadvertent burden of decision-making on a child:

An 11-year-old child had been through many remission-relapse cycles, and had been informed and involved in all aspects of her treatment from the beginning. When she was offered radiation therapy for palliative symptom control, she confided to her psychologist: “I’m scared because I’m not so good at making decisions. My parents want me to have radiation, but a little voice in me tells me not to…. My mother always said that if I die, she wants me to die happy and at home. If I had radiation, I’d have to come into the hospital every day. And I don’t know if radiation will really help, or if I would die anyway.” Despite what had been her clear understanding of the reason for radiation therapy (exclusively for palliative symptom management), her intense emotion and hope overrode her intellectual grasp as she wondered whether the radiation would help her to live longer (“or would I die anyway”)¹ (p. 156).

Role of the Mental Health Professions and Child Life

Palliative care clinicians of all disciplines must rely on many sources to understand and relieve children’s distress. The etiology of psychological symptoms in children are multi-factorial, and responsive to a host of physical and situational variables. For younger children, physical complaints and irritable or withdrawn behavior may be the most common expressions of emotional distress. The differential for depression or anxiety syndromes includes delirium and encepha-lopathy, medication side effects, and pain or other physical symptoms such as dyspnea or fatigue. Anxiety may be generalized or specific to separation, procedures, or the anticipation of pain. Medical trauma and terror can also present in a variety of ways in both children and their parents. (See Chapter 26.) Uncertainty around the illness, misconceptions, and lack of communication or secrets surrounding the illness can also fuel distress and changes in behavior. Mental health clinicians, and the entire medical team, need to pay close attention to the history provided by the parents. They also have a specific role, in the course of an evaluation or psychotherapy, to uncover the individual child or adolescent’s perceptions of the illness and its implications.

Because children’s experiences are so intertwined with those of their parents and the professional team, it is essential to clarify whose distress is being reported. There are often discrepancies in parent and child assessment of symptoms of depression, for example, with parents both over- and underreporting as compared with their child’s self-reports.¹⁷ Children and adolescents in particular, try to protect their parents from the extent of their distress.¹⁸ Clinicians who care for these children must be vigilant about the influence of past personal or professional experiences, especially those involving loss, on their assessment of a particular situation.

Mental health professionals and child life specialists focus on children’s subjective experience of the illness. Their expertise lies in eliciting and understanding children’s language, images, and play. As such, they often serve as interpreters of the child’s experiences and needs to the medical team and the parents.

Psychological treatment

“I felt much better because I knew that I had somebody to talk to all the time. Every boy needs a psychologist! To see his feelings!”¹ (p. 3).

6-year-old child

“You don’t look at me like other people do and judge my behavior. Instead you analyze my behavior and try to get to the root of it. Mostly you helped me get to the root of it, and helped me handle it on my own. You can ask for your family’s support, wisdom, experience; but it’s not fair to burden them. I have an older sister whom I talk to, but at the same time, I don’t want to upset her. I don’t want to make her cry for me, I know that when I first met you, I didn’t want to talk about it. I wanted to handle it on my own. But that faded so quickly because you’re so helpless. You really do need somebody that can come in and help you”² (p. 113).

Ideally, the psychological status of each child receiving palliative care should be evaluated in order to plan for optimal care, in the same way that medical and nursing assessments are carried out. The contribution of child psychology and psychiatry, as well as other mental health disciplines, provides specialized knowledge and skills. The specific and unique interventions include: evaluation of the child’s psychological status, diagnosis of psychological/psychiatric symptoms and disturbance, psychotherapy and psychotropic medication, and consultation to families and the team. The healthy siblings are included within this network of care.⁸

Reasons for referral for psychological treatment include:

• Diagnosis of depression, anxiety, or traumatic responses in the child or sibling,

• Generalized distress in coping with the exigencies of the illness, as perceived by the child, parents, and/or team,

• Pre-existent stressors or vulnerabilities in the child’s life that are now exacerbated by the illness (e.g., psychiatric history in child or family member; recent geographical move, loss of employment, divorce, death of family member),

• Dilemmas in decision-making,

• Requests by parents who want their child to have all possible avenues of intervention and support.¹⁹

Children and their families respond best to referrals for psychological intervention when key team members explain it as recommended and routine and something that “other families we have treated have found helpful.” Children’s anxiety can be allayed when they hear the simple, non-threatening explanation: “All children who are ill, or who have siblings who are ill, have worries.” Terms such as the “talking doctor” or the “feelings doctor” provide a functional description that clearly distinguishes the mental health clinician from others on the team. The concept of confidentiality, or privacy, should be introduced early, with a definition of its meaning and boundaries. Over time, even if not articulated, children come to understand the mental health clinician’s role in their care. For older children and adolescents, the concept of the “psych person” as a team member, albeit with special bounds of confidentiality, helps to diminish any sense of stigma.

Psychotherapy is the treatment modality unique to the mental health clinician and can add a crucial dimension to a child’s comprehensive care. It facilitates psychological adjustment by providing a protected framework for the expression of profound grief, and for the integration of all that he or she has lived, albeit in an abbreviated lifespan. The child conveys the experience of living with uncertainty and the threat of loss through words, drawings, and play and transforms the essence of his or her reality into expression. Furthermore, even for a young child, considerations about remaining quality of life may be discussed.^1,⁷ Psychotherapy may be the sole intervention, or may be combined with psychotropic medication and behavioral symptom-management techniques.

With the intrusion of the illness, the relationship between children and their parents organizes around the pivot of potential loss. Thus, it is critical that the mental health clinician not intercede as a divisive wedge between them. From the outset, an ongoing alliance diminishes this threat, and optimizes the outcome of the work. Such collaboration is an essential part of the process. Because the parents must sustain the therapeutic work in the child’s day-to-day encounters with both physical and emotional stresses, their role cannot be underestimated.¹

The availability of psychological consultation in pediatric palliative care is often limited. While it is true that psychological treatment is not universally necessary, the opportunity to identify “high-risk” children and intervene in a timely fashion is often missed. The challenge, under these circumstances, is to provide thoughtful emotional support for the child in a carefully planned manner. Such support comes in many forms, from a willingness to listen and answer questions, to regular visits at expected times, to creative art and play that allows the child to express feelings and concerns. If a child has demonstrated particular comfort or closeness with one particular individual on the team, that person may be designated as a resource for the child, with efforts to ensure consistent contact between them. On a cautionary note, there are risks when unskilled or inadequately trained personnel attempt to undertake a psychotherapeutic role. These risks include: opening up too much vulnerability in the child and then not knowing how to contain the emotion; interpreting – beyond simply clarifying – the child’s disclosures; promising confidentiality that may set up competition, rather than collaboration, with the parents; and becoming involved with the child beyond appropriate boundaries.⁸

Child life intervention

Child life specialists play a vital role in reducing the impact of stressful and traumatic events on children in medical settings.²⁰ They work with children and adolescents individually and in groups and develop the programs in the hospital playrooms. They provide both therapeutic intervention and social recreation, framed by their understanding of children’s responses to illness. Their insights are integral to the team’s understanding of a child’s adjustment to the overall experience. They are often a source of emotional support to the siblings and parents as well.

Child life specialists use developmentally appropriate and enjoyable techniques with patients and their siblings to familiarize children with aspects of the medical experience and to provide outlets for their feelings. They prepare the children for medical procedures and teach them coping techniques to alleviate distress, while at the same time enhancing their sense of control and mastery. Their encouragement of children’s social interaction, both in the hospital and at home, as well as their liaison with school re-entry programs, mitigates the children’s sense of isolation. Importantly, child life specialists assist children in the process of decision making by encouraging and facilitating communication with their parents and with their medical team. Guiding parents in helping the child live as fully as possible, even when close to death, as well as in talking with and involving the siblings during the illness and in bereavement, is another aspect of the child life specialist’s role. They are also often instrumental in initiating “legacy activities” with children, siblings, and parents to create lasting memories.

A 5-year-boy who could not have visits from his little sister because he was being prepared for transplant missed her intensely. When it turned out that the transplant could not be done, plans were put in motion to transfer him to home hospice. During that week, he refused to get out of bed or play. When discharge was imminent, his mother asked the child life specialist how to engage him in play at home with his sister. The child life specialist gave the mother many suggestions and also put together a bag including fun objects such as silly string and serious materials including a handprint kit. The family was deeply appreciative and reported that the ideas and the materials had helped them interact and play as well as build memories.

A 16-year-old girl who spoke only Vietnamese was hospitalized for a long period. The week before she died, a nurse asked the child life specialist to bring in a project that would be enjoyable for the child and that the mother could then keep as a memory. The child life specialist brought an example of spin art into the girl’s room, and through an interpreter asked whether she wanted to do it. The girl nodded. She had engaged in very little over the past few weeks. The child life specialist returned later in the day with the spin art materials and demonstrated how to do it. It was a magical moment: the child and her mother laughed together as she grabbed the paints and glitter. The child life specialist kept asking her if she wanted to make another, and she nodded yes over and over again. At the end of the afternoon, the mother showed the grandmother all the pictures that were lined up on display. The art project had brought enjoyment to the girl in the company of her mother, gave a sense of control as she wielded the spinner, and left good memories for the family.

Summary

The children who speak in this chapter articulate the concerns of patients and siblings who live in the shadow of life-threatening illness. Children who are not, or who are no longer verbal, or who are developmentally delayed also experience many of these issues, albeit in different ways. As children and families negotiate an illness through its progressive losses and the anticipation of death, palliative care clinicians, in their individual roles and as a team, are their unique companions.

Portions of (page 23 in this chapter are reprinted with permission from Brandell, J. Countertransference in Psychotherapy with Children and Adolescents. Jason Aronson Publishing Company, 1992. Additional portions of this chapter are reprinted with permission from Sourkes, B. The Deepening Shade: Psychological Aspects of Life-Threatening Illness, University of Pittsburgh Press, 1992.

References

1. Sourkes B. Armfuls of time: the psychological experience of the child with a life-threatening illness. Pittsburgh: University of Pittsburgh Press, 1995.

2. Sourkes B. The deepening shade: psychological aspects of life-threatening illness. Pittsburgh: University of Pittsburgh Press, 1982.

3. Sourkes B. Siblings of the pediatric cancer patient. In: Kellerman J., editor. Psychological aspects of childhood cancer. Springfield, Ill: Charles C. Thomas; 1980:47-69.

4. Sourkes B. Siblings of the child with a life-threatening illness. J Child Contemp Soc. 1987;19:159-184.

5. Sharpe D., Rossiter L. Siblings of children with a chronic illness: a meta-analysis, J Pediatr Psychol. 2002;27(8):699-710.

6. Alderfer M.A., Long K.A., et al. Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology. 27 Oct 2009. Epub

7. Sourkes B., Frankel L., Brown M., Contro N., et al. Food, toys, and love: pediatric palliative care. Curr Probl Pediatr Adolesc Health Care. 2005;35(9):345-392.

8. Sourkes B. The psychological impact of life-limiting illness. In: Goldman A., Haines R., Liben S., editors. Oxford textbook of pediatric palliative care. London: Oxford University Press, 2006.

9. Wolfe J., Sourkes B. Palliative care for the child with advanced cancer. In: Pizzo P., Poplack D., editors. Principles and practice of pediatric oncology. ed 5. Philadelphia: Lippincott; 2006:1531-1555.

10. Sourkes B. The child with a life-threatening illness. In: Brandell J., editor. Countertransference in child and adolescent psychotherapy. New York: Jason Aronson; 1992:267-284.

11. Bluebond-Langner M., editor. The private worlds of dying children. Princeton, NJ: Princeton University Press, 1978.