9 - Adolescents and young adults
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 > 8 - Psychological impact of life-limiting conditions on the child
8
Psychological impact of life-limiting conditions on the child*
Barbara M Sourkes
As pediatric palliative care develops into a field of its own, there is a window of opportunity to define the parameters of optimal psychological care for these children. [2, 3, 4] While the need for support is often articulated, the word is overused and under defined. Dictionary definitions of support connote holding up or serving as a foundation for and keeping from losing courage . Yet, these definitions simply indicate that support is the general underpinning the given of palliative care as it should be in any clinical care. Support is garnered from the family and from the professional team as a whole. It is not specifically meaningful in terms of psychological intervention for the child, and thus is distinct from the psychological treatment that is the domain of pediatric mental-health professionals.
Ideally, the psychological status of each child admitted to palliative care should be evaluated in order to plan for optimal care, in the same way as medical and nursing assessments are carried out. Child psychology and psychiatry as well as other mental-health disciplines, contribute specialized knowledge and skills. The specific and unique interventions include: evaluation of the child's psychological status, diagnosis of psychological/psychiatric symptoms and disturbance, role of psychotherapy and psychotropic medication, consultation to families and the team. The healthy siblings are included within this network of care. Thus, under optimal circumstances, psychological intervention can play a pivotal role in the integration of the child's comprehensive palliative care.
However, the availability of psychological consultation in pediatric palliative care is often limited. While it is true that psychological treatment is not universally necessary, the ability 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. One must take into account the child's need and expressed wish for such support beyond the family, as well as the level of comfort that the child has formed in relationships with members of the team (or one particular individual). Emotional support comes in many forms, from an openness to listen and answer questions, to regular visits at expected times, and to creative art and play activities that allow the child, expression of feelings and concerns.
On a cautionary note, there are risks when untrained or inadequately skilled personnel undertake a more profound psychotherapeutic role. These 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 over-involved with the child beyond appropriate boundaries. As a pediatric oncologist stated: Psychological intervention is no less a professionally skilled phenomenon than giving chemotherapy.
A four-year-old boy coveted the child life specialist's Mickey Mouse watch. He tried it on, inspected it from every angle on his wrist, and
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said: I like time. I wish I could wear a whole armful of watches. Later that day, in describing the watch to the therapist, he sighed: I just wish that I had armfuls of time. [5, p. 116]
The metaphorical image of wishing for armfuls of time exemplifies the extraordinary challenges faced by the seriously ill or dying child. These children live with many levels of awareness, and their pain and suffering, both physical and psychic, can be great. The following examples attest to these struggles:
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The child-in-the-family is a unit unto itself, with its own distinctive identity, strengths and vulnerabilities. The child's ongoing struggle to withstand and integrate the trauma of illness unfolds within this framework. His or her ability to cope is greatly influenced by the family the individual and collective responses of its members. Under optimal circumstances, the interior of the family assumes a central role in preserving the patient's psychological integrity. .[7, p. 4] The family affords a refuge in which the child can replenish psychic resources, shielded from the battering assault of the illness. The myth that a child's life-limiting illness, either unites or destroys a family reduces complexity to oversimplification.
I have a closer relationship with my family than most other kids because I've needed them more these last years. (11 year-old child) [5, p. 87]
Most of the children described or quoted in this chapter are (or were) living with cancer, a prototype of a life-threatening illness, and wherein cure is a possible outcome. Nonetheless, these children and families live in great uncertainty, experiencing anxiety, and anticipatory grief reactions to the potential loss of the child, if not ultimately to the actuality. The clinical issues are, with some variation, relevant for children living with many other chronic life-threatening and life-limiting illnesses as well. The common denominator among what may look like quite disparate disorders (from those characterized by intermittent hospitalizations and disruptions, to those of a more deteriorative course), is their relentless and insistent presence. The threat of separation and death, varies in intensity depending on both the overall time course and the particular phase of the illness.
The children who speak in this chapter articulate concerns that are universal to all those living under the extraordinary stress of illness. This is crucial to bear in mind, especially when working with children who are not, or are no longer verbal, or who are severely developmentally delayed. Regardless of whether the identical form of psychotherapy described here is applicable, the process illustrates how all children, whatever their own developmental level, have to negotiate both the progressive losses of illness and the anticipation of the ultimate loss of life.
Psychological/psychiatric symptoms
Knowledge of normal psychological development is essential in evaluating the impact of illness on the child. Cognitive, affective and social perspectives intersect at every juncture. The child's passage through both Piaget's and Erikson's developmental stages, is challenged to the utmost by the presence of life-limiting illness.
Although many psychological problems of the child with a life-limiting illness may be categorized as adjustment reactions, more severe psychopathology can emerge. This is especially true in the child with pre-existent vulnerabilities, or when there is a prior psychiatric history in the child or a family member. While it is important not to overemphasize pathology in the child, there is also a risk in minimizing or not recognizing it. Furthermore, any psychological response, however benign initially, can freeze into a traumatic reaction under sustained stress. Thus, mental health professional must be able to assess the severity of symptoms, particularly in terms of intensity and duration, relative to the child's current reality.
In addition to knowledge of normal development and psychopathology, the clinician must be well informed of the child's medical status and implications thereof (both symptomatic and prognostic). This latter requirement provides grounding in the child's life situation, and is crucial for accurate and effective diagnosis and intervention.
Psychological symptoms in seriously ill children are often multiply-determined and in flux. Physical pain, metabolic imbalance, neurological dysfunction, infection and the impact of medications are closely linked, if not at times inseparable from psychological distress. Most common are diagnoses in the broad categories of anxiety and depression. Anxiety represents a widely diverse group of developmentally appropriate and pathological coping responses, ranging from pre-existent anxieties exacerbated under the stress of illness, to cumulative generalized anxiety, and even to post-traumatic stress disorder. Yet, sleep deprivation and delirium may present as anxiety and agitation. The psychological and somatic symptoms of depression can be hard to differentiate from the
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effects of the illness and treatment. Furthermore, there is often confusion between sadness/anticipatory grief and clinical depression: What is a normal response to impending loss versus the symptom of depression that should be treated with psychotropic medication? Psychotic and organic brain syndromes often present with cognitive and perceptual disturbances. Delirium may also present as anxiety or oppositional or aggressive behavior; parents frequently report sensing something is different about their child, but are unable to describe specifically the change.
It is for reasons such as these that definitive psychiatric diagnosis can at times be elusive. As a result of these diagnostic ambiguities, one often proceeds with psychological or psychotropic intervention on the basis of managing specific symptoms rather than treatment of a presumed underlying psychiatric disorder.
Psychotherapy a conceptual framework
A physician asked a ten-year-old child how she was feeling. She answered: Medically I'm fine, but psychologically I'm not so fine, but I'll discuss that with my psychologist. [5, p. 11]
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Psychotherapy for the child with a life-limiting illness can provide the opportunity for the expression of profound grief, and for the integration of all that he or she has lived, albeit in an abbreviated lifespan. Furthermore, even for a young child, considerations about the remaining quality of life may be discussed. Within its framework through words, drawings and play the child conveys the experience of living with the ever present threat of loss, and transforms the essence of his or her reality into expression.
In working with a child facing death, the therapist must be able to enter the threat with the child, accompanying him or her down the road toward ultimate separation. The shared knowledge of the fine line that separates living from dying, whether implicit or explicit, becomes the containment of the psychotherapy. The child can derive profound comfort from the safety and ongoing ness afforded within its framework. (For a detailed discussion of the psychotherapeutic framework and techniques, see Sourkes.[1, 5, 6])
The therapist had seen a hospitalized girl for a session just prior to her receiving heavy sedation. When the therapist returned the next day, the girl said: I've been asleep for a full day. I feel as if you were just here a few minutes ago, although I know it was really yesterday. It's as if you never left!. [8, p. 66]
Most children enter psychotherapy because of the stress engendered by the illness, rather than more general intrapsychic or interpersonal concerns. From a psychological point of view, the majority of the children are well adjusted. Psychopathology is the exception, not the rule. In The Spiritual Life of Children [9], child psychiatrist Coles remembers advice offered by Lindemann, a psychoanalyst, during the polio epidemic of the 1950s. Parallels to the child with other illnesses are evident.
These are young people who suddenly have become quite a bit older; they are facing possible death, or serious limitation of their lives; and they will naturally stop and think about life, rather than just live it from day to day. A lot of what they say will be reflective and you might respond in kind. It would be a mistake, I think, to emphasize unduly a psychiatric point of view. If there is serious psychopathology, you will respond to it, of course; but if those children want to cry with you, and be disappointed with you, and wonder with you where their God is, then you can be there for them. [9, p. 101]
Lindemann thus reminds the therapist to bear witness to the child's extraordinary situation, and to respond within the context of that reality.
The concept of psychic trauma lends itself to understanding the experience of life-limiting illnesses in childhood. Terr, a child psychiatrist, offers the following definition in her book, Too Scared to Cry [10]:
Psychic trauma occurs when a sudden, unexpected, overwhelmingly intense emotional blow or a series of blows assaults the person from outside. Traumatic events are external, but they quickly become incorporated into the mind. A person probably will not become fully traumatized unless he or she feels utterly helpless during the event or events.[10, p. 8]
This description certainly relates to the overwhelming sense of loss of control experienced by the seriously ill child: the shock of diagnosis, the indelible imprint of the sustained assault on the body and psyche, and the uncertainty of the outcome. Whereas malevolence of intent characterizes many forms of trauma (e.g. abuse, kidnapping), the culprit in life-limiting illnesses is the inexplicable, impersonal randomness of fate.
Winnicott, the first British pediatrician to become a psychoanalyst, wrote extensively about the developmental processes of childhood, and their implications for psychotherapy. He defined trauma as an impingement from the environment and from the individual's reaction to the environment that occurs prior to the individual's development of mechanisms that make the unpredictable, predictable. [11, p. 44]
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While life-limiting illness does not literally originate in the environment, its devastating impact on the child more than qualifies it as trauma. In fact, the illness goes beyond what Winnicott referred to as unthinkable anxieties in its actual threat of death. Winnicott further stressed the importance for the young child of the presentation of the world in small doses the preservation of a certain amount of illusion an avoidance of too sudden an insistence on the reality principle. [11, p. 108] The child with a critical illness can stand unshielded from pain, terror and the ultimate threat of loss of life. In this sense, it is no exaggeration to state that he or she loses a critical aspect of childhood in the moment of diagnosis, or through the trajectory of the illness. This paradox of precocious awareness is reflected in a five-year-old child's pensive query: It takes a lot of days to be grown up, doesn't it? [11, p. 28]
In child psychotherapy, play is the crucial vehicle of communication. Winnicott stressed that enjoyment of play is an a priori condition of entering into the depth of the psychotherapeutic process. For the child whose very existence is suffused with gravity, such pleasure is intrinsically valuable. The overwhelming nature of the illness cannot be approached by reality alone. Paradoxically, the illusion afforded by play is what allows reality to be integrated. Through play, the child can advance and retreat, draw near and pull away from the intense core. These tentative forays allow the child to contain and master the experience. Illusion is not to be construed as avoidance; on the contrary, play is the essence of a child's expression. Furthermore, illusion is translucent, if not transparent, and thus reality shines through for both the child and the therapist even when not addressed directly by either. Inextricably linked with play is the child's use of symbolic language and graphic images that provide windows into his or her experience.
During the previous night, a six-year-old boy's temperature and blood pressure had dropped precipitously. Although he was revived quickly, he had been blue, hard to rouse, and very cold. In a session the next day, the child reported that: Poly Polar Bear [one of his stuffed animals] is very sad now because he didn't swim. The water was ice. Through this image, the child reiterated his own traumatic experience of being cold. [5, p. 113]
The child's voice in decision-making
One side of my head says: Think optimistic. The other side says: What if this treatment doesn't work? (eleven-year-old-child) [5, p. 156]
The child is often aware of the diminishing curative or life-prolonging options that he or she faces. It is at this time that the child may ask anxiously: What if this medicine doesn't work? What will you give me next? The child experiences a profound sense of loss of control. It is at this time that families are confronted by a series of decisions regarding the nature and intensity of medical interventions that they wish to pursue. This process can be excruciating: they do not want their child to suffer more, yet they cannot often tolerate the thought of leaving any stone unturned in the quest for a cure or prolonged time, however miniscule the chance. The physician's and team's roles shift from leadership in recommending a curative treatment plan to the clarification of experimental and palliative options and consequences. In most instances, the parents make the decision; however, to varying degrees, the child may be involved in such discussions.
During the last decade, there has been increased recognition of the child's participation in making treatment decisions.[12] Crucial to this process is an assessment of the child's ability to appreciate the nature and consequences of a specific medical decision. This becomes particularly complex when the wishes of the child differ from those of the parents. Since actual assessment tools are only in the early stages of development, professionals must rely exclusively on their clinical judgment to assess children's understanding of the contingencies they are facing. This is often a juncture when input from members of the interdisciplinary team can be crucial: children often express their understanding, awareness and thoughts about treatment options and living/dying to individuals other than their parents or primary physician. Very frequently, their most candid disclosures evolve within the context of psychotherapy.
Case A 10 year-old child who had just relapsed drew a picture entitled This or This . (Figure 8.1) 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 the child 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.
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Fig.8.1 This or This. (See plate 5.) |
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Reflecting back on the drawing months later, the child 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
An 11 year-old child who had been offered radiation therapy for palliative symptom control confided to her therapist: 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
This child had been through many remission-relapse cycles, and had been informed and involved in all aspects of her illness and the treatment from the beginning. Nonetheless, her statements highlight the burden of decision-making that children may feel at critical junctures of their illness, particularly at end-stage. Furthermore, despite what had been her clear understanding of the reason for radiation therapy (exclusively for palliative symptom management), her intense emotion and hope have overridden the intellectual as she wonders whether the radiation will help her to live longer ( or would I die anyway? ).
Awareness of impending death
In my heart, something is telling me my heart is pulling me away from earth. It's hard for me. Everyone has a second life. The soul has a second life and it cannot be broken. My first life is starting to break into pieces. (10 year-old child)
During the terminal phase of the illness, the child's awareness of dying becomes more focused. No longer an abstract threat in the distance, death takes on an identity of its own. Rather than being a possible outcome, death is the outcome, its time of occurrence the only unknown. Catastrophic images often emerge in the child's language and stories during the terminal phase. Fear, desperation and the sense of disaster are all evident, even if in derivative form. However, references to its proximity can be quite direct and explicit. If an open climate has been established from the beginning of the illness, it will be reflected in how the child talks about death.
An 11 year-old girl commented matter-of-factly: Some of my friends have died. I wish I could talk to those kids' parents to see what their symptoms were, so that I would know what is happening to me. [5, p. 157]
The awareness may also be expressed symbolically, although no less powerfully, through play.
A 3 year-old boy played the same game with a stuffed duck and a toy ambulance each time he was hospitalized. The duck would be sick, and need to go to the hospital by ambulance. The boy would move the ambulance, making siren noises.
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During what turned out to be the boy's terminal admission, he played the same game with the duck. However, the ritual changed dramatically in its outcome:
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A 4 year-old child had always done a lot of 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 the tissues 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 (Figure 8.2).
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Fig.8.2 Curious George under a shroud. (See plate 6.) |
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Anticipatory grief
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Loss of relationships expressed through fears of separation, absence and death is paramount in anticipatory grief: grief expressed in advance when the loss is perceived as inevitable [13, p. 4]. Anticipatory grief may show itself as the child's increased sensitivity to separation, without any specific reference to death; comments or questions related to death that may be seen as a type of preparation or rehearsal; and the undiluted and unmistakable grief of the end phase of the illness.
In one manifestation of anticipatory grief, the child projects concern about himself or herself onto a significant adult, usually a parent or the therapist. On one level, the child recognizes his or her extreme dependence on the adult, and panics at the thought of something happening to that person. This reaction may be particularly pronounced in the child of a single parent. On another level, the child is expressing fear about his or her own situation through this mirror image. At least initially, the projection is best left untouched, as the child is clearly communicating extreme vulnerability.
After a discussion about his bad dreams, the therapist asked a six-year-old child what else he felt scared about.
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The child's grief related to the possibility of his or her own dying may be cloaked in symbolic terms, or in questions about others. As in all other communications, the therapist must stay close to the immediate concern, leaving the child in control of how far to pursue the topic. Often, he or she will make an isolated statement, or pose one question, and then, without further comment, turn to other subjects. The most powerful disclosures are those in which the child makes reference to the possibility of his or her own dying. Whether through the weight of the sadness, or through the actual words or images, the dying child's anticipatory grief is palpable, as he or she lives the intensity of separation in its ultimate form.
As the child confronts impending death, he or she may show signs of preparation. The child's actions or words are often quite matter-of-fact; their significance is not necessarily elaborated.
A seven-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 therapy session with her mother. Whereas the mother found the dream excruciating, her daughter stipulated 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.[1, p. 70]
The distillation of anticipatory grief to its essence marks the imminence of death. At times imperceptibly, at other times dramatically, the child who has been living with the illness is transformed into a dying child. The endpoint of the terminal phase is often marked by a turning inward on the part of the child, a pulling back from the external world. Cognitive and emotional horizons narrow, as all energy is needed simply for physical survival. A generalized irritability is not uncommon. The child 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 evident. The child is pulling into himself or herself, not away from others. This behavior is a normal and expectable precursor to death a form of preparation for the ultimate separation that lies ahead.
Three days before her death, and in what turned out to be her last session, a ten-year-old child said to her therapist: I am tired and I am very happy. I wanted to tell you more about being happy, but I am too tired to talk anymore. This peaceful disclosure provided the opening for a profound talk with her parents. They reassured her that they understood how tired she was after fighting so hard, that it was all right for her to let go now, and that they would be with her all the way. She listened calmly, smiling, nodding to their words.
Work with parents
From the moment of diagnosis of a life-limiting illness, the relationship between the child and the parents organizes around a pivot of threatened or impending loss. Thus, it is critical that the therapist not intercede as a divisive wedge between them. From the outset, an ongoing alliance between the child's therapist and the parents diminishes this threat, and optimizes the outcome of the work. The nature of the alliance will of course differ depending upon the age of the child. Terr [10] in her work with traumatized children, comes to similar conclusions: It is almost impossible for a [therapist] to treat a child without providing some access to parents who participate in the child's life (p. 307). Without the respect of an established alliance, the therapeutic work with the child will be
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compromised, and during the end-stage of the illness, probably rendered impossible.
The therapist must always be vigilant of the danger of over-involvement with the child. In such circumstances, the parents can begin to feel estranged and supplanted, just at the time when they are desperately trying to keep their child. Parents' pervasive guilt about their dying child (whether conscious or unconscious) will only be exacerbated if they feel that the therapist is better than they are at achieving closeness with the child, or at eliciting secrets that cannot be shared.
The child may become frightened by an inordinate amount of closeness to the therapist, while simultaneously needing the relationship. During this critical time, a sense of threat arises from the child's guilt at being close to an adult other than the parents. He or she may feel trapped: having to choose between parents and therapist, with the simultaneous fear of alienating either. However, if the child senses a strong alliance between the therapist and parents, he or she can feel secure in the therapeutic relationship.
Case The following case study illustrates many of the themes discussed in the first part of this chapter. Furthermore, it demonstrates how, the confluence of medical and psychological expertise can result in optimally integrated end-of-life care. The clinical material presented here focuses primarily on Matthew, the child who was ill, with reflections by his sisters, Abby and Erin. The psychotherapeutic intervention occurred over a four-month period, from February until Matthew's death in June. Inserted into the clinical material with Matthew are comments to highlight the themes generally applicable to children with a life-limiting illness.
Matthew was a four-year-old child who had been diagnosed with a brain tumor, an ependymoma, at the age of two. Over the course of his illness, he had undergone three surgeries, one course of chemotherapy and one of radiation therapy. He had had one good remission of nine-months duration. In February, just after his fourth birthday, it was decided that there were no further curative treatment options. The parents elected to provide palliative care for Matthew at home, and in fact promised him that he would not return to the hospital again. Thus, he remained at home from February until his death in June.
In the palliative care plan for Matthew, pain management was a foremost concern, particularly relief from headaches. Matthew received increasing doses of morphine, as well as sedation for sleep at night. The parents were taught basic physical therapy techniques and suctioning to relieve the discomfort of excess secretions. Although Matthew initially received tube feeding (he complained about hunger although he would not swallow food), over the course of the months, he began to eat again. However, the tube remained in place as a route for medications, as did his port access. Although Matthew spent most of each day in his parents' bed, surrounded by toys, books and videos, a specially adapted chair and stroller allowed him to sit at the family dinner table and at the computer, to take baths safely, and to be taken for walks outside. The palliative care physician visited approximately every two weeks, the nurse weekly, and the psychologist (myself) weekly. In addition to these weekly sessions with Matthew, every two to three weeks I met with his two sisters, Abby and Erin, ages ten and eight. They were included and well informed by the parents at every juncture, and remained actively involved with Matthew until his death. My meetings with the parents focused on their concerns about all three children. All the members of the team were available for frequent telephone consultation with the parents.
I saw Matthew weekly for 15 sessions, until the day before his death. Each session lasted 30 to 40 minutes;it had to end exactly at 10:30 AM when his favorite television program began. Matthew's mother came into the sessions occasionally on Matthew's or my request: either for clarification of his speech (his articulation was sometimes slurred), or to discuss an issue that had emerged in the session. All our meetings took place on his parents' bed. Matthew would be comfortably propped up by pillows, surrounded by his toys, and would be ready to draw using a clipboard for support. Although Matthew's pictures may look as if they were hastily drawn, in fact, each was done slowly and methodically, with great (silent) deliberation about his choice of colors.
Psychological intervention with Matthew had important impact on his overall functioning and care. At the time he was referred to palliative care, he was described by the parents as being stoic he can tolerate pain he never reports distress we are in awe of his courage. Matthew's response to most questions by the parents or the care giving 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 the mother to administer medication effectively. Through a combination of drawing, talking and play, he became increasingly able to express feelings both positive and negative and to be an accurate reporter of his physical and emotional state.
It is not infrequent that parents describe their child as being stoic, or non-complaining. While to a certain extent, this can be a point of pride, it can also be a risk signal. The child may not be reporting symptoms:
for fear that he or she will be taken back to the hospital despite assurances to the contrary (as was probably the case with Matthew).
with the magical thinking that if he or she doesn't report symptoms, then they are not really there and things are not really getting worse.
to protect parents from his or her pain/worsening condition.
An early drawing (Figure 8.3) is light and airy. Matthew told me: I'm not sick anymore and adamantly denied any discomfort. This statement was entirely consistent with the stoicism reported by his parents. In that session, I introduced him to a rabbit puppet, which he promptly named Donald Bunny. I 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
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watched and listened with some interest. I left the puppet with him for the week, and at the next session, his mother said that Matthew had begun reporting symptoms attributed through the voice of Donald Bunny. Although Matthew still would not acknowledge that he himself had any of the problems, Donald Bunny's reporting was serving an important purpose.
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Fig.8.3 Matthew Untitled, February 20. (See plate 7.) |
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Fig.8.4 Matthew Batman Tunnel, March 11. (See plate 8.) |
Matthew's next drawing (Figure 8.4) is dark and threatening. Matthew described it as: A batman tunnel. It's completely dark, but I wasn't scared. In this drawing is evident, the beginning of a shift away from the rigid denial expressed in I'm not sick anymore. Matthew allowed for a frightening image ( completely dark batman tunnel ) although he then, undid the fear by asserting that he was not scared.
A stuffed animal or puppet may be introduced into the psychotherapeutic process simply as one of the therapist's toys, or with a more focused agenda. In the latter instance, the therapist draws attention to the animal, and discloses that it is being treated for the same illness, or shares some of the same symptoms as the child. Most children are intrigued by this connection (even if skeptical), and question the therapist about the animal's experiences. Through this commonality, an alliance between the child and animal is formed. For a child who is receptive to this form of play, the identification with the animal, and the projective process do not take long to establish. By naming the animal, the child gives it a distinct identity, and simultaneously asserts a definite proprietary sense.
The progression in Matthew's comments from the first to the second drawings illustrates how, children gradually let down their defenses at their own pace and time. While clinical judgment prevails in each situation, it is often best to allow the unfolding to occur without much direct questioning or commentary.
By the next session, we began a ritual of reviewing what had been good and what had been bad during the week. Although Matthew would not initially mention any of the bad , he allowed his mother to list some of his symptoms (headache, pain behind eyes) and he nodded affirmatively to them. He did add for the first time I don't like it when I cough. Matthew's acknowledgment, and even spontaneous reporting of his symptoms, reflected a completely new phase in his candor, and thus in his care.
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At this juncture, Matthew's sisters, Abby (10) and Erin (8) did the following mandalas (Figures 8.5 and 8.6) during individual sessions with me. A mandala is a graphic symbolic pattern or design in the form of a circle. As a projective art therapy technique, an individual is asked to fill in a blank circle to reflect how you are feeling now. In a more structured version developed by the author[5], the therapist defines a topic around which the mandala will be focused, and then presents a set of feelings that are commonly attributed to the experience. The child is asked to think about which feelings fit him or her, and to choose a color to match each feeling. The child then fills in part of the circle to represent each emotion, and the area accorded to each feeling proportionate to its importance. Upon completion, the child gives the mandala a title and explains his or her choices of feelings and colors.
Abby and Erin did their mandalas around the topic: How it feels to have a little brother who is sick. The feelings presented
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to the girls included strong, worried, scared, hopeful, sad, guilty and helpless, as well as a category called other feelings you may have. Following are their verbatim descriptions, as well as interpretive comments.
Abby (age 10) The Colors of Life (Figure 8.5)
Matthew had some good and bad days this week. I don't sleep well I need to calm down I don't feel guilty and I don't feel helpless I feel strong. I don't feel helpless or weak or scared of baby things I can stand up for myself. Hopeful (yellow is pretty) maybe he'd stop that weird cough it scared me. I'm not very very worried or scared. When I didn't know what was happening I was very upset. Now I'm getting used to it. I do feel sad and upset sometimes. [Do you worry that he might die?] Yes I'm trying to get used to it. He acts and feels better. My parents said that there is no cure, that he will not get better, that he's going to die. For a month I was upset and crying. But now I'm hopeful his coughing ended it did.
Abby's mandala is bold and forthright. Strong is the largest feeling, followed by scared and hopeful. Although scared almost bisects/severs the circle, it is flanked by the two positive feelings. Sad, worried, and don't know are dramatically smaller. Her title, The Colors of Life, captures the totality of her experience of the moment.
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Fig.8.5 Abby The Colors of Life, March 18. (See plate 9.) |
Sibling issues highlighted in Abby's statement:
siblings' own stress is often expressed in somatic symptoms (e.g. insomnia)
pride in their own strength and maturity
upset at not knowing/understanding/being included in what is happening
getting used to the ill child's condition or impending death is an adaptive part of coping, and being informed is the necessary condition for such preparation.
the focus of hope fluctuates as symptoms improve with effective palliation. This can cause some confusion in children ( He acts and feels better his coughing ended. ).
Erin (age 8) My Mind Sometimes I Wonder how it's going to be without my little brother (Figure 8.6)
I feel sad because I love Matthew so much. It was so nice when he was here. Now he doesn't have fun because he is very sick. Blue is for tears. I think I'm worried. When he's sick, I don't know what to do. He used to stop Abby and me from fighting. He was the only person who was really nice to me. I don't know what I'll do without him. Angry is red like I feel like killing someone the color of blood. Abby fights with me. Matthew is crying or screaming because his head hurts. I have nobody to talk to not even Matthew is there. I chose purple for hopeful because it's a good color. Guilty (green) that's the color I feel. Like it's my fault that Matthew is sick because when Abby and
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I fight, the yelling hurts Matthew's head. Scared I think of all the bad things that could happen to me. When he's gone, I'll have nothing to do. With him, it's very fun. Without him here I'm bored. When he's sick it's like he's not even here. Wonder Sometimes I wonder how it's going to be in the past without him. Maybe okay, maybe terrible, maybe good. In my dreams I think about how it's going to be. I never finish my dreams because Matthew wakes up and I have to go get my mother or father. Alone I feel like crying. Stupid Everyone annoys me. When I finally get to talk to my mother, Matthew's beeper goes off. I just want them to be with me a little, not a lot. Sorry for him for being sick. Wish that he get better. If I had one wish, I would wish for no one in my family to get sick. If I had to choose money or family, I'd choose family. What was the one I skipped? Hopeful? There's not really anything to say. Helpful? I can't help sometimes I can only for little things. [Do you have hope?] That he might just get very better .
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Fig.8.6 Erin My Mind, March 18. (See plate 10.) |
Erin's mandala is suffused with anticipatory grief, wherein the tenses of time (past, present and future) and Matthew's presence/absence intermingle. She kept confusing hopeful with helpful; it was clear that she had trouble holding on to her hope it eluded her grasp.
Sibling issues highlighted in Erin's statement:
Anticipatory grief figures consciously in the experience of some siblings. It is often felt most intensely by children who are close playmates, and already sense the aloneness that lies ahead not only in the family constellation, but also in their day-to-day activities.
Guilt is a frequent contributor to siblings' distress, although children do not tend to admit to it, spontaneously or easily.
Siblings' needs for time and attention loom huge to parents who are overwhelmed with the needs of an ill child; however, the siblings are more often than not remarkably reasonable in their demands ( I just want them to be with me a little, not a lot )
Hope pervades all, including intense grief.
* * *
By the fourth session, Matthew was able to draw a picture that clearly acknowledged his own vulnerability (Figure 8.7): A bad monster that scared everybody. He hurts people with his big nails. No longer did he single himself out as being immune to the threat. He now reported pain quite emphatically, as in: Mummy go get my pain medicine NOW. He often commented on whether he was having a good or a rough day. ( Rough was a word that his mother often used.) At this point, there was an exact correlation between his open reporting of his own symptoms and the inclusiveness in his drawing ( monster scared everybody ).
The following drawing (Figure 8.8) of jumping and rolling in the grass and picking flowers like I did last summer reflected the fact that Matthew's pain was now well controlled and he was much calmer. He had begun to eat again, and was sitting up unassisted at the computer. His good-bad list (dictated) was:
bad
the booboo came but it went bye-bye
spitting up a whole bunch of mucus makes me sad
when I hurt, I cry
when birds scream outside, it hurts my head
good
I went downstairs and sat up and nothing hurt
I eat Mummy's soup
I sit up in my blue chair
I watch cartoons on the couch
I play on the computer
me better
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Fig.8.7 Matthew Bad Monster, March 25. (See plate 11.) |
At this point, the family and close friends all observed how much more relaxed Matthew was, and that he seemed busy in his life, however restricted. He's playing again! reported his parents with pleasure.
Children generally like to make lists, and if the bad is counterbalanced even to a limited degree by the good they often willingly engage in the activity. Older children enjoy writing the lists themselves, using colored pens, stickers, other
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decorative details to make the threatening content more approachable.Play and learning define quality of life in childhood. Parents instinctively note their child's involvement (or lack thereof) in play activities as a significant marker of his or her sense of well being.
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Fig.8.8 Matthew Grass and Flowers, April 2. (See plate 12.) |
Over the month of May, Matthew talked more openly about his emotional state. For example, after watching a television program, he talked repeatedly about a cat that went away and didn't see his mother anymore: He's dead. I don't like that show. It scared me. Through the story of the cat as a vehicle, he was able to express his fears of separation and anticipatory grief. His mother discussed how the cat would see his mother again, but in a different way an explanation that mirrored her belief in reunion after death, and gave Matthew much comfort. At the same time as he reported that he couldn't ride his bike anymore because me sick , he talked about wanting to walk again. A picture of: Sand. Slide coming out of a house. Something to climb horses and boats (Figure 8.9) led the mother to realize that he was thinking about the park. As a result, the parents took him to the park that weekend in his special stroller.
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Fig.8.9 Matthew Slide, Horses and Boats, May 15. (See plate 13.) |
It is not uncommon that a serendipitous event or trigger (e.g. television program) provides the opening for children to disclose their deepest anxieties, without ever having to identify them explicitly as their own.
The co-existence of realistic appraisal (not being able to ride his bike) and hope (wanting to walk again) are in constant flux with children; the adults need only follow.
By early June, Matthew's condition was clearly deteriorating. He was having increased levels of pain, as well as more breakthrough episodes. After completing his picture, I asked him what it was. For the first time, he could (or would) not come up with a title. He said flatly: I don't know that (Figure 8.10) I suggested that perhaps the picture was of his booboo that was hurting; he yelled NO. In fact, he was expressing a lot of anger: Why do I have that booboo in my head? What is it in my head? as well as sadness: I'm very sad poor me. His refusal to put a title on his drawing reflected both his physical and emotional vulnerability. Furthermore, the intensity of his anger may have even scared himself (and thus his adamancy about not naming it). However, the security in his parents' presence was intact: When I feel the booboo hurting
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me, Mummy calms me down. I call on the beeper and she and Daddy stay with me.
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Fig.8.10 Matthew I don't know that, June 5. (See plate 14.) |
The constellation of anger, fear, and sadness/grief is in one form or another universal to all children facing death. By providing a safe environment for the expression of these feelings (whether it be within the family and/or a psychotherapeutic context and/or another professional relationship), their intensity can be mitigated and contained. The reassurance of family and professionals' ongoing availability and presence allows the child to remain connected even while pulling inward.
Matthew's last drawing was done the day before his death. Although he was very weak and no longer even watched television, when I asked him if he wanted to do a drawing, he gave his usual response: Sure. He entitled his picture: Outside yellow sun and trees. (Figure 8.11) He died peacefully the next morning.
The family was intensely grateful for the months that Matthew was at home, when they, as part of the palliative care team, provided him with optimal care.
Thank you for giving me aliveness. (6-year-old child) [5, p. 167]
Even when life itself cannot be guaranteed, psychotherapy may give aliveness to the child for however long that life may last. Through the extraordinary challenges posed by life-limiting illness, the children develop a precocious inner wisdom of life and its fragility. Yet the spirit of childhood continues to shine through both their vulnerability and their resilience.
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Fig.8.11 Matthew Outside Yellow Sun and Trees, June 11. (See plate 15.) |
Notes
* Sections of this chapter have been adapted with permission from the University of Pittsburgh Press from: Sourkes B: The Deepening Shade: Psychological Aspects of Life-Threatening Illness and Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness.
References
1. Sourkes, B. The Deepening Shade: Psychological Aspects of Life-Threatening Illness. Pittsburgh, PA: University of Pittsburgh Press, 1982.
2. Institute of Medicine. When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. Washington DC: National Academy Press, 2003.
3. Jelalian, E, Boergers, J., Spirito, A., and Sourkes, B. Psychologic aspects of leukemia and hematologic disorders. In D. Nathan, S. Orkin, D. Ginsburg and A. Lock, (eds.) Nathan and Oski's Hematology of Infancy and Childhood (6th edition). Philadelphia, PA: Saunders, 2003, pp. 1671 83.
4. American Psychological Association. Task Force Report on Children and End-of-Life. (in preparation).
5. Sourkes, B. Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. Pittsburgh, PA: University of Pittsburgh Press (Published in Great Britain by Routledge), 1995.
6. Sourkes, B. The child with a life-threatening illness. In J. Brandell, (ed.) Countertransference in Child and Adolescent Psychotherapy. New York: Jason Aronson, 1992, pp. 267 84.
7. Rait, D. and Holland, J. Pediatric cancer: Psychosocial issues and approaches. In Wiernik, (ed.) Mediguide to Oncology, Vol. 6, 1986.
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8. Sourkes, B. Facilitating family coping with childhood cancer. J Pediatr Psycholt 1977;2(2):65 7.
9. Coles, R. The Spiritual Life of Children. Boston, MA: Houghton Mifflin, 1990.
10. Terr, L. Too Scared to Cry. New York: Basic Books, 1990.
11. Davis, M. and Wallbridge, D. Boundary and Space: An Introduction to the World of D.W. Winnicott. New York: Brunner/Mazel, 1981.
12. National Hospice and Palliative Care Organization Website. www.nhpco.org. See: ChIPPS 0.8169 Bibliography Summary of the Ethics and Decision-making Subgroup.
13. Aldrich, C.K. Some dynamics of anticipatory grief. In B. Schoenberg, A. Carr, A. Kutscher, D. Peretz, and J. Goldberg, (eds.) Anticipatory Grief. New York: Columbia University Press, 1974.
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