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PART IV The Use of Medical Play With Terminal Illness in Children

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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http://taylorandfrancis.com

CHAPTER 11 Child-Centered Play Therapy With Children Who Are Dying Kristie Opiola and Dee C. Ray

We are multifarious creatures, forever becoming more of who we might be. —Haugh (2012)

Even in the face of death, children work toward safety, health, creativity, and relation- ship. Children who confront life-limiting circumstances may suffer from physical and psychological pain, yet they maintain the biological motivation to enhance their under- standing and ways of being. We, as therapists, can trust that children who are dying strive to move toward greater functioning even under such challenging conditions. Like the bloom of the fl owers in the desert, a hospitalized child encountering death and dying struggles to break through austere realities to experience the healthiest version of life and peace in death. The therapist’s responsibility is to provide a relationship that fosters and supports the child’s struggle, allowing the child to access the biologi- cal force to enhance self in the midst of what may be considered the harshest of life’s conditions.

Child-centered play therapy (CCPT) is recognized in the medical community as an intervention that meets a child’s developmental needs while facilitating the child’s natural progression toward self-acceptance and enhancement. Children naturally communicate through play, therefore “play therapy is a developmentally and cultur- ally responsive intervention particularly suited to treat young children’s social, emo- tional, and behavioral problems” (Bratton, 2013, p. 30). Specifi cally, CCPT identifi es the safe and trusting relationship between child and therapist as vital to the healing process. CCPT is a therapeutic approach that relies on the interpersonal relationship between a child and trained play therapist that utilizes the child’s natural medium of communication—play—to facilitate the development of a safe environment for the child to fully express and explore his or her feelings, thoughts, experiences, and behav- iors (Landreth, 2012). In this chapter, we present CCPT as a responsive approach for terminally ill and dying children. In the medical setting, where children are likely to lose a sense of autonomy and control over their actions and bodies, CCPT offers a

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child the experience to feel fully capable to direct his or her process of grief, loss, and pain. Children who encounter imminent death have little control over their biological processes, but they maintain the ability to direct how to cope with their losses in self- enhancing ways.

REALITIES OF CHILDREN WHO ARE DYING

The death of a child is an uncommon, diffi cult, and painful event (Doka, 1995). Approximately 400,000 children die each year in the United States (Heron, 2016), with over 20% of deaths due to complications or progression of complex chronic conditions (Niswander, Cromwell, Chirico, Gupton, & Korones, 2014). The leading causes of disease-related deaths for children under the age of 15 are chromosomal and congenital abnormalities, malignant neoplasms, heart disease, respiratory dis- tress, infl uenza, cerebrovascular disease, and neurodegenerative diseases. The death of a child can be sudden, such as in accidental or homicidal deaths, or can occur from a chronic illness, such as cancer. Although on the decline, cancer is the leading cause of death by disease in the United States. Dying children who enter the terminal phase of a chronic or life-threatening illness no longer receive aggressive treatment options and the focus turns from curative to palliative or hospice care (Pearson, 2005). At this point in care, the emphasis is on optimizing quality of life and managing pain and disease symptomology (Friebert & Williams, 2015). For other children, diagnoses may be terminal, such as spinal muscular atrophy (SMA), and the child’s care focuses on quality of life instead of curative treatment (Hynson, 2012). Palliative care services are a complementary service and address the holistic needs of dying children, their family members, and the community through a multidisciplinary medical team. The foci of palliative care providers are the physical, emotional, intellectual, and spiritual needs of dying children and their families (Pearson, 2005). Friebert and Williams (2015) noted that the National Hospice and Palliative Care Organization (NHPCO) reported most children die in hospitals, but there is an increased trend of planned at-home deaths for children. Feudtner and colleagues (2011) affi rmed NHPCO’s report by noting that an increasing number of children with complex chronic conditions planned to die in a home setting instead of a hospital setting over the past 15 years.

Impact on Child

Early life experiences can impact the child’s ability to cope with and overcome chal- lenging situations. Children who experience medical challenges early in life can have behavioral, emotional, cognitive, and social problems. Children at end of life have many concerns and need help to process through their fears and curiosity (Pearson, 2009). Children with a terminal or life-ending illness often suffer from associated and easily understandable emotional disorders, such as anxiety and depression (Aldridge & Sourkes, 2012). According to Weaver and her colleagues (2016), children’s anxiet- ies are heightened when children’s fears about treatment and illness are not addressed. Anxiety can intensify as the terminally ill child slowly worsens and lives with the

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uncertainty of life and death (Aldridge & Sourkes, 2012). Children also experience heightened anxiety due to their concrete and literal cognitive abilities. When caregivers do not openly communicate treatment related information to children, they “are left to wonder, interpret and imagine what is happening to them” (Orloff & Jones, 2011, p. 212), potentially causing greater fears and misunderstandings. Therefore, children need open communication about diagnosis, treatment, and prognosis. Children benefi t from small amounts of information explained on a developmentally appropriate level. Children who have battled chronic illness for a period of time often comprehend more about illness and health than their same-aged peers. Terminally ill children are often perceptive and instinctively read nonverbal cues from their parents and health care providers. They are able to notice changes in the parent’s affect and behaviors that indicate changes in their care and often understand changes in their health care before a parent tells them.

Developmental Understanding

A child’s response to death is impacted by overall developmental cognitive under- standing based on the child’s age and cognitive functioning (Pearson, 2009). Cogni- tive understanding of death progresses across age ranges. Researchers confi rm that by the age of 4, children have a considerable understanding of some concepts related to death, such as fi nality of life and non-functionality of being dead, yet other concepts such as causality and universality of death are grasped later, around the ages of 7 to 10 (Bonoti, Leondari, & Mastora, 2013; Rosengren, Gutierrez, & Schein, 2014). Children’s previous experiences, family communication style, and culture can also con- tribute to and infl uence a child’s understanding of death and dying. Children who have previous experience with death understand death at earlier ages and with a greater sense of maturity, specifi cally the concept of causality (Bonoti et al., 2013). Because causality is a later-embraced concept for children, their egocentricity may contribute to them believing that their actions led to the progression of their illness or impending death. At early ages, children are concerned and develop understanding regarding the biology of death, aligning with their more concrete cognitive abilities. At later ages (over 7), children embrace more spiritual and religious conceptualizations of death and grow in their beliefs regarding life continuity beyond death (Rosengren et al., 2014) indicating strong cultural and religious infl uences on understanding of death for mid- dle childhood. Children’s understanding of death is infl uenced by parents’ willingness and openness to discuss death. Parents often operate under the myth that because children cannot developmentally comprehend death as a concept, the subject is best avoided. However, children’s curiosity regarding death and their cognitive abilities to understand aspects of death indicate that open discussion is useful and at times nec- essary in order to avoid sending the message that death is not an embraceable topic. As school-age children mature, they fi nd it challenging to speak about death directly, perhaps due to family and cultural messages that death is a scary and avoidable topic. Children may subtly ask questions or externalize their discussions about death to avoid direct discussion. Providing both verbal and non-verbal methods of approaching the subject of death is critical for parents, caregivers, and therapists.

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Loneliness and Isolation

Two common emotions expressed by terminally ill children are loneliness and isolation (Aldridge & Sourkes, 2012). These children spend a large amount of time away from home and their peers. As the child’s disease progresses, the child often stops attend- ing school due to frequent hospitalization and specialty medical visits or due to pain management issues (Orloff & Jones, 2011). They are less involved in social activities and events and have fewer interactions with their same-aged peers. They spend sub- stantial time with adults instead of same-aged peers. Due to long hospital stays and potentially needing to travel for services, terminally ill children often spend less time with the siblings as well, increasing their loneliness. Many terminally ill children seek control over their environments (Aasgaard, 2006) to keep loved ones near and avoid separation or seek protection from parents and caregivers (Hynson, 2012). Control is often manifested through excessive demands and commanding others to bring about a sense of safety in the environment.

Loss

Terminally ill children experience a multitude of losses in relation to their illness (Aldridge & Sourkes, 2012), particularly that of normalcy. Illness is unpredictable and the child’s predictable and safe world changes as his or her disease progresses. The child also experiences a loss of one’s ability as the disease progresses. For instance, a school-aged child may lose the ability to control his or her bowels and along with it, the trust and confi dence in his or her body to function normally. As the child physi- cally deteriorates, the child’s autonomy is also lost. The child becomes more dependent on others for daily care. Strong emotions often accompany loss. Children may feel sadness, frustration, resignation, or anger toward the changes. Anticipatory grief is a common reaction to loss and entails the process of grieving in advance when a person knows loss is inevitable (Wolfelt, 1996). According to Wolfelt, grief is a natural and necessary process of coping. Grief and loss are two sides of the same coin and often accompany one another. Children express their grief and reaction to loss in multiple ways, with young children typically processing through their grief through the use of play (Pearson, 2009).

Preparing for Death

In preparing for death, Sourkes (2006) highlighted children’s preoccupation with time. They appear eager to complete tasks to accomplish important projects. For instance, one 9-year-old child created a list of her favorite items and identifi ed to whom she planned to give the items. A 12-year-old female made and decorated picture frames with her signature drawings for each of her family members as a legacy project. A 10-year-old child began to ask his mother to read to him. The child’s request created alone time for him and his mother. The child appeared to create meaningful interac- tions with his mother. Each of these activities was an important step for the child so they felt prepared to die. As a child nears death, the children may turn inward and pull

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away from their external world (Aldridge & Sourkes, 2012). They may talk less and retreat from interacting with others. During this time, children still enjoy the presence of a safe person.

Communication

Children and parents may hide their feelings to protect each other. Aldridge and Sourkes (2012) highlight the importance of emotional support. Children seek support from a variety of people. They may seek emotional support from a parent, caregiver, medical personnel, or psychosocial team member. Children tend to test the acceptance and emotional readiness of providers as they seek support. When children identify a person as safe, they may share their concerns, fears, and questions. Children are curi- ous and may ask many questions (Pearson, 2005). It is not uncommon for the child to repeat the question several times or ask several people the same questions as they seek understanding and to increase their trust that others are telling them the truth and not protecting them. A child’s ability to cope with diffi cult emotions is improved when they have a safe person with whom they can share their concerns (Sourkes, 2006). Early and prompt referrals to mental health professionals can alleviate long-term emotional suffering for children (Weaver et al., 2016).

Impact on Families

Families whose children have a life-threatening diagnosis experience a multitude of transitions. Each family member experiences these transitions of illness-related identi- ties in unique ways (Hynson, 2012), and this process typically begins immediately upon time of diagnosis. The child who is sick is diagnosed, then transitions from health to illness. The child also makes a transition from child to patient, while the parent transi- tions from ‘typical’ parent to a parent of a sick child. Over time, additional transitions occur. Parents take on a greater role in providing medical care at home and transition from parent to temporary nurse. Families may transition from spending most time at home to frequent visits to the hospital or doctor’s offi ces. For children with chronic and potentially life-threatening illnesses like cancer, they may experience a transition from diagnosis to cure to incurable prognosis. No matter the transition, the families experience an array of psychosocial needs.

The effects of chronic and terminal illnesses on a family can be vast and devastat- ing. The loss of a child is uncommon and parents frequently experience long periods of emotional distress and chaos (Pearson, 2005). According to Doka (1995), parents often experience shock, disbelief, helplessness, panic, fear, anger, emptiness, with- drawal, and longing. Parents’ emotions come in phases of predictable or unpredict- able (Hynson, Aroni, Bauld & Sawyer, 2006). Parents reported predictable emotions are easier to handle and they experience less anxiety when they know how they will feel. Unpredictable emotions are diffi cult for parents to manage and cause higher anxiety for parents. Foreman, Willis, and Goodenough (2005) discussed parents’ expressions of sadness and isolation, as they did not feel that they could share their emotions with their extended family and friends because they do not feel understood

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or their extended support systems are not empathic to their needs or diffi culties. For instance, parents of children with cancer are inundated with many stressors that place them at risk for emotional diffi culties (Streisand, Kazak, & Tercyak, 2003). Initially, parents receive signifi cant support from friends and family. Unfortunately, as treat- ment persists, support often decreases and families feel like they are fi ghting the battle alone (McGrath, 2001). According to Hynson and colleagues (2006) and Weaver and colleagues (2016), parents desire social support and wish more opportunities existed for support groups with other parents experiencing similar losses. Providing parents with resources and connecting them with trained parent partners may alleviate their feelings of isolation.

Some of the key losses for parents of terminally ill children are the loss of identity, security, and way of life. The parent’s role of protector and nurturer is challenged by a child’s illness (Hynson et al., 2006). Their long-term dreams, hopes, and desires for their dying children are forever changed and often lost. Parents struggle with anxiety and the unpredictable nature of death while trying to comfort and support their child (Best, Streisand, Catania, & Kazak, 2001; Manne et al., 1996). Their daily routines are altered, and they experience increased emotional and physical demands.

Parents who care for dying children experience an increased demand on their time, efforts, fi nances, and coping skills (Robinson et al., 2006). Parents of terminally ill children are forced into many different roles (Orloff & Jones, 2011). Frequent in-home medical visits, administration of medications, monitoring appropriate and healthy diets and fl uid levels, and management of the stressors and demands of daily family life add to a parent’s stress level. Parents fear the strain of multiple roles and demands placed on them due to their child’s terminal illness prevents them from appropriately attending to other responsibilities and causes them to feel as if they are failures (Weaver et al., 2016). As their terminally ill child deteriorates, parents’ focus streamlines to the needs of the ill child and they may struggle to meet the needs of other children (Orl- off & Jones, 2011). Marital relationships may become strained as the parent is more focused on their parenting role than nurturing their spousal role. Commonly, parents feel guilty as they are unable to respond to everyone’s needs.

Siblings often become forgotten within the family (Orloff & Jones, 2011). Accord- ing to Houtzager and colleagues (2004), siblings often experience feelings of isolation, anxiety, uncertainty, jealousy, guilt, anger, and loneliness. The family structure and routine can be permanently altered when a parent’s focus is on the dying child. Siblings may be forced to give up extracurricular activities because family times are allocated to taking care of the dying sibling (Pearson, 2005). Within the family structure, sib- lings are not typically involved in the treatment process—they often stand by and wit- ness their dying sibling’s suffering (Orloff & Jones, 2011). Changes in mood, such as withdrawal, attention-seeking behavior, and mood swings can indicate negative coping strategies, which are common in siblings (Wolfelt, 1996). Often, siblings feel unim- portant as parents may or may not be physically present at activities (Orloff & Jones, 2011). Siblings may feel confused by their parent’s emotional distance and misinterpret the reason for the change in behavior. In addition, parents may employ extended fam- ily and close friends to care for siblings, increasing unpredictability in who will pick the child up from school or where the child may sleep that night. Siblings, in particular

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girls and older siblings, take on more responsibility to help parents, and therefore suf- fer more from restrictions on their daily lives and overall development.

Because parents and siblings are dealing with their own grief and unreasonable stress, they may often be limited in their presence and full acceptance of the emotional needs of a child who is dying. The child who is ill may need someone to sit quietly or someone who will simply play with him or her without discussion. The child who is dying may need to openly play out or discuss the details of death, or the realness of pain and struggle. When family members are focused on helping the child feel better and maintain hope regarding a cure, the child may feel misunderstood and discon- nected, thereby increasing a sense of isolation and belief that something is unaccept- able about how he feels or thinks. The therapist is in the position of being able to provide a safe environment that allows full expression for both a terminally ill child and family members.

MENTAL HEALTH PROVIDERS

Children who are dying receive services from medical and psychosocial professionals. Each professional has a unique role in supporting the dying child and his or her family. Psychosocial team members include social workers, child life specialists, psychiatrists, psychologists, and counselors. A collaborative, team approach to care services is the best approach (Weaver et al., 2016). Many of the providers function from a medical model and attempt to cure or resolve the child’s grief. In the medical model, the responsibility to create change or cure the patient is placed on the professional. The most common approach to mental health services in the health care setting is cognitive therapies (Orloff & Jones, 2011). Sourkes (2006) identifi ed that many dying children begin therapy ser- vices because of the stress related to their illness. The professional may utilize prescriptive cognitive activities to help the child grieve and cope with pending losses. Psychosocial care is not formulaic and requires fl exibility (Aldridge & Sourkes, 2012). Wolfelt (1996) expressed concern for formulaic and prescriptive approaches, as he believes grieving chil- dren need a safe space to mourn with a companion. He believes that prescriptive models underestimate a child’s ability to grow and heal. In addition, prescriptive and cognitive activities have a specifi c focus and limit the professional’s opportunity to learn the child’s experience and fully hear and understand the child’s perspective.

Aldridge and Sourkes (2012) encourage mental health professionals to follow the child’s lead in the therapeutic relationship. Mental health services should provide chil- dren with a space where they can process their feelings, fears, and uncertainty (Orloff & Jones, 2011). Bluebond-Langner (1978) encouraged mental health professionals to provide a safe relationship where children can openly talk or play about their illness and prognosis. The professional maintains the child’s need for privacy and desire to protect their parents from diffi cult conversations. Counseling offers the child a safe space to gain awareness of one’s feelings and make sense of the intangible parts of grief and loss (Orloff & Jones, 2011). Glazer and Landreth (1993) encouraged counselors to provide a warm and accepting environment where children can resolve their fear, pain, and guilt about death.

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CHILD-CENTERED PLAY THERAPY

Child-centered play therapy (CCPT) is a developmentally responsive therapeutic approach to help children with an array of emotional, behavioral, and social concerns (Axline, 1969; Ray & Landreth, 2015), and one of the most widely utilized therapeu- tic approaches for play therapists when working with children (Lambert et al., 2007). CCPT therapists believe in the power of the child-therapist relationship as a catalyst for therapeutic change for terminally ill children processing through and coping with challenging feelings, experiences, thoughts, and behaviors related to their impending death. CCPT is based on the work of Carl Rogers, who believed people are predis- posed to strive toward growth and fulfi lment of their potential when in a nurtur- ing and supportive environment (Rogers, 1951). The central concept of CCPT in the context of working with children who are terminally ill is the actualizing tendency. The actualizing tendency is the biological force universal to all humans and unique to each individual that moves the person in a constructive and growth-enhancing direc- tion (Bozarth, 1998; Haugh, 2012; Wilkins, 2010). When a child encounters adverse environments and circumstances, the actualizing tendency can be stunted or distorted, seeking to continue growth but in a way that can be self- or other-destructive. In the case of a child facing a chronic, life-limiting condition, she will naturally seek to enhance life as it is. However, if the child encounters interactions or circumstances that send the message that her natural ways of responding are unacceptable, she will develop coping skills that are incongruent with the actualizing tendency. For example, if a child attempts to talk about being scared to die and the parent responds by telling the child that he will be okay and there is no need to worry, the child receives the mes- sage that there is something wrong with the way he feels or thinks. Or, if a child plays out a funeral scene and the parent immediately changes the play to something more fun, the child may begin to think that she cannot trust her natural way to communicate to the parent. In response, the child feels less control, a lack of trust in self and others, and may respond by engaging in behaviors that send these messages.

In response to the child’s need to work in alignment with this actualizing tendency, the therapist provides an environment in which the child’s direction is valued as the road to healing. The CCPT therapist presents as a person who is genuine, open to self- experiences and the experiences of others, and capable of transparently sharing herself (Ray, 2011). The therapist experiences and communicates unconditional positive regard to the child, assured in the belief that the child has what is needed within himself to move toward healthy functioning and the importance of honoring the perception of the child. Finally, the therapist communicates empathic understanding to the child so that the child feels fully understood and accepted in the moment. It is through relationship and real- ization of full acceptance that the child is able to let go of negative behaviors developed from being disconnected with the self-actualizing tendency and initiate changes that are aligned with the actualizing tendency and lead to self-enhancing behaviors.

The Focus of CCPT

The focus of CCPT is on the child, not the child’s problematic behaviors or challeng- ing experiences (Landreth, 2012). According to Rogers, “the best vantage point” to

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understand the child is from the child’s internal frame of reference (Rogers, 1992) because children, when truly allowed and encouraged, are naturally the experts of their own lives, feelings, and concerns (Breemen, 2009), which is often expressed through their play (Landreth, 2012). In CCPT, play is recognized as the manner in which chil- dren communicate and express themselves (Axline, 1969; Landreth, 2012), no matter their spoken language, cultural background, and developmental processes (Sweeney & Skurja, 2001). Play is an essential component of childhood and a determining fac- tor in children’s overall mental health and well-being (Elkind, 2007; Ginsburg, 2007). Developmentally, young children struggle to verbalize their concerns and feelings to others. Play offers children a physical way to ‘talk out’ their diffi culties and experiences (Axline, 1969). Because death is an abstract concept that involves multiple subconcepts, children who are dying need both non-verbal and verbal ways to connect their concrete experiences with the idea of death. CCPT is typically intended for children 3 to 10 years of age. In play therapy, children are provided opportunities to express, share, com- municate, explore, and create meaning of themselves and their worlds; to master their inner struggles, feelings, desires, and perceptions to gain a fuller understanding of their internal experiences (VanFleet, Sywulak, & Sniscak, 2010). Development and health are enhanced when children are in an environment with an affectionate, empathic, and non-judgmental adult who relates to the child through play (Ginsburg, 2007; Ray & Landreth, 2015). Therefore, the relationship is the catalyst for therapeutic change.

The CCPT Therapist’s Role

The primary role of the play therapist is to create an accepting, caring, and trusting relationship with the child so that the child feels safe to explore and express their concerns (Wilson & Ryan, 2005). The therapist believes in the child’s ability to direct play where it needs to go for self-enhancement and follows the child’s lead in the play session (Landreth, 2012). The therapist is patient, understanding, and accepting of the child’s discovery of his or her inner self (VanFleet et al., 2010). Play therapists are very active and attuned to the deepest level of each child’s needs, feelings, and experiences, and genuinely respond and convey unconditional positive regard and empathy to the child (Rogers, 1992). Landreth describes the therapist’s attitude as one of expectancy and “anticipation as the vulnerable inner person of the child emerges” (p. 81). The therapist provides a permissive environment free from threat, judgment, or evalua- tion, so the child’s actualizing tendency moves toward self-realization (Axline, 1969). A non-threatening and permissive environment provides children with opportunities to direct and explore their worlds through play. The playroom is set up with carefully selected play materials (Landreth, 2012) including nurturing, aggressive, real-life, and expressive toys and materials. The child is in the lead and is free to play with any toy he or she would like, sending a message that the entire child is welcome and accepted in this special space (Ray & Landreth, 2015). Children are not rushed or prompted to talk about particular experiences, feelings, or behaviors. Instead they are given time to learn, practice, grow, and heal (VanFleet et al., 2010). Given the time and space needed, a child can play out and bring a variety of feelings to the surface, helping them relax and gain mastery over oneself. Once the child’s feelings and experiences are out in the open, the child can “face them, learn to control them, or abandon them” (Axline,

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1969). According to Landreth (2012), “the permissive environment with an accepting and caring therapist allows the child the freedom to explore, test boundaries, share frightening parts of their lives, or change” (p. 70).

In the context of children who are chronically or terminally ill, CCPT structure is adjusted to fi t the needs of the child. Although traditional CCPT is provided in a play- room with specifi c materials and space (Landreth, 2012; Ray, 2011), toys and materials may be limited to a travelling bag or box for use in a hospital room or home. Dying children and their families often require fl exibility regarding the location for therapeutic services. A traditional offi ce setting may not meet the needs of the child. Play therapy services may not follow the traditional therapeutic hour due to the dying child’s stamina (Aldridge & Sourkes, 2012). Sometimes, 20 minutes may suffi ce for a child who is in pain or experiences fatigue. Setting weekly appointment times may not work appropri- ately for this population. Calling ahead and checking to see if the child is awake may prevent unproductive clinical time, as fatigue and lethargy may cause children to sleep during a scheduled session. The most important feature of CCPT is providing a relation- ship in which the child feels fully accepted and able to express all feelings and thoughts; other structural components can be modifi ed to meet the child’s needs.

CASE STUDY: LINA

The following case study is drawn from the clinical experience of the fi rst author (KO) and exemplifi es ways therapists can incorporate child-centered play therapy and par- ent consultation into their work with terminally ill children and their families. This case study is a compilation of several children in order to maintain confi dentiality and is placed in hospital and clinic setting.

Medical Background

Lina, a 7-year-old Latina American female, was diagnosed with a brain tumor at the age of 5. For the past two years, Lina received a mixture of aggressive chemotherapy and radiation, as well as surgery, which caused her to lose her hair and left a large scar on the left side of her head. Lina typically spent a week at the hospital once a month for medical treatment. Her aggressive treatment was mildly effective, but Lina’s tumor became unresponsive to medical treatment and was growing. Lina’s doctors informed her parents that there were no more treatment options to cure Lina’s cancer. The medi- cal team and her parents decided to transition Lina to palliative care. Her parents stated they were open to trial studies if Lina met study criteria. Her parents did not want the doctors to tell Lina about the change in her condition out of fear she would give up hope and stop fi ghting her disease.

Background Information About Lina

Lina was an active child who enjoyed playing with dolls with her friends and siblings. The medical team often described Lina as a positive and outgoing spirit who brightened

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the medical unit. She was very playful and enjoyed when the medical staff engaged with her in play. Lina loved music and was often seen dancing in her room or around the hospital. It was not uncommon to see Lina at the nurses’ station sharing her most recent dance moves with the nursing staff. Lina also liked to play ‘tricks’ on the medical staff.

Lina’s immediate family consisted of her parents and two siblings. They lived approximately two hours from the hospital, and her siblings were not able to visit her as often as they would have liked because of the distance. Lina’s mother was a stay-at- home mother and typically accompanied her to clinic visits and hospital stays. Lina’s father worked for a large company and spent substantial time at work to compensate for their increased medical bills. Lina’s father had stated his company and co-workers were very kind and donated their sick leave so he could be at the hospital as much as possible. Lina’s younger brother and older sister were very close to Lina and struggled when she was away from home. They often called the hospital and checked in with how she was doing. Periodically, the siblings were able to come to the hospital and play with Lina. In addition, Lina had a large extended family that provided support and watched Lina’s siblings when Lina was in the hospital. Lina was very close to her maternal grandparents and a paternal aunt, who occasionally stayed with her at the hospital so her parents could spend time at home with her siblings.

Cause for Referral to Play Therapy

Lina had told her medical team that she was very tired. She received encouragement to take a nap, and she had been assured that if she was struggling to sleep, they could prescribe medication to help her sleep. Lina looked disappointed when her parents and medical team responded in this way, and she became verbally aggressive toward those who tried to console her. The nurses observed her getting angry with her mother and lashing out at her when she tried to help her. In addition, Lina struggled when her parents left, and the medical staff described her as clingy. Her nurses and parents were worried because these emerging behaviors were out of character for Lina. Her parents told the medical staff that they were all tired and were hoping for more time at home, but Lina’s pain was best controlled in the hospital. I was fi rst contacted by Lina’s nurse practitioner to provide services to Lina to help with her bursts of anger toward her parents and the nursing staff. Initially Lina came to the playroom. When Lina’s disease progressed, I brought my traveling toys to her bedside. I had three goals for her time in play therapy. First, I hoped our time together would provide Lina with a safe and accepting space where she could share, freely emote, and express her fears, worries, and needs. I wanted to provide Lina with companionship as she explored diffi cult feel- ings and experiences in hope that she did not feel alone or unaccepted. Last, I hoped to convey my belief and trust in her to lead her play where she needed it to go.

Lina in Play Therapy

I introduced the playroom to Lina by saying, “In here is the playroom and you can play with the toys in lots of the ways you like.” Initially, Lina was skeptical of play therapy and hesitantly played with a variety of toys in the playroom. She

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played briefl y and then looked at the play therapist and watched as she refl ected and responded to her play. Lina asked a fair number of questions and asked if it was OK for her to play with certain toys. Lina initially played in the sandbox, and would scoop sand and attempt to build castles and mountains. She became frustrated when her creations would not hold together, telling the play therapist the sand was stupid. Lina slowly began to talk and share more about herself. She would ask if I knew she had a sister or brother and if I knew her favorite toys. She also wanted to know why she was coming to play therapy. Lina’s questions indicated her uncertainty about me and my role in her life. I refl ected Lina’s curiosity of coming to play therapy by responding, “You’re curious about me and unsure about this space.” I did not give her specifi cs of why she was referred to play therapy because I did not believe it was necessary for her growth and healing. Instead, I connected with Lina’s emotions and uncertainty about me and our relationship, refl ecting her desire to understand her situation.

Lina’s play shifted from the sand to the kitchen area, and she created a variety of meals to eat. Eating was a big issue for Lina because her medication caused large sores in her mouth. The nurses shared that she would always order huge meals, but after trying them she would rarely eat much. Lina started to share how close she was to her family and did not like being so far away from them. She stated that her mother made delicious dinners and she missed her cooking most of all when they were in the hospital. Lina continued to cook meals for three sessions and then created the meal and would call her siblings on the phone while she pretended to eat. She would role- play discussing the day and what her siblings were up to during the day. In parent consultation, I shared Lina’s theme of connectedness with her mother and how she was missing mealtime traditions. Her mother shared that family mealtime was very important to the family and they all missed the opportunity to talk while Lina was in the hospital. Her mother and I brainstormed ways to recreate a similar tradition while Lina was hospitalized. With the help of the child life specialist, I provided Lina with a speaker phone for her room and meal delivery times with her family’s dinner schedule to foster greater support for Lina while she was in the hospital or frequent stays for clinic visits.

Lina began playing out battle scenes in the sand with wrestling fi gurines. Lina shared that the soldiers were feeling tired and struggling to be so strong. I refl ected the soldiers’ hard fi ght and how exhausting it was constantly being strong. I also refl ected that the soldiers were exhausted and battle weary. Lina continued this play over several sessions. After the ninth session, Lina began personalizing this message, stating she was tired of fi ghting. Lina then began to bury the soldiers after they lost their battles. She slowly began to add fi gures and animals to the sand and would bury them. She refl ected they were lost and animals would search to fi nd their family member. Around this time, Lina became too sick to visit the playroom and play therapy sessions were moved to her clinic or hospital room.

I shared Lina’s theme of strength and battle with her parents and how she appeared to understand that she may not be strong enough to win her fi ght with cancer. Her mother was very tearful but felt that she did know, even though she tried hard to shield her from this knowledge. She shared she did not feel strong enough to start a

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207CHILD-CENTERED PLAY THERAPY

conversation about her dying, but if she asked she would discuss it with her. I refl ected her mother’s distress and emotionally supported her. I asked her mother a few ques- tions about what information she needed and about her fears about these conversa- tions. I did not push the mother to take any specifi c action and instead focused on supporting and encouraging her.

Lina began to bury the fi gures in her bedsheets. She would state that the fi gures were gone and the family members would have to move on and forget about the bur- ied fi gure. She was often sleeping during the daytime so play therapy was put on hold. Lina’s primary nurse shared that Lina was playful at night and she was often unsure how to respond to her play as she felt she was “working hard” to make sense of her impending death. I shared some refl ective listening skills and emotionally supported the nurse as she processed through her experiences. Lina rarely spoke of her impend- ing death with her parents and often appeared to protect them from her emotions. One evening while her mother took a break, Lina played with her primary evening nurse. She played out a funeral scene for the buried toy. Her nurse sat with her as she role-played the family’s eulogy for their loved fi gurine. The nurse reported to the child life specialist and me in the morning. She played this scene out with her two more times.

Shortly after this moment, Lina was suddenly more awake during the day. Her nurse would call me when she was awake and I would come down to see her in her room. On the fi rst visit, Lina asked to make a music video. She shared how she wanted the video to go and together we planned out a way to make her vision come to life. She practiced with her nurses at night and two days later we recorded her video. Lina planned a variety of dance moves for herself and her backup dancers (nurses) as she sang along with one of her favorite songs. At this same time, she began to talk more freely with her mother about her impending death. Although she wanted to protect her, Lina’s mother listened and shared her sadness with her daughter. They met with the hospital chaplain. She asked to plan her funeral and shared details of how she wanted the day to go. Lina died a week later.

Parent Consultation

While working with Lina, I also met with her mother every few days to check in with her and answer questions she had. I also shared general themes from Lina’s sessions. Initially, the main focus of the parent consultations was emotional support for Lina’s parents, as her mother and father were struggling with her changed behaviors and impending death. I worked closely with Lina’s social worker and child life specialist to provide support for all family members. I also shared the importance of sharing information with other team members to ensure that Lina’s mother was receiving the support she needed and helping the child life specialist know additional areas of support.

Over time, the focus of the parent consultations shifted to ways her parents could provide an emotionally safe environment so that Lina was free to discuss her thoughts and feelings around her death. I spent the majority of time listening and refl ecting emotions. I rarely provided advice as Lina’s mother was keenly aware of how to best

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support her daughter. It appeared she doubted herself and I provided her with reassur- ance as well as a person with whom she could share this diffi cult journey. Periodically, I shared some developmental tidbits, such as developmental understanding of death and common misunderstandings about death to help her mother comprehend her behaviors and understanding, and to normalize her experiences and her behaviors. In addition, the child life specialist provided Lina’s mother with similar information and support as well as information for Lina’s siblings.

Theoretical Understanding

The environment in which a child grows mediates how he or she develops his or her self-concept and self-worth (Axline, 1969). Children have a desire to feel prized, capa- ble, and valued by important loved ones, especially parents and other primary caregiv- ers. When a children’s concept of self matches their experiences, they are in a state of congruence. On the other hand, when a child is criticized and judged, the child feels threatened and will deny or alter his or her concept of self in exchange for love and acceptance from others. To maintain the acceptance of others, children rely on others’ evaluation and acceptance, believing they are worthy when they meet the expectations and demands of their caregiver, referred to as conditions of worth. Internal divisions between the child’s experiences and child’s concept of self, known as incongruence, continue and cause the child to feel vulnerable and anxious. Children express their incongruence in their behaviors and emotions (Ray & Landreth, 2015).

In the context of this theoretical discussion, Lina struggled with the issues com- mon to children who are dying. She was lonely, missing her siblings, peers, and time with other family members. She missed traditions and rituals, such as mealtimes, that gave structure and meaning to her life. Meals also seemed to be a way that her mother shared her nurturing and how she received such nurturing. Her loneliness was exac- erbated when she could no longer interact physically with the nursing staff as she had done earlier in her hospitalization. And her inability to share her thoughts and play regarding death with her mother and family additionally furthered her sense of isolation. She was frustrated from a lack of control over her body and her situation, which led to her intensity in reaction to frustrating experiences such as not being able to sleep. Advice, reassurance, and pain relief were psychologically inadequate to meet Lina’s emotional needs as she faced her death. In CCPT, Lina could experience an environment in which she was in control. The play sessions allowed Lina to experience control so that she would have less of a need to exert control that interfered with her medical condition (VanFleet et al., 2010). In relationship with the play therapist, Lina could have someone be with her who had no negative reaction to her play of missing her family, thinking about her death, and being frustrated with her situation. The play therapist provided her with her complete acceptance and understanding of her anger, sadness, and confusion. She made no attempt to fi x things or “make Lina feel better. By understanding and accepting that she knew what she needed to express and that all of her feelings and thoughts were valid, Lina was able to experience that she was acceptable in all of these feelings. She could further experience strength in her abilities to confront what was ahead of her, the release of the actualizing tendency. Through

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209CHILD-CENTERED PLAY THERAPY

her experiences with the play therapist and with her night nurse, Lina was also able to practice how she might express her reaction to death with her closest caretaker, her mother. It was through her relationships with her play therapist and nurse that she developed the capacity to engage her mother in what she knew intrinsically would be diffi cult for both of them. Ironically, it was an 7-year-old girl who helped her mother come to accept the death of her daughter.

The play therapist’s work with Lina’s parents and nurse were also invaluable components of the CCPT process. In CCPT, the therapist came to understand what was most important to Lina and could share these understandings with the parents. Through consultation, the therapist helped the parents fi gure out ways to respond to Lina in the ways she most needed and not in the ways they believed she needed. It was also through the therapist’s acceptance and support of Lina’s mother that she was able to provide more readily for Lina. As the play therapist accepted the mother’s feel- ings and hesitancies, restraining from giving advice and guidance, Lina’s mother felt understood and not judged; hence, she could respond more empathically to Lina on her terms. The play therapist’s work with the nurse was one of the unique features of CCPT in action. The skills of genuineness, unconditional positive regard, and empathic understanding are teachable skills to any layperson. The play therapist taught these skills to the nurse so that the nurse could serve as a therapeutic agent for Lina. In the end, Lina was engaged in multiple relationships in which she felt understood, and her way of dealing with her death was affi rmed and valued.

Therapist’s Self-Reflection

Both as a CCLS and play therapist, I learned substantially from my experiences in working with Lina and other children who are terminally ill. Several themes come to mind when refl ecting back on this specifi c experience. First, patience is very important when therapeutically working with children who are terminally ill. My anxiety and desire to help her work by rushing her processing and gaining understanding of her illness was unhelpful and not needed. Early in my relationship with Lina, I learned she had incredible inner strength and was able to work toward healing at her pace. She would appease me in moments when I interrupted her process by giving me a sly look and then continuing on her journey. These moments reminded me that I was a fellow traveler and did not have the road map to where she needed to go. I did not need to prove myself or try harder. Instead I needed to slow down so I could be fully present to follow Lina to fully understand her. Lina had a keen way of reminding me that I did not know what it was like to die, and therefore I could not prescribe what she needed. My past experiences could guide me on the common needs of dying children but could prevent me from seeing Lina’s unique and immediate needs. Lina’s needs included acceptance, patience, understanding, freedom, and empathy. Therefore, I have learned that I need to follow the child and family and meet them with expectancy. Landreth (2012) explored the importance of meeting a child with eagerness and anticipation. In my relationship with children, I agree that is it important to approach my interactions with patience, gentleness, and anticipation as the child shares their experiences, feel- ings, and understanding about themselves and their world.

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Through Lina’s play, I learned how perceptive she was, especially at a time when many medical staff and family members tried to protect her. Lina was profoundly aware of her change in prognosis even though no one had verbally told her she was dying. I believe she observed her environment and the people around her. She saw changes in their affect as well as less urgency and intensity from the medical staff to treat her ill- ness. Lina’s play was full of insight into her knowledge about her prognosis. Lina’s sand play indicated she knew she was losing her life to cancer. She attempted to understand what death was like as she buried her fi gurines and animals in the sand, as well as what it would be like for her family, especially her siblings. I got the sense she knew how hard it would be for her siblings to lose her as she played out animals searching for the fi gurines. Her attempt to console her emotional anxiety for her family was seen in her funeral scenes. Lina had a strong desire to support her family in their grief process but knew they were not ready to do so. Instead she processed it in her play. She wanted her family to be OK with her death and know it was OK to move on. Her nightshift nurse stated her eulogy was emotionally moving as she talked to her family members and shared her hopes and dreams for them. She then appeared to gain a sense of control over her impending death and appeared more comfortable and content in her knowledge that she was dying. She created a plan for ways to help her family memorialize her and remember her existence. She initiated interactions that set her plan in motion. She was gentle in her attempts to talk with her parents about her death. She asked to speak with the hospital chaplain and shared her wants for her funeral. And she created a music video to leave her loved ones with a lasting memory of her living doing something she loved, instead of her dying of cancer. I believe Lina died when she knew her family was OK with her death and when she was at peace with her prognosis.

Lina gave many subtle clues that she knew she was dying. I have learned simple statements such as “I’m tired” or comments about time may be signs the child is seek- ing opportunities to talk or non-verbally process about death. Children may make statements at odd times or when it is least expected. And a child may use humor, such as saying “I’m not dead yet” after waking up from a nap, to ease emotional tensions about death and conversing with their loved ones. It is important for therapists and psychosocial team members to look out for these subtle, vague statements or behav- iors. They are not always easy to identify, but I have found that children will repeat the process until someone is willing to listen and understand their thoughts and feelings. I have also learned that many people misunderstand the subtle cues and the child’s attempt to connect and process their understanding of their pending death. For Lina, her comments about being tired were larger than needing a nap or medication. One indication of her desire to share her emotions was her escalating anger toward others when they encouraged her to take a nap or attempted to give her medication to sleep. I have seen and heard stories of other children express similar feelings or withdraw after attempting to connect and process their experiences. Other children have made comments about not being here for their next birthday or never going back to school. Other examples from clinicians include a child who collected watches of the medical staff and the child commented, “I don’t have enough time.” I believe each of these statements were the child’s attempt to see if their loved one or support system were ready to hear and understand their experiences.

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211CHILD-CENTERED PLAY THERAPY

I have also found that both parents and children function in a dance-like sequence as they attempt to protect each other and function under a state of mutual pretense. Bluebond-Langner (1978) studied dying children and their awareness and communi- cation patterns at end of life. She defi nes mutual pretense as an interaction approach between dying children, their families, and those who care for them. The main goal of mutual pretense is to maintain societal roles and the relationship at a very emotionally challenging time. Under mutual pretense, children and adults attempt to protect each other by following typical societal patterns and to keep the relationship from breaking down. Lina’s mother worried that disclosing her terminal prognosis would speed up her death because she felt she would quit fi ghting her cancer. She attempted to protect her by avoiding conversations related to her prognosis. Instead she encouraged her to continue to fi ght this disease and she consented to treatment and procedures that would most likely not extend her life. Lina also protected her mother and behaved in ways that protected her from diffi cult emotions and conversations. She would initiate arguments when she realized she was struggling to cope with her questions, or she would suddenly become fatigued and state that she needed to rest because she played so hard. In addition, Bluebond-Langner discussed providing children with a relation- ship in which they can safely share their thoughts and feelings with a person who can handle discussing matters of illness and death, as well as allowing them to maintain mutual pretense when needed. In this relationship, the safe person, such as a therapist, can genuinely accept and openly understand. For Lina, her night nurse, child life spe- cialist, and play therapist provided the safe environment where she could play out and share. These relationships allowed her to process through her diffi cult emotions and experiences and fostered greater inner strength to slowly approach the subject with her parents.

During their illness, children need opportunities to play, especially at end of life. They may not be able to be totally independent—they may need some help. But they should always be in the lead. Never do for a child what he or she can do or tell you to do for them (Landreth, 2012). You may need to hold up a pad of paper or concoct a paint brush glove so a child can still paint. You may need to play for some children as they direct you because their bodies will not allow them to move as freely as they once could. Adaptations may be needed. I also never know what the child may need. It was important that I remain continually open to the experience that a child, Lina in this case, may ask for or lead with. Lina had a strong desire to make a movie about zombies. I believe this was related to her treatment and how she felt she was losing a battle. She would play for brief amounts of time and then comment that her life was in danger because of the sun-opening windows and pretending to die. She also played out death and funeral scenes to make sense of what was to come. In this context, Landreth (2012) indicated that the relationship between a dying child and a person willing to follow as the child leads allows the child to guide the relationship in ways the child needs and are important to the child, not what the therapist thinks is important. Time with a therapist may offer a child an ‘oasis’ where the child is free to direct and con- trol their environment, something very hard to do in a hospital or medical space. This freedom contradicts the reality of the medical environment where the child is directed and controlled by others and his or her disease.

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My work with Lina was both personally rewarding and emotionally challenging. Lina’s fi ght to live and delight in her daily interactions was inspiring. I enjoyed our time together and looked forward to our interactions. Lina had a joy for life that was infectious. In the diffi cult moments she would treasure the smallest accomplishment or task. I remember at the end of a particularly emotional session, she looked down at her work and smiled. Her smile resonated with pride and ease for what she had achieved. She appeared lighter, as if her inner strength shined through. Lina’s action was subtle and I could have easily missed her smile. I was honored to witness and journey with her at a very emotionally sensitive time. I often smile as I think of her or when a task reminds me of her.

On the other hand, I experienced an array of painful emotions—in particular, sad- ness. The knowledge of Lina’s failing prognosis weighed heavily on my heart. I found it helpful to share my sadness with peers. Without sharing my feelings and experiences, I felt alone and watched it impact my non-professional relationships. Confi dentiality is hard to maintain when loved ones are asking what is wrong and know your day was challenging. Speaking with my peers allowed me to leave the offi ce and be prepared to engage with loved ones in a more present and authentic way (and maintain confi den- tiality). Watching Lina struggle to live made me think a lot about my own life and if I cherished the people and activities in which I am involved. I felt guilty that I rushed through life without appreciating each moment. Over time, I have learned that life is not fair and can end quickly. Just like the children I worked with, I must value each moment I have, treasure important people in my life, and take time to let them know how important they are to me.

I also experienced anxiety and struggled to know if I was enough for Lina. I feared she needed more than I could provide her. Although I thoroughly enjoyed my inter- actions with Lina, our time together was challenging. I trusted Lina to lead me and be in control of her play. But I did not always trust in myself. I struggled to be still and believe in my ability to provide her with the acceptance and understanding she deserved. I remember seeking supervision and begging an expert to come see Lina. He kindly stated that I was exactly what Lina needed. I did not trust him and felt disap- pointed that Lina was stuck with me. I felt compelled to ‘do’ something more and sought consultation from peers. They suggested activities I could provide to help her and I would think “she’s already doing that on her own.” I learned my need for more was my own internal struggle and discomfort with sitting still and watching someone die. Like Lina, I wanted her to live. I was deeply saddened and was grieving for our joint loss. I have learned grief is hard and everyone needs the opportunity to grieve. I found it helpful to create feeling and grief rituals to help fi nd closure to our relation- ship and memorialize the children I worked with.

Death and talking about death is very uncomfortable for many people, especially pediatric medical personnel. Some physicians, nurses, and care providers become uncomfortable when trying to comfort children and their families in end of life care. I believe one’s personal experiences, beliefs about death, and lack of education often make these conversations and experiences awkward for adults. For instance, I have seen doctors focus solely on life-saving measures and ignore the child’s and

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213CHILD-CENTERED PLAY THERAPY

family’s end of life wishes. One doctor was so uncomfortable with the idea of not continuing treatment that the doctor stopped or diverted conversation every time the parents or child brought up palliative care options. And I have observed nurses nervous when death and end of life discussions or play begins. They often shared they were unsure what to say or how to function during these experiences, so they went into task-oriented roles to lessen their anxiety. Many medical personnel have not received training in grief and loss, and therefore function from their own experi- ences. In these two experiences, I found it important to listen to the team members and help them process their own grief in losing the patient. And I believe we can help medical staff fi nd alternative ways of being in these uncomfortable situations. Our role as social and client advocates can help a family get their unique needs met at a diffi cult time. But we must remember to go into these conversations with an open heart and mind so we can hear all sides and perspectives. Several times I found myself seen as the ‘enemy’ in discussions because the medical staff member did not feel heard and understood.

Families who have children who die from chronic illness may struggle after their child dies. The hospital and medical staff become a pseudo family with whom they grew close. The sudden end to the relationship was very hard for many families I have worked with. One family shared that they still have a phone message on their answer- ing machine from their child’s primary physician from two years ago. They do not want to erase it, because it helps them remember their child and all the staff they grew close to. I believe follow-up messages are helpful for families as they grieve. Simple messages sharing a memory or ‘gift’ their children imparted on the medical team helps families feel their child was important to the staff and that their legacy lives on.

I found that highs and lows are common when working with this population. I experienced emotions on both extremes. Some days I felt content, peaceful, joyous, inspired, happy, proud, and honored to work with the children and families. These emotions made it easier to come back to the playroom and interact with the children. On the other hand, some days were emotionally hard. I experienced deep sadness, anger, frustration, sorrow, and exhaustion. Because I operate from a CCPT perspec- tive, which means fully entering the child’s world and seeing the world as the child sees it, the level of presence and empathy can be challenging and require signifi cant personal resources. On bad days, I struggled to be fully present and genuine in ses- sion. I had diffi culty understanding the child, as I was unaware of my own feelings. When I experienced a bad session or an overall crummy day, I recognized the need for self-care rituals to help me be more present. Unfortunately, I did not always make the time to participate in my own self-care, and instead felt obliged to attend a meeting or attempted to respond to another need. In a hospital setting, there will always be another need, so I had to learn how to care for myself. My typical and brief self-care strategies are to walk outside or grab ice cream with a colleague to help me renew my inner strength. After a child died, I participated in a grief ritual to honor that child. Grief rituals vary by person and are personal. For me, grief rituals offered quiet time to think about the child and our relationship. I enjoyed creating something that reminded me of the child. A peer planted a seed and another peer collected beads that represented

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the child’s spirit. Overall, I found that when my bad days outweighed my good days, I was lacking in self-care and needed to take better care of myself (and a mental health day off). I found it easy to get stuck in the mundane and methodically work, but this population and environment required my full attention and health.

Over the years, I have learned several self-care habits that helped me stay present and mentally healthy. Just like therapy, self-care habits need to fi t the individual, as pre- scribed habits tend to be unsuccessful. For me, sleeping, eating healthily, and exercise are essential for my health. Finding outside activities that refuel me are important to balancing work–home life. I enjoy time with friends and cooking, whereas a colleague enjoyed time at church and reading. No matter the preference for individual therapists, the critical piece is fi nding personal activities that energize and nurture the therapist. In addition, I fi nd therapy very helpful in managing the ‘burdens’ of the job. Working with dying children is heavy work. Time with my therapist helped me emotionally heal from all I saw and experienced. I found that it took effort to stay healthy and I had to be mindful of what I needed in order to be fully present and therapeutic in my next relationships.

CONCLUSION

Children who face chronic and terminal illness or medical conditions require mental health support that recognizes their needs for self-direction, control, and understand- ing. Anxiety, depression, confusion, and pain are common experiences for termi- nally ill children, and often result in behaviors that can be problematic such as overt attempts at control, relationship confl ict, and medical non-compliance. Caretakers are often infl uenced by their own responses to extreme stress and loss, and there- fore have diffi culty understanding their children’s feelings and motivations. Problem behaviors and relational disruptions can leave a child who is dying feeling even more lonely and isolated. Yet, as all children, those who are dying have the biological drive to know what they need and how to work toward getting those needs met. In an envi- ronment where a child feels fully understood and accepted, this actualizing tendency is released and children develop self-knowledge and skills to move them toward inner peace (theoretically conceptualized as congruence) and relational accord. CCPT is a mental health intervention that provides the child a developmentally appropriate lan- guage and the relationship to facilitate a child’s movement toward self-enhancement. In CCPT, a child who is dying can express fears and concerns that are most present, allowing the child to work through barriers to acceptance of a present and future that are unknown. Therapists who provide CCPT to children who are terminally ill oper- ate in an environment of intense emotions for all people involved. When operating from a CCPT perspective, therapists need to be well-trained in play therapy, person- centered philosophy, medical settings, medical teams, terminal conditions, and human reactions to grief and loss. Perhaps most importantly, the therapist needs to engage in self-care strategies that personally nurture and energize in order to provide the level of presence and therapy needed for each child and family. In relationship with a person

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who can offer genuine empathy and acceptance, children who confront loss and death can engage in their multifarious abilities to continue becoming more of what they want to be.

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CHAPTER 12 It’s All About the Living Play-Based Experiences With Children Facing End of Life Morgan Livingstone

The sky’s awake, so I’m awake, so we have to play. —Princess Anna, Frozen (Walt Disney Pictures, 2013)

Any child with a serious, complex, or life-threatening condition has tremendous needs during their care, from diagnosis through to palliative support. Life-prolonging treat- ments, medications, procedures, and skilled pain management, along with adaptive equipment to manage day-to-day tasks and facilitate movement, are important aspects of early palliative care. These medical and physical interventions focus on the life of that child, keeping them alive, but are not necessarily focused on the child that is doing the living. Often providing time and opportunity to play is minimized when parents and the medical team are so focused on managing the clinical symptoms of a child’s illness and the impact of those symptoms, including pain, discomfort, and loss of abilities, on the child. Although it is often undervalued and overlooked, this is the time when play becomes the essential modality through which to enhance the child’s ability to seek pleasure during diffi cult times, as well as process, problem solve, and seek understanding about what is happening to them and their body. Play can offer a release from pain, aid a child in communicating their needs, wants, and desires about the life they are living, and give them the ability to transport themselves in creative and imaginative ways.

This chapter will highlight the importance of play as a part of complete care for children of all ages facing end of life through diverse patient case studies that share the experiences of a community-based child life specialist. Using play adapted to the interests and abilities of the child or youth, this child life specialist shares play experi- ences that explore real-life struggles and uncover the range of social and emotional needs of the living child facing death. These playful approaches to serious matters can be adapted by other creative professionals working with children facing a life-limiting illness and end of life.

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219IT’S ALL ABOUT THE LIVING

THE CRITICAL ROLE OF PLAY

Play is an essential part of life for a child. Play is such an important aspect in a child’s healthy development that it has been recognized as a basic human right by the United Nations in Article 31 of the Convention on the Rights of the Child (1989). Even in the absence of toys, children are innately able to fi nd a way to play by themselves, with others, and with their environment. It is through play that children at a very early age engage and interact in the world around them. Play allows children to create and explore a world they can master, conquering their fears while practicing adult roles, sometimes in conjunction with other children or adult caregivers (Hurwitz, 2002). As they master their world, play helps children develop new competencies that lead to enhanced confi dence and the resiliency they will need to face future challenges (Pel- legrini & Smith, 1998).

When a child is diagnosed with a life-threatening illness, they face many challenges and frightening experiences that can and often do overwhelm the child, parents, and those close to the family (Boucher, Downing, & Shemilt, 2014). Yet despite the dev- astating consequences of terminal illness, children have the unique and ever-evolving needs, desires, and rights of any other child (Amery, 2009). They need play.

The World Health Organization (WHO) defi nes palliative care as (1998):

an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

• Palliative care for children is the active total care of the child’s body, mind and spirit, and involves giving support to the family.

• It begins when illness is diagnosed, and continues regardless of whether a child receives treatment directed at the disease.

• Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.

• Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

• It can be provided in tertiary care facilities, in community health centers and even in children’s homes.

Palliative care as an established fi eld of practice in medicine has grown and devel- oped greatly over the past two decades (Feudtner, Friebert, & Jewell, 2013). Impor- tant guidelines and recommendation statements prepared by the American Academy of Pediatrics (AAP) focus on the essential aspects of the medical care provided to children and families facing end of life, and outlines the roles of the greater multidisciplinary team that is working collaboratively to provide this care. Noticeably absent in these 12 guidelines and recommendations and in the preceding WHO defi nition are any

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mentions that the child be provided with play. These important foundational docu- ments are missing one of the most essential parts of a child’s complete care: play.

There have been some developments within the medical community and the AAP that are beginning to highlight the importance of play in the general healthy develop- ment of children. The AAP clinical report on The Importance of Play in Promoting Healthy Child Development and Maintaining Strong Parent–Child Bonds (Ginsburg, 2007) acknowledges the benefi ts of play, discusses the present barriers children face in accessing adequate time for play in today’s modern society, and offers advice for pedia- tricians that promotes strategies that will support children to be resilient and to reduce excessive stressors in their lives. This report states that because pediatricians have a unique and important role in promoting the physical, emotional, and social well-being of children, they have a natural role to serve as caring, objective child profession- als in their work with parents and caregivers. These important frontline members of the medical community are beginning to understand what kids already know: play is essential to a child’s life.

Seeing the lack of complete care guidelines for the rights of life-limited children, the International Children’s Palliative Care Network (ICPCN) created a charter of rights for children facing life-threatening or life-limiting illnesses. Within this char- ter, it is clearly stated that wherever possible, life-limited children be provided with opportunities to play, access leisure opportunities, interact with siblings and friends, and participate in normal childhood activities (ICPCN, 2008). This charter still lacks the instructions for types of play—nothing specifi c, and no steps or guidelines for what play is recommended.

Including and supporting the parents, siblings, and extended family in play oppor- tunities can benefi t all parties, and most importantly benefi ts the dying child. Dying can create distance between the child and their family. This distance often happens when a child tries to protect their parents from upset by keeping their ‘BIG’ feelings to themselves, and they may open up about their thoughts and feelings about the dying process with only a few special people. In families that are closely involved in the care, who invite play with their child, and who participate in an open and honest approach to the dying process, this natural distancing can be less marked and the child remains close to their parents (Adams & Deveau, 1984).

At any particular moment, the medical team’s goal is to cure and treat, while the child’s goal is self-pleasure (Gray, 1989). Ensuring that the right balance and pacing of medical attention, procedures, and assessments with periods of play doesn’t need to be a challenge, and it can be a goal for the child, family, and medical team to seek each day. And this should be done together.

CHILD LIFE PLAY PRACTICES: CHILDREN AND FAMILIES I HAVE HAD THE PRIVILEGE OF PLAYING WITH

Death is very much a part of life, but that fact doesn’t make it any easier. I have been working with dying children since my initial Child Life internship in an infectious dis- ease ward with sickle cell and hemophiliac teen patients who were victims of tainted

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221IT’S ALL ABOUT THE LIVING

blood transfusions. Before treatments could manage HIV/AIDS as a lifelong illness, patients were stuck in isolation in the infectious disease ward, with little contact with the outside world. They were waiting around to die. Their only freedom from illness and the disease was their time with family, friends, and their child life specialist. This continues to be a sad reality for many children and youth in developing countries. As a child life specialist new to the profession, I realized that these patients needed to focus on a whole lot of living, not the dying part. After all, they weren’t dead yet! Right?

During my time in the infectious disease ward, one HIV-positive teen felt trapped in the ward, cut off from the normal experiences he needed and wanted as a young man. In our time together, naturally our play was adapted for him as a teen, and we played many video games and many rounds of high-stakes hospital poker, created our own board games and hosted tournaments with the medical staff. Through our time together, he always listened to music. I noticed that we listened to the same tracks over and over. When I asked about this, it turned out it wasn’t that they were his favorite tracks, but that he had no access to any new music. After a little discussion about music preferences, I set out to solve this problem. A local DJ happily put together a variety of live music for this patient. Our music was never dull again no matter what we were playing. Something so small and simple sure can make a difference in the life of this teen.

And so began my journey to change the way we approach end of life child life sup- ports, and how we play with patients and their families facing end of life. After that position, I moved into pediatric oncology and general oncology, where I was working with children with cancer and children whose parents/grandparents were facing a pal- liative cancer diagnosis. This is where I really learned that palliative care is about long- term complete care for ongoing life, while living with and managing symptoms before death. Sometimes the actual death takes years after the palliative diagnosis.

Play with dying children has many important purposes. Sometimes play takes place as a means to teach about the medical experience and cope during important medical procedures designed to extend the life of the child or manage the physical symptoms associated with the body’s response to metastatic or progressive disease. Other times, there is no purpose to the play at all but to have fun, laugh, and explore. It may have nothing to do with the illness, the physical or psychological symptoms of dying. It is just play for play’s sake. Sometimes play functions to help children explore concepts around death and dying. It allows them to learn what it is, fi gure out what it means to them, and what they want before they die and what they want when they die. Here I will share actual play experiences I had the honor of participating in with children of all ages who were facing life-limiting illnesses.

Gina: 2 to 4 Years

Gina, a lovely child with metastatic retinoblastoma (eye cancer) and I developed a close relationship over a period of years after her initial cancer treatment was incomplete and unsuccessful and her tumor recurred in her eye socket at the age of 2 years. Gina’s family had come to Canada for specialized medical treatment from central Africa. Our work together started with medical play and preparation for immediate surgery to

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remove the large tumor, and preparation for 25 radiation treatments. This was a big order for a young child with no previous contact with a child life specialist, and little contact with people outside of her home community. I knew it was important that I connect with her immediately and use play as a form of communication, in addition to the phrases I had taught myself in her language. I was the fi rst person Mom and Gina met when they arrived at the airport. I had a soft stuffed animal as a welcoming toy and transitional item into a new and strange place. Play was essential even when we met for the fi rst time.

We played with a large cloth doll and assorted medical materials to familiarize Gina with what she would see at the hospital in preparation for her surgery. Within our playtime we also practiced placing an IV on the doll and used the mask repeatedly in preparation for sedation in the operating room. Gina enjoyed the play, methodically exploring and manipulating all the materials, following the steps I would demonstrate for the different aspects of her upcoming surgery. All the while, her mother was assist- ing by quietly translating English into the family’s language to ensure understanding. This closeness during these play sessions also offered Gina’s mother a chance to see how I explained procedures and medical experiences using play and in child-friendly language, which helped her to continue supporting this learning and exploration of what will happen with each procedure.

Simplifying information and ideas using play for very young children means being creative, thoughtful, and aware of a child’s development. With Gina, it was important to offer layered learning and play opportunities, and slowly build on each topic or area of learning. Asking a 2- or 3-year-old about how they are feeling can be a challenge if they aren’t aware of what feelings actually are, and are not sure how to label feelings, so I started with simple stories and materials about feelings. These included the book My Many Colored Day by Dr. Seuss (1996), accompanied by toy animals featured in the book and feelings faces to demonstrate different feelings using movement and faces. We practiced moving our bodies in ways that showed how we were feeling. Sometimes skipping and dancing was used when demonstrating happy or excited feel- ings and slow, low movements showed our sad and scared feelings. Anger popped from our bodies in bursts and BIG stomps on the fl oor. All these important feelings were safely being shared in a playful, fun, and safe way as we played together.

Similarly, when introducing play and preparation for 25 radiation treatments, I knew I had to be creative while still acknowledging that this was a very young child, so I used familiar and simple concepts with a little imagination to prepare her for radiation. Using the Very Hungry Caterpillar book by Eric Carle and a homemade felt board story set, we explored the life cycle of the caterpillar to butterfl y. The cocoon stage helped me to creatively but playfully illustrate and explain what it means to stay very still, and not move at all. This would be essential to Gina completing the necessary CT scans and her 25 radiation treatments without sedation and the nausea and vomit- ing associated with that sedation medication. After repeatedly playing and practicing lying still like a caterpillar in a cocoon, Gina and I explored the special hard molded mask designed to keep her head still during these radiation treatments. The mask, to be fastened to the table with a top section that would clamp down around her little head, would ensure Gina could not move her head at all. These radiation masks can

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223IT’S ALL ABOUT THE LIVING

be a challenge even for an adult patient, so we had to rethink the mask’s job as a part of the cocoon, essential to helping Gina stay still so that she could emerge from her ‘cocoon’ as a ‘butterfl y’ after radiation was completed. Placing a fuzzy butterfl y sticker in the nose of the mask acted as the ‘special button’ Gina needed to press for the magi- cal transformation into a butterfl y. This playful approach to something so challenging changed everything, and Gina would hop up on the table, touch her nose to the sticker and lie still like a caterpillar in a cocoon. Mom gave encouraging messages over the intercom from the radiation technician’s control room. Emerging from a radiation treatment was followed with a set of paper wings attached to the table by the radia- tion technicians, and a pair of costume wings I would bring to each session. Gina, her mother and I would fl y and ‘fl utter’ down the hallway after radiation. This was fun!

When Gina’s father and three sisters were fi nally able to make the journey overseas to join her and her mother, our play sessions expanded and extended to include them as much as possible. It was important to include Gina’s siblings and model how to play with Gina throughout active treatment and into the more serious palliative stage of her illness when she began to lose some ability and mobility, and was confi ned to a bed or wheelchair. Using open-ended play materials and toys including puppets, dolls, and stuffed animals promoted creative storytelling between siblings and encouraged inter- action. These animals and puppets often received medical attention, allowing Gina and her sisters to explore concepts and experiences that were now a part of Gina’s life.

During the palliative stage of Gina’s illness when she was 4, there were discus- sions with the medical team about whether they would return home to central Africa or remain here, because travel would only be possible while Gina was able to tolerate it without a great deal of medical attention and support. Remaining in Canada was determined to be the best plan for her care needs through the palliative care. My work with Gina focused on remembering the people and places back home that Gina missed and activities she loved and would now no longer have the chance to do again. Her love of swimming in a lake near her home became a part of our sensory play. Water play was adapted to fi t in a basin on her lap while sitting in her wheelchair; we would dip our hands in the water, diving our fi ngers to the bottom and splashing with glee. Using small toy boats we imagined fl oating and fi shing on that lake, together, and with her family and friends. Spending time in nature, on neighborhood walks in the community with her family, was a part of each day. It was important for the family to know that it would not only be nice to take Gina outdoors in her wheelchair each day to feel the warm sun on her skin, but also would promote more time together as a family in the community. Talking aloud about adventures and telling stories was an important way to transport Gina out of her wheelchair and she could travel anywhere in her imagination. This practice of storytelling aloud and playing out adventures became the most appropriate means to discuss her beliefs about end of life. We read picture books about death and dying, including Lifetimes by Mellonie and Ingpen (1983) and The Fall of Freddie the Leaf by Buscaglia (1982). These books facilitated questions Gina had about what would happen to her body after her death. To help her understand how the body stops functioning when a person dies, we used a large felt board body, with bones and organs we could stick on with Velcro. We discussed in simple words what each organ does, and what it stops doing when a person dies. The

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job of the lungs is to breathe air. When someone dies, the lungs no longer breathe. The heart’s job is to pump blood through our entire body. When someone dies, their heart stops beating. These play-based learning opportunities included exploring the body and its functions, and discussing the good questions that arose, including whether Gina would need food to eat after death, and if she would need a blanket to keep her body warm after death. We created a doll to represent a person that was dying. We repeatedly practiced saying each organ that would stop working, the heart, the lungs, the brain, and on and on. We used the words “dying,” “died,” and “dead.” We wrapped the body in fabric, placed it in a plain cardboard box representing a coffi n and ceremonially buried it, sharing kind words about the doll at a mock funeral. This play was repeated many times to help Gina understand these concepts about death, and in order to ensure there were no misunderstandings or misinformation about what happens when a person dies.

Gina and her family believed in heaven, and our play naturally shifted to focus on concepts about heaven through sensory play. Soft cotton balls became fl uffy white clouds, smooth white feathers represented the wings of angels. After many months of palliative care in the home, Gina died surrounded by her loving family.

Leslie: 8 Years

Leslie was from a northern, rural community surrounded by forest, rivers, and small lakes. Traveling many hours into the city for his medical care meant he and his mother were away from his father and siblings for the many months of treatment he needed. My time with Leslie began with an understanding that the type of cancer that he had was not curable, and that with the right treatments, the quality of his life could be improved and possibly extended for a short period of time. When we began to play together, Leslie was fi lled with energy and laughter, so we focused on gross motor activities that let us use our bodies in BIG ways. The hospital environment didn’t offer many opportunities to really move, so we played ‘keep it up’ games using balloons and lightweight balls. I exaggerated my movements like a slapstick comic to encour- age laughter and lightness in this playtime. My epic crashes as I dove across the room for the balloon became sources of great release during the stress-fi lled treatment days. We would often include his Mom, and occasionally we could persuade medical team members to join us, too. Including the team allowed Leslie to better connect with his radiation oncologist, neurologist, and oncologist; the play made them fun people, not just doctors dictating treatment.

When Leslie was able to join me in my playroom, we played elaborate dinosaur adventures using large plastic dinosaurs, volcanoes, toy trees, and rocks. Playing out lengthy battles between herbivores and carnivores allowed for tremendous debates about dinosaur attributes, horns, tails, teeth, and eventually led to important discus- sions about what happened to dinosaurs many millions of years ago. Dinosaurs were extinct. They died. Extinction. Dead. They were gone and never came back. Dinosaurs helped us talk about, and play about, life and death. These important concepts about death, dying, and the fi nality of death were easier to approach using dinosaurs. It was as if it wasn’t actually ‘death’ we were talking about; it was just dinosaurs. Leslie was

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225IT’S ALL ABOUT THE LIVING

asking questions, exploring concepts and learning about death using and playing with dinosaurs. These were important discussions that were made fun and safe through play.

As his cancer progressed and impacted his ability to see clearly through his overly watery eyes, and some paralysis on his left side left him confi ned to his bed or wheel- chair, we explored ways to play in bed and go on adventures without even leaving his room. Part of Leslie’s life at home included hunting and fi shing, and he was missing out on these experiences while sitting in the hospital bed. I created a magnetic fi shing pole with laminated paper fi sh with paperclip lips, each one printed like the types of fi sh from the local lakes near Leslie’s home. We fi shed off the end of his bed, over and over again. We fi shed with his Mom, his nurses, and his doctors. Discussions about medical care, planning, and how Leslie was feeling took place while we all quietly fi shed together off the end of his bed, making it seem more natural and less scary. We did blindfolded fi shing to even the playing fi eld when his eyes watered so much they compromised his ability to see anything clearly. To make things more competitive, we gave points to certain fi sh and kept a record of who caught the most fi sh each day, and who got the most points based on the fi sh. It was fun and competitive play that invited everyone’s participation, while honoring a lovely family experience he so missed while in the hospital.

As Leslie’s mobility was reduced due to the cancer’s spreading through this brain, his ability to move and communicate was more and more limited. His voice was a whisper, heard only if you put your ear near his mouth, and his right hand the only part of his body he was able to successfully control. Watching television became a new focus because play was harder and harder to participate in. I noticed professional wrestling was a popular choice for Leslie’s viewing, so I created a special wrestling card game that would allow Leslie to control the play. Leslie would turn the cards with his right hand; each card had a wrestling move printed on it, and I would make the toy wrestlers, big plastic action fi gures, execute each move against their oppo- nent in an epic battle by the bedside! I would grunt and trash talk as the wrestlers I held threw each other across the bed, shaking the bed as each wrestling move was completed. Leslie’s silent lopsided smile and eager hand turning the cards helped me pace the action. Playing FOR Leslie was essential to helping him cope with his limited ability.

We extended Leslie’s use of his one functioning hand to include creative and expres- sive arts as a part of his play. By adapting fi nger painting activities, I would drape a mess towel over his chest area, placing slippery fi nger paint paper on top so Leslie could move his paint dipped hand back and forth, creating streaks of color and small handprints. Small toy cars could be dipped in paint and driven over the paper using his right hand, a rainbow of textured wheel tracks making their way across the paper. Having a warm water fi lled basin nearby with cloths to clean up our paint messes became a part of the games we played, as Leslie would try to get as much paint on me, my face, my hands and arms, as I tried to clean his hands off. Many days I would head out on my journey home with unnoticed blobs of green paint on the underside of my arms and in my ears. My colorful ride home made many people smile, and made Leslie’s Mom laugh out loud as I told her the story the next day.

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Leslie was able to go home for the very end of his life. As I prepared for them to leave the hospital for the long journey home, I gave his Mom a collection of all the art Leslie and I had completed together in a bound portfolio, and included photos of our play together. I always kept track of our art work with a small date written in the corner along with his name. Once home, Leslie’s family focused on just being with him during his fi nal days. They played with him and for him as he lived his last few days. He died in his bedroom at home wearing his Buzz Lightyear costume at the exact moment that everyone had stepped out of his room, answering the phone, making tea, having a bathroom break. It was as if he waited until everyone was ready, then died alone but surrounded by love. He was buried in that costume and with his beloved wrestling toys from our fabulous game. Play was honored as an important part of his life even after his death.

Brian: 13 Years

I met Brian by accident, not through the usual referral process from a doctor, nurse, or child life specialist. It was really a fl uke the family found me. Brian had a very serious brain tumor that would be fatal within the year of diagnosis. As his family struggled with the diagnosis, and what and how to tell a young teen the truth about his tumor, Mom asked for help. The fi rst stop was a new age psychologist who referred Brian to an alternative healer. Then, by chance, that healer knew about my oncology work in the community and gave them my contact information. This certainly was not through the normal channels, and could have been missed completely.

After talking and planning with Mom, I came to see them at their home. The initial plan for my work was to help prepare Brian for all the treatments ahead, understanding what it means to take part in a clinical trial, and eventually explain that his tumor was not survivable. For Brian’s family, the task of breaking this news and telling Brian them- selves was too diffi cult. They needed help to begin the discussion about palliative care.

Brian and I got started right away getting to know each other. I set out to get to know as much as I could about him: what he liked, what he didn’t. We discussed his interests and passions such as sports, games, movies, activities, friends, family, beliefs, even dreams and hopes for his future. Like a detective, I wanted to fi gure out every- thing about him to better plan, to engage him and meet his needs in our time together. This relationship building includes trust, caring, and fun that will allow our partner- ship to evolve into a strong foundation as we spend more time together.

Brian’s passion for video games, movies, and sports made its way into most of our sessions together. Whether we played a few rounds of games together on his Xbox or watched a movie, we made sure to balance the hard clinical work of cancer, medicine, and treatment with fun, escape, and a wicked sense of humor. Our mutual love of zom- bies was well supported in mainstream pop culture through endless graphic novels, video games, and new movies on a weekly basis. We enjoyed them all and debated the many qualities of each one including the all-important questions—fast-moving zom- bies or slow and lethargic zombies? The zombie theme offered us a total escape from his reality; it allowed us to joke about his brain tumor and theorize about what would happen if a zombie ate a brain fi lled with cancer. Humor helped sometimes.

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227IT’S ALL ABOUT THE LIVING

Exploring Brian’s feelings took place at the beginning of every session to give us a baseline about how he was feeling. We would then revisit how he was feeling as we learned new things about his body and how it was responding to treatment, and if things were changing, as they do frequently during palliative care. In the beginning of our time together, we used a stamp set of round feelings faces and would stamp each one and explore each feeling. As we spent more and more time together, the stamp set was not needed, as Brian became more skilled with the familiar routine of assessing his own feelings. An example of our feelings-focused work includes:

My Feelings

Happy —not on meds anymore, tummy feels better Bored —but able to distract myself Scared —What’s going to happen to me? What are my options? How will this affect

me? How will this affect my family? Frustrated —the medicine didn’t work Nervous —What will happen to my body now? How will the tumor affect me? Anger —Letting it out is important—swearing, yelling, throwing, smashing, screaming

into a pillow Optimism —the GOOD list—playing video games, watching TV/movies, friends, room

makeover, sometimes school is fun.

We also worked hard on fi guring out what Brian knew so far about his tumor and treatments and what questions he had for me, the doctor, and his parents about what was happening to his body and how his life would be impacted during treat- ment. We played with and explored my many brain toys and materials—squishy stress-ball brains, educational brain toys, puzzles, and books. While exploring these toys, we were also learning where in the brain his tumor was located and what that area of the brain does and what it controls in our bodies. This allowed us to explore and discuss the possible impact the treatments might have on him and his ability to do activities and tasks, and the impact on his body. Problem solving how to improve Brian’s frequent blood draws included some medical play with butterfl y needles to gain some mastery and overcome fears, fi nding a few preferred positive distractions he could use during these blood draws and determining how to advocate for what he needs to be and feel successful when at the clinic. These works lead us to create numerous plans for success that were meant to guide the medical team and his family in their interactions with Brian throughout the ups and downs of his care.

Amid the daily grind of treatment, checkups, diagnostic assessments, and scans, it was important for me to promote family time and normal adventures that a family might do together. Working with numerous special community agencies, I set out to provide access to free tickets to local sports teams, music concerts, and movie pre- mieres. Although it is virtually impossible for a family to put cancer out of their minds, I wanted Brian, his parents, and his sister to at least put it aside for a few hours of plea- sure, together as a family. As Brian’s accessibility changed due to side effects that left

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him with poor balance and unclear vision at times, I adjusted these outings to include access to corporate suites that were more accessible and private.

As the treatments impacted Brian’s ability to attend school, our time together at the home increased. We began working with a local wish-granting agency, and Brian and his family began to plan the coolest Star Wars–themed ‘Man Cave’ that would include a place for his beloved toys and collectables and act as his ‘space’ at home. Designers visited in consultation about colors and his preferences for furniture, characters from the movies, and his needs based on the impact of treatment. Together Brian and I cre- ated a list of toys, games, and movies he hoped to stock his new room with. We played with his action fi gures, re-watched the Star Wars movies, and did web-based searches for cool ideas and inspiration. This offered a positive distraction from the seriousness of treatment and helped us build anticipation and excitement for the eventual reveal of the Man Cave. This man cave became Brian’s place: the place to be with him.

As Brian’s cancer progressed despite the treatments, we began our discussion about the seriousness of his diagnosis and the type of tumor he had. I stuck to the facts, kept it simple and used clear language in the beginning. “What we know about this tumor is that no one has survived it. This tumor will eventually cause you to die.” “We don’t know when you will die because of the new medicines the doctors are using in the clini- cal trial.” “The doctor’s hope with this clinical trial is that they will learn how to better treat this tumor.” “The doctors do not know if the treatments you are receiving will be able to stop this cancer, but they hope it will help to extend your life.” These initial statements about the seriousness of his tumor lead to deeper important discussions about life, death, and dying and what they mean to Brian. It also allowed us a chance to plan for how Brian wanted to live now, while knowing he was dying.

Brian and I brainstormed what he wanted to focus on, on his own, with the medi- cal team and with his family. His list was simple:

Wellness Quality of Life Hopeful Optimistic Live Life

Communicating this focus was important to the way forward. Brian wanted to focus on the positive. He was living and wanted his life to be hopeful. If a drug wasn’t working, or the side effects were too great, he wanted to problem solve next steps, new treatments, and strategies. He did not want to just give up and stop treatment. This desire to try new and different approaches to continue treating Brian’s cancer led to diet changes thought to improve his response to treatment and rob the tumor of fuel. Natu- rally, the new diet and its restrictions were not the most delicious for a young teen. So, my work shifted to include seeking out places that could make us teen food favorites in a healthy way. In my adventures around town, shaking hands and making friends with foodies led me to fi nd a Healthy Hawaiian pizza and organic soda pop that met the dietary restrictions. Our pizza party was both teen taste buds delicious and good for us!

The side effects of treatment were frustrating for Brian. Brian was a big guy, tall and solid, so these balance issues meant he struggled with walking more and more,

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229IT’S ALL ABOUT THE LIVING

making walking almost impossible even with a person assisting and a walker. Even- tually Brian required a wheelchair to get around. We tackled this frustration with humor again. Brian and his Mom set out to make humorous T-shirts that poked fun at his wheelchair, including one particularly hilarious one of a comic stick-man fall- ing out of a wheelchair with a caption above that said “Oh, Crap.” Brian wore these shirts proudly to every appointment he had at the hospital with the palliative team. He needed and wanted to have something funny to start the conversation, because much of the news was not good. The ability to make T-shirts expanded and extended into making shirts as gifts for family and friends. These shirts were a unique legacy-building activity of something Brian created. I still have my shirt and wear it often.

Anger was an important feeling to acknowledge as his vision was affected, caus- ing terrible headache-inducing double vision. The medical patches were functional, covering one eye to prevent the double vision. But these bandage-like patches were far too clinical; homemade pirate patches were more Brian’s style, so multiple pad- ded patches were created in straight black, as well as neon colors. If he had to wear a patch, Brian may as well have fun with it and really stand out! As much fun as it was to have fun, it was also important to openly talk about and play out the angry feelings about the changes in his body, the deterioration of his abilities. We created pillows to safely punch out angry feelings. Releasing anger was important both to let it out and to talk about it openly. We discussed these angry feelings about all aspects of treatment, his tumor, and his body’s betrayal as it succumbed to side effects of treatment and the impact of the tumor on his brain, while we made two papier-mâché monsters using recycled and colorful tissue paper. One monster represented Cancer, and the other represented Fear. The plan for these funny-looking monsters was to take out our anger on them, and smash them like a piñata, but in our deeper discussions about feelings, cancer, and fear, Brian decided that the monster Fear would be spared. Brian would keep Fear because fear is a natural part of life, even when facing death. We smashed the Cancer monster into a million little pieces. But we kept Fear.

Through these small setbacks and deterioration came the inevitable hospitalizations when things got complicated. Swallowing became a challenge. Choking on water was scary and could compromise Brian’s airway, so into the hospital he would go. This was hard for Brian and his family. The hospital wasn’t comfortable for him; he longed to leave and get home and play the more mature video games he wanted to play, watch the movies he wanted to watch. Food and drinking-related play was fun and frustrating. We added liquid thickeners to drinks and soups in hopes of fi nding the right balance of thickening without getting too gross. We played racing games doing taste samples of dif- ferent drinks, soups, and blended foods, then rating how good they were or how awful they were. Brian and I laughed and cried with each new taste test, and agreed that our overall goal was to make sure no one fed him chicken noodle soup jelly. That’s where we drew the line. I prepared rousing toilet paper target practice games to release angry feelings when the hospitalization got to him. We threw big wet handfuls of toilet paper at the targets representing the tumor, the hospital, and the routine procedures he could no longer stand, and the treatments that were causing extreme side effects. Throwing wet globs of paper was silly but serious fun in the hospital, and the messier it was, the better.

As things dragged on, while the medical team tested and scanned Brian’s body and problem solved what to do with both treatments and managing his palliative

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symptoms, the hospital stays got longer and longer and Brian worried about getting home. He was especially concerned about not having the chance to hold and pet his cat, a source of distraction and calm through his peaceful moments alone at home when guests had left, community medical team members were done with their work, and family members tended to the mundane daily tasks that called them away. I knew given his age that a simple stuffed animal might not meet this strong desire to be with his cat. I also knew that he had declined the pet therapy visits at the hospital. I had heard of a special “cat immersion” project that another hospital had done for a patient that missed their cat. I collected cat photos and videos from all friends, family, and col- leagues to create a slideshow of cats, and found recordings of cat sounds, meows and purrs, online. The “immersion” part involved tenting a plain white sheet above Brian’s bed, making sure to allow for nurses’ access, of course. Once the tent was up, I turned off the room lights and projected the cat slideshow into the sides of the tent and played the cat sounds. Total cat immersion was complete and provided the perfect distraction and restful experience!

The medical team continued to try new and different combinations of drugs when the clinical trial was not successful. These new medications had a particularly embarrassing impact on Brian. He was constipated, painfully so. More medications were given to address this problem, but things were slow to change. The discomfort and embarrassment was so signifi cant for Brian that it was hard to play and do other activities. Frustration and panic would bubble to the surface when his tummy hurt, so we began creating guided imagery scripts to help Brian relax his muscles, control his breathing, and distract his mind from his body’s pain. We took his love of sniper and fi rst person shooter video games and turned them into elaborate nar- rative stories of a sniper on a mission. As I created these scripts, I made sure to focus on all the little details, like the color of the camoufl age, the stillness of the sniper’s body as it lay in position, the feeling of the breeze on the sniper’s skin and hair, the meticulous control the sniper had over his breathing and each muscle in his body and what he was focusing on. For Brian, this allowed him to practice relaxing each part of his body, as the sniper did the same. We always started with the feet, then the legs, and made our way up the body. Depending on how much pain he was experiencing, Brian would often close his eye and imagine the images, but when he was panicked and worried about what was happening to his body and the pain he was feeling, he focused his gaze and stared right into my eyes while I said our sniper story aloud.

During what was to become his last time at home, Brian and I worked on his last wishes. These wishes were for functional actions, like who he would like to receive his beloved toys and video games, but also for important actions and interactions between the people in his life, too. His wishes were written for all his family members, instruct- ing them to be kind to each other in his last days and after his death. His wishes for the medical and palliative care team were specifi c about his care, to ensure he was addressed as Brian before they touched him or did any procedures or assessments on him, and to request that at the very end of his life he be ‘tube-free,’ without IVs and catheters snaking out of his body. And he wanted to be dressed in his own clothes, not the hospital gowns. He wanted to be Brian, not Brian the cancer patient.

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231IT’S ALL ABOUT THE LIVING

His last morning started with an ambulance ride to the hospital before the sun was up. Brought through the emergency room up into the ward, Brian’s breathing was rapid, his panic causing his heart to beat fast while the medical and palliative team worked to assess him and his body. Surrounded by the family and the medical team I began our sniper guided imagery, holding his hands and speaking softly close to his face to ensure he could see me and focus if his eyes were clear enough. His body slowly relaxed and the breathing settled into a calm pattern. With his last wishes posted up around the room, the family and medical team began the process of following through on these important wishes. The tubes were slowly removed. The hospital gown was taken off and Brian was dressed in his soft blue track suit. He was Brian. Brian died with his immediate family holding him, and extended family members surrounding his bed in the hospital that day.

PERSONAL REFLECTIONS

An essential part of child life interactions with any child is establishing a relationship with them that is warm, respectful, empathic, and understanding. Working with a child who is dying requires an even closer relationship, a deep connection, one that is inti- mate. It is this intimacy that allows you to go to those deeply personal areas of a child’s life and mind with them through their journey of living while they are dying. This intimacy often extends to the family as well. Much of my work with a dying child and their family takes place in their family home for a period, before sometimes shifting to a hospital or pediatric hospice for the end of life. All of this takes time, so I ensure that I offer a considerable amount of time to each child and family I help that is facing an end of life journey. This may be the hundredth family I have helped face a child living while dying, but for that child and their family, this is their only experience with this.

I take my role as a child life specialist for a dying child very seriously, while recog- nizing the need to provide some serious fun, too. I often explain to the child that I work for them. I am here to help them fi gure out all the answers to their questions, help them understand what is happening to them, and help them determine what they need and want to be and feel successful in their life facing a serious and life-threatening illness. I also stress that it’s my job to help ensure that their voice is heard among their parent’s desires and the medical team’s plans and problem solving. It is my job to communicate what they need and want. I give them a voice.

While remaining professional, I deeply respect the need to gain closeness in my practice that allows for a lifetime of building friendships while serving humanity (Adams, 1993).

SUMMARY

Death and dying invite an atmosphere of great seriousness that often challenges hope, possibility, and fun. However serious the situation is, it must be balanced by play that invites pleasure, exploration, stress relief, and self-expression. All play should be

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welcomed and encouraged, and when a clinician trusts in their ability to use an open mind and imagination in their interactions with a child, their experiences will be fresh, exciting, and full of the unexpected (Freeman, Epston, & Lobovits, 1997). Sometimes the act of problem solving play ideas becomes the play itself when you infuse it with fun language and explore different narrative approaches to these actions. It is not enough to give toys and expect a child to play alone. It is more important to fi nd opportunities to play with the child, and encourage and support play with family members. Time is so important to a child who is dying. Your time with them is the joyful part of their day, otherwise often spent with treatment, assessments, procedures, resting or sleeping, and general feelings of sadness and being unwell.

I have been so inspired by my own clinical experiences and adventures with patients and their families that I offer our versions of play at different ages and stages of development in hopes that you may adapt and adjust them to suit the needs and imaginations of the young people you have the privilege of playing with.

REFERENCES

Websites

Effective palliative care for children. (1998). World Health Organization (WHO) . Retrieved from: www.who.int/cancer/palliative/defi nition/en/

The ICPCN charter for the rights for life limited and life threatened children. (2008). Interna- tional Children’s Palliative Care Network (ICPCN) . Retrieved September 19, 2016 from: www.icpcn.org/icpcn-charter/

Professional Literature

Adams, D. W., & Deveau, E. J. (1984). Coping with childhood cancer: Where do we go from here? Reston, VA: Reston.

Adams, P. (1993). Gesundheit: Bringing good health to you, the medical system, and society through physician service, complementary therapies, humor and joy . Rochester, VT: Heal- ing Arts Press.

Amery, J. (Ed.). (2009). Children’s palliative care in Africa . Oxford: Oxford University Press. Boucher, S., Downing, J., & Shemilt, R. (2014). The Role of play in children’s palliative care.

Children , 1 , 302–317. Feudtner, C., Friebert, S., & Jewell, J. (2013). Pediatric palliative care and hospice care com-

mitments, guidelines, and recommendations. American Academy of Pediatrics , 132 (5), 966–972.

Freeman, J., Epston, D., & Lobovits, D. (1997). Playful approaches to serious problems: Narra- tive therapy with children and their families . New York: W. W. Norton.

Ginsburg, K. R. (2007). The importance of play in promoting healthy child development and maintaining strong parent-child bonds. American Academy of Pediatrics , 119 (1), 182–191.

Gray, E. (1989). The emotional and play needs of the dying child. Issues in Comprehensive Pedi- atric Nursing , 22 (2/3), 207–224.

Hurwitz, S. C. (2002). For parents particularly: To be successful—Let them play! Childhood Education , 79 (2), 101–102.

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http://www.who.int/cancer/palliative/definition/en/

http://www.icpcn.org/icpcn-charter/

233IT’S ALL ABOUT THE LIVING

Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations: Section on hospice and palliative medicine and committee on hospital care. (2013). Ameri- can Academy of Pediatrics , 132(5).

Pellegrini, A. D., & Smith, P. K. (1998). The Development of play during childhood: Forms and possible functions. Child and Adolescent Mental Health , 3 (2), 51–57.

Children’s Books

Buscaglia, L. F. (1982). The Fall of Freddie the leaf: A story of life for all ages . Thorofare, NJ: Slack.

Mellonie, B., & Ingpen, R. (1983). Lifetimes: A beautiful way to explain death to children . New York: Bantam.

Seuss, Dr. (1996). My many colored day . New York: Random House Children’s Books.

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http://taylorandfrancis.com