11 - School

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)

> Table of Contents > Section 2 - Child and family care > 10 - Children expressing themselves

10

Children expressing themselves

Trygve Aasgaard

Aiding communication between child, family, and carers

It is easy to fall into the trap of thinking of communication, as though it were only one way, from adults to children, with factual content only. In fact it is always two way, for even if an adult gives some information to a child there will be some feedback from the child's response [1].

People caring for children with life-threatening diseases may be more concerned about what to say to the child? than what does the child want to say?'. Sometimes the child's questions and comments come out of the blue or at times when carers feel unprepared to answer. Feelings of sadness and powerlessness may complicate mutual communication with the patient (and parents). Bedside manners [2] and withdrawal from the non-task oriented encounters may temporarily protect the carer, but will certainly hinder dialogues and will also easilybenoticed by the child patient. The challenge is often simply doing nothing and just being there; the best carers are probably those who are able to concentrate more on listening than saying the appropriate things, and those who, to some extent, have clarified their own relationship with death and dying.

Facing illness and death

Spending enough time with the individual child is a prerequisite for understanding what the child wants to know and is able to understand. The patient's level of awareness can be seen in play activities, drawings, poems, or song-improvisations. Practical and existential concerns are often closely woven together. Even terminally ill children generally focus on living (and life's good or bad sides), rather than on dying. Glazer and Landreth [3] characterize the child's world as an experiential world of now ; also in cases when the child has come to accept the inevitability of their death. In general, children, having not reached adolescence, are better equipped than adults to face death because they know how to live life to its fullest today, and do not focus on the lost future.

Carers may be toiling with questions as to what patients ought to be told about the progression of their disease, treatment, and future prospects. Quite often it turns out that the child has understood the situation long before any adult person has said anything:

A 5-year-old boy commented, after having been told that his abdominal cancer had returned , that he knew this already: he had felt the tumour growing inside his belly. There were no visible signs of the tumour that had been detected on a routine control. For the boy, however, this information was seemingly no surprise [4] (translation by T. Aa.).

Fatally ill children become aware of the seriousness of the illness even when others attempt to keep it a secret (Chapter 7, Children's views of death). They may spend much energy, testing and questioning both their parents and hospital staff and trying their honesty and patience. It is not strange that these patients want to control what can be controlled. They may dislike their parents talking to others outside of their sphere of control, they may want to decide who shall be allowed to enter the sick room, and what shall be talked about in their vicinity. As a rule, the patient ought to know what the carers know, but to inform them about all the details is not always necessary. Nor should siblings be shut out of the dying process for their own good . That will only intensify their pain and confuse them [5]. The patient must be allowed to control what she or he wants to know, and carers must respect this. Talking together is most likely to become a real dialogue when it takes place on the child's terms. Lack of language and different interpretations of basic concepts sometimes cause bewilderment or misunderstanding of the message from children's expressions. It is important that carers make sure that their own interpretations are correct.

Glazer and Landreth suggest the following guidelines that can enhance the process of sharing:

  • Be open and sensitive to the child

  • Allow the child to lead

  • Listen with your eyes

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  • Recognize and accept the child's feelings

  • State what you hear verbally and non-verbally

  • Allow what the child says or does to be more important than what the adult says

  • Recognize that children express grief in different ways (anger, withdrawal)

  • Keep responses short and brief

  • Don't overwhelm the child with information

  • Don't pretend everything is okay [3].

Major threats

One point of departure for approaching the child's potential existential questions is being aware of some of the major threats for children of different ages:

  • the first years of childhood: fear of being left alone

  • from 4 years old: fear of what might happen to the body

  • from 7 years old: fear of losing control

  • from about 10 years old: fear of losing self-determination

  • teenagers: fear of losing ones life and future [6].

Children less than 5 years of age seldom are afraid of dying because of their vague conceptions of what it involves to be dead. When younger schoolchildren gradually understand that death is inevitable and strikes all, their fear of death can become intense. Teenagers, like adults, may experience the mentioned threats at different times and without necessarily saying what they think and feel.

Openly expressing one's concerns about illness or death is a right, but not a duty. To acknowledge what is happening does not mean that every subject ought to be talked about. Children and their parents and carers may spend their last days together with a silent, seemingly common understanding of what is going to happen. One cannot claim that the more openly children express their thoughts and feelings, the better their life will become. What is important for carers to know, however, is that their own responses to the children's communicative attempts may influence which thoughts and feelings the child will share with others in the future. Bluebond Langner [7] discovered that some children did not talk about death because they realised it made the adults around them uncomfortable. Young patients soon learnt how to keep off this taboo subject and rather, tried to cope through being engaged in a mutual pretence. Children often want to protect their parents, and other carers must respect this attitude. I have only met terminally ill children who are constantly blaming or scolding their mother or father at the bedside a couple of times. But children should not be made to feel that they need to protect adults from pain. If effective mutual communication is to be established, adults must help them to understand that pain and grief are an acceptable part of life, not something to be avoided [3].

Play and artistic activities as normal means of communication

Play, artistic, and musical activities, like different forms of verbal conversations, are all normal elements in children's lives and should, therefore, also be generally encouraged as long as there is life. Children's first scribbles on paper are the beginnings of their symbol-making capacity, opening the door to emotional expression and representation of images and ideas through graphic means [8]. A human being making any kind of musical sound improvising, recreating or responding is expressing intentions that can communicate. The function of music is to enhance in some way the quality of individual experience and human relationships. Man is a musical being from the very beginning. Research on infants' vocal play with their parents shows how they imitate and reciprocate intricately coordinated expressions. Music is much more than just non-verbal or pre-verbal , and its use in therapy is based in the life-long human trait of creating companionship with another by structuring expressive time together [9].

Both music and art (here: the creation of images or arte-facts), are media for interpersonal, emotional, and aesthetic experiences; they are, however, not only means to obtain a specific result, but meaningful activities as such . Creative interactions may be just as marked by play fulness as by goal directness and very sick or dying children often surprise their carers through preserving this quality for a very long time. A number of key reports [10, 11] state that specialists in play should be available to children in hospital. Also when terminal care takes place within the home setting, those professionals involved require skills in recognising the play needs of the child and offering appropriate guidance, inspiration or assistance. Encouraging and facilitating playing, according to the age and desire of the patient, even willingness to take part in play (to various degrees), should not only be the realm and responsibility of play specialists, but be in the repertoire of communication for anyone entering the sick room.

Paediatric wards may be abundantly equipped with tools for video-entertainment, PC games and Nintendo. The electronic play-stations are valuable tools for killing time , and entertainment for young and old, but as expressive tools alone they are of limited value. Television can be used creatively: some paediatric hospitals have their own TV stations where isolated or bed-ridden patients may interact

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with persons in other parts of the ward/hospital and be socially active if they so please and have the strength.

Because young children are often unable to communicate emotionally meaningful material, solely through verbalisation, the possible emotional pain of the child who is dying may go unrecognised. Through play activities initiated by the patients or their carers those children may be helped to understand and to cope with their life situations, telling their stories, or exploring their questions. Play often seems to make the participants able to see traumatic events and experiences or the here-and-now realities from a little distance, due to its power of altering perspectives. Children use symbolic play, creating an alternative and safe language of self-expression. The use of symbols enables them to transfer anxieties, fears, scary fantasies, and guilt to objects rather than to people [3]. It is, however, important to bear in mind that play is, first of all, many children's natural (and normal) way of interacting with the world even during hard times when their carers might be overwhelmed by seriousness and powerlessness.

It is particularly challenging trying to meet the expressive needs of teenagers, who are progressively marked by incurable illness. Adolescents, like adults (parents included) may be in great need of playing. How they play is, however, more subtle: they do not simply play, but play football, or date, dance etc. Life in hospital and severe illness restrict activities like that. Finding ways of playing and liberating the homo ludens in these patients require carers who, at times, are able to let fantasy take over, to be able to pretend anything as if , and just fool about together with these patients. With or without the inspiration from others very sick teenagers momentarily may throw themselves into the playfulness, the childishness, sometimes even the naughtiness of various creative or nonsense activities. Daily life experiences (e.g. related to isolation, bodily problems, or persons in the environment) are often points of departure for slightly crazy or flippant social communication.

Common artistic activities in the sick room may inspire pleasurable interplay between the participants. The making of a socially stimulating but secure environment is a prerequisite for the young patients feeling free to express themselves as they wish. At times when patients, as well as their families, are experiencing an extremely insecure and unpredictable life situation, one way of helping the patient is providing room and means for their parents or brothers or sisters to express themselves and even to be involved in playful activities [12, 13]. Parents' own attitudes and abilities to play certainly influence how their children find outlets for expression. Observing the inventiveness and readiness for playing that occasionally characterise seriously ill children's families may be a useful experience for professional carers. On the other hand, the health care team may also act as role models for the sick child and her or his family in the art of playing'. Remember that not playing seriously (!) will easily be seen through by any child patient.

Different methods and techniques for aiding expression and understanding including play, music, and art

Carers need to consider which communicative means are at hand, and how the child may be helped to say' or to do what he or she wants, and is able to. Because all children are different and constantly developing, and because contexts are changing, there are no standard ways of facilitating expression. Boys employ words and conversations to express problems and feelings less than girls, not least in relation to traumatic experiences. Activity-based conversations may facilitate expression and communication; Dyregrov [14] mentions several possible activities accompanying conversation-like encounters suitable for many boys: for example, playing cards or looking at photo albums during the conversation, telling stories, writing letters on a (portable) PC, or even watching videos. Communication through the arts can usually not replace the use of speech, neither are the artistic codes universal languages, but rather cultural knowledge woven into the children's lives in many ways. In a hospital ward, the presence of toys, musical instruments and art materials counteract an unfamiliar and possibly threatening environment and provide the child with expressive tools always at hand. This is especially helpful, when words are not sufficient while explaining or illustrating events and relationships, expressing feelings, concerns, or dreams. The child artist also gains an important measure of control, as he or she is the creator and foremost expert on his or her own artistic works [8].

Art therapy and music therapy in paediatric palliative care

An interdisciplinary team approach in paediatric palliative care may include the presence of art therapists and music therapists. Since the early 1980s there has been a slowly growing body of literature on the use of art therapy, music therapy, and other creative arts therapies in palliative care. Art therapy with children who have an incurable illness has been documented by relatively few authors [8, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 24]. Music therapy in paediatric palliative care can be divided in two interrelated practices and fields of research: one aiming at reducing specific bodily symptoms, such as pain, nausea or towards having an anxiety reducing effect [25, 26, 27], and

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one mainly focusing on the patient's experiences, spiritual or existential questions, her or his role, communicative and expressive needs [5, 28, 29, 30, 31, 32, 33, 34]. The patient's life situation is just as important here as the symptoms or degree of pathology. Few extensive and systematic research projects on art or music in paediatric care have yet been carried out [35, 36].

Basic musical communication

Music therapy interventions with babies or very young children with AIDS, serve to stimulate not only the auditory system but also the tactile. The voice or musical instruments are used to promote sensory stimulation and awareness of the environment a prerequisite for the development of expressive functions such as independent movements. Rhythm instruments, for example, a triangle or maracas, can be played against the skin to determine preferences and to develop auditory tracking skills. But the most important indication to expose these children to music, during their sometimes very short life span, is the general enjoyment related to musical activities. At the Farano Center, New York, music has also been a means to support caregivers who sometimes feel that they have little to offer the children with AIDS in terms of comfort [31].

Children expressing their concerns through the arts

Free drawings, paintings, or other expressions (ie with no directive given by the therapist) are almost always informative, especially when children reflect their choices of subject and the meaning of artwork [8]. A child's perception of pain may be most accurately expressed through an illustration. Art-based activities and assessments provide information, not only about the patient's feelings about her or his illness, but also about cognitive and developmental maturity, coping styles, and personality. Several specific assessment techniques have been developed [8]. The child may be invited to make, for example, a volcano drawing to understand how she or he manages anxiety. Drawing a bridge may similarly be useful in understanding the child's expectation of the future [37]. Children with cancer symbolically cross many bridges during the course of treatment, and, in some cases from life into death. Councill describes how Mike , a 12-year-old boy with leukaemia, made his own pencil drawing of a bridge.

The task was selected to allow him to express how he bridged the gap between the period of his cancer treatment, his life at present, and his hopes for the future. Mike's well-articulated drawing of a bridge shows a past (during initial treatment), full of holes and broken boards, suggesting a very real possibility of falling off the bridge altogether. The middle section, representing the present, appears solid, but the bridge ends abruptly, leaving the right quarter of the completely blank.[ ]His shaky past and relatively solid present make sense in the context of his medical history, but the absence of any future at all is an indication that his expectation of the future continuing life may not be possible [8, p. 87].

This reflection of a life between the known and the unknown seems to characterise many drawings by seriously ill children. During the last months of her life a 15-year-old girl creates a drawing of a girl's head where half of the face is hidden in black (see Figure 10.1). The toothed contour of the shadow adds to the uncertainty of whether this blackening describes a static feature or an ongoing process. On the right side of the drawing is written m m me , an indication of a self portrait ? Sometimes, one single picture symbolically presents the child's fatal life situation at the same time as it reflects a search for meaning in the process of illness and death [24].

The use of creative writing techniques encourages older children to verbalize their feelings on paper, such as in poetry [38, 39]. Also song texts written by seriously ill children may be clearly autobiographic, but one should be very careful of uncritically interpreting any art work by a sick person (or any other person), as a personal testimony. Froehlich [40], in her experimental study comparing the effect of music therapy and medical play therapy, on the verbalisation behaviour of 40 paediatric patients, found a significant difference between the two groups. The chi square statistic revealed that music therapy elicited significantly more involved verbalisation about hospitalization, than did the play therapy session. Verbalisation was unrelated to the patient's diagnosis and prior hospitalizations.

Musical improvisation on appropriate instruments may serve both as a sensorimotor, concrete form of self-expression, and a highly representational and abstract one. If the child is old and fit enough to use objects to make sounds, instrumental improvisations may both express the physical self and release energy. Occasionally, fatally ill young or old persons become intensely involved in improvisational activities, also at times when their carers believe they lack the required strength to do so. Improvisations can be understood as projections of the patient's inner world or as metaphors for conscious experience [41].

Looking for resources

Working with the arts aiding understanding and expression may start with a defined problem that ought to be looked into or, by contrast, with the patient's healthy sides or interests as points of departure. Being involved with the arts often add new elements to the participants' lives: very sick children may discover and appreciate (unexpected) talents, reach new levels or fields of understanding and experience moments of

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pleasure. Carers must enduringly nurture the children's healthy sides but also be brave enough to face up to the harsh realities of these children's lives and their often hopeless, desperate, or utterly pessimistic expressions. Sometimes it is right to challenge the patient's skills children like to express and show others their normality even during hard times. Parents may even be surprised to be asked about a seriously ill child's healthy side. One mother commented, after having been asked about her son's resources, this was the first time someone in the paediatric oncology ward had asked what her son was good at!

Fig.10.1 Self portrait:Head of a girl. (Printed with permission.)

There are many ways of triggering the patient's expressive resources: for example carers may ask the child if she or he wants to share a song, a game or tell a story. Sometimes it helps the child if this question first, is directed to the accompanying parents.

Kala , an 8-year-old girl of African origin, has inoperable abdominal metastases and large amounts of ascites that must regularly be removed from her peritoneal cavity. Even though she is bedridden and generally marked by fatigue, Kala has preserved her playfulness and inventiveness. One time, she and her mother teach me (the music therapist) the words and melody of their national anthem. Every new session opens with an examination of my performance of the song: here Kala and her mother are the teachers and me the student. They patiently correct my many mistakes. The patient is given the opportunity to express some of her strengths, and the therapist is being challenged to learn an unfamiliar song.

During the next 2 months Kala's condition deteriorates and her respiration becomes increasingly strenuous, however, she seemingly still appreciates being an active participant in musical activities. One morning I ask her if we should sing Ba, Ba, Blacksheep, and Kala insists she will only sing a nasty version (where the sheep is farting in a restaurant ). It strikes me that the patient, who is breathing heavily and noisy when talking, sings rather effortlessly. She died 2 weeks later.

What Kala expresses here, is that she still is, in many ways, a normal girl who is having fun and being naughty. Seriously ill children seem to preserve such qualities better than adults. A comprehensive study of song texts created by children and adult patients in cancer care/hospice care, shows that elements of humour are much more predominant in the children and adolescents' songs than in song texts written by adults [36].

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Maintaining a sense of humour through times of illness, is a most valuable resource for coping.

Games can also be safe outlets for expression. Children with a progressive disease may benefit from taking part in games where they have a fair chance of winning. Pre-school children sometimes enjoy small, improvised competitions with their parents, arranged by the music therapist. Guessing names of familiar songs, or finding the right word, left out in a rhyme or song, may nurture the child's resources and result in pleasurable interactions particularly when the child is tired and unable to take part in more physically active games. Some children even create and perform their own games, fusing artistic work and elements of play together. Councill gives a vivid account of the Kingdom of Cancer, a winding board game created by a 5-year-old girl. The game was drawn on two large sheets of paper and included a very special set of dice. In this case, the rules of the game were made up by the patient herself, then dictated to and written down by her mother. Kingdom of Cancer was an impressive dramatization through words, pictures and play of the girl's own experiences of having cancer and she repeatedly invited other patients to play the game with her. Each player endured many hardships, but eventually made it to the birthday party at the end [8].

Artistic achievements as expressive acts

Expression' and achievement are often the interrelated aims and results from artistic activities, including when the artist is a terminally sick young person. Hilliard [32] describes his work with a 12-year-old boy diagnosed with AIDS and who is referred to music therapy for increased emotional support following his admission into the hospice program. Both his parents have died of AIDS and he now resides with his maternal grandparents. The boy reveals that he has always wanted to play the trumpet in school, but his family was never able to afford instrument rental. He avoids talking about the deaths of his parents and is initially resistant when the subject is broached. The music therapist formulated the following treatment goals: emotional expression and support, grief support, and increased self-esteem. Jamahl gets a trumpet through the hospice foundation and during the first sessions learns the basic techniques of trumpet playing. His grandmother reports that Jamahl hasn't been this happy in years! .

Case In subsequent music therapy sessions, Jamahl systematically learned to play several tunes on the trumpet. During the playing, he would often stop and talk to the music therapist about emotions and events occurring since the previous session. Jamahl developed trust with the music therapist and was able to express his feelings of grief over the loss of his parents. [ ](One) session ended with a song writing activity which used a trumpet solo for introduction followed by a rap Jamahl wrote about his mother and ended with a trumpet solo. The music therapist, therefore, reinforced the positive memories shared by Jamahl through the song-writing and allowed for the expression of grief. [ ]Over time, Jamahl was no longer able to play the trumpet due to increased weakness and fatigue associated with the disease progression. [ ]The music therapist offered to play guitar and sing for Jahmal, and the grandmother agreed and sang along. She chose several hymns to sing, as well as the songs Jamahl had learned to play on his trumpet [34, p. 131].

It is not uncommon to see very sick children being overwhelmed with presents from their families. This may not be a problem at all, however, at some point, almost no new gifts seem to please some patients. The best entertainment, for these children, often stems from their own active participation and effort. With the assistance of the music therapist patients can be helped to make musical gifts for their loved ones. One mother of a spoilt' 8-year-old critically ill girl said, after having received a cassette recording of her daughter's first own song, this event meant much more to her daughter than any gift she had received. A cassette or a CD with songs, made by the child or teenage patient, may serve as a means of communication between the patient and persons outside the sick room at home or in an institution. In my own practice it is the young patient, sometimes assisted by parents or siblings, who always makes the text. Melody and musical arrangement are, most often, the music therapist's task, but the patient may be involved in this process too, and also in charge of designing the CD- cover. A music therapist involved in similar projects must be able to materialise musical ideas fast: this is one arena where the sick child should not need to wait long to see the result. The child may have the strength and interest to sing at the recording, if not, the music therapist serves as a preliminary stand in. Family members are, as a rule, most willing to participate in one or several of the elements in the song creatiing activities, if the child thinks this is a good idea. Friends, or school-mates who receive the musical greetings (at times with texts addressing named persons) often provide feed-back, sometimes in the form of sending their home-made cassettes to the patient. Such expressive interactions can help the young patients to dispaly some of their healthy sides and to develop a creative network wider than the patient-therapist dyad.

Case Fred , who is 8 years old and becoming gradually more tired and bed-bound because of an inoperable brain tumour, weekly makes one little non-sense and funny song text. On three consecutive Tuesdays Fred's texts instantly get a melody and are performed by the music therapist, other patients, parents and hospital staff during the weekly singsong in the paediatric department entrance hall. The author himself is lying quietly all day on a bench

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in the hospital school room or on his bed he can't stand noises any more but he appreciates very much being told that other children enjoy and sing his songs.

Often, it does not matter much what the texts say' (in Fred's case nothing but funny rhymes , I believe). Artistic activities may show other children something one is good at. Fred also tells the world that he still can, at least in some respects, take part in enjoyable activities.

Small or big achievements, like those mentioned above, are also related to hope. Short-term goals becomes gradually more important as the expected life-span decreases. Carers must help the child finding goals that are realistic and, to a certain extent, measurable. A child needs some boundaries to obtain a feeling of safety; and boundaries may foster hope. When a child between 6 and 16 is no longer called pupil', but patient only, both the child and the parents often seem to interpret this as a sign of hopelessness. This detail may be important even when the child is not able to attend normal school programs.

Nurturing fantasy and pleasurable imagination

Even a child with life limiting illness must be given the opportunity temporarily of expanding her or his role repertoire from that of being a patient: a homo patiens who suffers and patiently accepts his fate. Fantasy' and imagination are key words here. Some carers arrange fantasy trips with bed-bound children: they leave' the sick room, travel to distant places and do funny things. A pre school teacher may make daily trips with children, may be to Barbie-land', Fairytale-land', Africa , where they create nice objects, read special stories and listen to music. One paediatric oncology nurse- specialist claims that fantasy trips like these seem to have the power of temporarily carrying severely ill children to places where they are everything but patients [4]. A music therapist may use a keyboard (often storing sounds like helicopter, sea waves, telephone bell, steam train etc.) to perform the most far reaching adventures. If the child has the strength and interest, she or he pushes the buttons, sings or plays (more or less) simple phrases on the keyboard or improvise freely. Parents or other persons in the room can also be drawn into these performances that may serve as an opening to verbal dialogues and wishful thinking and act as times-out from the harsh realities.

Music and art therapists often have a variety of communicative means in their repertoire. Stories and fairy tales have the quality of providing a form and frame of understanding for the child's own concerns and expressive needs; they can be used alone or in combination with music or art-work. The German music therapist Friederike von Hodenberg illustrates this in a case illustration about the 4-year-old Florian . After all curative cancer treatment has failed and the patient has moved back home, the music therapist continues to visit the critically ill boy. She writes:

From now on I worked with Florian, his mother and other members of his family. Florian never allowed me to play the Lyre again. Whilst he never gave a reason for this decision, I believe that it might have reminded him of his life in hospital. Instead, I decided to tell him the story of The Little Prince [42]. Through the dialogue I offered Florian the opportunity to talk about his concepts of dying. It transpired that the important theme was of the Prince being in heaven. In the story, the Prince comes to earth to find friends. When he eventually finds them he returns to heaven. I began to realise that this story mirrored Florian's life and impending death. At one point in the story Florian remarked, I believe there are more little humans in heaven than on earth. [ ] During his last days Florian only wanted to hear the beginning of the story. I repeated it at least ten times, concentrating on the tone-quality of my voice as a means to calm and relax him [29, p. 63].

Sometimes the young patients temporarily or permanently lose the strength to say or do much themselves, but they may still appreciate passively taking part in play activities, music making or art work. When this happens, carers who know the patient well can continue similar activities from their bed-side position. As long as the child is awake one can, most often, sense if the ongoing activity appears meaningful and beneficial to the child. An artistically gifted 14-year-old severely anorectic and fatigued girl, who just could whisper a word or two when spoken to, could sit for hours observing how a young nurse was drawing cute rabbits, in various situations, on a sheet of paper. The nurse had seen many of the patient's earlier, humorous drawings, she knew her preferences and style, and now she was able to follow up some of this. The nurse's drawings became a kind of common enterprise for the two of them. A pre-school teacher, play therapist (or any of the health care team) may play, more or less alone , with cars or dolls on a blanket in front of the patient in bed.

The 4-year-old boy, Peter, is lying on his side, with closed eyes. His tummy is large, his limbs are very thin. I have placed myself quite close to Peter, improvising very quietly on a pentatonic (five-note scale) lyre. The mother is also in the room. Her tears are flowing. No words are spoken by any of us. After a time, Peter opens one eye and looks at me. I am surprised. He is, perhaps, less unconscious than I have been thinking. Familiar with Peter's musical preferences, I whisper to him: Shall we sing Hocus-pocus ? I believe he is nodding. As softly as I can, I start singing about the jack-in-the-box. Peter interrupts me: The blanket, the blanket ! I have forgotten to cover his head with a blanket. (In this song the child that is chosen to be the jack-in-the-box is hidden under some kind of cover. The Swedish song ends with the words come forward! , The jack-in-the-box emerges suddenly, and all bystanders are, of course, highly surprised.) I cover Peter's head halfway with his sheet, sing the song with a brittle lyre accompaniment and remove the sheet most carefully at the end. Peter smiles for a second, but shortly after he closes his eyes again [33].

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An ecology of love

If music has been an integral part of the child's life, it can be a significant element to help the transition to death [30]. When a dying child's favourite song is being sung in the sick room, this performance may have a representative function of the patient's wishes or dreams and need for expression. In the case of Peter it is difficult to evaluate who benefited most from this very modest play activity: the mother or the child. Who is giving' and who is receiving are probably less interesting questions than to search out which meanings can be related to these acts or events. Peter's mother's experience was to see that her little boy preserved some normality to the last day of his life. For some moments he was not just a child with incurable cancer. The above example tell of a dying child's last expressive act, and other parents' accounts from the last period of their children's lives often focus on similar acts of creativity, playing, their very often simple enjoyments, or simply humorous events. Aspects like those mentioned here give us a more complete picture of the lost child, underlining his or her humanness, childishness, and not the least: the child's preserved healthy sides in the middle of sickness and the process of death.

When people are approaching death the feeling of loneliness can be overwhelming. Singing together certainly helps many experience that they are not alone. Singing together is a strong demonstration of being together. At the deathbed of the beloved person the singing together means being active participants. The musical activity can soothe as well as support the mourners and it can promote more or less collective deep and meaningful life experiences. One general aim is to foster an interplay of loving acts between patient, family and professsional carers. We can still discuss healing consequences even when a prolongation of life is out of reach. Healing is done at a variety of levels, not just for the individual, but within an ecology of relationships [43].

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Oxford Textbook of Palliative Care for Children
Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)
ISBN: 0198526539
EAN: 2147483647
Year: 2004
Pages: 47

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