24 - Feeding in palliative care
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 3 - Symptom care > 22 - Pain an integrative approach
22
Pain an integrative approach
Leora Kuttner
Introduction
Pharmacological methods those that rely for their effect on the use of drugs remain the standard approach for managing pain in most centres. They should no longer, however, be considered the only options [1, 2, 3, 4, 5, 6, 7, 8,]. Furthermore, there is a risk that because they are standard, pharmacotherapeutic strategies are assumed, sometimes without evidence, to be always the most effective.
Pain has been described as indivisibly a psychobiological unity [9] and approaches to managing it must avoid inappropriately dichotomizing methods of pain management into those that are purely psychological and those that are purely physical. In searching for how to refer to the panoply of techniques that do not rely on medication, terms such as mind-body are over-inclusive and cognitive-behavioural are too narrow. The term Integrative has emerged in recent years [3] to encompass methods that integrate physical and psychological approaches. Integrative approaches include, for example, biofeedback, hypnosis, imagery and relaxation as well as TENS (transcutaneous electrical stimulation), aromatherapy, massage and other physical therapies (Table 22.1).
Integration of all these methods, together with pharmacotherapy, is needed to achieve total pain management. Research has shown that children experience less distress and cope better with painful procedures and symptoms when they understand what is happening and are encouraged to participate fully in the process to relieve their pain [10, 11, 12, 13, 14]. This
Table 22.1: Integrative methods of pain management across developmental ages | ||||||||||||||||||||
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may mean that the child receives regular analgesic medication, with boluses for breakthrough pain, has therapeutic massages to release muscle tension and uses imagery as needed to increase comfort and control pain. Comprehensive pain control requires tailoring the interventions to the needs of the individual child and integrating a multimodality of pain management methods.
Children with chronic and life-limiting conditions have many losses. Knowing how to cope and deal with distressing symptoms has great value in enhancing the quality of remaining time [15]. This applies not only to children and teens, but to their parents and other care-givers. Methods that develop internal coping skills also empower children and teens and enhance their quality of life [16]. Being supported in learning to actively participate in pain relief and coping becomes even more important for children who will not have a lengthy lifetime in which to develop internal resources.
For children in palliative care who struggle with pain and other distressing symptoms such as fatigue, nausea, sleep and breathing difficulties integrative methods can become woven into the child's day with long-term benefits ameliorating these symptoms. Methods include cognitive behavioural techniques such as imagery, hypnosis, abdominal breathing, distraction, music massage, TENS, hydrotherapy, heat, cold, positioning and other techniques (see Chapter 31). Once learned, children and teens can use self-regulatory methods independently or with supportive guidance [17]. TENS, biofeedback and therapeutic touch require a trained professional [18]. In contrast, massage and music are part of contact comfort and everyday life, and can be most beneficial when the touch and sound is familiar, and when words are difficult or seem inadequate [19, 20, 21] Even when a child is severely ill or feeling depleted, the knowledge of what is available to help ease pain and suffering supports ego-strength allowing energy for end of life concerns (22, p.541).
Excellent pain and symptom management at end of life promotes control and frees the child, parent(s) and family members to deal with loss, grief, and changes in relationships and identity.
In this chapter, the integrated use of imagery, breathing, music and massage will be discussed, and illustrated with case examples. These techniques are naturally occuring phenomena that children and parents are familiar with and can comfortably use. The more specialized methods of TENS, hypnosis, and biofeedback where training or equipment is required will not be covered, although there is much evidence for their benefit in relieving children's pain [3, 7, 9, 11, 12, 13, 14, 17, 18, 23]. The emphasis in this chapter will be on methods that parents and health care providers find relatively easy to use at home, in hospice, or in hospital to control pain, reduce distressing symptoms such as fear or fatigue, and to increase feeling of well-being and peace at the end of life.
Total pain management
Pain is a complex multidimensional phenomenon. It is a subjective, unpleasant, and often noxious mind-body experience. We have a long history of under-estimating children's pain particularly that of neonates, babies, non-verbal or developmentally delayed children and children at end of life [4, 5, 24]. This under-assessment led to a systematic under-treatment of children's pain and a lack of recognizing the long term negative effects of poorly treated or untreated pain on the lives of babies and children [25]. In the last 25 years a revolution in research, teaching, practice and protocol in managing the complex nature of children's pain has led to greater improvements in care. There are still significant strides to be made. A greater appreciation of the total picture, in which the interaction of cultural, social, familial, personal, as well as physiological factors remains to be better understood [8, 10], is needed. This in turn will further improve pain management. Methods that are not pharmacological have a significant role in this process to achieve a comprehensive management of pain and suffering.
Integrative methods of pain management shift a child's attention from pain and suffering onto a more pleasant alternative. The measure of success tends to accord with the degree of imaginative absorption the child attains in this alternate experience [26, 27]. Often the experience will be integrated with invitations to calm emotions, maintain hopeful beliefs and increasingly experience positive body sensations. The child's creative imagination is enlisted to enhance these beneficial effects. Research, clinical studies and cases have shown that involving the child's attention through an absorbing pleasant experience, image or focus will maintain an experience of comfort so that acute, recurrent, chronic and pain at the end of life pain is controlled [7, 11, 13, 14, 28]. Staff don't need to choose between giving an analgesic or providing comfort care by doing imagery with a child. Thinking in an either/or manner greatly limits the possibility of total pain relief. These various methods work hand in hand to provide total pain management.
One of the necessary steps in caring for children with life-limiting and life-threatening illness is to include them early as part of the team. This means sharing information and discussing care options. It also requires that the child be adequately prepared for painful procedures, or sudden turns in the status of their illness for which unexpected pain management interventions may occur. Even young children need to understand the role, impact and side effects of anal-gesics, such as constipation, and their options. The child's threshold of pain and tolerance even for minor procedures can be severely compromised when the child is ill, fatigued or
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experiencing other distressing symptoms. Even a finger stick or minor blood draw can become trying or distressing. It is at these times that the child who hasn't developed coping skills is at greater risk for developing anxiety responses. Having information, being supported to question, explore, be listened to and participate in the decision making, is a central part of total pain management. Children are less likely to feel helpless and more likely to draw on internal or interpersonal resources.
Research indicates that children report that painful treatments and interventions can be worse than the experience of the disease itself [13]. As a result, child's preferences for painful medical invasive procedures must be considered. They need to be respected and wherever possible accommodated, for example, how a procedure works best, in which position, and with which adjunctive support or therapy. Though important, the criterion should not be the clinician's level of comfort as is often the practice but the child's. If not too traumatised by previous procedures, and with well-supported experiences and encouragement, children develop a range of coping skills to sustain them during invasive treatment related procedures [27]. Throughout the terminal phase of life, children and teens are often aware of their diminishing options. This adds to the importance of heeding preferences and concerns in providing comprehensive pain management.
Parents are an important component of the pain management team and total pain management. They can be their child's best advocate. Often if the child's condition has been long-term, parents become skilled both at assessing pain and knowing what kind of intervention will have optimum impact. In some cases however, parents may also fall into the pattern of under-estimating the level of pain, particularly if the child is by nature stoical or protecting the parent. In general, the child's perspective is that parents are the key to feeling safe, supported and protected. When asked what helped the most during painful procedures, children answered, The presence of their parent [28]. Consequently pain interventions with parental presence in the team have a greater likelihood of being effective.
Understanding the meaning of the pain
At end of life pain has increased significance. It can signify that the disease is progressing and/or that the child's death may be imminent. As a result, pain symptoms can carry added emotional distress and fears [22, 15]. How the child describes the pain, what words are used, emotional intensity, and associated behavioural signs become part of pain assessment. The integration of all these, together with parents and staff observations, build the Gestalt , a more complete picture than each discrete variable.
Case
For many years 16-year-old Jenny had used relaxation and imagery to help control the back pain she experienced with Ewing's sarcoma. She used pain coping techniques pre- and post-surgery to remove a cancerous rib, during chemotherapy, and through a harrowing bone marrow transplantation. She was highly skilled and practised at involving herself in her own pain management.
When she came to clinic walking more slowly than usual, her face drawn and pale, and reported in a tight tense voice that her back pain felt somehow different, in a way that was hard to describe, alarm bells went off for the oncology team. She was immediately scheduled for a bone scan, which sadly revealed progression of the tumour in her lumbar spine, well below the original surgery site. She understood ahead of everyone else that the pain signalled a turn for the worse. The quality of her voice was not one of fear, but of quiet dread, knowing that this time had arrived.
Assessment of pain quality
Children in palliative care often have more than one pain and many have concurrent pains and a number of distressing symptoms, including fatigue, nausea, difficulty going to and/or maintaining sleep [30]. Each pain and symptom needs to be assessed individually, noting its severity and character, and monitored over time. The characteristics of the pain its quality (throbbing, burning, sharp, achy) its location, duration, whether intermittent or ongoing help to determine the source of the pain, whether it is bone, nerve, soft tissue, or organ system. Knowing what precipitates and provides relief is part of pain assessment, and is crucial in determining optimum ongoing management.
Knowing the character of the pain can be used in a therapeutic integrative manner by providing a direct suggestion for comfort. Hope needs to be sustained and nourished during difficult painful times. For example, if the child reports a burning neuropathic pain:
Now as the pain relieving medicine goes into your IV, close your eyes and breathe out and you'll probably already begin to notice that your pain is moving from that burny sharp pain you felt earlier to be less bothersome breathe and let go allowing the sense of comfort you know so well to become stronger nod your head to let me know when you feel that happening '
We don't know whether this type of intervention alters pain threshold, but clinical experience suggests that it does influence the child's pain tolerance. The supportive intervention allows the child to focus on how it bothers him less and to notice the other positive changes, instead of remaining tense, fearful and distressed until the medication takes full effect. The child's ability to create comfort through abdominal breathing and
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imaginal involvement is not an indication that the pain wasn't as severe as reported, but as per the Gate Control theory of pain, it is a natural function of the brain's ability for downward modulation of pain signals. Responsiveness to suggestion, images, physical positioning deserve to be noted and charted as part of total pain management.
The therapeutic relationship: A component of pain management
In the terminal phase of life there tends to be a diminishing of energy and a narrowing of the circle of people with whom the child wishes to spend time. An established relationship built on deep understanding and respect, will provide the foundation to choose the methods that best fits the child's current symptoms or pain problems [16]. Relationships with history and continuity are most often those with the greatest potential for therapeutic benefit. Children at end of life are particularly sensitive to issues of abandonment and loss, as they prepare and move towards their ultimate separation. Not heeding or being sensitive to this can damage a previously good therapeutic relationship.
Understandably, it is harder to begin a relationship as the child is nearing end of life than when the child first enters palliative care or is first diagnosed. It is furthermore important to note that:
In working with a child facing death, the therapist must be able to enter the threat with the child and accompany him or her down the road towards ultimate separation (Sourkes, p 266.)
With the hardships of living with a life-limiting illness and its many unpleasant treatments and procedures, children in palliative care form special attachments to favourite staff members. As a result, there are occasions a child will request to wait for the return of a preferred staff member before being willing to proceed with a painful procedure. These special attachments, like the parental attachment, are an important part of total pain management. The bonds are an important source of comfort, particularly during painful and uncertain times. The staff member has become attuned to the child and built a trusted and successful working alliance. Sometimes the child and staff member have worked out a system in which the child feels mastery and a greater feeling of safety. While special relationships can be supported by others, the pain relieving information system must be charted and shared with other members of the team so that competent care and beneficial therapy for the child isn't interrupted, causing problems in the day to day pain management.
There are occasions where there isn't the luxury of forming long relationships, when an invasive medical procedure needs to be done when the preferred staff member is away. This should not be an impediment. Without knowing a child well, empathic health care professionals can engage with a child in a sincere and professional manner and establish sufficient trust in a short time in order to proceed [6, 8, 9 10, 11]. Asking the child or parent to provide some history of how the painful procedure was previously best managed, what interventions were most helpful and what were not, and given that, what would the child like in the upcoming procedure. This scenario applies not only in hospitals, but in home-care and hospice.
One of the benefits of having some history with a child is that the health care professional can, if time is on one's side, develop a bag of favourite tricks with which the child has experienced pain and anxiety relief. These techniques then become a mainstay or reliable source of comfort at end of life. Methods and styles vary with developmental age (see Table 1), taking into account cultural and ethnic factors. Parents' input is often invaluable. As part of the care plan all professionals working with the child and family know these preferences.
Supporting parents to provide pain relief and contact comfort
With continuing illness and fatigue a dying child tends to draw into him/herself and reliance on parents changes, becoming either stronger or more distant [16]. This can take the form of the child preferring quiet and more privacy, or communicating non-verbally or using mere sounds, which some parents, attuned to their children, may more easily interpret. Staff need to empathically support parents to adjust to these changes. Parents find that providing a variety of comfort measures for mild, wearing types of pain, like using a hot or cold pack or gentle massage with or without familiar music can provide some easing of distress and maintain some connection. Symptoms of fatigue, or restlessness can be similarly addressed.
Parents unsure of what to do when their child is in pain can draw from this list of suggestions:
familiar physical comfort-contact from earlier years, such as stroking or tickling back, arm or face
a foot massage with peppermint oil
favourite music or song
story-telling, or stories on tape
remember when experiences, recalling a special event or enjoyable holiday experience
The child is supported to experience a more pleasant alternative, such as the soothing sensation in a non-painful limb, when other body parts are feeling pain or discomfort. These shifts in attention and absorption for both parents and child provide a healing framework within which to decrease mutual feelings of helplessness. Providing and sharing memories can be part of creating memories. These are child-centred, intimate and
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life-affirming ways of relating to a child when energy is low and the child has little strength for talk or play.
Parents can be guided to do imagery and breathing, simply and directly with their sick child, as in this example:
Case
Seven-year-old Sarah, dying of spinal muscular atrophy, chose to be cared for at home through her terminal illness. She became irritable and restless a few days before her death. Her mother Margaret thought she was in pain, indicating she didn't know how to make Sarah more comfortable. On a visit to the home the Hospice nurse suggested that Margaret increase Sarah's sustained release morphine. They then discussed times when Sarah had been especially happy. The nurse demonstrated, guiding Margaret to lead Sarah towards easier deeper breathing, and coached her on suggesting memories and images of a happy family camping trip. Margaret then directed Sarah's attention to the playful fun-filled experiences that they had shared, and added that she could leave the pain far far away. Sarah's anxiety began to lessen. Margaret felt relieved that she was still able to help her daughter. The imagery of that happy holiday provided a bridge for Mom to then say what she longed to say to her daughter: Just as we have remembered this wonderful camping trip, we will always remember you We will always love you You will always be a part of our family'.
Integrative methods
The methods of imagery, music and massage will be discussed in greater depth, with examples on how to integrate these into a healing experiences to better manage pain and other distressing symptoms that cause suffering.
Imagery
Therapeutic imagery is gentle, non-intrusive, child-centered, and energy conserving for children and teens in pain and distress [31, 32, 33]. A picture is worth a thousand words, and for those in palliative care without verbal facility, an image can convey a great deal when energy is diminished and time is precious. Furthermore, imagery can provide a meaningful alternate experience when the present reality is fraught with pain, fear, or physical tension or fatigue. Absorption in an imagery experience can sustain or develop greater inner strength and peace. It helps a child manage an intolerable situation, and aids in the process of letting go as death approaches.
Imagery has a power and a gentleness that are consistent with the psyche's best ability to heal itself. (35, p.165).
Images are an aspect of the expression of self, as much as words, feelings or thoughts. Over time children and teens learn to feel empowered by, and often to take delight in the creation and healing use of images.
When used for pain control, imagery works synergistically with analgesics to reduce pain and discomfort [31]. As the child's attention and absorption in the imagery increases, the capacity to increase comfort, dissociate from the pain, reduce anxiety, or alter the pain sensations and perceptions, becomes greater [6, 9, 11, 13, 14,] . Imagery can be applied in many ways. Broadly there are two approaches: focus directly on the pain as an image to alter, or create an image that is disparate from the pain. It is unclear whether associating with the pain or dissociating from it is more effective [36, 37]. Nor do we know how imagery through the neuromatrix of the brain-pain system provides pain relief. Pediatrician Dr. Karen Olness writes:
In controlled studies our research has documented the abilities of children to control voluntarily certain physiological processes previously believed to be autonomic (such as, transcutaneous oxygen, peripheral temperature, and brainstem auditory evoked potential). As children succeed in accomplishing the desired control, they often describe spontaneous images which they used to effect the changes. Images vary from child to child; they are unique and unexpected. We are convinced that understanding the source and nature of the images that trigger the neuro-humoral cascade is more important than the machines to which the children are connected [38, p.173].
How To Begin
Imagery is a natural process for all of us, but particularly for children aged 3 to 6 years whose cognitive boundaries between fantasy and reality are quite fluid [11]. Pre-school children move easily into Let's pretend . or Let's imagine as easily as they move into playing. These familiar and comfortable introductions make it easy to engage the younger child in therapeutic imagery. Developmental age and ability influence which approach is best suited (Table 1). The child's energy level, ability to focus, willingness to talk, and type of pain and symptom will also guide in the choice of technique.
Older children may need a little more formal invitation, such as, How about travelling into your inner world , or Let's use your imagination to ', or Would you like to experience how you're able to change what is happening by using your imagination '.
It's crucial to know which image experiences the child prefers, dislikes, or wishes to avoid. For example, if a child is afraid of heights, imagery such as going up in a helium balloon, or a flying carpet' would be counter-productive. Information from the parents or other members of the family help establish the therapeutic experiences and images that enhance comfort, create a sense of well-being and deal effectively with fatigue and fear.
Use All Sensory Modalities
With some skill and considerable sensitivity, imagery is rarely, if ever, frightening or disturbing. Children who are dying seem
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to be particularly receptive and responsive to imagery, perhaps even more so than adults. The child's experiences can be surprising, helpful, illuminating, and informative. For the dying child, discoveries can be transformative in shedding fears common to children who are profoundly ill. In order to pull the most out of the imagery experience, one can draw on all the senses, or support the child's primary sense with the other modalities.
Music
Music can be highly therapeutic [19, 39, 40] (see Chapter 10, Children expressing themselves), whether used in a systematic intervention as music therapy within a hospital setting or in an more informal way to provide another focus or to improve the emotional climate. There are numerous articles on the use of music in palliative care with adults, yet few on the use of music therapy with children during palliation [19, 37]. Music therapy addresses a need for self-expression, provided through music-assisted creative play, or through song-writing dealing with issues of loss, pain, and separation.
Case
A 12-year-old girl with cystic fibrosis referred herself for music therapy during one of her many hospitalizations. The therapist used techniques of song-writing and parody. The pre-teen wrote Hospital Blues . As her condition deteriorated, she shared the process of music and song writing with her therapist to address her pain, fears and separation from friends, easing the process for both herself and her family. [38, p.37]
Music is a natural way to bring children's normal world more strongly to the fore, especially when in pain, severely ill and/or nearing end of life. In its many forms, such as listening to a walkman through headphones, or a personal stereo, playing an instrument or singing, music can change a tense or fearful atmosphere to one of greater ease when a child is tense suffering or in ongoing pain. Appropriately chosen music will promote relaxation especially if it is a familiar or favourite melody. Playing a favourite nursery rhyme is an easy addition to enhance comfort, for example, during a blood transfusion for a toddler or pre-schooler, or playing hip-hop music can do the same for a teen. Singing, creating new verses, or writing a song together can bring more meaning to times of greater restriction, such as being being bedridden. It creates interest, helps minimize restlessness, and can make long periods of time feel shorter.
In contrast to a hospice, parents in hospital report feeling worried that the child's music will be intrusive to the ward. They need to be reassured that this is generally not the case. Most staff members welcome the change of sound, and appreciate the therapeutic benefit of music.
Message
Massage is used therapeutically when children are in pain to decrease muscular-skeletal pain, decrease muscle-tension, ease spasms and contractures, create sensations of comfort, increase children's capacity to achieve a deeper restful state or fall asleep. It can be initially guided or directed by the child. Children will tend to opt for massage on a part of their body that is unaffected by pain or disease, as this experience seems to create a white noise effectively blocking continual low-level discomfort from various pain sources. Despite its obvious value, massage is not yet widely practised in pediatric palliative settings [20].
Massage is probably one of the most underused therapies in Pediatrics. It has few contraindications; common sense precludes the use of vigorous massage over a surgical wound, skin infections, abrasions or burns. Although time intensive, massage can be provided inexpensively if parents or other family members are trained to do it. We have found it one of the most helpful adjunctive treatments for patients with chronic pain, particularly because it empowers the family to take an active role in helping reduce a child's symptoms. [20, p.456]
There are informal and formal techniques of massage. Formal massage includes pressure point techniques such as shiatsu and acupressure, long gliding strokes of Swedish massage, and the deep tissue massage of Rolfing. In most cases pressure point techniques are reserved only for particular tension related pain and Rolfing is rarely used with children. Successful physical therapy management of children's pain ideally takes place in an environment of integrated care to address the multifaceted issues involved in the treatment of pain' [18, p. 434].
The informal methods have great value in easing pain and discomfort for children in palliative care. Massage is often given with lighter gentler strokes and there is no assumption that the nurse or parent has specialized training in one of the many forms of massage. At end of life, a very gentle caring touch is preferred, avoiding painful areas where the child or teens experiences sensitivity or discomfort. Children may opt to have their favourite staff member give this more intimate therapy, often aided by nicely scented creams, such as lavender, peppermint or citrus.
Case
When 15-year-old Jenny was in isolation struggling with graft versus host complications from a bone marrow transplantation, the only part of her body that was not tender and painful were her feet. She found it hurt to talk yet she did not want to be alone. When offered a number of suggestions, such as music, TV, a story or a foot massage, she chose the latter. She was given a gentle foot massage. She began to drift off as each toe was gently rubbed with peppermint cream, avoiding pressure in the soles of her feet. This remained a favourite pain-relieving technique for Jenny, which her Mom continued when she was discharged home.
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Integrating imagery music and massage
Imagery can be initiated and integrated with other methods in a few ways.
A. Imagery can be spontaneous, generated freely by the child, or by asking:
What would you like to do be doing now if you were not here?
I'd be playing baseball
Good. You know you could play baseball right now in your mind. You know the game so well. Would you like that? OK. Close your eyes and go off to the Baseball field that's it .. So tell me what's happening?
If needed, other methods such as massage or suggestions for greater energy resulting from the game can be added to amplify the therapeutic impact.
B. A specific image or scene that is known to have positive meaning can be proposed. The child is invited to go along to experience and in so doing distance or dissolve the pain, fear or nausea and become more comfortable. A CD or favourite music tape can be played simultaneously to enhance the effect so that the child is able to more easily shift or dissociate.
Case
In her final hours of life, Tracy, a 7-year-old girl, was in a light coma. Although her pain appeared to be fairly well managed, Tracy's facial expression indicated pain, anxiety and possibly nausea, which had previously distressed her. Her brow was wrinkled, and her mouth was open and turned down. Knowing that taking her to the beach' was an image that had, in the past, evoked a strong relaxation response and reduction in her anxiety and pain, Tracy was invited to come to the beach and feel the easing warm sun all over her body and especially relaxing her tummy .' Her father on his own initiative put on a CD of the sounds of waves. As the familiar image unfolded, Tracy's facial expression relaxed. Her brow smoothed out, her mouth closed, and her lips turned up. She retained that peaceful expression, while the seascape sounds continued until her death, 5 hours later.
C. Imagery can be controlled by taking a spontaneous image and using it in a deliberate therapeutic way to release the child from pain or fear. This can easily be integrated with other techniques like using music or massage.
Case
Thirteen-year-old David was a boy who couldn't talk. For eight years he battled with a rhabdomyosarcoma in the right maxillary sinus, and subsequently an osteosarcoma in the radiotherapy field. A quiet boy, David never revealed much of his inner self, thoughts or feelings. Building a trusting relationship with David took 8 months, answering the few questions he posed, giving information when necessary, and supporting him as his symptoms, especially pain, worsened.
Over the course of 8 months, David's tumor remained localized, expanding over his face, pushing his right eye outward and growing down through his hard, and later soft, palate. Towards the end of his life it was virtually impossible to understand him when he talked. David chose not to discuss any aspect of his impending death, until the day before he died. As his last hours approached, David's fear and anxiety overcame his natural reserve, in a display of tears. Drawing on her relationship with David, Clinical Nurse Specialist Cindy Stutzer reported the following:
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Indication and contraindications
When integrative methods of pain management are introduced and developed during the earlier stages of the illness they become an extra therapeutic aid and competency during tougher times in palliative care. Particularly for those children who need greater self-control, these methods meet that need.
Methods such as imagery are not appropriate for every child or adolescent. Imagery is more difficult to implement with non-verbal children and not suitable for those who are significantly developmentally delayed or mentally handicapped. However, music, contact comfort, and massage methods can be used with all children at most times, and can be introduced as part of total pain management.
Children who have developed their own coping techniques, relying on spontaneous imagery and relaxation to ease pain, often become remarkably creative: Ten year old Kyle told us that it works best for him when he makes his body like a wet noodle.' These resourceful children develop a strong inner sense and great sensitivity to their body signals. For Gerard, relaxation and imagery became an internal scanner that built self-reliance and a relationship with his failing body.
Case
Diagnosed with leukemia 13-year-old Gerard had a rough course of medical treatment. Through the years, particularly while in isolation during transplantation, he developed his ability to relax and using sensory-based imagery. He would lie down, focus on his breath following it with all of his attention as it moved in, around his body and out. He would do this until the pain in his body become more distant. He started from the top of his head and systematically through his body, focusing on each part that needed easing and release from pain. He practised, perfecting this systematic technique which he called my scanner . He insisted on a quiet room, no interruptions and the freedom to do it by himself. He loved the independence of this process and how it calmed and gave him self-control. One of the benefits of this self-regulatory technique was that he became very aware of how each part of his body felt, his typical body sensations, and what they meant. This enabled him to speak with greater authority to the staff about his status of health.
Gerard continued to use his relaxation and imagery in a quiet and personal way throughout the remaining 18 months of his life. It had become fully integrated into his way of coping with any pain and discomfort and helped him maintain an impressive composure and dignity to his last days.
Monitor the impact of the intervention
It is advisable to pay close attention to how the child responds to these integrative pain techniques, and to stop if the child's attention dissipates or fatigue sets in. If fatiguing is a consistent pattern, it could help to suggest ways that through the imagery experience the child could gather needed energy from the relaxation, or increase the depth of the sleep that follows.
Non-verbal behaviours are as important cues as verbal ones. These include facial expressions, position and movements of the body throughout the experience. For example, Tracy (above) provided only non-verbal clues to her inner experience. Monitoring these physical changes indicated her increasing involvement with the imagery and the relief that was
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provided. If there is the sense that something is amiss, check with the child: If anything disturbs you let me know or You can change anything that you don't like . When freed in this way to enter the experience more fully, children usually enhance the effectiveness of the imagery, music or massage for pain relief.
Integrative methods in hospital
In contrast to Hospices, Hospital can be non-restful place for children. Music, imagery, or the two in combination can be a means to creating a more restful and supportive environment for children in pain. Once learned these practices can easily be audio-taped and transferred for use at home.
Case
Fifteen-year-old Jamie was wary of using imagery, but agreed to discuss its possibilities. She was having a difficult time sleeping in the hospital. Achy bone-pain, from osteogenic sarcoma, IV pumps with alarms, the lights and the interruptions at night, as well as her own active mind, contributed to insomnia. After exploring several options with her, she agreed to listen to relaxing music to calm and focus her mind and to see what images came to her. She saw her hip as a throbbing red fire-ball, hot and burning and emitting spurts of fire down her leg and through her pelvis (this is neuropathic pain). Together, using her imagery we made an audiotape with background music she had chosen from her CD collection.
How about making snow balls and let's start throwing them on the fire one after the other .'The quenching of the pain began slowly. She was simultaneously receiving IV opioids, but control of this pain through opiods was proving difficult to achieve. Her comfort was partially increased by her older sister massaging her feet so that she could focus on the pleasant, non-painful sensations in her body. Adjunctive medication was added over the next hour. Despite her clear discomfort Jamie remained involved in the imagery, reporting that it gave her a sense of greater self-control.
Jamie used the tape at times throughout her hospitalization and at home. She told us that it took her away from the hospital, its noises, and her achiness . She reported that sometimes she would fall asleep before she was aware of any images at all.
Conclusion
Palliative care is about living as well as possible despite thepresence of a life-threatening condition. Part of our mandateis to bolster families strength and ability to cope, maximizingthe quality of time together for child and family. Fundamentalto achieving this is the development and active practice ofcomprehensive pain management to address acute, procedural, recurring and chronic persistent pain. Pharmacological, psychological and physical methods can be integrated to achieve this. These methods can also be effectively used toaddress and control distressing symptoms such as fatigue, restlessness, fear and nausea and despair at end of life. Biopsychosocial considerations are a cornerstone of good palliative care. Integrating pain-relieving methods such as, imagery, music and massage can be effective as part of the panoply of methods other than pharmacological, and can be synergistically and effectively used by children, their parents and health care professionals to control a child's distressing symptoms during palliation.
Pain must be controlled if families are to say their goodbyes and recover from their grief rather than dwell on memories of a loved one in agony. [41, p.2].
Acknowledgements
Thanks to Cindy Stutzer MSN and Dr Stefan Friedrichsdorf for their helpful comments in preparing this chapter.
References
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