33 - Working as a team
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 > 31 - Complementary and alternative medicine
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31
Complementary and alternative medicine
David Steinhorn M
Michelle Rogers
Introduction to complementary therapies
The purpose of this chapter is to familiarize the reader with the wide range of modalities contained under the rubric of Complementary and Alternative Medicine (CAM). Given the diverse nature and history of the field, it is impossible to mention all known disciplines, but an effort has been made to address those most commonly encountered in practice by western medical physicians and nurses.
In the past, there have often been misunderstandings, and pre-conceived biases associated with other terminology, and the term, complementary therapies , or CAM, will be used throughout this chapter, to refer to a wide range of therapeutic and treatment modalities that are not widely taught in medical schools. The term has been chosen for its neutral meaning. By contrast, therapeutic approaches practiced by most western physicians will be referred to as Western or allopathic , a term commonly used in North America. The derivation of these terms will be considered later in the chapter. It should be recognized that each school or philosophy of healers tends to view its own approach to healing as the more traditional one.
Background
From time immemorial, societies and cultures have found ways to care for injured and ill individuals. Such efforts stem from a universal desire to extend both the quantity and quality of life, to protect individuals from harm, and to relieve suffering. The concept of, and approach to, illness and its treatment have changed dramatically. The earliest civilizations must have viewed the body as a mysterious, unfathomable entity, and disease as an inexplicable process, mediated by invisible forces or spirits. Healing was equally mysterious, with prayer, dancing, chanting, and herbal remedies the primary tools of early healers. Out of this early existential view of health, disease, and healing, a mechanistic model of disease began to evolve. Patterns of disease were gradually identified, and healers found more reliable herbal or chemical remedies for various symptoms and ailments. These developments laid the foundation for understanding disease as a disruption in natural processes, which could be rectified through appropriate intervention. However, throughout history, prayer, sacrifice, and supplication of higher powers continued to be important routes to healing, in an attempt to placate the invisible world thought to be responsible for ill health. Little attempt was made to distinguish the individual from his or her physical ailments. With the renaissance and age of enlightenment in the West, western physicians began to separate the physical from the psychic components of the individual. The development of science, and the elevation of reason over emotion in the West over the last few centuries, have led to a still greater separation between physical disease and the inner, psychological, or spiritual condition of the individual. Contemporary medical science has only recently begun to recapture the earlier vision of wholeness, and to appreciate again the inextricable connection between one's inner state and somatic disease [1, 2, 3, 4, 5, 6].
Thus, the movement in western societies towards a more integrated view of a patient's state of health, espoused by palliative medicine, in many ways represents a rebirth, and a renewed exploration of approaches that often have their roots in ancient systems of medicine. A common theme is the identification of disease with a disruption in some form of natural balance that occurs in health. This is a principle that has echoes of modern understanding about the importance of a normal internal milieu maintained through homoeostasis, but often extends it well beyond the merely physical.
Herbal medicine has always been an important part of healing for African, South American, and Native American shamans, and healers from the Far East to Europe. In Europe, homeopathy was developed in the eighteenth century by the German physician Samuel Hahnemann, who formulated a set of laws and principles governing health and disease. Homeopathy is still widely used in Germany, India (in conjunction with Ayurvedic medicine), and elsewhere in western Europe and North America. There is a national Homoeopathic Hospital in London.
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Acupuncture has a 3500 year history, with its inception in China. The Huang Di Nei Jing, a collection of writings that serves as the primary foundation for Traditional Chinese Medicine theories, is over 2000 years old. It was the first book to discuss anatomy, physiology, pathology, diagnosis, treatment, and prevention of diseases. The concept of Yin and Yang developed during the Yin (1600 1046 BC) and Zhou (1046-221 BC) Dynasties. This concept sees two opposite, but complementary, principles in all phenomena of the natural world. Yin and yang provide the conceptual foundation and framework for present Traditional Chinese Medicine, which is still widely used in China. Many medical schools there teach this traditional medicine, alongside modern pharmacological and technological based medicine.
Commonly used herbal and naturopathic medicine have rich traditions in western Europe. Modalities used included herbal and homeopathic medicines, hydrotherapy, diet and nutrition recommendations, massage, and energy work, in programs designed for the needs of the individual patient.
While health care traditions in some places have continued largely unchanged over many generations, western medicine has made significant technological strides over the past 150 years. The last half of the twentieth century witnessed improved survival rates, and reductions in morbidity for many congenital and acquired diseases of childhood. At the same time, this period brought a growing awareness that science alone may not be able to provide all the answers to alleviate suffering, for humankind as a whole, or for individuals. Patients hospitalized in western medical institutions who receive state-of-the-art medical care, may nevertheless, feel that many of their wider needs go unmet [6, 7]. One expression of this is that parents are requesting the incorporation of complementary therapies into their child's care, in the hope that they will more fully address spiritual, emotional, and other needs. Such requests seem to be most common for children suffering from conditions which western medicine continues to be unable to cure, or to treat adequately [8]. These are the same outcome priorities, and the same patient group addressed by palliative care services in children; it is not surprising that most professionals working with dying children will encounter families who would like to access CAM.
As in most fields of research, the use of complementary medicine has been more thoroughly studied in adults, both as in-patients and out-patients, than in children. An important report of CAM use by 2055 adults in the United States found that that the use of some kind of alternative therapy had risen, from 34% in 1990 to 41% in 1997 [9, 10]. More than US$21 billion was paid for alternative medicine services during 1997, with more than half of this coming from patients themselves. Third-party payers provided reimbursement for a large number of therapies, but the willingness of private individuals to pay directly for non-reimbursed CAM services was an eye-opening, unexpected finding. 96% of the survey respondents, who consulted an alternative practitioner for a primary complaint, had also seen a conventional physician in the preceding 12 months. Only 38.5% acknowledged discussing these therapies with their physicians, the others indicated either embarrassment, or fear of offending their physician, as the reason for not informing them [11]. This study suggests that many patients will access CAM's, whether their physicians, want them to or not, and that unless encouraged to discuss it, they will often keep such contact secret.
CAM therapies as adjuncts in palliative care
One of the underlying principles of palliative care is that of holism the recognition that all human experience takes place not only in a physical dimension, but also in the emotional, social and spiritual ones. Conventional western medical approaches may not be enough to alleviate the wider suffering of approaching death, and for many, the use of CAM therapies to augment conventional care is very attractive [12, 13]. A recent report on the prevalence of inadequately relieved end-of-life symptoms in children reinforces the importance of this issue for the paediatric palliative care team[14]. As in other situations, problems which they feel are inadequately relieved by conventional approaches, are the ones for which families frequently seek out CAM interventions. These symptoms fall into two groups: physical symptoms, such as nausea and pain, that have not been adequately controlled, and emotional-spiritual symptoms of depression, fear, and existential dilemmas that have not been adequately explored, and remain unresolved. Ironically, some of these symptoms go unrelieved, not because of a failure of conventional medicine per se, but because of a lack of expertise available to the child or family in practice.
CAM worldwide
In 2001, the World Health Organization (WHO) published a report assessing the current use of CAM therapies, the state of legislation and regulation, education/training of CAM practitioners, and the state of health insurance coverage for 123 of its 191 member states [15]. Although it remained incomplete, due to repeated legislative and educational policy changes, the report provides an excellent summary of CAM worldwide in 2000. A second document entitled, World Health Organization Traditional Health Strategy 2002 2005 sets out strategies for the worldwide development of CAM therapies [16]. By providing these guidelines, the WHO has begun to set international standards for training and licensing of providers (Table 31.1).
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Table 31.1 Resources for CAM therapies | |||||||||
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The recent attention on CAM therapies has served to highlight the differences that exist in health care delivery in various regions of the world. Systems for the delivery of medical care range from the shamans of various indigenous tribes worldwide, to the most technologically complex systems of the industrialized countries. Within this broad spectrum, one finds a large variety of health care providers, including the many CAM providers, practicing in all areas of high population density. The philosophical roots of conventional western medicine grew out of a rationalist approach, which explained disease by identifying a problem, studying it, and accumulating a body of knowledge and understanding, from which specific treatments could be developed. According to this model, medicine is seen as the source of healing for a body and nature which have gone wrong . Because treatment is applied from outside, this approach is sometimes referred to as allopathic.
By contrast, the vitalist or empiric approach is that exemplified by some CAM practitioners. Vitalists see the entire individual as an integrated entity that interacts with its environment, whereas western medicine has a recent history of seeing the patient's physical illness separate from the many other human dimensions. Of great importance in the vitalist view is the capacity of the body to heal itself. This view of disease and healing, which is the basis of homeopathy, naturopathy, and some schools of chiropractic medicine, sees the physician as an adjunct or facilitator of the body's ability to heal, rather than as the primary agent of healing.
In the European Union, North America, and other regions, two principal problems face CAM therapies, pertaining to the licensing to practise complementary medicine, and the reimbursement of treatment by both social health insurance systems and private insurance. In all countries of the EU, access to medical practice is regulated by specific laws; however, legislation appears to vary widely between the EU countries. Similarly, reimbursement is different between countries, with many providing insurance coverage only when CAM therapies are provided under the supervision of a physician. In many countries, CAM practitioners are viewed as allied health care providers, and frequently work under the direction of a licensed physician, rather than having independent practices, as occurs often in the United States.
In the United Kingdom, a government committee was charged with evaluating the state of CAM therapies, and found that a lack of regulation of CAM might put the public at risk of poor, or possibly harmful, treatment by unqualified practitioners [17]. The Committee concluded that acupuncture, herbal medicine, and possibly, non-medical homeopathy, should be subject to statutory regulation. They recommended regulation of herbal medicines. A recommendation was made for standardized training of CAM practitioners with independent accreditation. Registered conventional health professionals are encouraged to become more familiar with CAM, and those working in the best regulated CAM
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professions should strive for closer integration with conventional medicine. The dissemination of information to the public and health professionals was found to be inadequate, and recommendations have been made for improving this situation. Information is available from the Research Council on Complementary Medicine (Table 31.1)
In North America, there are also regional differences for CAM practitioners. Even within the United States, individual states differ widely in their approach to licensure of specific CAM therapists. There are, of course, well-established licensing mechanisms in all states for the major medical providers, which in the United States include chiropractors and osteopaths, as well as allopathic physicians. Licensing arrangements for other practitioners are much less consistent. Patients and referring physicians must contact their local professional boards, or licensing agencies, to find practitioners who have achieved basic standards of training and credentialing recognized by their respective professional boards.
In the United States, medical curricula for osteopaths are similar to those of allopathic physicians. Osteopaths are licensed to prescribe medications, and many complete additional training in traditional allopathic residencies and fellowships. Other health care providers function as allied health care workers, rather than as physicians. There are training and licensing standards in many states for many CAM practitioners. Worldwide, professional certifying boards with training programs for many CAM therapies are available. Many of these programs fall under the banner of Traditional Chinese Medicine (TCM) which includes a wide range of modalities, such as acupuncture, life-style changes, herbal and dietary manipulations, and massage. Schools of TCM can be found in most industrialized countries, and can be helpful in providing information to physicians.
General paediatric use of complementary therapies
Comprehensive clinical studies regarding the use and effectiveness of CAM in children are lacking. However, approximately 20% to 30% of paediatric patients have received one or more CAM therapies, and in teenagers, the proportion reaches 50 to 75% [18, 19, 20, 21, 22]. In children, these interventions have been used for acute and chronic conditions alike. The most common pediatric conditions for which complementary therapies were used include symptoms of common colds and influenza, irritable bowel disease, asthma, juvenile rheumatoid arthritis, and cystic fibrosis. Symptom relief during oncology treatment [19, 23] [24] was another common cause. Use of complementary therapies among pediatric patients, including infants with chronic, recurrent, or incurable conditions such as cancer, asthma, rheumatoid arthritis, and cystic fibrosis, range from 30 to 70% [8]. Complementary therapies have been used with varying levels of validation, for a wide variety of common pediatric conditions, including disordered sleep, perioperative nausea, allergies, attention deficit hyperactivity disorder, depression, and similar chronic distressing symptoms. A number of reports indicate potential benefits from the use of complementary modalities in the newborn period, including sick premature infants receiving intensive care therapies [25, 26]. A recent survey of the use of CAM by children with cancer demonstrates that 75% use at least one modality [27]. Traditional folk remedies also continue to be important in many ethnic and cultural groups [28, 29, 30, 31].
Use of CAM is, therefore, widespread among families of children with life-limiting conditions. It is clearly important for health care workers to inquire sensitively into the use of such therapies, and the belief-systems that may underlie them [32].
Definition of terms
Integrative medicine
When complementary therapies are included in an intentional blend of western and non-western methods, the approach is sometimes referred to as integrative. Integrative medicine describes an approach that considers a broad range of therapies, therapeutic modalities, and approaches selecting those that have the best evidence of safety and efficacy within the context of holistic care [33]. The term, therefore, describes good palliative care in children.
Alternative vs. complementary therapies
It is worthwhile, at this juncture, to discuss the distinction which has been made between alternative and complementary therapies. It could be argued that, much as the adult hospice movement began as a counter-cultural response to perceived inadequacies in caring for dying adults, the field of alternative medicine grew out of the dissatisfaction patients experienced with conventional medical care for acute illnesses. Alternative approaches were seen as equivalent substitutes for conventional therapies, in spite of the frequent absence of convincing data to support the efficacy of the therapy. While western medicine increasingly demands reproducible, objective outcomes, alternative therapies are often based upon historical traditions or anecdote, lacking rigorous validation.
Despite medical progress, there remain many conditions for which standard curative approaches are unlikely to be effective in substantially increasing the quality or duration of a child's life. These include, for example, some conventional treatments for progressive brainstem glioma, leukaemia that recurs after successful bone marrow transplant, and many of
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the inherited neuro-degenerative disorders, such as Tay-Sachs disease. It can be argued that for patients with these conditions, it is acceptable to try an alternative, providing this does not itself cause suffering (see case study of DM below), and can offer results as good as or better than those obtained through the conventional recommendation.
Where conventional therapy offers demonstrable benefit to patients, e.g. insulin for Type-I diabetes, or treatment of most forms of childhood cancer, health care providers have a legal, as well as a moral, responsibility to act in the best interests of the child. Indeed, in most countries, to withhold such treatments would constitute a breach of parents legal responsibilities to their child. At the same time, it is usually important to support a family's desire to explore additional options, if they so choose. The term complementary has come into more common usage, to indicate therapies which are used as potential adjuncts to conventional therapy.
Case
Supporting the family. DM was a 8-year-old male of eastern European descent, admitted for loss of developmental milestones and seizure activity. An idiopathic degenerative CNS process was diagnosed, after many weeks of evaluation for known metabolic and infectious aetiologies. The seizures became progressive and intractable, in spite of attempts at control with drug induced coma, and supplementation with coenzyme Q10 and pyridoxine, in addition to conventional anticonvulsants. The family sought additional help, and requested massage therapy sessions, acupuncture, energy healing sessions, magnet therapy, and bee venom injections, as well as other folk remedies. The medical team made decisions regarding the potential risk of each requested complementary intervention, and permitted the family's chosen therapist to provide those interventions with courtesy privileges, in the presence of the hospital nurse and, often, the physician. The physicians refused to permit the administration of bee venom, due to the known potential risk and the profound degree of cerebral atrophy apparent on MRI studies, suggesting irreversible loss of brain tissue and metabolic activity. The hospital team felt that permitting the therapies provided an indication of good-faith, in leaving no stone unturned in attempting to improve DM's condition. Rather than refuse the family's requests, which would likely have driven them to seek out other medical care, an effort was made to work with them. The family often became demanding and, many felt, unreasonable, in the requests for the administration of supplements brought in from the outside. In spite of the frequent conflicts between the health care team and the family's unusual requests, the family continues to see our institution as the one to turn to when help is needed, suggesting ongoing trust. The child remains in a vegetative state, on a respirator, after four years. It is of interest to note that the magnet therapist brought in by the family refused to treat the patient, due to the presence of advanced cerebral atrophy, which she felt would not respond to her interventions (note- her practice of magnet therapy was primarily used in adults, following hemorrhagic stroke, which she believed could respond well to her interventions).
Goals of therapy
When considering all therapeutic and palliative interventions, whether for acute illness or the relief of distressing symptoms in life-limited patients, it is important to recognize that multiple goals may co-exist. Although medicine continues to see curing disease as a primary mandate, and it is often the one for which patients seek attention, there remains a range of valid options, even when a cure is not possible. It is just these additional options which are most relevant to patients at the end of life, and are often well established in palliative care practice. Practitioners of complementary therapies share similar goals in planning healing interventions. Many non-western traditions, which place great importance on the effect of the inner psychic, or spiritual, state on somatic disease, will focus more heavily on treatment options which aim to create a deeper sense of inner peace, tranquillity, and harmony with life. Improving the sense of inner tranquillity is an important goal for contemporary palliative care for children. Thus, complementary approaches may be beneficial adjuncts in the care of dying patients.
Suffering in children
There is little authoritative literature regarding the nature of suffering in children. A major component of suffering experienced by dying children comes from distressing physical symptoms [14], but it is an axiom of good palliative care that the physical dimension is only one aspect of suffering. While there are differences in the logistics of palliative care delivery across different cultures, the wider issues that can hinder personal happiness and individual fulfilment are similar worldwide [34]. Contemporary palliative care recognizes that lingering existential uncertainties, for example, may contribute to overall suffering, as death approaches. Resolving relationships, dealing with feelings of guilt or loss, a sense of unfulfilled desires, reconciling spiritual conflicts and achieving a sense of having put one's affairs in order , are common challenges for patient, family and palliative care team [32].
Such issues obviously depend upon the developmental stage of the child [35]. Very young children depend upon the comforting touch of familiar individuals, to feel safe and peaceful, with the same holding true for many older patients as well. In younger children, pre-verbal children and patients with encephalopathy due to medications or advanced disease, it is much more difficult to determine the existential needs. Yet, if we accept that conscious individuals suffer from unfinished
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business at the end of life, we must consider that patients with altered consciousness may also have unfinished life tasks, even if they cannot manifest the suffering, or do not seem aware of it. It is in addressing the difficult-to-determine inner needs of such patients that complementary techniques may provide significant comfort.
Case
Relief of general suffering. SA, a 10-year-old girl with meningomyelocele, ventriculoperitoneal shunt, and paraplegia, developed Acute Respiratory Distress Syndrome, due to RSV pneumonitis. Her recovery was prolonged, and she required tracheostomy and chronic ventilation for respiratory support. This alert, bright child had numerous re-admissions to the paediatric ICU for various medical conditions. As part of her care, a hospital chaplain, who practised Reiki and aromatherapy, visited her and provided these therapies. SA indicated that the treatments made her feel warm and comfortable. Aromatherapy too produced a sensation of warmth through her body, in spite of the fact that she was ventilated via tracheostomy, and had no nasal air flow. She requested visits from the chaplain whenever she was in hospital, and saw her support as an integral part of her experience in the ICU.
Commonly utilized complementary therapies
The US National Institute for Health established the National Center for Complementary and Alternative Medicine (NCCAM), in 1992, to deal with the increasing utilization of complementary therapies in the United States, and to oversee the allocation of national funding resources for high quality research. In an attempt to reduce confusion, and to understand the potential place of various complementary therapies, expert panels established by NCCAM have defined several major categories of complementary therapy (Table 31.2). Given the thousands of non-allopathic healing traditions and techniques that are used throughout the world, it is important, but difficult, to identify unifying principles. For example, conventional surgery, massage therapy and Rolfing have in common a focus on physical manipulation of tissue, while some acupuncture and energy healing techniques strive to re-balance and enhance putative subtle energy derangements, which can lead to psychic or somatic disease.
Further confusion arises in trying to interpret the several mechanisms by which individual complementary techniques may affect patients. For example, aromatherapy may be considered to be a biophysical intervention in the case of pure aromas that work through pure olfactory effects, but as an energy healing modality when flower essences are utilized. In order to perform meaningful research, and to compare the effects of various techniques, it is critical to have a standardized vocabulary and concept of how each technique might facilitate healing. It should be further recognized that general life-style issues, such as diet, exercise, weight management, and time to relax, play a role, not only for patients, but for health care workers themselves Health care system, heal thyself! [23].
Table 31.2 Major branches of complementary therapies NCCAM | ||||||||||||
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Research into the application of complementary approaches for children continues to lag behind that for adults. There are many unmet needs and unanswered questions [36]. The literature on the use of complementary therapies in children with life-limiting conditions is even more limited [37, 38, 39]. The following brief overview will focus on the major modalities utilized with children. It is not meant to be exhaustive, but emphasizes those techniques with demonstrated efficacy, or those in most common use.
Energy based therapies
Acupuncture
Acupuncture is probably the one energy-based therapy that is most widely recognized by most western health care providers. It is a complementary therapy, which has experienced remarkable attention in western medicine over the last several decades, after a history spanning several millennia in the Far East [40, 41, 42]. The term acupuncture represents a family of different approaches, which stimulate specific areas of the skin, either through piercing with needles, or by applying pressure, heat, etc. Traditional explanations for its efficacy refer to the balancing of subtle energy (Qi or Chi) in the body, which is not easily measurable by western techniques. Scientific investigations suggest that the acupuncture points correspond to areas of the skin with low electrical resistance, and proximity to nerve endings. It is speculated that the release of various neurotransmitters may produce the beneficial effects reported. Recent basic research has demonstrated an
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increase in nitric oxide generation in areas of the skin over the acupuncture meridians [43].
A growing number of acupuncture practitioners are specifically trained to treat children [44]. It is now provided as a treatment option in approximately one-third of paediatric pain treatment programs at academic medical centres in North America. Parents and children tend to find the procedure acceptable, and not overly threatening [45]. In a retrospective analysis of 50 eligible patients treated with acupuncture for chronic pain, acupuncture therapies included needle insertion (98%), heat or moxabustion (85%), magnets (26%), and cupping (26%). Most patients and parents rated the therapy as pleasant (67% children/60% parents), and most (70% children/59% parents) reported improvement in pain, with few adverse outcomes. Some children with chronic, severe pain found acupuncture treatment to be pleasant and helpful. Additional, prospective studies with appropriate controls are needed, to quantify the costs and effectiveness of acupuncture treatment for paediatric pain. To this end, criteria have been established to evaluate the outcomes of acupuncture trials, and to increase the scientific validity of future studies [46]. In addition to an attempt to increase the rigor of clinical trials, basic research has begun to demonstrate a cellular basis to the effects of acupuncture mediated through postulated mechanisms, e.g. nitric oxide, which are receiving much attention in other clinical settings [43].
Perhaps the best documented evidence for acupuncture has been shown for the treatment of chronic pain and nausea [45, 47, 48, 49]. Considerable discussion continues to be held, on whether predetermined regimens of needle placement are as effective as the more traditional eastern approach of selecting points based upon the unique needs and nature of the individual patient. Because the field known as Traditional Chinese Medicine is both complex, and utilizes different criteria for physical examination and diagnosis than western medicine, it is difficult for western trained practitioners to fully understand and embrace those concepts, without significant additional education and experience [50]. In many industrialized countries, there are schools of Traditional Chinese Medicine and acupuncture, that can serve as resources for physicians. The certification of competency for acupuncturists is generally based upon successful completion of a standardized curriculum, completion of numerous hours of supervised treatment and, where available, licensing by local professional boards.
The use of acupuncture [27]as an adjunct in pain control [51] [45, 47] and nausea and vomiting [49, 52] demonstrates benefits in children. When successful as an adjunct, acupuncture has permitted the use of lower doses of sedating analgesic agents, thus permitting greater alertness in patients. Additional uses have been directed at emotional and spiritual interventions in adults [53], however, reliable evidence in children is lacking at present.
Energy via touch
Further modalities which rely upon manipulation of a putative subtle energy, Qi, in the body, include the western technique of Therapeutic Touch, introduced several decades ago into the nursing curriculum, as well as a wide range of other techniques which aim to balance the Qi. While Therapeutic Touch has been widely accepted in traditional, institution-based western medicine, the other techniques have found more acceptance in the outpatient setting. In contrast to acupuncture, for which licensing standards exist in many regions, the other forms of energy techniques are much less standardized, in terms of training without a formal credentialing process. A number of reputable schools exist in every community which teach such techniques. Rigorous controlled studies of energy healing techniques are limited, however, it is clear that many patients derive a general, often profound, sense of well-being from such treatments. A typical session may last for 30 60 min, during which the practitioner will move his or her hands in a gentle motion around the body. Light touch may also be used. Many practitioners focus on the intention for the energy to be used for the highest good of the patient. The highest good of the patient may include both spiritual enlightenment, as well as healing of somatic or psychological disease. Healing touch is believed to work with the energy of the body, to induce deep relaxation and promote self-healing. Patients report that it can help in reducing pain, promoting relaxation, managing stress, acceleration of tissue and bone healing, and strengthening of the immune system; however, conclusive evidence for its efficacy in paediatric conditions is presently anecdotal. By inducing a state of deep relaxation, one might anticipate that so-called relaxation response may be elicited in the patient, even when the patient lacks the ability to participate in creating the state of relaxation [54, 55].
For many practitioners of energy healing techniques, qualifications are less well defined than for acupuncturists. Many have no formal training, having come by their skill through serendipity or personal study. Beyond attendance in a school or training workshops anyone may claim to be so skilled; little proof is required to open a practice. Professional licensing boards do not generally offer credentials; most do not acknowledge this branch of healing. Each physician considering referring patients to such healers must, therefore, develop a network of collaborators.
It is not clear whether skills in energy healing that are utilized for adults and teenagers can be applied to younger children. There has been a dearth of controlled, scientific
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investigation, a lack of standardization of training, and a paucity of information on applicability to children. Nonetheless, many patients and families report dramatic improvement in their sense of wellbeing and inner peace, and a reduction in adverse symptoms, following skilled treatment by adjunctive healers utilizing energy techniques. While it is generally true that those techniques which are minimally invasive tend to have few adverse effects, lack of risk alone should not be taken as an indication for their use. Good care of a child must always be based upon the best possible evidence for benefit, rather than an absence of harm.
Many energy healing techniques include aspects of prayer , a laying on of hands, specific regimented exercises and homeopathy. Some (e.g., Reiki Qi Gong, or homeopathy) can be performed on behalf of a sick child, while others (e.g., Tai Chi) require greater understanding, training, and maturity to be effective. As with allopathic interventions, there is an ethical issue to be considered in the child whose parents request a technique to which the child does not, or cannot, consent. Much of the consideration for which modality to choose depends upon the availability, skill and willingness of local complementary healers to work with the existing health care team.
Case
Energy healing. MS was 17 years old, with neuroblastoma and tumour recurrence following stem cell transplant. He was referred to the Integrative Medicine team for help managing headache, nausea, chronic fatigue, and pain at the site of primary tumor and the radiation site. He received several treatments initially, and reported feeling a tingling sensation in his leg, with a significant reduction in pain and nausea. He requested treatments whenever he was in the hospital, receiving a total of eight treatments over several months. On one occasion, he was having nausea, pain and fever, and the energy healer was asked to visit him. Following the treatment, his headache was gone, his nausea had reduced and the fever had abated, eliminating the need for further pharmacologic intervention. MS attributed this response to the energy healing session.
Energy healing in palliative care
Touch should be encouraged as part of palliative care where it is culturally acceptable,. Energy healing techniques can provide comfort through the presence of another human being, and the communication of that person's good will and caring through touch. The other value of touch derives from the subtle energy which, according to its practitioners, can flow at a level far deeper than that of a patient's normal consciousness. The healer's intention for a peaceful death, and his or her willingness to be present for the patient through that journey can, it is believed, be transmitted without words, through touch. Given the wide acceptance of touch in adult palliative care [50, 56], and the comfort provided to children by parental and adult touch, all care of children with life-limiting conditions should include human contact and touch as central components. In this context, touch may be through traditional massage, therapeutic touch or energy healing techniques [25, 57, 58].
Biologically based therapies
Herbal remedies/dietary supplements
Few well-performed studies, with appropriate controls and blinding, have examined the use of dietary or herbal supplements for the treatment of childhood conditions. In the United States, herbal preparations and most supplements are not subjected to the rigorous process of approval demanded by the Food and Drug Administration. They enter the marketplace without the same quality assurances to which conventional medicines are subjected. Documentation of efficacy, analysis of how much active substance is contained in the preparation, and proof of purity, are commonly absent from such preparations.
Herbal remedies include a staggering range of materials, ranging from simple teas to exotic plant and animal extracts indigenous to isolated areas of the world, which patients find in ethnic health care stores or apothecaries. Perhaps the best documented beneficial effects are seen with the use of probiotics, such as yogurt and lactobacillus, for diarrheal conditions [59, 60, 61]. They may also have utility in children with antibiotic associated diarrheal states, as is frequently experienced by patients with immuno-suppression. For other common therapies, such as Echinacea and St John's wort [62, 63], reliable studies are lacking. Adverse interactions with a wide range of medications have been reported, from immune suppressants prescribed following organ transplantation [64], to antiviral therapies and digoxin. These reports raise serious concerns about uncontrolled use of herbal preparations, without knowledge of possible drug-herb interactions [64, 65, 66]. Symptomatic management in children with terminal illnesses also is lacking in rigorous clinical investigation. Milk thistle (Silybum marianum) has been studied in adults, for the indications of cirrhosis and prostatic cancer. Its use in adults was recently reviewed, but indications in children remain anecdotal at present [67]. Similarly, there is little evidence for many other supplements, such as coenzyme Q10 and pyridoxine, which are often used for degenerative CNS disease, intractable seizures, cardiomyopathy, and other conditions that often respond only poorly to conventional allopathic treatment.
While many such compounds available through community outlets have relatively low toxicity, numerous case reports document the presence of contaminating substances, ranging
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from lead to cyanide [68]. Recent reviews of the subject recommend that parents inform clinicians of the use of herbal supplements, and that they be used with circumspection, given the many unknowns that exist [69, 70]. As with many other popular remedies, the apparent absence of harm alone does not warrant their use. Clinicians should seek out competent local practitioners to serve as resources on such topics. Diplomates of schools of Traditional Chinese Medicine or graduates of recognized programs in Naturopathic Medicine tend to be well-versed in herbal remedies and supplements. Additionally, many good sites exist on the Internet, which provide information on this changing subject for both consumer and health care professionals [71].
Vitamin therapy
Beyond the established, known deficiency states or conditions known to affect vitamin absorption (e.g., short bowel syndrome leading to potential B12 deficiency, and fat malabsorption syndromes), there is little reliable information to support the use of either herbal or nutritional supplementation in chronic and potentially life-threatening conditions of children. Conventional supplements of individual vitamins may be of value in conditions of impaired dietary intake, such as, for example, cancer-induced anorexia, or states of altered taste. The wide availability and relative safety of vitamin supplements has led to an enormous industry, supplying products of uncertain purity and little demonstrated value to often desperate, suffering patients of all ages. Numerous cases of hypervitaminoses have been reported, following the unsupervised use of vitamin preparations, raising concern amongst health care providers in regards to potential harm for users.
Aromatherapy
Aromatherapy can be defined as the utilization of naturally extracted aromatic essences from plants, that seeks to achieve physiologic effects that can calm, balance, and promote the health of body, mind and spirit. It appears to have few potential adverse effects on patients, with the exception of rare cases of mild allergic reactions to some of the components. Proposals for the use of aromatherapy, often as part of therapeutic massage, exist for a wide range of indications; however well designed studies do not exist, with little evidence for determining its efficacy [57, 72, 73, 74]. As with other therapies, there are reports of initially encouraging results, with subsequent failure to sustain a response [75]. Anecdotal reports indicate the use of various aromas by pediatric facilities to assist in the treatment of anxiety, depression, grief, panic attacks, and multiple other psychological diagnoses. The effectiveness of aromatherapy appears to depend partly upon primitive aspects of the limbic system, which respond to conditioning very early in life. A study of pre-term infants responses to phlebotomy in the presence of a familiar odor indicates that even pre-term infants may achieve comfort through the use of suitable aromas [76]. Practitioners of flower essence therapy also believe that these remedies exert their effect through alterations in subtle energy, as discussed above.
Aromatherapy has aided patients with disordered sleep [77], and has alleviated anxiety, when compared with control measures [27, 50, 57, 58, 73] . Reliable studies of aromatherapy in children with life-limiting conditions are not available, but it is worth considering the use of aromatherapy as an adjunctive measure for both calming, and improving sleep in, children in palliative care programs. The selection of aromas is best made in conjunction with a reliable local practitioner, who can also direct families to a reliable source for the herbal materials.
Aromatherapy represents one of the complementary therapies which have such a low risk of toxicity for most patients (except for some patients with pre-existing hypersensitivity to various components of the aromatic mixtures) that it can be legitimately supported by clinicians, when families request it. Support for the family's pursuit of complements to conventional therapy reinforces trust and bond between the health care team and the family, which is essential in facilitating communications as disease progresses.
Homeopathy
Homeopathy, a centuries-old school of diagnostic and therapeutic approach, is in many ways the antithesis of allopathic medicine, in that its basic premise is that healing comes from within the body, rather than from outside it. It holds that people have a vital force which, if disrupted, leads to health problems. Homeopathy aims to stimulate the body's own healing process by the administration of extremely small doses of substances (called remedies ), which produce characteristic symptoms of illness when given in larger doses. Treatments must be tailored to the unique circumstances of each patient, based on symptoms, personality, life-style and other factors. Research findings on the benefits of homeopathy have been contradictory [78, 79]. Where a response has been shown, it is not easily explained by conventional allopathic understanding of disease pathogenesis. It is important for both homeopathic and allopathic physicians to be aware of the various treatments being used by patients, when different approaches are used simultaneously.
Mechanical/manipulative interventions
Conventional surgery
Contemporary practitioners of integrative medicine view surgery as one of several tools available to treat disease.
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For example, complementary techniques may hasten callus formation in bone fractures in some individuals, but the application of contemporary orthopaedic technique may provide additional improvement to functional recovery. Various congenital malformations mandate surgery as a life-saving measure. In patients with cancer, for example, surgery or radiation may provide symptomatic improvement, and should be considered as part of the overall care to improve the quality of life. Complementary means may serve as adjuncts to traditional surgery, by reducing distressing symptoms, or as one way of improving the overall sense of well being.
Osteopathic medicine
Osteopathy in the United States developed in the early nineteenth century, at a time when western medicines were often crude extracts, anaesthesia had not been developed, and surgery was limited in scope. While the origins grew out of primary attention to the musculo-skeletal system, modern osteopathy incorporates many diagnostic and therapeutic tools used by allopathic medicine.
Massage therapy
Massage has been studied in pediatric populations for indications such as low birth weight, pain, asthma, attention deficit hyperactivity disorder, and depression [25, 80, 81]. Massage therapists traditionally undergo established curricula of education, training, and supervised practice. There are licensing boards in many localities, for assuring the successful completion of standard training. Additional training is available for infant massage, and massage in medically fragile children. Massage benefits patients through several different mechanisms, which have been only superficially characterized in the medical literature. The act of physically manipulating tissue may influence circulation and lymphatic flow, and also alter connective and supportive structures. In addition, the human touch, and the proximity of another individual focused directly on the patient, usually confer additional comfort and benefit. Massage has found a place in adult and pediatric palliative care practice [57, 58, 75].
Chiropractic medicine
In the United States, chiropractic medicine is one of the more popular forms of CAM. There are few rigorous studies available to support its routine use in children with life-limiting conditions. Chiropractic medicine represents a different philosophical approach to disease, based on the relationship of the nerve roots emerging from the spinal cord. It may have a greater role in chronic, out-patient care, than in a more acute in-patient setting. One advantage in the United States is that it is one of the CAM's that is usually reimbursed under the health care system [82].
Many allopathic physicians remain wary of chiropractors, but again, many families of children with life-limiting conditions will choose to consult them anyway. As with other forms of manipulation, the chiropractic approach offers an intimate, individual relationship with a caring practitioner, that many patients find comforting. Acknowledging this, and where appropriate, facilitating it can benefit the relationship of allopathic professional with the family.
Mind-body techniques
This category of therapies involves a wide range of activities, which include well known techniques such as relaxation imagery and hypnosis, to music therapy and meditation [55, 83, 84, 85]. The responses they elicit may be equivalent to the state of calm and inner peace popularized in recent times by Benson and others [54, 55, 86]. As one may see with all palliative care techniques, treatment goals depend upon the timing of their introduction in the course of the disease. For example, at some stages, they may provide opportunities for developing insight, becoming aware of deep seated feelings, and becoming more active in the approach to their lives (a difficult task for some patients and families, who can feel victimized by their disease). When applied later in the disease, the intended effect may be comfort and palliation of symptoms.
Mind-body techniques require varying degrees of cognitive capacity, maturity, and understanding in the patient, as well as expertise on the part of the therapist, teacher or guide to be effective. Meditation and relaxation imagery, in particular, require the active engagement of the patient, and an ability to focus the attention a task which may be difficult for children in significant discomfort, or impossible for children with encephalopathy and delirium. Meditation in adults is reported to be effective in inducing a greater sense of calm [87]. This state can be produced by a wide range of techniques, such as traditional eastern forms of meditation, states of deep prayer, breath awareness, and the recently popularized relaxation response of Benson and others [54, 86]. Young children can often be guided directly to awareness of bodily sensations, or of breathing ( following it in and out through the nose , for example), which can help them to relax or fall asleep. For young children, guided imagery, or developmentally appropriate hypnosis techniques, are usually more suitable than traditional meditation. The active imagination of young children makes them ideal candidates for guided imagery. Success depends largely upon the skill of the therapist.
These approaches to self-calming can often be effectively taught to older children and their parents, and provide additional tools for management of some symptoms, for example, acute dysnpnea, when medical attention is not immediately
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available. For many patients, such techniques provide a reduction in pain perception and anxiety in many distressing conditions, including invasive medical procedures, during the perioperative period, as well as during moments of fear and anxiety [83]. Although recorded tapes for both meditation and guided imagery can be of benefit, a human therapist is preferable. Hypnosis has also been proposed for adults as a method for working through developmental tasks at the end of life [88]. Its primary use in children has been as an adjunct in symptom control [89, 90].
Music therapy
Music therapy is a time-honoured approach, with a history reaching back to ancient eras. Music is used both as a technique for esoteric teaching, and for its profound effect on the inner state, and is almost universally recognized as a method for affecting a person in a non-verbal fashion, on an emotional and/or spiritual level.
The application of music in the medical setting has received increasing attention over the last several decades, with formal training programs established in many universities, often under the aegis of departments of social service or counselling. Its use as an adjunctive therapy for patients with life-limiting conditions is well established in adult palliative care to improve quality of life [91], it has also been reviewed in paediatrics [92]. An intriguing recent report regarding the potential power of music, indicates earlier time to engraftment of bone marrow transplantation in patients receiving music therapy [93]. Early in the course of the disease, the music therapist can become an ally to the patient and family, a friendly face in what can seem to families to be the foreign environment of a medical institution. Support, encouragement, and validation of self may be achieved through the patient's choice of music, and the composing of lyrics to existing melodies. During times of acute distress, music can provide solace, and allow a patient to move inwardly to a place of greater peace and familiarity, without significant volitional involvement. In more terminal phases, music may touch the patient's inner psyche, allowing some contact even with non- or pre-verbal children, and can provide support to parents and siblings, as well as patients themselves. The use of chanting, rhythm and prayer, in conjunction with melody, is essential in many cultures for the orderly departure of the soul from the body.
Play therapy
Play is a child's natural method of learning, developing, and expressing feelings. Play therapy is based on the premise that children lack the cognitive maturity to process their problems in the same manner adults do. It has a long history in child psychiatry and psycho-analysis. Play therapy can be performed in a directed fashion to model and shape behaviours, or in a non-directive manner, allowing children to create their own rules and design a reality where they are in control. This approach allows for processing frightening feelings, traumas, and other problems or insecurities they may be experiencing [94]. A trained play therapist creates a safe environment for the child to express these troubles, and seeks to understand the metaphorical content of a child's play. Insights gained in this way can aid children in expressing their needs, and discovering solutions.
In recent years, some networks have developed the resources of the Internet to provide peer support, play, and diversionary activities for children hospitalized, or confined at home or in a hospice [95, 96, 97, 98]. There are concerns regarding the potential for loss of confidentiality and abuse of children online, but many services provide close, online adult supervision and controlled, limited access to the network, in an attempt to minimize the risks. These resources can be helpful in reducing a sense of social isolation. They provide validation of self, and the opportunity to express feelings in a psychologically safe environment, and also perhaps, to explore fantasies which they may not have time to realize.
Prayer
A topic which deserves mention in this section is prayer, both by the patient, and on behalf of the patient [99, 100, 101]. Studies in adults suggest that individuals with a personal spiritual practice may live longer [102, 103]. Contemporary medical institutions provide chaplain services offering spiritual support to children and their families [104]. As with many other disciplines, the skills, sensitivity and insights of individual chaplains vary greatly. They depend upon the maturity, experience, and comfort with the needs of dying patients, possessed by the chaplain. A family's personal clergyperson may know the family members best, but may be uncomfortable ministering to a dying child benefiting from the support of the palliative care team.
Buddhist and other religious traditions view preparation for death, and the time surrounding death, as an opportunity to assist the soul in completing its life's work and experiencing a peaceful transition out of the body. The term soul has come to have associations with formalised religion, and some families, or even health care personnel, may be uncomfortable with it; but in its essence, it can simply mean spirit those aspects of a person which are not physical.
Many religious organizations provide support for their members, and hold prayer groups independently of the hospital. Such interventions are referred to as intercessory prayers (prayers on behalf of another), and have received recent
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attention in the adult medical literature [105, 106, 107, 108]. While prospective studies in children are insufficient to determine the benefit of prayer, there can be little doubt of its value to families. Prayer is another activity in which the family can participate actively on behalf of the child, helping offset the sense of helplessness they may feel.
Case
B.Z. was a 16-year-old female with an ependymoma who had undergone seven craniotomies over the preceding years, as well as chemotherapy and radiation therapy for tumor recurrence. At the time the Integrative Medicine Service was contacted, she was having persistent, severe, headaches, with poor pharmacologic relief in spite of involvement of the pain service. She had received acupuncture by a pediatric anesthesiologist on the pain service, with little amelioration in her headaches. The family had a very positive attitude about her chances of beating the cancer, and was very optimistic that all would turn out well. She underwent prayer sessions at her synagogue, with her rabbi and mother sitting in front of the ark containing the Torah scrolls (the Bimah). She consistently experienced nearly complete relief of her headaches during these sessions, which persisted for several hours. At the recommendation of the acupuncturist, an energy healer from the Integrative Medicine Initiative was requested to provide healing sessions. Nine sessions were provided over several months, each lasting 20 30 min (Figure 31.1). The intention of the healer was to relieve her physical discomfort, and to create a sense of contentment and calm, rather than to cure the tumor. BZ experienced relief of the headaches during the sessions, and fell asleep. Following the sessions, she related that she could feel energy flowing through her like a tingling feeling.
 |
Fig.31.1 Energy healing session of subject BZ in outpatient clinic setting. Treatment provided for relief of severe headache resulting from recurrent ependymoma. |
Cultural diversity
Because they do not depend on inherent physical biological responses, mind-body interventions are reliant on the cultural and ethnic background of patients and their families, and the context in which they are applied [28, 31, 109, 110, 111, 112]. There may be images, melodies, and linguistic idiosyncrasies of non-dominant cultures that are foreign to many western health care workers. There may be inherent biases and assumptions that are difficult to anticipate without intimate knowledge of cultural norms. The palliative care team is often confronted with important cultural needs, when caring for individuals from unfamiliar religious and cultural traditions. Reliable resources must be identified in each ethnic group one treats, to both avoid unintentional offence and provide optimal care for the life-limited child, in the context of the family and society.
Conclusions
Experience, as well as some research evidence, suggest potential benefits, and occasionally risks, in using complementary therapies in children. It has often been difficult to demonstrate the benefit of complementary therapies using conventional western methods of research. This absence of proof may not represent the absence of efficacy, but rather, imperfect tools of inquiry. For example, outcome measures in scientific medical studies may include tumour size or breathing rate, without evaluating how this affects the individual person, or how it impacts on the quality of his or her life. There are few robust measures of quality of life in children; these are necessary to delineate significant differences which correlate with a better sense of well-being, or with relief from suffering. More powerful tools for evaluating these subjective outcomes should be developed, so that further convincing evidence can be sought regarding the place and timing of complementary interventions in advanced stages of disease.
The families of children who feel they have not been adequately helped by conventional medicine are those most likely to seek out complementary healing modalities, as adjuncts to conventional therapy, or even instead of them. This may include, for example, multiple relapses from cancer, uncorrectable congenital heart disease, and inborn errors of metabolism. Conventional therapies that are oriented towards cure may have little to offer under these circumstances, while some CAM approaches can provide demonstrable improvements in life quality, with little risk of toxicity. Other CAM approaches have very low risks, but data may be too limited to justify unqualified recommendation by allopathic physicians.
Nonetheless, many patients and their families perceive benefit from actively pursuing complementary healing modalities.
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Practitioners of allopathic medicine and their colleagues must accept that many patients will seek complementary techniques. Dismissing, or actively opposing, this search risks jeopardising the partnership between family and caregivers. On the other hand, engaging with it can be beneficial in many ways. One goal of contemporary palliative care is to encourage a sense of autonomy, and create a positive attitude towards life in patients and families. By facilitating their contact with trusted CAM therapists, health care workers can empower patients and their families to assume an active role in their own management, and encourage them to abandon the passive, victim role which many feel as the end of life approaches. In so doing, the palliative care team can accompany the family, and reassure the dying patient that care continues even when a cure is no longer possible.
The case histories in this chapter illustrate that CAM therapy can encourage a sense of wellbeing, a reduction in distressing symptoms, and feelings of being cared for and nurtured, resulting in exactly the improvement in quality of life that is the aim of palliative care. Health care professionals are encouraged to explore the options available in their local communities, and to establish a dialogue with practitioners in various non-allopathic fields, who can serve as resources when families ask for complementary therapies.
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