Appendix - Drug doses

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 4 - Delivery of care > 39 - Education and training

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39

Education and training

Linda Ferguson M

Susan Fowler-Kerry

Richard Hain

Introduction: Educational theories in pediatric palliative care practice

Education alone will not ensure the delivery of comprehensive, compassionate, competent, and consistent care. Undergraduate, graduate, and continuing education for health care professionals is, however, necessary to provide the core foundation of scientific knowledge and ethical, attitudinal, and communication skills. For education to sustain and change practice, there is also a need for changes in professional and organizational infrastructures. Without these, educational reform may become more symbolic than consequential.

Objectives and information that are emphasized in the education of health care professionals are important symbols of what these professions should value. Educational reform should be a key element in a comprehensive strategy for improving pediatric palliative care.

Evidence suggests that while some undergraduate medical and nursing educational programs provide a general overview of palliative care, they often include only a brief review of the pediatric specialty [1]. The fact remains that the majority of the undergraduate educational frameworks do not include formal attention to pediatric palliative care [2, 3, 4].

Educational strategies directed at pediatric palliative care should begin at the early stages of a health professional's education. These strategies should intensify and gain greater focus during more specialized training, and finally, should be reinforced and updated as needed, throughout a health professional's career [4]. At each stage of an educational program, course objectives should direct student learning toward a core foundation of knowledge, skills, and clinical judgement, which provide a basis for practice expertise that meets the diverse needs and challenges presented by patients and families.

Curriculums in the health sciences are dynamic. Competing interests are constantly lobbying for additional time within the current educational frameworks. Some would argue that with more adults dying than children, pediatric palliative care may only be a peripheral issue. Over the past decade, there has been a growing, concerted effort internationally to develop curriculums to prepare health care professionals to work with dying adults [2], but there has been no similar initiative for children [5].

The inclusion of palliative care in current health science curriculums should not be viewed as a competing special interest issue. The principles of holistic patient care, collaboration, and multi disciplinary teamwork provide a useful template for clinical practice in all content areas. Its principles of whole-patient care and teamwork provide a model for many areas. Furthermore, curriculum change need not be just an expensive addition, but can be an enrichment of established educational content and formats. The use of existing program models, and sharing of information, can reduce the curriculum development burden on any single school. Lastly, the need to look beyond the hospital setting for educational opportunities is not unique to end-of-life care, but can be considered as part of a more general effort to develop non-hospital arrangements for improved training in primary, chronic, and out-patient care [1].

Lack of knowledge and awareness of palliative care

Perhaps the single biggest challenge currently in the field of pediatric palliative care is educating palliative care naive health care professionals, to ensure optimal care for children with life-limiting conditions, and their families [3, 6]. Modern medicine has evolved over the decades into a discipline, that often focuses primarily on the investigation, diagnosis, and treatment of diseases. This has led to improved overall survival

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rates. At the same time, however, it has contributed to a gradual and progressive depersonalization of care [7]. With curative-orientated focus, there has been a growing trend to neglect the care of the terminally ill patient as a whole person belonging to a family, and a failure to address the totality of the human experience of suffering that results from a life-limiting illness [8].

This is particularly true in pediatrics, as a result of the dramatic decrease in child death rates in the developed world, many health care professionals have had limited educational theory, and little or no clinical experience, managing the care of the child and family. In addition, for those working in intensive care settings, a focus on palliative care may appear to contradict the culture of high tech [3]. Thus, it is not surprising that the majority of children who die from progressive illness do not receive state-of-the-art end-of-life care [5, 8].

The death of a child has long been acknowledged as one of the greatest tragedies that can befall a family. A loss of a life that has not yet been truly lived, and does not follow the natural order in the life cycle, will have psychosocial effects that can be devastating for the surviving family [9]. The expectation that the physician can cure all is never more intense than when a disease is identified as life-threatening [10].

Education for pediatric palliative care

Teaching palliative care and pediatric palliative care is challenging. Pediatric palliative care practitioners have developed practice knowledge that enriches the care of their young patients and the patients' families. This knowledge has developed through their interactions with a large number of dying children and these children's families, and through their thoughtful reflections on the provision of high quality care. These experts provide consultative support to colleagues who care for dying children, often assisting those colleagues in developing their knowledge and skills in the area. Although this manner of education is very effective on a one-to-one basis, educational programs can more efficiently transfer a large amount of knowledge to practitioners in a timely manner. Providing learning and refresher opportunities to existing practitioners through orientation or continuing educational programs, and ensuring that new practitioners have absorbed the knowledge, attitudes, and skills of pediatric palliative care during their educational programs, will raise the quality of care to dying children and their families.

Preparing new practitioners

Educational curriculums

Curriculums for educational programming provide a clear set of goals and instructional outcomes that facilitate learning as well as teaching, and provide a basis for evaluation of learners at the end of the learning process. Curriculums include the processes whereby learners gain knowledge and understanding of the propositional or theoretical aspects, develop skills, and acquire attitudes, values, and beliefs common in the disciplinary practice [11]. Curricular content consists of expected outcomes presented in a pre-designed fashion, and includes learning experiences that assist learners to meet these goals and outcomes [12, 13].

In many instances, the curriculum of an institution reflects a philosophical belief about how students learn, including the developmental approach of providing learning experiences that build from simple to complex, concrete to abstract, and general to specific. For pediatric palliative care programs, the intention behind programming is the development of competencies and essential qualities that need to be addressed in basic education, continuing education, or orientation programs [12]. Required content includes critical thinking, cultural competence, managed care, political awareness, ethical and legal concerns, effective communication, collaborative learning experiences, negotiation, and community/family aspects [14, 15, 16, 17].

Curriculums for the preparation of health care professionals include formal and informal contents [14, 18, 19]. The benefit of a formalized curriculum is that all learners are provided with similar experiences, which assist them to learn the expected knowledge, skills, and attitudes [12]. Typically, the curriculums to prepare most health care professionals as generalists are fully programmed. Adding more learning opportunities usually involves extended faculty discussions and negotiations to create a reasonable balance between basic sciences, social sciences, disciplinary knowledge, clinical practice, and self-directed learning experiences. Existing courses are planned to address specific course objectives. Adding new objectives to pre-existing courses is difficult, usually resulting in only cursory consideration being given to such new topics. Curricular modification can successfully be accompanied, however, with the commitment of the whole faculty to the inclusion of such objectives [14, 17, 19, 20].

Much of the content needed for effective practice in palliative care is already included in most preparatory programs for doctors and nurses. Critical areas in communication skills, interdisciplinary collaboration, ethics, symptom management, family and community involvement, and holistic care are common elements in most professional medical and nursing education programs. Since most programs in nurse and physician preparation are generalist in nature, palliative care issues with adults are usually addressed, although not always in depth. The sub-specialty of pediatric palliative care requires a greater commitment to curriculum planning, and is often

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dependent on the specific experiences of individual learners. Attention must be paid to the inclusion of essential elements, such as family involvement in care, family autonomy, quality of life for pediatric patients, symptom management in dying children, co-ordination of care, and communication among health care professionals.

Unfortunately, much of the content that relates to the values and culture of palliative care, and specifically to pediatric palliative care, falls into the category of the informal curriculum that is not written or formally acknowledged, but addresses the culture of medicine [19]. Because of the lack of formal curriculums in the area of palliative care, learning is inconsistent at best, and at worst, absent. It is often sporadic, and dependent on the clinical experiences of the learner, or on the interests of the teacher. To ensure that content related to palliative care, and specifically to pediatric palliative care, is provided to all learners in a program, the content and learning experiences must be formalized as specific instructional goals and outcomes in the curriculum [17, 19].

Cognitive knowledge and psychomotor skills

Curriculums should include cognitive, affective, and psycho-motor skills contents that prepare practitioners for practice [12, 17]. This content should be stated in terms of expected outcomes of planned learning experiences [21], or of ends-in-view [22]. These educational objectives form the basis for selection of appropriate learning experiences and evaluation of outcomes. Cognitive content relates to knowledge, often explicated through research, which forms the basis for practice. Evidence-based practice adds to the practitioner's cognitive knowledge of the discipline, and provides evidential support for practice decisions. Such knowledge is frequently available in textbooks or journal articles, is easily taught in conventional formats, such as lectures or readings, and is the core of knowledge taught in medical and nursing programs [23]. Facts provide learners with information on which to base practice, and create a non-threatening learning environment within which one can effectively address values in practice [16]. Propositional or theoretical knowledge is essential for safe practice of the discipline; practice or tacit knowledge of the clinician applies it to the individual patient [23, 24, 25].

Cognitive knowledge in the areas of symptom management and pain control is the most frequently presented aspect of palliative care [2, 8, 16, 19, 26] . This is relatively easily taught; there is a body of knowledge that is research-based, and is available in the scholarly literature [27]. Less easily taught are the values and beliefs that accompany many procedural, assessment, and care management skills. For example, although effective pain control strategies have been demonstrated in practice and reported, nurses and physicians continue to provide analgesia and other pain control measures at less than effective levels [28, 29, 30]. This observation is particularly true in general nursing units, where the emphasis is on cure, rather than care, of the dying patient. It is even more apparent in the care of children [23, 31]. The same is true for some psycho-motor skills that essentially mirror those on general units, but may not be carried out in practice with the necessary degree of commitment to patient autonomy and family preferences, or to compassion [23].

Bloom's taxonomy of objectives in the cognitive domain [32] reflects a belief that knowledge is structured in a hierarchy. Learning progresses through predictable stages, from knowledge of facts and comprehension of information to the application of that knowledge and comprehension in a particular situation. With well-designed learning experiences and sufficient experiential learning, students develop cognitive skills that reflect higher-level thought about a topic, including analysis of factors in a particular situation, synthesis of new ways of approaching dying children and their families, and evaluation of approaches based on particular standards of practice.

Harrow [33] identified a similar progression in the development of psychomotor skills. This progression is generally not affected by the setting of practice. The most important consideration in this setting of pediatric palliative care is the incorporation of family values, preferences, and practices in the performance of skills [34, 35, 36]. An example is family control over the provision of care. Good communication among caregivers, and a commitment to quality of care that reflects family preferences, are the most important considerations [23, 37]. Family members are frequently primary care-givers, especially in the home, and expect to be part of the team providing care in hospital or hospice [38]. New practitioners in palliative care and pediatric palliative care need good role modeling, to demonstrate how families can be involved in care to the extent that they wish. New learners in the area often need help to create this effective partnership. Rather than a focus on how to learn psychomotor skills for palliative care, new learners need to learn how to modify psycho-motor skills to better meet the needs of the patient. This needs to be combined with the values, attitudes, and commitment to do so.

Curriculums are designed to emphasize those aspects of professional practice that the faculty considers essential for all practitioners of that discipline, and in doing so, present the values of that discipline. As has been observed, some of the necessary content for pediatric palliative care is already included in medical and nursing curriculums. However, the values of the sub-specialty need to be emphasized by the inclusion of objectives and outcomes that emphasize the

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consciousness of palliation in the care of dying children and their families. Without the emphasis of these values, the knowledge of content (such as communication skills, growth and development, interdisciplinary team functioning, family dynamics, and community resources) will not be well applied in palliative situations, either in specialist units or at other locations, while caring for dying children. A consciousness of palliation is a predisposition and a commitment to include palliative care concepts in the care of all patients, as may be appropriate.

Teaching the values and beliefs of palliative care

A more challenging aspect of most curriculums is teaching in the affective domain; the values, beliefs, attitudes, and ethics of palliation. This difficulty is reflected in both the challenge of stating expected outcomes, and in the evaluation of the achievement of such objectives. Krathwohl, Bloom, and Maisa [39] formalized the structure of learning in the affective domain, acknowledging the normal progression in learning values. In learning new values, individuals generally progress from the state of being willing to receive the information, to responding with behaviors that are congruent with the desired values, and ultimately, to holding the values and acting in congruence with them. While students are at the stage, of receiving information, or responding in congruence with the stated values, they do not necessarily exhibit commitment to them. Generally, learners need more time in learning interactions, to achieve such a professional commitment.

In palliative care, the values of patient/family autonomy, quality of life, and compassionate care may sometimes be in conflict with those more aligned with curative approaches [23]. Students attain the level of organization when they accept the values of palliation, and create for themselves a meaningful relationship between curative and palliative care. The highest level of the affective domain relates to characterization, wherein the individual practitioner's behavior is consistently characterized by commitment to palliation in care. It may be that faculty members who teach palliative care, or practitioners who advocate for palliation in all relevant aspects of patient care, have attained this level.

The affective aspect of programming often falls into the informal component of curriculums, as educators experience difficulties in defining expected outcomes and determining appropriate ways of teaching and evaluating values, attitudes, and beliefs. A classic example is the focus on compassionate care in palliative care. Although the term is frequently used, educators have difficulty teaching genuine caring , and even more difficulty evaluating the level of acceptable caring or compassionate caring . Frequently, educators cannot clearly describe the expected attitudes or values in practice, or the behaviors that learners will demonstrate as evidence of achievement of those values and beliefs. Tacit understanding of how to apply knowledge, or perform technical skills in individual patient situations, develops over time [40]. Unfortunately, educators can more easily identify the absence of the expected attitudes or values, than their presence.

Choosing learning experiences to assist learners to gain the desired values and beliefs requires patience, and a willingness to explore learner thoughts about the proposed values. Today's learners rarely accept or incorporate new values into their existing belief systems, without thorough personal reflection and examination. Teaching in the affective domain is time consuming, requiring teaching strategies such as seminars, group discussion, and case studies that focus on exploration of values and beliefs, emotional responses to patient situations, and clarification of values evident in effective and compassionate patient care. Ethical issues frequently arise for students, as they are socialized into the values of the discipline, and confront their own attitudes about palliative care.

As students enter medical or nursing programs, they generally reflect the values and beliefs of their own societies. This includes beliefs about death and dying. For some learners, the idea of death is a new un-experienced phenomenon that is frightening and unexpected, reflecting the values of a death denying society [41]. Billings and Block [14], however, reported that many students in medical education have had significant experiences with those who are dying, among their own families or friends. Entering nursing and medical programs places these learners in situations where they must confront their own beliefs about death and dying, and the cures, or lack thereof, of modern medicine. This process takes time, but can be distributed throughout the curriculum of the professional program.

Unfortunately, the available evidence suggests that very few programs incorporate the necessary time in teaching concepts of palliation. In Britain, by self-report, instruction in palliative care concepts averaged 7.8 h for diploma nursing students, 12.2 h for degree nursing students, and 20 h for medical students [42]. In Canada, Sellick et al. [43] reported that an average of 4.39 h was devoted to education on death in nursing programs, and in Australia, the nursing faculty included an average of 19.25 h on death in its curriculums [44]. In Spain, Zabalegui [45] indicated that formal instruction in end-of-life care is included in most degree programs in nursing, but is inadequate in most diploma programs. In nursing programs, teaching was mainly theoretical, using didactic approaches and small group tutorials. The content was often offered as elective courses or optional clinical modules.

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Content on palliation competes with the demands of content in other aspects of nursing or medicine, and often suffers from a lack of advocates for palliative care, especially among faculty or clinicians. It seems the pediatric sub-specialty suffers even more from lack of attention in current nursing and medical curriculums [6].

The process of clarifying values is a challenging one, that is fraught with emotional work by learners, and by perseverance and commitment by educators. Although new learners embrace the concepts of palliative care, they are often challenged to address their own beliefs and issues, while assisting patients and families to address death and dying as realities. Because of these conflicts in values, new learners in nursing and medicine may intellectually embrace the concepts as part of holistic nursing or medical care, but find that because of their own emotional responses, they avoid engagement with patients who are dying.

Attitudes toward death and dying are complex, based on cultural, societal, philosophical, legal, spiritual, and religious belief systems. They develop over the lifetime of the individual, influencing the meaning that individuals ascribe to the process of dying, and to their role in caring for dying patients and their families. New students may have difficulties articulating their own beliefs, and face even more challenges in accepting a professional role in the care of those who are dying. Anxiety around the concept of death is common for students in the health professions. Helping new health professionals, especially younger learners, to explore and clarify their own attitudes and beliefs, may be the single most important aspect determining their commitment to palliation in their later practice [46].

The provision of learning opportunities that allow for the exploration of current beliefs, and the implications of incorporating new beliefs and values, is critical to preparing students for palliative care experiences with patients and their families [4]. While some programs do acknowledge this need, the most frequently used teaching strategy to address palliative care issues is the traditional lecture method, which is probably the least effective way of addressing values clarification [14, 47]. More effective strategies include case studies, group discussions, simulations, role-playing, role modeling, questioning, and reflective techniques, such as writing and maintaining a journal.

Souter [48] described a model for structured reflection on palliative care nursing, focused on exploration of the challenges of palliative care nursing. The model was based on 6 types of knowledge or ways of knowing [49]: scientific, personal, socio-political, spiritual, ethical, and aesthetic. The model required nurses to reflect on the aims of the professional interactions, and the sources of the knowledge used for specific types of practice in palliation. It also included questions focused on whether actions were consistent with beliefs of patient autonomy, promotion of quality of life, compassionate care, family involvement, and symptom control. The aim of the process is to assist nurses to critically analyze their own assumptions, values, and beliefs that will influence their actions in practice.

Mazuryk, Daeninck, Neumann, and Bruera [50] described a journal club for family medicine and palliative care residents that met on a regular basis, to discuss critically the clinical application of palliative care articles in current medical literature. Over the course of one year, 252 articles were reviewed and subjected to critique. This strategy had the benefit of reinforcing evidence-based practice in palliative care, and at the same time, raising more diverse topics, such as psychosocial issues.

The aim of these strategies is to assist learners to explore values, interests, attitudes, and beliefs that are foundational to affective behaviors. In palliative care, such strategies help learners to gain a positive attitude toward the care of dying persons and their families, and to learn values that support the incorporation of compassionate holistic care and symptom management in the care of dying persons and their families.

MacDonald [51] described the challenges of unlearning previous beliefs and attitudes before one is able to learn new ways of thinking; she described this process as transformative learning, and emphasized the challenges of the emotional work of unlearning. Many health care professionals have learned particular ways of caring for patients, often with a focus on a curative philosophy. Reconciling a focus on palliation with a curative approach is a challenge for health care professionals, and is often reflected in their care of patients, especially in critical care units [15] and general care units. A safe environment for learning is essential for supporting this transformation. Assessment of death attitudes and beliefs about caring for the terminally ill provide students and educators with a baseline for discussion, and an opportunity to grow both personally and professionally [46]. Case studies and seminars may be useful strategies to raise student awareness of the need for compassionate holistic care of those who are dying. Learning experiences should encourage students to confront their own beliefs and values, and to explore other ways of thinking about palliation.

A strong focus on palliative care in children in the education of health professionals requires faculty who are committed to its values. Sherman, Matzo, Panke, Grant, and Rhome [52] described an approach to strengthening the focus on endoflife care in educational programs for health professionals. This program, sponsored by the American Association of College of Nursing (AACN), and the End-of-Life Nursing

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Education Consortium (ELNEC), focused on educating the educators, based on the premise that nurse educators who are appropriately educated in principles of palliative care will be more likely to incorporate this content into their educational programs. By May 2002, over 900 nursing and continuing education faculty had taken the 3-day training course on didactic and experiential learning experiences. This course consisted of nine modules, addressing topics such as philosophy of palliative care, pain management, symptom management, ethical/legal issues, cultural considerations, communication, grief, loss and bereavement, quality of life, and preparation for death. Strategies such as this one may be required to raise faculty awareness of the importance of palliative care in the education of health care professionals.

Ethical issues

Ethical issues are a daily reality in pediatric palliative care practice. The needs of health care professionals add complexity to the issues of ethics in pediatric palliative care. The aim is to enable dying patients to live, until they die, at their own maximum potential, performing to the limits of their physical activity and mental capacity, with control and independence, whenever possible [3]. ' This imposes specific ethical requirements on palliative care professionals [23].

Health care providers are guided by medical ethical principles, such as justice, beneficence, autonomy and nonmalevolence. These ethical principles are frequently challenged by clinical situations, such that health care professionals experience dilemmas in their provision of care. Students in palliative care need opportunities to work through these dilemmas, often through discussion with other health care providers, patients and their families, and their educators. Although, of course, the answers depend on the individual situation, individuals can effectively analyze their own actions and feelings, often in discussion with others who are experiencing similar situations. Many medical and nursing curriculums provide opportunities for students to discuss hypothetical situations that address ethical issues.

Discussions with faculty and other health care professionals may help students understand the complexity of patient and family decision-making. Students need to accept and acknowledge the role of health care professionals [53] in assisting patients or families to understand the information that they have received, and to work through the difficult decisions that they are encountering. Bergum [54] and MacDonald [51] indicate that students must come to a recognition that knowledge needed for ethical care must be constructed jointly by the health care professional and the family, and that both health care professionals and patients try to understand the meaning that the illness or impending death has for the individual patient and family [55]. Without the opportunity to explore such meanings with families, students are likely to impose their own interpretation and understanding.

In summary, palliative care is an excellent setting in which to develop other professional competencies with an ethical and moral foundation [23]. Its principles of palliative care compel practitioners to provide holistic and compassionate care based on scientific knowledge, incorporating the art of the profession. In these settings, the four aspects of professional competence; knowledge, technical skills, communication and relationships, and affective and moral attitudes, are necessary to provide patient-centered care. Although students may be challenged to integrate all of these concepts in their practice, successful application of the principles of palliative care form an excellent foundation to the professional practice of both nurses and physicians.

Communication skills

Many health care professionals recognize communication difficulties in palliative care in the areas of honesty with patients and caregivers [56, 57], and in breaking bad news [58, 59, 60]. Research indicates that in reality, communication difficulties are broader than this [15, 29]. They include negotiation skills with patients and carers, information gathering (particularly in terms of patient preferences), relationship building, for example, demonstrating empathy, and naming emotions of both patients and professional colleagues.

Basic communication skills are included in professional education programs, but the demands of palliative care are complex and ongoing [15, 37, 61]. Assuming that students have had opportunities to interact with their patients in therapeutic communication in general patient care, the basic skills should have been mastered by the time students encounter dying patients and their families. Communication skills are a very important element of palliative care, and build on previous learning in a developmental approach. Communication issues that should be addressed in preparation for pediatric palliative care should include breaking bad news, discussion of limits of care or treatment, resolving conflicts among family members, interactions with parents at the child's death, allowing time for questions, exploring options for end-of-life care, pronouncing the death of a child and managing the death certificate, dealing with avoidance of patient and family, exploring patients' cultural practices, and dealing with parents of different ethnic and cultural backgrounds [15]. Students must also learn to deal with their own reactions to the death of a child, and to identify appropriate ways of addressing their own personal issues.

The development of communication skills is based on the theory of effective communication; however, these skills are

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developed most effectively in the clinical context of the individual patient. Role-playing provides students with safe learning opportunities to practice specific skills and to consider their own performances and those of peers, without repercussions for patient care. DeVita et al. [15] describe some scenarios that provide students with opportunities to develop their skills: establishing rapport and wording requests for organ donation, conducting family meetings, and attending to patient emotions. Regardless of the learning opportunities in the classroom, students will still find the actual patient situation challenging and unpredictable, and need the opportunity to debrief and discuss. Particularly challenging are those situations that are anxiety provoking, or that apparently fail to meet patient expectations for empathic and caring interactions. Students also learn a great deal from practitioners who model exemplary communication skills and interactions with dying patients and their families. The opportunity to discuss these interactions simultaneously reinforces the necessity for such skills, and provides the means of improving them.

Symptom management and pain control

Perhaps the least neglected aspects of palliative care involve symptom management and pain control. This content, often presented in a didactic manner, is considered essential content in the preparation of health care professionals. Symptoms that need to be addressed include pain, anxiety, seizures, bowel and bladder problems, and nutrition and fluid management [16]. Research in the area of pain control and other symptom management provides the basis for evidence-based practice. Although this content can be readily addressed in lectures and presentations, health care professionals must have values and beliefs that support use of the knowledge in clinical practice.

Although health care professionals usually acknowledge the importance of this content, it may be difficult to remain up-to-date in this area, as research produces new knowledge [29]. Maintaining current expertise in palliative care is addressed in continuing education programme offerings. Nursing attitudes that demonstrated inappropriate concern for addiction, and lack of knowledge of pain control were influenced by a 40 h continuing education programme [2, 3]. Mandatory updates in pain control for all health care professionals have been recommended [59], both to maintain currency, and to support those attitudes and values that facilitate appropriate patient care.

Individual practice expertise

Practice expertise of individual health care professionals determines the quality of pediatric palliative care. Practice expertise has been described as humane judgement that, with scientific judgement, constitutes the clinical judgement of a practitioner'[25], as expertise and tacit knowledge in medicine [62], and as embodied know-how or the knowledge embedded in practice [24]. Each of these authors is referring to the art of the discipline, the aspect of professional health care that individualizes patient care with decisions that are fluid, anticipatory, contextual, skilful, and patient-centred.

In pediatric palliative care, practitioners with this level of expertise have developed it through experiential learning with a large number of patients and their families [24, 40, 63, 64]. This practice knowledge is difficult to describe, and even more difficult to teach, in conventional didactic formats such as lectures.

The most effective way to facilitate student learning is in direct interaction with patients, under the supervision of such an expert practitioner. Prolonged interaction with the family and child over time is necessary to develop this level of engagement. It is time-consuming, but allows new practitioners to acquire experience while observing experienced practitioners, and discussing aspects of care with them.

Preceptored and mentored learning situations are effective in assisting new learners to understand the complexities of decision-making in pediatric palliative care situations. Novices or advanced beginners' typical responses to patient situations are based on theoretical or propositional knowledge, using rules and guidelines for decision-making and care. Learners will usually have already absorbed a breadth of information during their basic programmes. What they lack is the depth of knowledge in pediatric palliative care itself. In working with expert practitioners in the area, they see the depth of knowledge in practice, recognize the multiple sources of patient data that experts respond to, and gain an appreciation of how to work more effectively [24, 65, 66].

Expert practitioners often have to explain their decision-making, as new learners cannot see the same patient and family cues that experts take into account in their care. Practitioners with experience and expertise often make decisions quickly, using heuristics. Heuristics are rules of thumb, or strategies that simplify decision-making processes. They enable expert practitioners to recognize patterns in patient situations, and respond in predetermined but effective ways [24, 40]. Heuristics are based on experiential knowledge, and are meaningful in the context of an expert's practice, but may be difficult to explain [40]; and may even seem meaningless to novices [64].

Expert practitioners interact with children and their families in an engaged and committed manner, and have complete knowledge of patients'usual responses to illness, stages impression of illness, and patient and family issues in palliation. This knowledge is gained through extensive experience with children and their families, and can be modeled in practice

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and conveyed through stories and narratives of care in past patients. This learning takes time and experience, and are often extracts of emotional toll on learners to one you in the setting [63, 67].

In many professional education programs, students are provided with observational experiences in palliative care, as a means of raising their awareness. This brief exposure may not be enough to assist students to learn how to interact with patients and their families, and may not create a pre-disposition to include palliative care concepts in their interactions with patients. Failure to recognize the emotional commitment to caring in palliative care can result in technically focused, depersonalized care[63]. Such brief exposures to palliative care may result in learners who fail to recognize the depth of knowledge and the commitment required. Faculty in professional programs must make judgement about resources, recognizing that a full learning experience for a few students may result in greater commitment to the principles of palliative care, than a brief and superficial experience for many students.

These experiences must be combined with classroom experiences that provide a basis for palliative care for all patients. Involvement of learners in palliative home care situations is important, but challenging [18]. It is further complicated in children by the need for consistency in the care team. Pediatric residents typically have cared for approximately 35 dying children over the first 2 years of their residency training [16], although very few indicated that they had actually received training in end-of-life care, or felt competent in the care of dying children and their families. Organizing seminars for residents allowed them to explore issues they encountered in these situations with other residents and experts in the field, and facilitated sharing of experiences to broaden the learning horizons of all involved.

Interprofessional or interdisciplinary education

Palliative care requires teamwork among the professionals providing care to the dying child and family [29, 68, 69, 70], and this is acknowledged in educational recommendations in the field [60, 71].

Each team member brings specific skills and competencies [70]. Rather than traditional professional relationships, the focus of teamwork is on patient needs and the needs of the family. Benefits of this focus on patient issues include shared patient focus, improved communication, active involvement with other team members and the patient and family, improved quality of patient care, better understanding of the contributions of other professional groups [72], and a decreased sense of isolation [43].

Team members must perform their specific responsibilities in a timely and responsive manner, and recognize both the autonomy and the interdependence of these members [70]. The roles of various health care professionals are often blurred, as team members focus on meeting the needs of the dying child and his or her family. Family wishes for care, or treatment of complications, must be communicated to other team members, and appropriate referrals made in a timely manner.

Teaching medical and nursing students about interdisciplinary functioning of teams in palliative care and pediatric palliative care requires a commitment to different professions learning together [59, 72]. Interdisciplinary education involves learners from different professions learning with, from, and about each other in an interactive process, that results in mutual respect and understanding of the contributions of others. A multi disciplinary teaching team most effectively reinforces and models the concepts of teamwork that they advocate [15, 20].

The ideal timing of interdisciplinary experiences is unclear. They should probably occur late enough in the program that students are aware of their professional contributions to the team, but early enough that students are open to working with other professional groups, without the negative effect of traditional hierarchical relationships [72].

Students are able to learn the concept of teamwork most effectively in context, and may have experiences in teamwork in other aspects of their education. However, it is important that their experience in pediatric palliative care should illustrate the benefits of teamwork for the patient and family, and reinforce, through professional modeling, the expectations of interprofessional cooperation. A focus on patient and family issues assists learners to seek creative solutions to complex issues, and to make professional referrals as necessary, to ensure that these issues are addressed in an effective and timely manner.

Cultural implications

Supporting families in the care of their children requires knowledge of their cultural practices around the issues of health and illness, but particularly around death and dying [73]. Doctors and nurses who are unaware of these cultural practices may inadvertently provide care that is inadequate, or culturally inappropriate, for the children and their families. Language differences between patients and families and their caregivers can accentuate these issues [74]. The issue of culturally competent care in all aspects of health services is particularly important in palliative care, where alliances between professional caregivers and families are crucial to the delivery of care that is provided [75].

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Medical and nursing students need opportunities to learn about the traditional cultural practices of patients that they will commonly encounter in their practices. Recognizing differences in beliefs and practices, and confronting their own ethnocentrism, are important learning experiences for new practitioners. Providing culturally sensitive palliative care for minority ethnic groups is a challenge [74], particularly in the area of perceptions of illness, care models, traditional practices, and the effects of acculturation. Evidence [76] suggests that culturally sensitive care demands particular attention to six aspects: communication patterns and cues, space needs, social organization of family, implications of time, environmental factors, and biological variations. The ways that individuals express their symptoms and distress, and the ways that doctors and nurses can provide appropriate support, are also important aspects of learning [26]. These factors have implications for how children and families engage in the process of the patients' dying, and how they wish their professional caregivers to be involved.

Educators have the responsibility, and also the opportunity, to assist students to explore the implications of culture on the provision of palliative care. Personal narratives about care, as presentations in formal learning, are often useful in raising awareness of the impact of culturally inappropriate care. Case studies can be helpful, but exposure to the individual cultural practices of patients and their families are most effective. Students need to see practitioners modeling effective means of exploring cultural practices with families, and modifying care to provide it in more appropriate ways.

In summary, the value of culturally sensitive health care needs to be addressed throughout educational programs, and reinforced in practice. Educators can support this learning through appropriate questioning of students, and interactions with patients and families.

Continuing education programming for pediatric palliative care

Health care professionals, in almost every professional pediatric practice, encounter children with needs for palliative care. Although some are referred to palliative care teams or units, many are cared for in a more general clinical environment. While nurses and physicians on general units may not have any specific training in palliative care, their patients nevertheless have needs that require treatment and care based on palliative care principles. Continuing education programs [29, 77], are effective in preparing practitioners for the occasional patients needing palliative care.

One of the challenges of continuing education for practitioners [29] is motivating them to attend educational programs, in light of their busy professional schedules. Educators must raise awareness of the need for specific training in pediatric palliative care, since busy health care professionals may not be aware of changes in practice, or more up-to-date evidence-based practice, and may assume that their own practice is current. Most physicians recognize the need for ongoing training in pain management and symptom control [29, 78], but may not as easily identify other areas that need continuing professional development, such as working effectively in teams, communication, and family. As has been suggested, palliative care education should reflect palliative care itself; it should be multi-professional, tailored to the needs of individuals, and linked to improving the whole process and outcome [59].

Many physicians and nurses indicated difficulties in attending continuing education sessions, despite being interested in improving their skills in palliative care. Formats that use some distance education methods, such as videoconferencing and teleconferencing, may provide a solution [79, 80]. Content in continuing education offerings mirror that offered to nursing and medical students, and to medical residents. Programs that focus on effective communication techniques, involvement of family, team dynamics, and co-ordination of services (rather than symptom control) are very beneficial, but perhaps less well attended. Since many undergraduate programs to date have limited content and experience focused on pediatric palliative care, the ongoing educational needs of practising health professionals are particularly substantial.

Pediatric palliative care program development for nurses

Nursing science is directed toward the development of theories to describe, explain, and understand the nature of the phenomena, and anticipate the occurrence of events and situations related directly or indirectly to nursing care [81]. Nursing knowledge has been described [49] as consisting of four patterns of knowing: ethical knowledge, aesthetics, personal knowledge, and empirical knowledge. The practice in palliative care for nurses generally has focused on understanding and valuing the lived experience of dying as an aesthetic value, as well as advocating for a health care environment that fosters patient and family choice, respects autonomy, and builds from the experience of expert nurses in a wide range of clinical environments [82]. Currently, much of the knowledge about pediatric palliative care is incomplete, or based on best practice, rather than on empirical fact. This reality reflects the fact that palliative care in general, and pediatric palliative care in specific, is a new and emerging specialty.

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While there is a growing body of literature devoted to pediatric palliative care, there are few standardized resources, textbooks, manuals, audiovisual aids or websites available currently for educators to use in planning educational programs. In addition, there are a variety of institutions, private and public, that advertize the availability of seminars or training programs on pediatric palliative care. The majority of these courses focus primarily on the needs of children with cancer, which comprise only a small percentage of children who need palliative care [83].

Health care professionals in the area of pediatric palliative care have clearly identified knowledge deficits in this area [2, 7, 15, 84, 85, 86, 87]. In addition, the needs of learners may differ: undergraduate students have less of an experiential base in nursing and medicine on which to build new learning in pediatric palliative care. Prior to the development of any course, seminar or program, it is imperative to identify the intended audience of the program. Depending on the audience, program content and teaching strategies will change.

Undergraduate programs

The majority of undergraduate students entering into the health science professions are young and enthusiastic men and women, often with limited personal life experiences. They are influenced and affected by a myriad socio-cultural and personal beliefs and values. Most importantly, modern medicine has had an impact on their attitudes toward death and dying [88]. Thus, many have the inherent belief that modern medicine is cure versus comfort-oriented care. To speak of palliative care in the context of children dying is to step into an area of social discomfort, not only for the students but also for many educators.

Palliative care is a multi-dimensional concept that requires the collaboration of interdisciplinary teams. Subsequently, educational programs should practice what they preach, and develop curriculums that reflect the practice that is proposed.

Pediatric palliative care is a nursing sub-specialty of both pediatrics and palliative care. Any programming in this area must build on the principles and concepts of pediatric nursing and palliative care nursing. Because these areas of nursing are seen as requiring practice experience in the field in general, clinical experiences in these fields tends to be provided later in educational programs. However, pediatric palliative care concepts build on general concepts of nursing care, and should be integrated throughout, covering all the years in the nursing curriculum.

This integration of palliative care and pediatric palliative care into nursing curriculums requires faculty commitment to the values and concepts of palliation. Most educators struggle with the challenges of the over-abundance of content required in professional nursing education, and must set priorities on that content. Many faculties are uncomfortable with the inclusion of concepts of palliative care and death and dying, reflecting a focus on curative care, and the larger societal denial of death [8]. The complexity of palliative care is challenging to deal with in undergraduate programs, especially since clinical experiences in these areas are limited. In addition, nurse educators may deem pediatric palliative care as a sub-specialty of pediatrics and thus, an inappropriate level for a basic nursing program.

In contrast, Olthuis and Dekkers [23] consider competent professional care, with a commitment to a core set of values, to be a prerequisite in palliative care. Palliative care practitioners must integrate knowledge, skills, and judgement, with ethical and moral values. They provide holistic, compassionate, and humanistic care, due to the intense nature of interpersonal interactions. Teaching the principles, concepts, and values of palliative care would assist students to develop the art of medicine. The holistic care required of practitioners in palliative care is necessary for professional competence. The same is true for nursing.

Building the concepts of holistic care, family oriented care, patient autonomy, effective communication, and the good death into nursing curriculums, will assist nurses to develop the art of nursing, and illustrate its importance in holistic compassionate care. Many of these concepts can be integrated early in the curriculums, and are the foundations of more demanding concepts of palliative care and pediatric palliative care. This curriculum development is possible and desired, but is dependent on the commitment of nurse educators and practitioners to the inclusion of these concepts. In some instances, the educators must first be educated [52]. Sixteen principles [14] have been proposed to guide curriculum development (Table 39.1). These principles can be applied to the development of nursing curriculums in pediatric palliative care, either by integration into existing programs, or in the development of new curriculums.

This outline of pediatric palliative care content has been organized into three units: first year, middle year(s), and senior year. Much of it is already addressed in most nursing programs. In order to strengthen nurses' knowledge of pediatric palliative care, however, content needs to be explicitly linked to pediatric palliative care.

First year content

Introduction to the concept of palliative care

Educators should introduce the notion that palliative care is a philosophy, that should influence all areas of clinical practice throughout the professional program. This would include

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emphasis on the key concepts of holistic, comprehensive, and compassionate care, that are integral to the delivery of palliative care. This approach would build on the ACT/RCPCH definition of pediatric palliative care [89, 90]:

Table 39.1 Principles for enhancing undergraduate medical education in palliative care

Principles for enhancing undergraduate medical education in palliative care

(Adapted from Billings and Block, 1997)

  1. The care of dying persons and their families is a core professional task of physicians. Medical schools have a responsibility to prepare students to provide skilled, compassionate end-of-life care.
  2. The following key content areas related to end-of-life care must be addressed in undergraduate medical education:
    1. communicating effectively and humanely with the patient and family;
    2. skilfully managing pain and other distressing symptoms commonly occurring in end-stage disease;
    3. providing accessible,comprehensive, high-quality home and hospice care,as well as other alternatives to acute hospital care;
    4. eliciting and implementing patients end-of-life wishes, and appreciating the limitations of treatment in advanced disease;
    5. understanding ethical issues in end-of-life care, and respecting patients personal values; recognizing and responding to cultural, linguistic, and spiritual diversity, and to varied personal styles;
    6. working with an interdisciplinary team to provide comprehensive coordinated care;
    7. acknowledging and responding to the personal stresses of professionals working with dying persons;
    8. developing an awareness of one's own attitudes, feelings, and expectations regarding death and loss.
  3. Medical education should encourage students to develop positive feelings about dying patients and their families, and about the role of the physician in terminal care.
  4. Enhanced teaching about death, dying, and bereavement should occur throughout the span of medical education.
  5. Educational content and process should be tailored to students developmental stage.
  6. The best learning grows out of direct experiences with patients and families,particularly when students have an opportunity to follow patients longitudinally,and develop a sense of intimacy and manageable personal responsibility for suffering persons.
  7. Teaching and learning about death, dying, and bereavement should emphasize humanistic attitudes.
  8. Teaching should stress communication skills.
  9. Students need to see physicians offering excellent medical care to dying people and their families, and find meaning in their work.
  10. Medical education should foster respect for patients personal values, and an appreciation of cultural and spiritual diversity in approaching death and dying.
  11. The teaching process itself should mirror the values to which physicians aspire in working with patients.
  12. A comprehensive integrated understanding of, and approach to, death, dying, and bereavement is enhanced when students are exposed to the perspectives of multiple disciplines working together.
  13. Faculty should be taught how to teach about end-of-life care, including how to be mentors, and to model ideal behaviors and skills.
  14. Student competence in managing proto-typical clinical settings related to death, dying, and bereavement should be evaluated.
  15. Educational programs should be evaluated using state-of-the-art methods.
  16. Additional resources will be required to implement these changes.

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.

This in turn builds on the WHO definition of palliative care [91]:

Palliative care affirms life and regards dying as a normal process, neither hastens nor postpones death, provides relief from pain and other distressing symptoms, integrates the psychological and spiritual aspects of care, offers a support system to help patients live as actively as possible until death, offers a support system to help the family cope during the patient's illness and in their own bereavement.

Communication skills

Faculty should introduce the concept of therapeutic use of self, and focus on communication skills required for holistic patient assessment. Educators will have to identify varying communication skills for patients at different stages across the life span. For example, how would you initiate an interview with a 6-year-old, as compared to an 86-year-old? To make this model relevant, faculty will need to review and reference the developmental stages, particularly for children.

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There must be recognition that communication is more than words, and that tone and quality of voice, eye contact, physical proximity, visual cues, and body language all convey messages. Good communication requires good listening skills. Students should be encouraged to go out to a variety of community agencies, schools, gyms, day care, senior centers to hold dialogue with different groups of people. Such skills are essential to nursing practice. Palliative care is particularly dependent on good communication with patients and their families.

Pain and symptom control

Students need a brief introduction to some of the generic issues regarding symptom control. In practice, symptom control is the area in which the bulk of nurses' time and expertise is spent. It is expected that students will, at this stage of their education, be enrolled in basic anatomy and physiology classes, to provide the foundation to understand the physiological basis of these symptoms and their treatment. Emphasis needs to be placed on the subjective experience of each patient, when he or she is suffering from pain, nausea, dyspnea, sleep deprivation or fatigue, thus recognizing that no two patients will experience any of these symptoms in the same way.

Middle years

Palliative care concepts

Educators need to provide opportunities for more in depth discussions about palliative care and its three main components, namely: supportive, end-of-life care, and bereavement. To do so requires students to explore their own beliefs regarding death and dying. Students should be engaged in dialogue concerning myths and misconceptions surrounding palliative care. Issues addressed should include care versus cure; euthanasia, right to die, living wills, and policies affecting the delivery of palliative care services. Ethical issues and the moral dimensions of palliative care need to be introduced and discussed.

Considering that students will be more comfortable in the health care environment after their first year, students should be encouraged to assess their current clients for palliative care needs. In those situations where dying clients are being cared for in general units, students should be encouraged to provide holistic, compassionate client-centered care, using principles of palliation. Concepts of palliative care should be discussed in all clinical settings, and students should be encouraged to provide palliative care within those settings, where appropriate. Students will need assistance to make referrals to other agencies in collaboration with the patient and family. They should be encouraged to interact with other health care professionals in meeting the care goals of dying patients and their families.

Issues of pain and symptom control

Theory introduced at this time should build on the basic concepts of the structure and function of the human body. Introductory information on pain and symptom control forms the basis for more advanced exploration of these issues. The context for the discussion is rooted in holistic care concepts introduced in the first year. Because pain is the symptom that causes the most controversy, within and among health care professionals, more detailed discussion of theories of pain control, and nurses' responses, needs to be integrated. Students need to be engaged in discussions of the impact of pain and other symptoms on the lives of their patients and families. Within this context, the concepts of pediatric palliative care should be introduced, whether students have had pediatric clinical experiences to date or not. Students need opportunities to discuss the ethical issues, and their personal responses to pain in children.

Discussions of pain should be more detailed, and in depth. Students need to be introduced to the Gate-Control Theory of Pain [92, 93]. Students must become familiar with nociceptive pain pathways, and how pain can be modulated with drugs and non-drug therapies. As has been seen elsewhere in this book (Chapter 8), pain assessment must be presented within the context that pain is a psychological event, making each individual's pain experience unique. A variety of scales can be introduced, including numerical, word anchors, and visual analogue, with an emphasis on developmental issues.

Pain management should emphasize the need for prevention of pain, rather than the crisis management approach. In addition, there need to be dialogue and discussion about the myths and misconceptions of pain management, with special attention to issues specific to the use of narcotics, that is, addiction, tolerance, and dependence. The World Health Organization's [27] 3 Step Ladder Approach to Cancer Pain Management must be introduced; while this approach to pain management is targeted at cancer pain, the theoretical approach inherent in this document is relevant for all patients in pain.

The concept of pain management addressed at this level is relevant to all individuals experiencing pain. The importance of individual assessment of each patient cannot be overstated, as well as the need for evaluation and assessment following each intervention. Students need to be encouraged to develop a professional commitment to the alleviation of pain. The issues of pain in children are particularly difficult for student nurses to manage. To improve this situation, students need to be encouraged to explore their own reactions to caring for

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children in pain. They need opportunities to engage with children and their families in addressing issues of pain, either through clinical experiences or through vicarious experiences, such as, case studies, patient testimonials, or professional rounds. The key is to engender a consciousness of professional responsibility, in addressing issues of symptom and pain management in collaboration with patients and their families.

Other symptoms, including dyspnea, nausea and vomiting, sleep disturbances, and fatigue need to introduced in more detail, with an emphasis now on prevention of symptoms through both drug and non-drug interventions. Students should be encouraged to explore the nature of these symptoms from a subjective experience of the patient. From a theoretical approach, the use of qualitative research to explore these concepts in depth is particularly useful. However, students need to engage with patients, particularly with children and their families, to explore the personal experiences of these symptoms, and their effect on the quality of life. Such a conceptual understanding of the experience of pain and other symptoms provides the foundation for compassionate and holistic palliative care.

Introduction to pediatrics

Pediatric nursing is considered an essential component of any nursing program, in particular, nursing programs with a focus on community health. Although pediatrics is considered a specialty practice with pediatric palliative care as a sub-specialty, the concepts of care of children pervade the practice of nursing. With increasing numbers of children having life-limiting illnesses, and the current commitment to caring for many of these children in the community, many students can anticipate that as graduate registered nurses, they will be pediatric nurses caring for these children as patients in home care or other community agencies. The concepts of health care in children are essential to the concepts of population health and holistic care. Within this concept, the concepts of pediatric palliative care are relevant and essential.

It is essential that students become cognizant of original and landmark documents, such as the United Nations Convention on the Rights of the Child, 1989, asserting healthy child development and the treatment of children as citizens with rights [94], and the ACT Charter (Table 39.2), that forms the philosophical basis for the health care of children. Pediatric nursing concepts are often introduced in the middle years of nursing programs, once students have a foundation in basic nursing care. Certain concepts addressed in pediatric nursing are particularly relevant for pediatric palliative care, including concepts such as family-centered care and Child-Friendly Environment.

Educators need to address communication skills, with special attention to the needs of children and their families. To facilitate holistic care, special attention must be paid to the

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impact of developmental and cultural variables on communication skills and techniques. Students need the opportunity to interact with those children and their families, who are experiencing health challenges. This can be achieved in a variety of settings, such as hospital, community, and home.

Table 39.2 The ACT Charter for children with life-threatening conditions and their families

  1. Every child shall be treated with dignity and respect, and shall be afforded privacy,whatever the child's physical or intellectual ability.
  2. Parents shall be acknowledged as the primary carers, and shall be centrally involved as partners in all care and decisions involving their child.
  3. Every child shall be given the opportunity to participate in decisions affecting his or her care,according to age and understanding.
  4. Every family shall be given the opportunity of a consultation with a pediatric specialist who has particular knowledge of the child's condition.
  5. Information shall be provided for the parents, and for the child and the siblings,according to age and understanding.The needs of other relatives shall also be addressed.
  6. An honest,open approach shall be the basis of all communication, which shall be sensitive, and appropriate to age and understanding.
  7. The family home shall remain the centre of caring whenever possible. All other care shall be provided by pediatric-trained staff in a child-centered environment.
  8. Every child shall have access to education. Efforts shall be made to enable the child to engage in other childhood activities.
  9. Every family shall be entitled to a named key worker, who will enable the family to build up, and maintain, an appropriate support system.
  10. Every family shall have access to flexible respite care in its own home and in a home-away-from-home setting for the whole family,with appropriate pediatric nursing and medical support.
  11. Every family shall have access to pediatric nursing support in the home,when required.
  12. Every family shall have access to expert, sensitive advice in procuring practical aids and financial support.
  13. Every family shall have access to domestic help at times of stress at home.
  14. Bereavement support shall be offered to the whole family, and be available for as long as is required.

Communication skills must also focus on interdisciplinary communication as the basis for teamwork within the pediatric palliative care model. Typically, nursing students at this level will require encouragement and assistance to interact professionally with other health care professionals. Although the opportunities for students in the middle years of their programs to interact with dying children and their families in pediatric palliative care may be limited, they will have opportunities to practise their skills with children and families in pediatric units, and within the community. Emphasis on this aspect of the care of children and their families provides a strong foundation for later practice in palliative care situations.

Educators must support students in the involvement of parents in all aspects of their children's care. Since students are generally uncomfortable in providing nursing care in front of individuals other than the patient, they will need support to enable them to see the family as an essential component of the child's care.

Parental involvement in all aspects of the child's care remains a high priority. The importance of the family in the care and well-being of children was recognized in a World Declaration on the Survival, Protection, and Development of Children at the World Summit for Children [95]

The family has the primary responsibility for the nurturing and protection of children from infancy to adolescence and all institutions of society should respect and support the efforts of parents and other caregivers to ensure and care for children in a family environment.

Senior year

The senior year in most programs is an opportunity to address complex and challenging patient situations in a variety of clinical settings. Students will need faculty support to integrate concepts from other aspects of the nursing program. This integration most appropriately occurs in supervized clinical practice. The concepts of palliation can be applied to most clinical settings, but students need faculty support to identify the opportunities for doing so. For students fortunate enough to be placed in these settings during a senior clinical practicum in pediatrics or pediatric palliative care, opportunities to provide holistic and compassionate care will be abundant. However, such opportunities are limited, and students will be stretched to meet the complex needs of their young patients and families. Partnering these learners with nurses experienced in pediatric palliative care is one strategy for supporting them as they learn to apply the challenging concepts of pediatric palliative care. The faculty should anticipate that students will encounter ethical and moral dilemmas in their care, and will need supported learning environments, in order to address their own personal reactions. Interactions with expert nurses in the area will provide a safe environment for the patients and their families while students are learning. The opportunity to develop professional competence under the mentorship of an experienced palliative care nurse will facilitate holistic and compassionate care, and assist students to develop a consciousness of palliation that can be applied to all their patients in any clinical setting. For those student nurses who are employed in pediatric settings, concepts of pediatric palliative care are core foundations for holistic family-centered care.

Theoretical classes dealing with advanced practice, professional issues, case management, and community-based care should involve issues related to pediatric palliative care. The limited number of clinical placements in pediatric palliative care means that only a few students will experience senior clinical placements in this area. At the same time, for it to be an adequate learning experience, there needs to be prolonged engagement in the care of dying children and their families. Observational experiences alone are not usually adequate to learn the complex practice of pediatric palliative care. Therefore, classroom use of case studies, patient narratives, and practice rounds that address the issues of pediatric palliative care can be used to engage students in the issues that dying children and their families encounter.

Pediatric palliative care training for doctors

One challenge facing those who are seeking to provide pediatric palliative care education is that of teaching a wide range of knowledge and skills to a wide range of professionals. There is not always a good match between traditional perceptions of the professionals who need to learn, and the skills they need to be taught. For example, doctors working in palliative care for children will often need to advocate for patients, as nurses have traditionally done, have communication skills more often found among counselors, and have an understanding of holism often found amongst complementary therapists or chaplains. All this is to be achieved without abandoning their understanding of disease and drug management in children.

It is helpful to consider what should ideally be expected from different groups of physicians, who may be called upon to care for dying children [96].

All physicians may encounter occasional children or adolescents with a life-limiting condition. Pediatricians in

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particular, whether practising in primary care (for example, according to the North American model) or in hospital, will certainly encounter occasional dying children.

Some pediatricians will develop a particular interest in palliative care, but will want to maintain an additional non-palliative practice. In the United Kingdom, this is common in pediatric oncology or neurodisability/ community pediatrics . In many parts of the world, and increasingly in the United Kingdom, pediatricians with an interest provide medical support for children's hospices. Children's hospice doctors from other backgrounds, usually primary care or general practice, are not usually as trained as pediatricians, and their learning needs may be rather different [97]. A background and training in primary care often imparts particular strengths in some important aspects of pediatric palliative care, for example, in holistic and family-centred understanding and communication skills.

The final category is the tertiary specialist pediatrician, practising full time palliative medicine in children.

The educational needs of these groups are distinct from one another, but are clearly related. The knowledge of those specialising in pediatric palliative medicine should ideally encompass all the other groups. Similarly, a pediatrician with a special interest should be able to draw on knowledge that is greater than that of other pediatricians, and of physicians working outside pediatrics.

All doctors. How much should be taught as part of undergraduate medical training? At first sight, it might seem that pediatric palliative care is too abstruse a subject to be taught to medical students, most of whom will rarely go on to a specialty in which they will be called upon to treat dying children. In fact, however, medical school is an opportunity to teach what is common between the practice of palliative medicine in adults and in children indeed, as has been seen, core principles that are common to the practice of palliative medicine and that of good medicine generally.

This would include, for example, an understanding of holism, or a bio-psychosocial model, and the philosophical structure it provides for a rational approach that encompasses both evidence base and empiricism. The importance of balancing burden to the patient with benefit is central to good palliative management of children, but is not restricted to it. On the contrary, it is one of the basic tenets of compassionate and ethical medical treatment of any patient, at any stage of his or her disease.

All doctors should have some practical skill in managing symptoms. The two commonest for most patients are pain, and nausea and vomiting, and it would be reasonable to expect newly qualified doctors to have a good understanding of a basic approach to these two symptoms. They should understand the nature of palliative medicine as a specialty, and the practicality of accessing appropriate specialist skills. This understanding, again, can extend to knowing how to appropriately refer children with symptom control or palliative care needs. This, in turn, means understanding teamwork, the multi disciplinary nature of the specialty, and the value of palliative care skills found outside the medical profession.

A newly qualified doctor, then, should be equipped with an understanding of the rules of palliative medicine in adults or children, and should understand something about basic management of common symptoms and the need for, and availability of, specialist advice in palliative medicine for children as well as adults.

All pediatricians. Although pediatric practice differs in countries across the world, a period of training in medicine among children is mandatory in most countries for those who wish to work full time with children. Most pediatricians will not want to pursue palliative medicine as a special interest. Nevertheless, they are likely to encounter children with life-limiting conditions. Furthermore, even among children whose lifespan is not limited, there will often be the need for palliative care skill. For example, children in a general pediatric ward will often experience pain. What is required at this level is not specialist palliative medicine expertise, but an application of the principle and practice learnt during medical school to the specific case of children.

This would include, for example, developing an understanding of conditions that may limit life in childhood. Many physicians commencing pediatric training will largely see palliative medicine as the management of cancer. It is important that trainee pediatricians should learn the true variety of life-limiting conditions in childhood [83]. They should learn to apply the principle of holism to assessing and understanding the needs of the child and family. There should be an application of fundamental ethical principle to pediatrics. For example, trainee pediatricians should learn about issues of resuscitation, withholding or withdrawing of feeding or life-sustaining treatment, issues of euthanasia, etc. Whilst these are principles of palliative care, they are of relevance to all pediatric practice, and so need to be taught at this level.

Practical palliative care skills that trainee pediatricians need to learn should include basic communication skills, such as active empathic listening, conveying of bad news, and eliciting of fears and beliefs. The trainee pediatrician should be familiar with the basic management of common symptoms, and once again, be aware of the limitation of his or her expertise, and the availability of specialist advice.

Much of the palliative medicine that should be taught to trainee pediatricians will be encountered as part of other training. For example, those who rotate through pediatric

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oncology may learn something about management of nausea and vomiting, or pain. There remains, however, a need for the pediatric palliative medicine team to assess the learning needs of trainees, and to fill in the gaps .

Pediatrician with an interest. Many pediatricians will want to develop an interest in palliative medicine, without abandoning their general or other specialist pediatric case load. These will be physicians who are already well versed, not only in facts about pediatrics, but also in the culture that surrounds the care of children. They will understand, for example, the need to avoid hospital admission where possible, and what means are available to avoid unnecessary interventions. How should they augment the understanding of pediatric palliative care they have developed during pediatric training?

Pediatricians with an interest are likely to deal with enough children with life-limiting conditions, to maintain basic skills in symptom control and communications. They should feel confident in basic management of most symptoms, including relatively unusual ones such as dyspnoea, depression, or pruritus. They should have an understanding of reflective practice, again recognising when and where to go for more expert advice. They should have good basic counseling skills, and some may choose to develop these to a higher level.

Pediatricians with an interest should also be able to recognize and manage some of the more complex symptoms, such as total pain and neuropathic pain. It would be anticipated that pediatricians with an interest would offer advice to children with malignant and non-malignant conditions, and therefore, would need to be familiar with the possible underlying causes for symptoms that could be reversed in a palliative phase. The learning needs will clearly differ, depending on the individual experience of the pediatrician in question.

Tertiary specialists. Relatively few pediatricians are likely to make palliative medicine their main specialty. However small the numbers may be, though, it is important that at least one such specialist should always be available and accessible [89, 90]. According to the adult model, other specialists tend to hand over care of a dying patient to the palliative medicine specialist. In children, this is rarely appropriate. Most children are already well known to their pediatric team, and should not be handed over in the last phase of life. The role of the specialist in pediatric palliative medicine, therefore, is not usually to take over care of the child, but to empower, support and facilitate others in their care. For many families, it may be the oncology outreach and community pediatric nurse who provides most of the hands-on care. This should be made easier by the availability of access to specialist advice.

So what does such a specialist need to know? In a sense, the knowledge base and skill set must always be increasing; one of the roles of any specialist is to keep abreast of new developments. This role will involve considerable familiarity with the adult specialty, in which techniques of good symptom control have been developed. The specialist needs not only to be thoroughly familiar with the principles and practice of symptom control, but also with where to look, if faced with something for the first time.

Good basic communications and counseling skills are mandatory. Many specialists in pediatric palliative medicine have gone on to learn advanced counseling techniques. The ability to distinguish between normal emotional needs of the child and family during the process of losing a child, and the psychopathology that requires advice from others, is an essential skill.

It is imperative that specialists in pediatric palliative medicine have a good understanding of ethical principle, and be well practised in applying it to clinical problems involving children. In addition to understanding of the four basic medical ethical principles, and their scope in application [98], the specialist in pediatric palliative medicine should have a thorough understanding of the principle of double effect [99], and how it relates to appropriate use of interventions in the palliative phase. He or she should be familiar with the issues surrounding, for example, unlicensed medications in children and in palliative medicine [100, 101, 102, 103, 104].

Currently, it is difficult for a pediatrician to obtain this kind of specialist experience, except by studying in the adult specialty. Whilst this has its limitations (in general, the culture of pediatrics is not well understood by those working outside it), this is more than offset by the value of exposure to relatively large numbers of patients, and the opportunity to learn advanced symptom control and communication skills. There remain very few fellowship programs in pediatric palliative medicine.

Evaluating competence

Training methods across the world differ considerably. In most places, a doctor is deemed to be competent in a specialty, either because he or she has spent a certain period of time in a recognized training programme, or because he or she is able to demonstrate competency by means of an exam, or both. Increasingly, medical educationalists are putting the emphasis on assessments based on competencies . These are skills that the doctor can demonstrate that he or she has acquired to the necessary level of expertise.

The system works well for some medical skills. Surgical procedures or radiological interventions, for example, can be

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performed in front of a supervising individual who can then confirm that competence has been achieved. This is much more difficult in pediatric palliative medicine. The nature of the specialty means that the necessary skills do not always lend themselves to this sort of tick box assessment.

Nevertheless, it is important that doctors who wish to train in pediatric palliative medicine are rigorously assessed. In developing a curriculum in pediatric palliative care, the British Society for Paediatric Palliative Medicine drew heavily on the experience of the Paediatric Option of the Diploma in Palliative Medicine, a distance learning qualification based in Cardiff [105]. Here, competencies were assessed using five tools:

  • Log book. Trainees are expected to maintain anonymized records on patients they have dealt with. The cases have to illustrate four specified aspects of palliative care in children, such as pain or difficult communication issues. Each account is expected to include references to relevant literature, an account of what was done well, and what could have been done differently with advantage.

    The point of the case books is partly to ensure that the trainee has had exposure to a sample of common palliative care problems in children. More importantly, it is to instil a habit of reflective practice, in which the trainee recognizes the need both to consult external resources, and to think about it afterwards, in order to learn from the experience.

  • Assignments. There is a series of four assignments on specific topics, deriving from the taught portion of the course. They include, for example, an assignment to produce a talk on complex pain management, or to draft a consent form to non-invasive ventilation for a boy with Duchenne muscular dystrophy. These demonstrate the trainee's ability to set biomedical and ethical principles into the practical context of palliative medicine for children.

  • Communications skills assessment. Good basic communication skills are an essential part of training in pediatric palliative care. Competency assessment is in the form of a semi-structured evaluation of the trainee interacting in a mock patient interview, using a scenario set by the examiners. It can be argued that this is an artificial environment. Communication skills in primary care are taught using video tape recordings of genuine interviews with patients. These are submitted centrally, for semi-structured marking. Perhaps this is an area in which educators in pediatric palliative care can learn from those in primary care, and is something that could be considered in the future.

  • Examination. A written examination, or other form of test, can be of limited value in assessing many of the skills needed for palliative medicine. It may, however, have a place in confirming that the trainee has a good grasp of cognitive knowledge, such as the relevant basic clinical science. For example, extended match questions can test the trainee's understanding of opioid conversions, drug side effects, and interactions. These shorter questions can be combined with long essay type questions, that can help assess the trainee's understanding of wider holistic issues, and there is also scope for short answer questions that can test knowledge on a wide variety of relevant topics.

  • Audit. Although the term audit is largely restricted to the United Kingdom, it embodies an important concept in improving pediatric practice, which is universally applicable. Its purpose is to compare clinical practice with best practice. In essence, the process of audit is in three stages. The first is to identify the best standard of practice. The second is to compare existing practice with the best standard, and the last is to provide feedback to those providing the service, on the results of such comparison. Designing and carrying out an audit is an important learning tool in pediatric palliative medicine, for a number of reasons. It requires the trainee to become familiar with the process of locating or, if necessary, deriving a set of good standards, based on available evidence. It also encourages a cycle of reflective practice, with reference to external evidence. This is of particular importance for trainees who are going to become tertiary specialists. Because there are very few specialists, there is often little opportunity to compare one's practice with those of peers in the same field. The process of audit also establishes the connection between published research base and clinical practice. This is of particular importance in pediatric palliative medicine, where the evidence base is currently very small.

All of these tools for evaluating competence need to be superimposed on local training assessment structures, such as appraisals, annual feedback, interviews, etc.

How do we provide training?

Pediatrics shares with palliative medicine and primary care the traditions of a holistic approach and of multi disciplinary working. Pediatric palliative medicine is able to draw on the published experience of the adult palliative care movement, which began in the 1960s. The evidence basis may be small, compared with some specialties, but there is evidence there, and we are able to use it to learn and to teach.

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Until recently, very few of the text books in pediatric palliative care were of interest or relevance to doctors. This is beginning to change, as chapters on palliative medicine are finding their way into many major pediatric text books, and there even are some text books dedicated to pediatric palliative care [106].

The number of courses and textbooks remains small, however. This is for a variety of reasons. Most of those working with children with life-limiting conditions see a relatively small number in their normal practice. There are few pediatricians doing full time pediatric palliative care, who can accumulate a clinical experience base that allows them to teach trainees confidently. Such specialists as there are, are spread thinly across a large geographical area. In the whole of the United Kingdom, there are only five pediatricians working in full time palliative medicine. Teaching pediatric palliative medicine is likely, therefore, to have low academic priority in any one centre. Interest in teaching and learning pediatric palliative care is often greatest among nurses, so that training programs would need to cross disciplinary and professional boundaries, as well as practical skills.

While none of these difficulties means that training is impossible they do need to be acknowledged and addressed.

The problem of geographical spread can, to some extent, be overcome using distance learning. With the Internet increasingly accessible, some of the basic principles of pediatric palliative medicine can be taught and learnt online. This allows pooling of the expertise of specialists in pediatric palliative medicine from a wide area. As has been explored earlier, this kind of didactic provision of cognitive content is necessary, but by no means sufficient. The Internet may be a less effective tool for more affective content.

A complementary approach is to access the experience of the adult specialist. Roughly seven times as many adults need palliative care as children. It is, therefore, possible to gain a good deal of important experience in some aspects of palliative medicine (particularly aspects of physical symptom control) by working with an adult team. Pediatric programs that allow some time in an adult specialist palliative medicine unit should be encouraged.

Setting up a distance-learning course: The Cardiff experience

The Paediatric Option of the Cardiff Diploma in Palliative Medicine is a distance-learning course for doctors. The Paediatric Option was developed in 2000 [105]. It was based on the existing Adult Diploma in Palliative Medicine, which was well established, having been started in 1988 [107, 108]. The course comprised a series of study packs, some with audio tapes, three residential weekends in Cardiff, and a combination of written assignments and exam.

When considering the Adult Diploma, it became clear that the teaching material within it fell into three categories with respect to their relevance to pediatrics.

Much of the written material for the adult course was equally applicable to the pediatric specialty. This included, for example, much of the science of symptom control, the philosophy of palliative medicine, and basic communication skills. A further section became relevant to pediatric palliative care with some modification, often minor. This included many of the legal and ethical issues which were based on adults, but were worked out differently in pediatric practice.

A further proportion of the adult Diploma material had little or no relevance to the pediatric specialty. This included many of the symptoms related to specific adult cancers, such as breast, prostate or lung, and some of the specific non-malignant conditions, such as motor-neuron disease.

Then there was some material, outside the experience of adult physicians and unique to children, that needed to be included in a pediatric qualification. This included some symptoms, for example, muscle spasm, that have received little attention in the adult literature, developmental and communications issues, and some of the wider psychosocial concerns, particularly those relating to school.

The Pediatric Option of the Diploma in Palliative Medicine therefore comprised material that was:

  • equally applicable to children and adults

  • modified from the adult material to make it relevant to children, and

  • generated de novo because it was unique to the pediatric specialty.

This approach had a number of advantages. It was efficient, since administrative and educational structures were already in place. Perhaps more importantly, the Pediatric Option was built both on the experience of the adult specialty, and on its high educational profile.

There is potentially, however, a serious disadvantage. Whilst much of the science, and even some of the philosophy, of adult palliative medicine can be extrapolated with apparent validity to children, their application to practice needs to be worked out in a culture and a context that are very different from adults. An educational program in pediatric palliative medicine that is developed from an adult one risks missing the point in children, unless it is continually updated on developments in the pediatric world. Having had a common origin, the two courses must be allowed to diverge as necessary, if the pediatric option is to remain relevant to palliative medicine in children.

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Summary

As the important role of doctors in pediatric palliative care is increasingly recognized, so does the need for adequate medical education and training become more apparent. This is complicated by the multi-faceted nature of the specialty itself, and by the geographical and professional diversity of those working with dying children.

Nevertheless, those working with children with life-limiting conditions are linked by a common philosophy, as well as by a number of fundamental scientific and ethical principles that can be taught. Furthermore, technology now means that we can acquire and disseminate such expertise globally. Whilst this can never replace clinical experience, it can provide a valuable complement, and allows pooling of global pediatric palliative medicine knowledge.

Lastly, we have a great deal to learn from what the adult specialty has already achieved. Not only can trainees in the pediatric specialty gain distilled experience by spending time working with adult teams, but as a specialty we need to look to what has been successful, and what has failed, among adult trainees across the decades, and across the world.

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

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