Palliative Care Education: An Overview
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Education has been a core function of all practitioners in palliative care since the birth of the modern hospice movement. Much progress has been made since palliative medicine was first recognized as a discrete medical specialty. In order to understand the complexities of education in this area, this chapter provides a broad overview of issues related to palliative care education from undergraduate students to continuing and postgraduate training and to the needs of family carers and staff who work in residential aged care facilities.
The chapter initially outlines some of the principles of adult education by drawing on the work of several key theorists and then discusses the sociopolitical context of palliative and end-of-life care with due consideration to the changing needs of society. Evidence of progress in undergraduate and continuing education is presented and discussed as well as opportunities for advanced specialty training.
The learning needs of family carers and staff who work in residential aged care facilities are addressed with examples of the types of education and training that is available for these essential providers of palliative care and whose needs are often overlooked in traditional educational settings.
Finally, we provide examples of the many and varied educational methods that are currently in use including simulation, interprofessional education, and learning in the clinical setting.
I never teach my pupils, I only attempt to provide the conditions in which they can learn.
The development of palliative care as a discrete and recognizable medical specialty in the UK in 1987 presented new challenges to educators in the health professions. Until that time, the main focus of health professional education had been on knowledge and skill acquisition that was focused on cure, which was unsurprising given the advances in medical science and technology that occurred in the first half of the twentieth century. However, this single-minded focus on curative treatment denied many people a peaceful and dignified end to their life and replaced it with aggressive and invasive treatments that carried little if any benefit. The modern hospice movement grew out of an awareness that the care of people who were dying fell far short of what many people in modern society deemed acceptable, and as such, a new dimension to the training of healthcare professionals for the future began with the introduction of teaching in palliative care.
Because of the technological advances in medicine toward the end of the twentieth century, medical education in palliative care tended to focus primarily on techniques for the control or management of symptoms, and there was a real fear by some that palliative medicine would merely become synonymous with symptom management. From an educational point of view that has some attractions, it is far easier to gain knowledge of drugs and how to use them than it is to try and understand the lifeworld of someone close to death. However, symptom management is but one important area of palliative care. It is equally important to learn how to be with patients and families who are facing death and how to respond to and relieve suffering in all its guises.
It is impossible to overemphasize the importance of palliative care education, particularly in light of the changing needs of a rapidly aging population with a high prevalence of noncommunicable diseases. In order to be able to provide high-quality care at the end of life and avoid unnecessary suffering, the people who provide that care must be equipped with the necessary knowledge, skills, and experience to be able to do so. Palliative care education must therefore be widely available in the community and accepted as a core component of learning in the health and social care professions. This chapter begins with an overview of relevant adult learning theory before going on to discuss particular issues related to palliative care education and training.
2 Understanding Adult Learning
Once qualified in their chosen speciality, much of health and social care professionals’ learning is self-directed, which requires individuals to be reflective, self-aware, and self-motivated learners and practitioners. All of these skills are essential attributes in the provision of high-quality patient care. Self-directed learning can be described as a process in which individuals take the initiative, with or without the help of others, in diagnosing their learning needs, formulating goals, identifying human and material sources for learning, choosing and implementing appropriate learning strategies, and evaluating learning outcomes.
Self-directed learning takes a variety of forms ranging from informal and unstructured activities to intentional formal educational endeavors based on identified learning needs. Many hospices around the world offer continuing education programs for healthcare professionals with St Christopher’s Hospice in London being an outstanding example as the pioneer of the modern hospice movement (www.stchristophers.org.uk/). Conferences, seminars, and workshops also provide a useful avenue for further learning, keeping up to date with recent research, and networking with colleagues who share similar interests. While many countries have excellent national palliative care meetings, notable international palliative care conferences include the International Congress on Palliative Care, the European Association for Palliative Care Conference, and the Asia Pacific Hospice Conference.
There are various types of self-directed learning, all of which are employed by healthcare and social care professionals at various times depending on their learning needs and professional requirements.
2.1 Informal Self-Directed Learning
This is seen as part of the normal day-to-day activity of professional development. There are no specific objectives, but it is rather an attempt to keep abreast of recent developments. The sort of activities included here are journal reading, ad hoc conversations with colleagues or experts (known as educational influentials – professional peers who are deemed to be experts in their field and therefore influential), attendance at regular continuing education meetings (grand rounds, journal clubs, etc.), preparation for lectures, or writing. Often these activities are not documented and are difficult to quantify, evaluate, and assess.
2.2 Semi-structured Self-Directed Learning
These activities are based around specific clinical problems. The clinicians have specific learning needs and objectives that can be related to current clinical problems. Commonly this sort of activity is in the form of discussions with colleagues (educational influentials), literature searches, medical informatics or reading.
2.3 Formal Self-Directed Learning
These are intentional efforts to learn specific topics, usually through a formal course or program, delivered locally or online by distance education and assessed formally with a qualification awarded on successful completion. Additional methods may include learning contracts, formal traineeships, informal traineeships, educational consultants, or specifically tailored plans. These activities are usually self-assessed. Typically, healthcare professionals draw on differing types of educational activities to meet their needs and draw on multiple resources. It is now commonplace in most parts of the world for these activities to be recognized as an essential part of professional development, and many healthcare professions including medicine and nursing are required to undertake continuing education in order to reaccredit for practice.
2.4 The Role of Reflective Practice in Learning
One of the central tenets of professional development is enhanced performance. Perhaps the most relevant work is that of Donald Schön (1987) who used experience as the critical piece of performance to understand how a professional’s knowledge changes with what he termed “reflective practice.”
Professionals develop a specific knowledge base that informs their work. Experience allows that knowledge base to expand in ways that cannot readily be linked to traditional teaching methods. Reflective practice proposes that problems are often not clearly identified, and it is through a process of critical reflection that problems can be clarified and solutions or new strategies for future action identified.
Formal interdisciplinary team debriefings following a critical incident and mortality and morbidity meetings are good examples of formal reflective processes that enable individuals to gain an understanding of events from others’ perspectives, support one-another, identify issues, and make changes for improved practice.
In Schön’s model, learning is directed by performance-related problems, and teaching is seen as guiding or coaching performance rather than the more traditional telling of facts and theory. Learners work on specific professional problems standing alongside a professional as teacher or mentor in that area. Schön also talks of the “right kind of telling” that takes place when students work closely with their teacher or mentor to learn how to frame the questions and to respond in an appropriate manner. By this he means helping learners to see on their own behalf and in their own way what they most need to see and learn about.
It is essential to recognize that individual reflection in, on, and about professional knowledge and practice can be a powerful way of enhancing our understanding of it. Shared reflection with others who understand and can empathize with our experience and life world is especially valuable. This is why mentors, preceptors, professional supervisors, and critical friends (peer mentors) of all sorts are particularly valuable. When nonjudgmental conversations occur between or among collaborative practitioners where experience is reflected upon, it can be a profound and powerful learning experience for all concerned. Finding ways of encouraging and supporting collaborative, interdisciplinary reflection is an important professional development task.
2.5 Motivation in Adult Learning
The ability to make or set goals characterizes much of adult education, which tends to be driven out of curiosity or related to a specific self-identified learning need, otherwise known as intrinsic motivation. On the other hand, extrinsic motivation is an equally common motivator and is driven by external sources such as professional bodies and work-related requirements. Whatever the source, motivation drives learning, and in a modern society with vast resources of ever-changing knowledge, technology and skills, a common goal for educators is to help students become lifelong, self-directed learners in order to respond effectively to the changing needs of the population.
Important educational theories have contributed to our understanding of adult education. Schön (1983) described professionals’ self-directed learning as an interaction with the environment in a reflective process which he calls “reflection in action.” In this process, the learner becomes aware of a learning need when a “surprise” is encountered (also described as a discrepancy) through a process called “knowing in action.” This is thought to be the embedded knowledge that makes up most of the activities of the clinician. Schön makes the point that it is not possible for a professional to work effectively if they do not have this embedded knowledge. In effect, knowing in action represents those activities that are routine and automatic – so deeply learned that they require little reflection or effort. An example of this is the recognition of a diagnosis of a commonly seen problem. This is the level that practice is based on fact and science. The development of a new problem or a doubtful diagnosis produces “surprises.” When a surprise occurs, the clinician is caused to pause and reflect on what has happened and on previous actions. This process of reflection may lead to the selection of a solution. This process takes place during the patient-clinician interaction. This may then produce a response that may be appropriate during the patient encounter. The next stage of Schön’s model is the “experiment.” These experiments reflect the ability of the clinician to reconstruct the information, knowledge, and skills needed to accommodate what it was that was unusual about that encounter. The outcome of that action may then produce the opportunity for “reflection on action.” This is when the new learning is incorporated into the new body of knowledge and becomes part of the new knowing in action. This then is the closing of a loop that brings learning from previous experiences to bear on general procedures and develops new frames of reference for future problems. It is believed that this is one way in which healthcare professionals navigate through the maze of conflict, difference, and uniqueness that characterizes much of their work.
Performance accomplishments – opportunities to achieve mastery through practice, e.g., simulation activities and successful clinical encounters
Vicarious (observational) experience – opportunities to observe experts in action, e.g., role modeling from senior clinicians and competent peers
Verbal persuasion – feedback and encouragement provided by respected clinicians who are knowledgeable and whose opinion can be trusted
Emotional arousal – physiological and psychological states that can impair or enhance performance, e.g., negative mood or attitude (e.g., fear and anxiety) may impair performance, whereas positive mood/attitude (energized and enthusiastic about the task) tends to enhance performance (Bandura 1977).
Interestingly, Bandura noted a significant difference between having the required knowledge and skills and the ability to use them in stressful situations. He suggests our ability to perform well in a given situation is determined by our self-efficacy or confidence in our ability to undertake a particular task or activity, which is in turn heavily influenced by the learning process. This confidence is independent of our knowledge and skills, which means that people who have achieved the same level of knowledge and skill tend to perform better or worse depending on their self-efficacy (Bandura 1993). Confidence in our ability to perform well in a given situation suggests we have had opportunities to develop the required skills, which demonstrates a higher level of learning than simply having knowledge of it. For example, knowing the theory of CPR does not mean we can apply it in a cardiac arrest unless we have had opportunities to observe and practice this skill and demonstrate competence in a supervised setting. Such examples suggest that in order for individuals to feel confident in their ability to care for people who are dying, they not only need knowledge and skills but opportunities to interact with people and families receiving palliative and end-of-life care and critically reflect upon and receive feedback from experienced clinicians about their performance. It follows that if these experiences are lacking, learners may lack confidence and avoid being involved in caring for people who are dying, i.e., an expression of death anxiety. It is therefore important that educators take these factors into consideration when designing curricula and provide opportunities that build self-efficacy. These theories have important implications for undergraduate teaching in the health professions as well as for continuing professional development activities.
The ability for forethought (to perceive a desired outcome)
The ability to learn from experience (to be reflective practitioners)
The ability to set goals to achieve the desired outcome
A sense of curiosity or a perceived gap or need for learning
A belief in their capability to undertake the required task
The ability to recall previous success in learning
3 Palliative Care: The Sociopolitical Context
Advances in the management of chronic diseases combined with an aging population have led to an increasing prevalence of people with complex life-limiting conditions and an increasing demand for palliative care. Diseases such as ischemic heart disease, stroke, dementia, chronic respiratory disease, cancer, and diabetes are now the leading causes of death in the 60+ age group accounting for a large majority of deaths in the developed world. This is driven largely by the aging population and behavioral risk factors and is forecast to increase substantially (World Health Organisation 2003). Responding to this need is a global health challenge which requires government-led initiatives to support the provision of palliative care and increase workforce capacity across all healthcare settings.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (Sepúlveda et al. 2002, p. 94). This definition has been instrumental in guiding the development of palliative care services around the world with increased public awareness and government-led strategies to improve the availability and quality of palliative care.
The 2015 Quality of Death Index (The Economist Intelligence Unit 2015) rates the provision of palliative care across the world with rankings based on income as a predictor of the availability and quality of services. Countries with higher incomes are more likely to have a national palliative care strategy, higher levels of government funding, and palliative care training resources. The UK currently ranks at the top of the scale due to the extensive integration of palliative care into the National Health Service, a comprehensive national strategy that includes undergraduate healthcare education and a strong well-developed hospice movement. Australia and New Zealand come in second and third places, respectively. Other high-income countries such as Ireland, Belgium, Taiwan, Germany, the Netherlands, USA, and France are also listed in the top 10. However, even the highest ranked countries are not able to cater for the palliative care needs of every individual with geographic isolation, late or lack of referral, or an unwillingness to accept palliative care services indicating there is still much work to be done. Barriers to accessing services also exist within the healthcare community where death is often perceived as medical failure, where curative treatment is prioritized over quality of life, and where palliative care tends to be considered the sole domain of hospices for people with cancer in the last days of life. However, this perception is changing with an increasing recognition that palliative care is relevant in all life-limiting conditions with early integration in the course of illness alongside disease-modifying treatment to improve quality of life. Consequently, palliative care is becoming a more common component of undergraduate education and continuing professional development programs with increasing recognition of the importance of a primary palliative care approach, with support from specialist services for those with complex needs (Gott et al. 2012).
The Quality of Death Index (2015) carries a timely warning that countries without sufficient training resources are likely to face a shortage of specialist staff, while nonspecialists (primary palliative care providers) may lack the skills to provide quality care if adequate educational preparation is not provided.
4 Undergraduate and Continuing Education in Palliative Care
Death and dying is a universal human experience and an inherent part of healthcare. Death occurs in all healthcare settings, and as such, it is difficult for healthcare professionals to avoid. In developed countries where people have access to high-quality healthcare, death is often perceived as an extraordinary event. This is especially true in hospital settings where care is oriented toward providing curative treatment, with palliative care being considered a specialist role. However, caring for people with life-limiting illnesses is part of everyday clinical practice for most health and social care professionals, so it is essential they are well prepared to do so with training beginning in undergraduate programs through into postgraduate and continuing education.
Unfortunately, death and dying have not traditionally been part of undergraduate curricula until relatively recently (Worldwide Palliative Care Alliance 2014; Lloyd-Williams and MacLeod 2004), which reinforces death-denying attitudes. This oversight meant new graduates were left to rely on their colleagues for guidance and support, which was not always readily available and meant that the quality of care depended on graduates’ unguided instincts and their colleagues’ level of experience and attitudes toward caring for people who are dying. Unsurprisingly, both medical and nursing graduates consistently report feeling inadequately prepared to care for people at the end of life, which not only compromises patient care but may also undermine graduates’ self-efficacy at a critical point in their professional development.
A systematic review undertaken by Lloyd-Williams and MacLeod in 2004 reported that despite widespread acknowledgment that learning about palliative care should be included in undergraduate curricula, there was a lack of rigorous research in palliative care education. Teaching had developed in an ad hoc manner, lacked consistency, and coordination and was rarely formally assessed. The authors recommended an integrated approach to teaching palliative care beginning in the preclinical years to reinforce principles and practice across disciplines (Lloyd-Williams and MacLeod 2004). Cultural and institutional factors are common barriers to integrating palliative care into undergraduate education and include issues such as overcrowded curricula, lack of a local champion, and a healthcare system that prioritizes curative treatment over quality of life and the benefits of palliative care (Lloyd-Williams and Field 2002; Ramjan et al. 2010). In recent years, there has been a significant increase in the number of undergraduate programs offering palliative care education, especially in countries where government funding and policy initiatives have been provided to help prepare graduates meet future demand (Brajtman et al. 2007). The UK, Australia, USA, and Germany have seen particularly strong growth in this area, and there is a growing body of research reporting positive results from the evaluation of educational interventions, although there are few that measure the impact on patient care (Walker et al. 2016; Ramjan et al. 2010; Dickinson et al. 2008; Fitzpatrick et al. 2017).
In the UK, USA, Canada, and Germany, palliative care is a required component of undergraduate education, and there has been a recent proliferation of educational initiatives in these countries with legislation being a strong motivator for educational development. However, even in these countries, the provision of palliative care education is variable, although this is more of a concern in countries where there are no competency requirements specifically related to palliative care. These issues are likely to undermine the quality of care and contribute to a shortage of specialist palliative care providers in the future (The Economist Intelligence Unit 2015).
Countries such as Australia and the USA have invested a great deal in developing national programs aimed at preparing the current and future workforce with essential knowledge and skills in the palliative care approach. In Australia, the National Palliative Care program, funded by the Commonwealth Department of Health and Aging, supports a range of national initiatives to improve access to and support the provision of high-quality palliative care. These programs include Palliative Care 4 Undergraduates (PCC4U) (http://www.pcc4u.org) which uses interactive web-based activities with accompanying resources and facilitator guides as well as workshops. In addition to this, the Programme of Experience in the Palliative Approach (PEPA) (https://pepaeducation.com) provides practicing healthcare professionals with opportunities for workplace training and workshops in palliative care. Both programs are widely available throughout Australia and provide a flexible and highly accessible means of delivery tailored to the needs of various disciplines. Other initiatives supported by the Australian government include CareSearch (https://www.caresearch.com.au) which is an online repository of palliative care information for patients, families, and healthcare professionals. CareSearch also offers online learning in the form of “End of Life Essentials,” a series of six palliative care training modules for healthcare professionals working in the acute care setting. Similarly, St Christopher’s Hospice in London, UK, provides a comprehensive suite of education packages, one of which is aimed at practicing healthcare professionals, known as QELCA (Quality End of Life Care for All). This program aims to empower health and social care professionals to provide a palliative care approach in all healthcare settings and includes a Train-the-Trainer program to equip teams who wish to lead the development of palliative care in their workplaces (http://www.stchristophers.org.uk/education/course/quality-end-of-life-care-for-all-qelca-train-the-trainers). Initiatives like this provide valuable resources to support continuing education and the provision of quality care at the end of life.
Care assistants who work in residential aged care facilities (RACF) are also important and often neglected; providers of palliative and end-of-life care given that the vast majority of residents in RACFs die there. Aged care facilities are becoming an increasingly common location for end-of-life care as the world’s population ages and the prevalence of dementia increases. It is therefore essential that palliative care training for staff working in residential aged care facilities is a mandatory requirement for licensure, with special attention paid to addressing the learning needs of care assistants who provide the majority of hands-on care. Strong links must also be established with local hospices for ongoing liaison and support.
A good example of this model can be found in New Zealand where Hospice New Zealand, the peak body for hospices, has established the “Fundamentals of Palliative Care” course for care assistants employed in residential aged care facilities. This course is available nationwide and is provided by local hospices (MacLeod and Schumacher 2015). Research by Latta and Ross (2010) showed this course to be effective in preparing participants to care for residents who were dying and for validating and empowering care assistants in their work. The New Zealand Ministry of Health also provides funding for hospices to create palliative care liaison positions that work with and support staff working in residential aged care facilities to provide palliative care so residents can be cared for in their own environment, without unnecessary hospital admissions at the end of life.
In the USA, the American Association of Colleges of Nursing (AACM) developed the End of Life Nurse Education Consortium (ELNEC), a national initiative that was introduced in 2000 to improve the provision of palliative care throughout the USA. This course was developed with support from the Robert Wood Johnson Foundation and uses a train the trainer approach to equip participants with the knowledge and skills required to teach undergraduate and postgraduate educators about palliative care so they can integrate it into their teaching. The ELNEC curriculum consists of eight learning modules that focus on the core competencies of palliative and end-of-life care which reflects the American Association of Colleges of Nursing’s 2016 Competencies and Recommendations for Educating Undergraduate Nursing Students. This program has been widely disseminated across America (where it has been attended by 19,500 nurses and other healthcare professionals) and the world including 96 other countries where there is little or no provision of palliative care such as India, South America, and Eastern Europe. The ELNEC program has also been translated into several languages including Albanian, Czech, Romanian, Russian, Spanish, Hindi, Japanese, Korean, Chinese, and German and adapted to speciality areas such as geriatrics, pediatrics, and critical care ensuring an even wider reach (http://www.aacnnursing.org/ELNEC/About). While the ELNEC course has been proved to be effective in improving knowledge and skills (Glover et al. 2017), and is slowly being integrated into undergraduate nursing programs, the Institute of Medicine 2014 report: Dying in America: Improving Quality and Honouring Individual Preferences near the End of Life describes current nursing education as lacking adequate emphasis on palliative and end-of-life care.
There is no equivalent of ELNEC for undergraduate medical students in the USA so training varies widely between institutions and is described as being disjointed and sporadic (Horowitz et al. 2014). Palliative care is a required competency for nursing training in the USA, but the same cannot be said for medicine as the Liaison Committee on Medical Education (LCME) does not require medical schools to teach palliative care competencies, and it is not specifically mentioned in its standards. The Association of American Medical Colleges (AAMC) does however include some requirements that are directly related to palliative care, but this has not been translated into medical education in a consistent manner and varies widely between universities from as little as 2 h total teaching through to courses that require weeks of training and clinical experience (Horowitz et al. 2014; DeCoste-Lopez et al. 2015). While a 2014 survey of US medical schools reported 43 out of 51 deans describe palliative care education as being important (Horowitz et al. 2014), there appears to be a mismatch between the perceived importance and the actual delivery of palliative care education in undergraduate medical programs in the USA.
Canada has a longer association with palliative care education and introduced a standardized medical curriculum in 1993. However a 2001 survey by Oneshuk et al. (2004) reported wide variations in time allocated to palliative care, lack of curricula content, and limited availability of teaching staff and associated resources. Similarly, in nursing schools, teaching tends to be threaded throughout the curriculum, but the degree of emphasis is dependent on the level of commitment of teaching staff and the availability of clinical teachers with experience and expertise in this area (Brajtman et al. 2007).
There are many palliative care educational resources available for Canadian physicians such as Learning Essential Approaches to Palliative Care (LEAP) (http://pallium.ca/professional-development/leap-2/) and Ian Anderson Continuing Education Program in End-of-Life Care (https://www.cpd.utoronto.ca/endoflife/default.htm), but these have not necessarily translated into physician training (Downar 2018). Downar suggests that palliative care interventions are undermined by the hidden curriculum and suggests that interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior.
In the UK, the National Institute for Health and Clinical Excellence (NICE) provides national guidance, advice, and standards based on best evidence to assist in the planning and delivery of healthcare services, including issues related to palliative and end-of-life care. These guidelines have been incorporated into healthcare education to ensure the health workforce is adequately prepared to meet the needs of the population, including those suffering from life-limiting conditions. A 2006 national survey of all 66 undergraduate nursing programs in the UK (response rate of 79%) reported that palliative care plays a significant role in undergraduate education with an average of 45 teaching hours devoted to this subject (Dickinson et al. 2008). This is a significant improvement on a 2002 study that reported an average of only 12.2 h of palliative care teaching in undergraduate nursing degree programs (Lloyd-Williams and Field 2002), which illustrates the development that has taken place over a relatively short period of time.
In medicine, these issues are addressed by the General Medical Council in “Tomorrow’s Doctors” which outlines the outcomes and standards for medical education in the UK (General Medical Council 2009). The Association for Palliative Medicine in Great Britain and Ireland (2014) has since developed an undergraduate curriculum that is mapped to these outcomes and as such provides valuable guidance for medical student education. A recent study published in 2016 by Walker et al. (2016) that surveyed course organizers from all 30 medical schools in the UK reported that all courses provide mandatory teaching on “last days of life, death and bereavement” and offer an average of 36 h of palliative care teaching that is integrated into the curriculum with wide assessment. This can be followed up after graduation by participation in the “Quality End of Life Care for All” (QELCA) program at St Christopher’s Hospice, London (Gillet and Bryan 2016). This accommodates practicing physicians experiencing hospice care through a 5-day clinical immersive practice much like the PEPA program in Australia.
In Europe, the European Association for Palliative Care (EAPC) has developed consensus guidelines on the core palliative care competencies for primary palliative care providers of all disciplines (Gamondi et al. 2013). These guidelines provide a useful framework for curriculum development, both in Europe and around the world.
In order to determine the extent of undergraduate palliative care education, an international collaboration of researchers conducted a comprehensive survey of European universities in the World Health Organization European Region with a response rate of 81%. The survey revealed palliative care is being taught in a substantial number of undergraduate medical schools, but there is wide variation between countries. For example, 28 countries (65%) include palliative care in the curriculum of at least one of its universities. In five countries (12%) including Lithuania, Poland, Latvia, Finland, and Spain, palliative care is taught in half of the country’s medical schools, and in ten countries palliative care is taught in less than half of medical schools. In 13 countries (30%), palliative care is taught in all medical schools (UK, Israel, Norway, Belgium, France, Malta, Austria, Germany, Ireland, the Republic of Moldova, Hungary, Switzerland and Slovenia); 6 of these countries (those underlined) include palliative care education as a compulsory component of undergraduate training, while 14 mainly Eastern European countries do not include any palliative care teaching at all (Carrasco et al. 2015). Unsurprisingly, these countries rate in the lower half on the 2015 Quality of Death Index (with some not even featuring), which may be a reflection of a lack of government investment in palliative care policy and resources.
Important advances have taken place in Switzerland and Germany since palliative care education became a mandatory component of undergraduate education in 2013, with increases in palliative care content and academic positions to support development (Eychmuller et al. 2015; Weber et al. 2011). However a recent review of international undergraduate medical education cites Ilse et al. (published in German) describing the implementation of this teaching as being uneven and fragmented (Head et al. 2016) with only minimal requirements for nursing education in the legislation.
In Japan, there is increasing acknowledgment of the role of palliative care in healthcare delivery with a national study by Hirakawa et al. (2005) reporting 45% of medical schools and 68.9% of nursing schools that incorporate end-of-life care in their curricula. There is increased emphasis in palliative care in nursing curricula illustrated by 35.5 mean teaching hours which includes clinical learning opportunities and assessment, compared with 7.6 h in medicine.
There is, therefore, an increasing global recognition of the importance of incorporating palliative care into undergraduate curricula in medicine and nursing to prepare graduates to meet the current and predicted future need. The UK and Australia currently lead the world in terms of palliative care education and service delivery (Economist Intelligence Unit 2015) with a steady increase in the number of countries incorporating palliative care into their teaching to improve the provision of a primary palliative care approach in nonspecialist settings. Much of this work has been prompted by legislative requirements and government policy directives and supported by the work of professional bodies such as the European Association for Palliative Care and governing bodies within each country.
Despite increasing availability, palliative care continues to be underrepresented in many areas throughout the world where it competes for space in overcrowded curriculums and is often seen as a “soft subject” (i.e., nonessential). As a result, there is widespread variability and lack of consistency in content, organization, delivery, and curriculum time. Although evaluation studies report improvements in knowledge, skills, and attitudes, graduates continue to report feeling unprepared to provide end-of-life care with anxiety related to this part of their role being a common theme (Walker et al. 2016; Gillan et al. 2014). It is unclear whether this is due to the emotionally challenging nature of the work or because of deficiencies in their education, but it is likely to be a combination of the two. Either way, there are important implications for graduates’ ability to care for people who are dying, which may compromise the quality of care and undermine graduates’ self-efficacy at a crucial point in their professional development.
Despite the evidence that undergraduate and continuing education in palliative care has increased, the curative model is still predominantly considered the most relevant for medicine. In the jargon of the curative model, patients whose illness cannot be stopped or slowed are termed “untreatable.” From a cure-oriented perspective, the care of such patients is still considered by some to be outside the purview of medicine. Medical students learn humanistic skills in their preclinical learning, but this can often be subtly undermined during their clinical attachments through a process of socialization whereby students become enculturated by the attitudes of their senior colleagues which may not be supportive of a palliative approach to patient care.
With that being said, it is important to acknowledge that undergraduate medical education is changing with an increasing emphasis on the importance of applying biomedical knowledge within a bio-psycho-social-spiritual model of care which is consistent with palliative care philosophy and responds to individual patient and family needs. This represents a significant shift in medical culture which has traditionally operated out of a biomedical approach that rewards technical skills over “softer skills” such as communication, which frequently involve emotionally draining encounters at the bedside, thus placing high value on curative interventions as opposed to palliative, whole-person, and family-centered interventions. These latter interventions often appear to encourage greater intimacy with the patient and family as we share in and support them through what is for many the most significant and challenging period in their lives. However, even in the palliative care literature, there is evidence of the danger of the intimacy that can often occur in these end-of-life situations that is associated with the emotional burden of accumulated grief. While intimacy often takes us by surprise and strengthens the therapeutic connection with patients and families, it is often accompanied by the fear that we may be overwhelmed by another’s agony, suffering, chaos, and disintegration (Barnard 1995). It is essential therefore that interdisciplinary team members are well supported through comprehensive undergraduate and continuing education as well as opportunities for critical reflection and peer support.
5 Advanced Specialty Training in Palliative Medicine
The Joint Committee on Higher Medical Training in the UK first published a palliative medicine curriculum in 1998 that sets out standards for trainees in palliative medicine in all areas including clinical, education, and research (JCHMT 1998).
Express expert knowledge of the pathophysiology, symptom
Explain management, psychosocial, and spiritual issues related to life-limiting illness and imminent death
Understand the experience of disease from the perspective of a patient and the meaning and consequences of illness to a patient and their family
Make appropriate clinical decisions to provide medical care that is structured around the patients’ and families’ needs, their understanding and priorities, with the aim of maximizing QoL, relieving suffering, supporting the family, and normalizing their experiences
Display particular expertise in the management of patients within the home, as well as the hospital and hospice
Describe the natural history and role of disease-specific treatments in the management of advanced cancer and other progressive life-limiting illnesses
Practice culturally responsible medicine with understanding of the personal, historical, contextual, legal, cultural, and social influences on both health workers and patients and families
Provide expert advice as a consultant
Establish therapeutic and supportive relationships with patients and their families based on understanding, trust, empathy, and confidentiality
Confidently discuss end-of-life issues with patients and their families
Sensitively explore patients’ concerns across physical, psychological, social, cultural, and spiritual domains
Communicate effectively with patients, their families, and other health professionals involved in the patients’ care
Manage his/her own time and resources effectively in order to balance patient care, professional development, managerial and administrative duties, learning needs, and personal life
Work effectively and efficiently in a healthcare organization
Manage human resource, financial, quality assurance, data management, and administrative aspects of his/her own practice or palliative care service
Allocate finite healthcare and health education resources effectively (https://www.racp.edu.au/docs/default-source/default-document-library/download-the-advanced-training-in-palliative-medicine-curriculum-(1mb).pdf?sfvrsn=2)
Trainees need to undertake a learning needs analysis, partake in case-based discussions, write up case studies, and are advised to undergo communication skills training, brief clinical examinations, reflection, and research.
In the USA, requirements for aspects of palliative medicine training were first outlined in the mid-1990s, but by 2001 there were still relatively few residency or fellowship requirements to provide any palliative medicine training outside internal medicine, geriatrics, and neurology (Case et al. 2013). Hospital palliative medicine consult teams have increased in number over the last years, and this has encouraged the development of more palliative medicine education. Hospital palliative medicine is now recognized as a specialty, but there are still not enough palliative medicine specialists to meet the wide-ranging needs of the population.
Downar (2018) has provided a helpful overview of the resources for education, training, and mentoring for all physicians providing palliative care which he suggests can serve as a framework to improve palliative care as a whole in Canada.
6 Addressing the Learning Needs of Family Carers
Family carers have significant learning needs if they are to be able to care for their loved one at home. Without the considerable support, sacrifice, and willingness of families to provide care, many patients who would prefer to be at home might otherwise have to be cared for in hospital or a residential care facility. Such caring requires dedication, skill, and a certain amount of knowledge. However, the presence of effective education programs to provide relevant knowledge is fairly limited. One early example was undertaken with the support of the Project Death in America. Patients with advanced cancer and their families were invited to attend a 90-min education program that taught basic problem-solving principles using a cognitive-behavioral framework. The authors surmised that most education programs focused on delivering information rather than problem-solving skills and proposed that one-on-one teaching may provide more effective results (Bucher et al. 2001).
First, how can psychosocial interventions be designed to be effective given the typically short period of time available to intervene?
Second, what is the most useful way to determine which family carers need significant psychosocial support?
Third, how can health services meet the support needs of the entire family when many may only be resourced to support the primary family carer?
And finally what are the priority interventions and methods of delivery that are required for development and testing in the family carer population? (p. 4)
Answers to these questions are yet to appear consistently in the literature. That group’s own intervention demonstrated that a group education program to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable, and effective. In particular they found a significant positive effect in preparedness for the caring role, caregiving competence, caregiving rewards, and having information needs met (Hudson et al. 2008).
There are clearly many other ways to help to educate carers. One initiative is an open website “The Palliative Care Bridge” www.palliativecarebridge.com that uses recorded materials from experts in the field. There are over 70 short video interviews and presentations on all aspects of palliative care including interviews with patients and family members.
Palliative Care Australia have developed a massive open online course (MOOC) on death, dying and palliative care that is open to anyone aged 18–100 who has a computer. The 4-week course is presented by the online palliative care resource CareSearch and aims to increase death literacy in the community and engage people in conversations on the topic (http://palliativecare.org.au/new-course-on-death-dying-and-palliative-care).
Many hospices also run courses for family carers which include aspects of the dying process, communication, grief, and bereavement. Macmillan, the leading charity support at the end of life in the UK, runs face to face and online courses for carers of all experiences. A huge selection of resources are available at https://learnzone.org.uk/.
7 Educational Methods
Given the increasing demand for palliative care education, it is important there is a wide range of flexible and accessible educational modalities available to meet the learning needs of all, many of which have already been mentioned.
There is a great deal of variety in approaches to teaching and learning about palliative care from the traditional didactic lecture to simulation, eLearning, small group discussion, and interprofessional education. Ideally, the method should be that which is best suited to the audience and content being delivered. Objectives must be realistically achievable (given the timeframe and participants’ level of learning), measurable, and clearly stated. They must also be aligned with prior learning and experience and tailored according to learning needs. Of course, theoretical learning must be partnered with opportunities for practical experience including critical reflection with supervision and feedback from expert clinicians. Undergraduate students should also have opportunities to observe skilled palliative care professionals in action, such as being involved in team discussions about care planning, witnessing high-stakes conversations (about breaking bad news, prognostication, transition to palliative care, and advance care planning), as well as opportunities to be directly involved in caring for people who are dying. These are some of the most valuable, influential and enduring learning experiences a student can have.
The European Association for Palliative Care recommends 10 core competencies that all health and social care professionals should achieve, regardless of the healthcare setting they work in. These competencies provide a useful framework for palliative care education, and while they were developed for a European audience, they are easily transferable to other countries. The White Paper on Palliative Care Education can be accessed through the EAPC website http://www.eapcnet.eu/Themes/Resources/Education/EAPCWhitePaperonEducation.aspx.
Similarly, other countries have specific guidelines and legislative requirements for palliative care education that curriculum developers need to be familiar with to ensure their educational programs align with national priorities.
Relf and Heath (2006) argue that effective teaching in palliative care needs to translate knowledge into behaviors that make a “positive difference to the people we work with, namely our colleagues, patients and all those who care for them.” They identify several experiential techniques, as others have done, to provide opportunities for reflection, support, and raising awareness of what influences attitudes, assumptions, and the way we respond. They suggest the use of role-play with reflection and sculpting as useful educational methods to stimulate reflection and self-awareness.
Finally, distance education methods have been shown to be of use to informal caregivers in palliative care in Australia without relying on Internet access or having to travel to group sessions (Forbat et al. 2018). Others have demonstrated the usefulness of classroom-based education for enhancing health and social care professionals’ skills for delivering end-of-life care (Pulsford et al. 2011). We now turn our attention to specific educational methods that require focused discussion.
There is growing interest in the use of simulation-based learning experiences (SBLE) in the training of health and social care professionals in order to prepare students to meet the needs of patients and families who require a palliative approach to care. While there is no substitute for real patient interaction, the unpredictable nature of the clinical setting means that student learning can be highly variable. Simulation is one way of providing consistent learning opportunities to ensure all students can practice core skills in a safe environment with supervision and feedback from experienced clinicians and educators.
Two recent reviews showed that learning activities involving the use of high fidelity mannequins, role-play, and/or simulated patients (actors) appear to be an effective way of enhancing student learning in palliative care, especially when blended with a second modality such as eLearning when used in preparation for the simulation. Skills such as patient assessment, communication (including spiritual and cultural issues), and interprofessional teamwork were all seen as being particularly amenable to simulation, all of which are essential skills in palliative care (Smith et al. 2018; Kirkpatrick et al. 2017; Ellman et al. 2012).
An attractive feature of simulation is that it facilitates critical reflection through the debriefing and feedback process, which allows students to learn from experience (without fear of harming the patient) while developing important clinical and communication skills. Evidence also suggests that palliative simulation activities can improve knowledge and confidence (Pesut and Grieg 2018). However, it is unclear how well learners are able to transfer these skills to the clinical setting with a recent meta-analysis by Selman et al. (2017) showing a smaller effect of communication skills training on interactions with real patients, compared to those demonstrated in a simulated interaction. Personalized feedback on recorded simulated patient interactions however was shown to be helpful in improving clinicians’ ability to demonstrate empathy during real patient encounters (Selman et al. 2017).
While simulation holds a great deal of promise as an educational modality, there are important factors that need to be taken into consideration in order for a simulation activity to be successful. These include involving key stakeholders in the design, planning and delivery (especially in interprofessional simulations); clear, achievable, and measurable learning objectives; modality (i.e., high vs low fidelity, actors, role-play, blended methods); authenticity (i.e., as close to reality as possible); and careful debriefing which includes being mindful of safety issues if a student should become distressed by emotionally upsetting content (such as breaking bad news). It is also essential that learners have opportunities to transfer and consolidate the skills learned in a SBLE into the clinical setting through observation of expert clinicians in action and supervised interactions with real patients with personalized feedback from clinicians to improve performance.
In the context of today’s high-pressure, high acuity healthcare settings, simulation offers flexible, safe, and consistent opportunities for students to learn and practice essential skills in palliative care.
7.2 Interprofessional Education (IPE)
One of the cornerstones of palliative care is interprofessional teamwork, which is essential in order to be able to respond effectively to the patient and family’s physical, psychological, social, and spiritual needs. No one profession is skilled in all these areas, so team members must work collaboratively to meet patient and family needs.
The World Health Organization recommends interprofessional education as a necessary step toward preparing a collaborative practice-ready health workforce that is better prepared to respond to local health needs (WHO & Health Professions Network Nursing and Midwifery Office: Department of Human Resources for Health 2010). A common definition of interprofessional education is that which “occurs when two or more professions learn with, from and about each other to improve collaboration and the quality of care” (Barr 2002 p. 8). The assumption is that health professionals who learn together are more likely to be able to collaborate well in interprofessional teams.
In order to learn these skills, students need to have opportunities to learn with other health and social care students during their undergraduate training, both in the learning and clinical settings, to prepare them for working in interprofessional teams in the future. Students’ observations of effective interprofessional teamwork on clinical placements help students contextualize learning and avoid the risk of education out of context becoming “idealized,” thus creating difficulties when it comes to putting into practice the knowledge, skills, and attitudes learned. Furthermore, a lack of interprofessional learning opportunities can lead to clinicians practicing in silos, thus creating rigid professional boundaries and power structures that militate against effective teamwork and the shared care that characterizes communities of practice as described by Étienne Wenger (1998). By this we mean a group of people who share a concern or a passion for something they do (e.g., healthcare) and learn how to do it better as they interact regularly. This reflects the fundamentally social nature of human learning. Hospice and palliative care units provide an ideal setting for learning these skills, especially in the advanced years of undergraduate training.
Formal interprofessional programs require considerable attention to process: letting go of personal and professional biases and assumptions, exploring and defining roles to diminish stereotyping and develop understanding of each other’s strengths and abilities; and debriefing to examine system and individual responses. Much of interprofessional learning for palliative care will inevitably take place within small group settings. Small group work benefits from the usual considerations of the learning environment and brings with it additional requirements such as introductions, credentialing, agenda or objective-setting, agreement on ground rules, a modus operandi, and so forth. Whether learning in a theoretical way through cases or problems or reviewing clinical situations, there are certain considerations that can improve effectiveness for this sort of learning (Oandasan and Reeves 2005). For interactive learning to be effective, there is a need to maintain group balance, ensuring that disciplines are not likely to dominate by being overrepresented. The group size must be of an order that facilitates easy communication among the group. Finally, the group is most effective for learning where there is stability with little “turnover” and members can learn together for some time.
Discover shared meaning, a way of talking about our abilities and our experiences that can be shared
Practice a way of talking about our shared histories and social frameworks that mean we can understand each other
Negotiate identity, a way of talking about how learning changes who we are
To this should perhaps be added that we must also have a willingness to learn and work together, have trust and confidence in each other’s abilities, and have a mutual respect of each other’s abilities and contributions. How we establish these attitudes and behaviors in the workplace is crucial. Students joining communities of practice that are already functioning more or less effectively (such as clinical teams) are seen to be “on the outside,” inexpert, and inexperienced. It is important for their professional development that they are made to feel legitimate members of the team and included as much as possible in team activities. There is some risk for students in this process since they may unknowingly wander from one professional jurisdiction to another. Introductions, orientations, and role definitions all help, but the routine practice of the community is likely to be the greatest determinant of emergent professional identity. In an effectively functioning community of practice, the student is likely to witness negotiations, favors, deals, and trades between professionals conducted in the best interests of the patient – in essence, a team learning with, from, and about each other. These can be transforming experiences in the formation of professional identity and can be the subject of reflective activities. It is also important to recognize that the social dynamics of the community of practice potentially presents students with a variety of role models, a function of which the members may or may not be aware.
In a systematic review of the development of an evidence base for interdisciplinary learning, Cooper et al. (2001) identified many educational interventions from the literature which can be used for interdisciplinary learning. The prominent educational methods used were small group teaching, case studies (real or simulated), and experiential learning. Traditional didactic methods were also used in approximately one third of the interventions. The summary of the main findings of this review showed the largest effects of interdisciplinary learning were on students’ knowledge and attitudes, skills, and beliefs and in particular on understanding of professional roles in team working, ideal then for learning in and about palliative care. The smallest effects were for a transfer of learning into students’ experiential practice and an effect on students’ learning environments.
Cooperation – acknowledging and respecting others’ opinions and viewpoints
Assertiveness – supporting one’s own viewpoint with confidence
Responsibility – accepting and sharing responsibilities and participating in group decision making and planning
Coordination – efficient organization of group tasks and assignments.
Describe one’s roles and responsibilities clearly to other professions
Recognize and observe the constraints of one’s role, responsibilities, and competence, yet perceive the needs of a wider framework
Recognize and respect the roles, responsibilities, and competencies of other professions in relation to one’s own
Work with other professions to effect change and resolve conflict in the provision of care and treatment
Work with others to assess, plan, provide, and review care for individual patients
Tolerate differences, misunderstandings, and shortcomings of other professions
Facilitate interprofessional case conferences, team meetings, etc.
Enter into interdependent relationships with other professions
Palliative care is the product of a shared vision of care between the healthcare team, the patient, and their family. The care plan is informed by the patient narrative, which incorporates their values, goals, and priorities with care orientated toward realizing those values, goals, and priorities, including actions and activities that will be instrumental in helping them achieve those goals. The unique course of events and experiences taken by the dying person and their family combined with all the accompanying professional work (i.e., what the healthcare team does using their combined expertise) constitutes the trajectory of dying. In daily practice, there will be many tasks which, in total, constitute care with some degree of complementary overlap between professions. It is therefore essential that students have opportunities to learn how to work effectively as a team member which is best achieved by learning with, from, and about each other.
Gadoud et al. (2018) have described the perceptions of nonmedical palliative care health professionals (nurses, social workers, and physiotherapists) involved in medical student education in palliative care. Essentially, the staff saw the benefits and value of the experience as providing a different perspective of palliative care delivery, offering a greater understanding of interdisciplinary teams and giving patients a feeling of importance and the opportunity to contribute to student learning. The authors of this study suggest that utilizing such staff “is a practical and rewarding way to achieve undergraduate medical education in both palliative and interprofessional care” (p. 5).
What are the goals we are trying to achieve in having students learn together?
Based on these goals, when should we introduce the learning to students?
What strategies should be used to accomplish these goals? (Oandasan and Reeves 2005).
7.3 Learning in the Clinical Setting
The clinical setting is critical for applying theoretical knowledge in practice, learning and consolidating new skills both technical and humanistic, learning to work effectively as a member of an interprofessional team, and learning how to care.
The affective quality of work (and learning) is high in the palliative care context as there is often considerable emotional work to do and support required to help patients and families process the losses that occur during illness and upon (and following) the person’s death. Consequently, the emotions and values of both patients and professionals must be on the educational agenda. Case studies, recorded patient interviews, and role-plays with small group discussion are good vehicles for the exploration of these issues away from the immediate pressures and demands of the workplace. Briefings, debriefings, and case reviews can serve a similar purpose in the practice setting.
Role modeling is an important and often underestimated part of the informal curriculum that occurs in clinical settings. Observing expert clinicians communicating in difficult situations (such as breaking bad news, discussions about transition to palliative care, and advance care planning) can be a powerful and influential learning experience, especially when followed with discussion, that helps students expand their repertoire of verbal and nonverbal communication skills and provides a point of reference their future practice. Unfortunately, students are often excluded from these conversations out of a well-intentioned desire to protect the patient from unnecessary intrusion at a vulnerable time or the physician’s own discomfort in being watched especially if they lack confidence in their ability in such situations. However, if the student has an existing relationship with the patient, it is important for them to have opportunities to observe these interactions (with the patient’s consent) as well as opportunities to participate in the care of patients and families with palliative and end-of-life care needs in order to provide the necessary experience to increase their self-efficacy in palliative care.
Aside from formal teaching, much education in palliative care will take place in the clinical setting, and all clinical teachers need to be aware of the learning outcomes students are required to achieve. However, learning in the clinical setting can be messy and unpredictable, and there may be compromises and other negotiations that need to be made to achieve those outcomes which may require further educational work outside the care setting. Value can be added to work experiences through systematic processes of critical reflection such as using portfolios, logbooks, journals, and/or thought-provoking episode reports to facilitate post-encounter processing and analysis. A helpful example of this might be the Professional Development and Recognition Programme (PDRP) espoused by nursing in New Zealand. The PDRP framework and criteria have been developed cooperatively by District Health Boards and the New Zealand Nurses Organisation to advance professional development in nursing, to support nurses in demonstrating competency to the Nursing Council of New Zealand (2018), and to fulfill obligations negotiated under the nurses’ employment agreements. These programs aim to promote and reward nursing expertise and recognize the contribution of nurses to quality patient health outcomes (http://www.nursingcouncil.org.nz/Nurses/PDRPs).
Similar examples of self-reflection have been described. Brady et al. (2002) used narratives to track a group of house staff through 3 years of training to give the authors an understanding of the “interplay among residents’ interactions with patients, their own personal issues and their struggles during several discrete stages of their professional development.” One goal of the exercise was to encourage the trainees to become self-reflective. The authors felt that residents progressed through a period of “expressing ideal images of themselves as physicians through a bleak, discouraging stage of development and finally entered a stage where they could feel confirmed as professionals by their relationships with patients.” By adopting this method, the teachers encouraged deeper and clearer thinking about the young doctors’ roles and therefore help them to realize that things they learn about themselves will influence their practice as physicians. Wear (2002) used students’ narratives on end-of-life care to illustrate students’ worry and concern about end-of-life care and their perceived lack of preparation for such care. The students didn’t feel well prepared or supported as they cared for their first dying patients, which continues to be a common theme in the international literature. They did however identify their desire for more support and role modeling from residents and attending physicians.
Increasing demand for palliative care, driven by an aging population and an increasing prevalence of chronic, life-limiting conditions, makes palliative care education an essential requirement for all health and social care professionals in order to prepare them to meet the needs of the world’s population into the future. Training in professional programs must begin at undergraduate level and extend into continuing education with increased availability of advanced specialty training to combat the predicted future shortage of palliative care specialists.
The changing emphasis toward more community-oriented care indicates a need for more education and training in these settings to enable people to remain in their own homes and communities for as long as possible and to die there if that is their wish. This includes meeting the educational needs of family carers and health and social care professionals employed in community settings, including staff employed in residential aged care facilities.
This chapter has discussed current issues related to palliative care education and the strategies that can be used to deliver high-quality palliative care for all, at the heart of which is the relief of suffering in all its forms through the power of education.
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