1.1 International progress in creating palliative medicine as a specialized discipline and the development of palliative care

Throughout the world approximately 56 million people die each year, with the majority dying with or from non-communicable diseases, often in older age. The populations of Europe, North America, Australasia, and parts of Asia are ageing; increasingly, older people live with chronic and advanced conditions before they die. In other parts of the world, such as sub-Saharan Africa, communicable diseases, including HIV/AIDS, tuberculosis, and malaria, place major demands on palliative care. Palliative medicine offers opportunities for clinicians and other disciplines to work in partnership, to forge innovative alliances to shape the compassionate care of persons facing the final stages of life. Palliative care refers to enhancing the physical, psychological, emotional, social, spiritual, and existential well-being of patients and their families (Sepulveda et al., 2002).

The main objective of this chapter is to review the development of palliative medicine as a specialized discipline, and to trace the development of international initiatives, highlighting achievements and limitations in current comparative methodologies. We offer evidence on the progress of educational initiatives, both within medicine and for other members of the multidisciplinary team, at undergraduate and post-qualification level. It is beyond the scope of this chapter to review the training needs of volunteers or family carers. Finally, we consider what areas of palliative medicine require further development.

The chapter will focus upon developments in palliative medicine that relate to the care of adults, rather than children. The expansion of palliative care into specialist areas, such as cardiology, stroke medicine, or neurology, may increase demands for dual qualifications. Likewise, there are new developments in oncology practice which call for a more explicit integration of palliative care throughout the trajectory of illness and into protracted periods of survivorship with advanced disease (Kaasa et al., 2011).

Prior to the beginning of the twenty-first century, there had only been sporadic progress in the development of palliative care internationally. The first hospices were opened over a century ago in Dublin (Our Lady’s Hospice) and in the East End of London (St Joseph’s Hospice, Hackney) by Catholic nuns as a charitable and religious mission caring for those dying of tuberculosis and living in poverty (Humphreys, 2001; Winslow and Clark, 2005). Considerably later, St Christopher’s Hospice opened in South London in 1967, following the pioneering work of Dame Cicely Saunders, and this was soon followed by hospice and palliative care initiatives in Western European countries (Table 1.1.1).

The first hospital palliative care team was established in the Royal Victoria Hospital, Montreal, by Balfour Mount in 1976, followed by the St Thomas’ Hospital, London, team in 1977.

In the United States, hospice programmes began in the 1970s and Medicare funding was secured in 1982 (providing reimbursement of costs through insurance but requiring relinquishment of curative treatments). In 1988, the European Association for Palliative Care (EAPC) was formed (Blumhuber et al., 2002), and in the mid 1990s the International Association of Hospice and Palliative Care (IAHPC) was established in the United States. In South America, the 1994 Declaration of Florianopolis raised awareness of barriers to the accessibility and availability of opioids in the region (Stjernswärd et al., 1995), and in 2000, the Latin American Association of Palliative Care was formed.

During communist rule in the countries of Central and Eastern Europe and Commonwealth of Independent States (CEE/CIS), there had been few significant palliative care developments. Following the political changes of the 1990s, there was a steady development of palliative care services in this region (Table 1.1.2). This was due in part to initiatives such as the Poznan Declaration (‘The Poznan Declaration 1998’, 1999) and the Eastern and Central Europe Palliative Task Force (ECEPT) which commenced in 1999 (ECEPT, n.d.). Financial support to the palliative care programmes within CEE and CIS came from the Open Society Foundations (OSF) Public Health Program (OSF, 2014), one of very few donors at the start of the new millennium supporting palliative care in this geographical area.

The early part of the twenty-first century witnessed a number of significant international developments: the Asia Pacific Hospice Palliative Care Network was formed in 2001 (Goh, 2002); in 2002, the Hospice Information Service recommenced in the United Kingdom; the first conference focusing on international development of palliative care was held at the Hague in 2003, and in the same year the European Society for Medical Oncology officially recognized the discipline (Cherny et al., 2003). Also in 2003, palliative care development in the CEE/CIS region was stimulated by the Council of Europe (2003) report on palliative care which provided specific guidelines provision. In 2004, the African Palliative Care Association was formed and two World Health Organization (WHO) publications aimed to improve the quality of care provided at the end of life (Davies and Higginson, 2004a, 2000b). Also in 2004, the United States Agency for International Development (USAID) launched the President’s Emergency Plan for AIDS Relief (PEPFAR), which allocated funds to the development of hospice and palliative care. The second conference on international palliative care development was held in Seoul in 2005, and the first World Hospice and Palliative Care Day was celebrated in the same year.

Regular congresses organized by the EAPC provided excellent platforms for increased collaboration in international development of palliative care and by 2012 these had become designated as world congresses. In 2006, a Declaration was compiled that stressed the need for increased palliative care research in resource-poor countries, leading to a pledge to improve palliative care across Europe in 2007 (Radbruch et al., 2007). In the same year, the IAHPC and WHO led in producing a list of 34 essential medicines for palliative care. The Worldwide Palliative Care Alliance (WPCA) was formally constituted in 2009.

Relatively recently, studies which generate comparative analyses of palliative care development and attempt to map the development of palliative care across countries, regions, and continents have begun to occur. The first study focused on seven countries in Western Europe (Clark et al., 2000) and was followed by mapping of 28 countries in Eastern Europe and Central Asia (Clark and Wright 2003). As a result of the latter project, the International Observatory on End of Life Care (IOELC) was established in 2003. The IOELC used comparative methods based on a common template to present its research-based country reports. This resulted in reviews of palliative care development in Africa (26 countries) (Wright et al., 2008), the Middle East (six countries), and South East Asia (three countries) (Wright et al., 2010), as well as India (McDermott et al., 2008).

Two further comparative studies of European palliative care development were undertaken. The first study focused on 11 European countries (Jaspers and Schindler, 2004). The second study focused on 16 European countries (Project on Hospice and Palliative Care in Europe n.d.), including the Czech Republic, Estonia, Hungary, Latvia, Lithuania, Poland, Slovakia, and Ukraine.

The EAPC Task Force on the Development of Palliative Care in Europe was founded in 2003, and has contributed substantially to documenting the progress of palliative care, producing, for the first time, comparative data on the status of services across the whole of the WHO European Region (a geographic area of 53 countries and a population of 879 million people) (Centeno et al., 2004). The Task Force works closely with a number of international hospice and palliative care organizations; in particular, IOELC, IAHPC, and Help the Hospices (HTH). In 2006, the initial findings of the Task Force were presented in the form of a map of specific resources of palliative care in Europe. In 2007, the Task Force produced a set of country reports that documented the existence of palliative care services using a common template to facilitate cross-national and regional comparison, published as a European Atlas of Palliative Care (Centeno et al., 2007a), and disseminated via the web pages of the EAPC (EAPC, 2013). They function as benchmarks, to enable countries to ascertain their level of palliative care development compared with others in their region and to track developments over time.

The EAPC Review of Palliative Care in Europe (Rocafort and Centeno, 2008), and associated articles were published in peer-reviewed journals. One article examined data on palliative medicine as an area of certified specialization in 52 European countries (Centeno, et al., 2007b). Another compiled facts and indicators on the development of palliative care in those countries (Centeno et al., 2007c). Two further articles examined barriers to the development of palliative care in both CEE/CIS (Lynch et al., 2009) and Western Europe (Lynch et al., 2010).

Emerging from this series of studies was an ambitious attempt in 2006 to measure and classify global palliative care development. The IOELC built on a basic description that had been produced by the Hospice Information Service but attempted to build more depth into the analysis, by developing a four-part typology, depicting levels of hospice-palliative care development across the globe: no known hospice-palliative care activity (group 1 countries); capacity building activity (group 2 countries); localized hospice-palliative care provision (group 3 countries); and countries where hospice-palliative care services were reaching a measure of integration with the mainstream health-care system (group 4 countries). By presenting a ‘world map’, the study sought to contribute to debate about the growth and recognition of palliative care services and, in particular, whether or not the four-part typology reflected sequential levels of development (Wright et al., 2008).

Since 2006, there have been further comparative studies of palliative care development. For example, in 2008, the work of the EAPC Task Force was extended in a collaborative study which specifically focused on the 27 member states of the European Union (EU) (Martin-Moreno et al., 2008). This study moved beyond a descriptive comparison of the data, to sketch out the beginnings of a more detailed method for ranking the 27 countries by the level of their palliative care development. A study commissioned by the Lien Foundation in Singapore and carried out by the Economist Intelligence Unit was published in 2010. This produced a ranking of palliative care development; this time in 40 countries of the world, and with a more complex set of indicators (Economist Intelligence Unit 2010). In 2011, a report from Human Rights Watch also documented the state of pain and palliative care services in 40 countries (Human Rights Watch 2011).

There are a number of practical and methodological challenges inherent in the mapping and measuring of global palliative care development. In 2011, the EAPC Task Force embarked upon a new programme of work to refine its original methods and to produce updated information on the status of palliative care in each European country. The work culminated in the production of a second edition of the EAPC Atlas of Palliative Care in Europe that was launched at the EAPC Congress in Prague, June 2013. The Atlas addresses limitations and difficulties associated with standardization of terminology relating to hospice and palliative care services. It also addresses some of the unintended negative effects that may occur when benchmarking studies are undertaken, such as the role of ‘human emotions’ within the process of collecting the data—the fact that data provided by ‘key persons’ and national associations could have been inflated by ‘competitive tendencies’.

The 2006 study that mapped the global development of palliative care was revised by the Worldwide Palliative Care Alliance in 2011, to update the original findings and facilitate cross-national comparative analysis and stimulate advocacy, policymaking, and service development. The results of the mapping study are shown in Fig. 1.1.1 (Lynch et al 2011).

Although the 2006 study had been heavily cited and adopted as a tool for international palliative care advocacy, it became clear that the rankings might benefit from refinement and the method of categorization could also be made more robust. Consequently, within the revised typology, changes were made to the criteria for the levels of palliative care development in groups 3 and 4 and these were subdivided to produce two additional levels of categorization: 3a/3b (isolated palliative care provision/generalized palliative care provision) and 4a/4b (countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision/countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision). In addition, the EAPC undertook an extensive, consultative, and consensus-building exercise to agree norms and standards for palliative care within Europe (Radbruch and Payne 2009, 2010).

It was acknowledged that the global mapping study had other limitations. As with the 2006 study, there remained an absence of data for some countries, and respondents often experienced difficulty in choosing between the newly divided categories. Some respondents suggested that their country ‘did not fit into any category’, that their country was ‘somewhere on the border’ between two categories, or that ‘strengths and limitations’ existed within each subcategory. Achieving comparability between settings and the way in which services are counted also proved problematic. Two systems operate in tandem. Services in five of the six continents tend to be counted by provider, irrespective of the number of services. In Europe, they are usually counted by type (e.g. home care, day care, inpatient units, or hospital teams). Although this allows a degree of comparability for services in the countries of Europe and within and across the other five continents, it also inhibits any comparable worldwide analysis. In addition, listing services by provider could be a source of bias as a country with fewer but larger-scale provider organizations would show a lower ratio of services per capita compared with a country having several small providers. Differences in the way in which services are counted may be an artefact of the procedures for ‘counting’ organizations. The authors attempted to address these issues by listing the number of providers and services in the same category of data under the heading ‘services/providers’, and attempting to glean clarification from ‘key persons’ and local palliative care experts.

A major problem faced in this and other studies was that of standardization and definition in how services are characterized. Terms such as ‘hospice’, ‘inpatient unit’, or ‘mobile team’ do not have a universal currency and globally there were difficulties in comparing them. The authors also note the diversity of provision and the different ‘histories’ of palliative care in specific jurisdictions and acknowledge the absence of agreed standards and quality measures globally. In addition, the vast majority of data relating to palliative care development originated from palliative care activists and this was acknowledged as a potential source of bias or inaccuracy, with the inherent risk of data that either under-reported or over-reported the number of services.

The 5-year Access to Opioid Medication in Europe (ATOME) project commenced in December 2009, funded by the European Commission’s 7th Framework Programme. The aim of the project is to improve access to opioids in 12 European countries where there is statistical evidence of very low morphine per capita consumption: Estonia, Latvia, Lithuania, Poland, Slovakia, Hungary, Slovenia, Serbia, Bulgaria, Greece, Turkey, and Cyprus. The ten partners of the ATOME project work with country teams, including government officials and public health and medicine experts, to carry out legislative and policy reviews, leading to recommendations that will facilitate access for all patients requiring treatment with medicines controlled under the international drug conventions. The integration of palliative care and harm reduction is a key aim of the project.

The project is undertaking a national situational analysis in each country with regard to the accessibility and availability of controlled medicines, including their use and causes for underuse. It is conducting an external review of relevant national legislation in each country and recommending appropriate amendments to governments. It is anticipated that the project will improve access to essential controlled medicines, including opioid analgesics and opioids used in substitution therapy for the treatment of opioid dependence, in the majority of the 12 European countries. Improved access will also contribute to the effective prevention of HIV/AIDS transmission among and from injecting drug user populations.

There are a number of research initiatives being undertaken within the ATOME project. For example, the principle of ‘balance’ in opioid control policy requires governments not only to prevent drug abuse, but also to ensure the availability of opioid analgesics for medical purposes. Efforts to prevent drug abuse and diversion must not interfere with the adequate availability of medication for patients’ pain relief and drug substitution therapy. Within this context, the ATOME project has revised the WHO guidelines Ensuring Balance in National Policies on Controlled Substances (WHO 2011).

Two ATOME workshops (involving six countries each) drew together relevant stakeholders who formed a country team that analysed their country situation using a checklist developed by the WHO and the WHO Collaborating Centre for Communication and Policy in Cancer Care (University of Wisconsin, United States). The checklist was used by each country team to identify existing barriers for access to controlled medications at all levels of their respective health-care and legislative systems. As a follow-up to these workshops, 1-day national conferences are being organized in each of the 12 target countries (in collaboration with the country teams) in order to evaluate the implementation of the revised guidelines and to disseminate the project’s findings and recommendations to relevant ministries, health-care professionals, and the general public, including patients and their families. Promoting the acceptance of rational use of opioids as medicines, both for pain management and substitution therapy, is also a priority of each conference.

In addition, a workshop was held to discuss the training of lawyers and national counterparts on how to review national controlled substance legislation from the perspective of balancing availability and prevention of abuse; lawyers from each country and 12 national counterparts identified from within the Ministry of Health were in attendance. Recommendations have been drafted to lift these barriers in such a way that prevention of drug abuse is warranted.

It is anticipated that collaboration between government officials and national health professionals in the project’s 12 country teams will contribute to research in the area of pain management policy. A strong focus on the recommendations for policy and legislative change and their dissemination to key decision-makers at national and European level will help to ensure that causes of inappropriate prescribing and poor compliance will be identified and policy recommendations for safe, effective, and cost-effective use of medicines in Europe developed. The ATOME project draws on the successful lessons learned in Romania.

The International Palliative Care Initiative (IPCI) was established in 2000 with an overall goal of integrating palliative care into national health-care systems. The IPCI promotes the WHO public health model, adopting a multi-pronged strategy that includes legal and policy reform, including drug availability and standards development, as well as education, training, and financing. The economic costs and benefits of palliative care are considered as key themes, as support for health budget monitoring activities may enable access to funding for palliative care treatment. In several countries, the IPCI, in collaboration with the OSF Public Health Program Health Budget Monitoring Advocacy project (HBMA), have managed to get members of the Ministry of Health and other key players (e.g. pharmaceutical and insurance companies) aligned to their way of thinking. This has been achieved through their support for policy analysis debate and for national and regional workshops.

Initially, Romania had a very restrictive controlled drugs legislation, dating back to 1963, which did not allow for adequate pain management or adequate treatment of opioid dependence. Terminally ill cancer patients could qualify for pain medication, but still had to overcome several serious barriers to access it. All other moderate and severe pain patients were excluded from adequate pain relief with opioid analgesics.

In 2002, the IPCI and the Pain and Policy Studies Group (PPSG) WHO Centre for Policy and Communications in Cancer Care, organized a regional workshop with representatives from Ministries of Health, narcotics control, and national HIV and cancer control programmes from six countries: Bulgaria, Croatia, Hungary, Lithuania, Poland, and Romania. Action plans were developed and technical assistance was provided by the Centre, leading to a significant change in legislation in Romania in 2005. This proved to be a watershed event for palliative care development not only in Romania, but more broadly both in the CEE/CIS region and throughout the world. Another activity developed in cooperation with the Romanian Ministry of Health was a workshop on controlled drugs legislation, held in Bucharest under the EU PHARE Programme in December 2003.

Following these initiatives, the Romanian government developed a new controlled drugs act, which was enforced in June 2006. To ensure proper implementation, the WHO Department of Medicines Policy and Standards, PPSG, Hospice Casa Sperantei, and the Romanian Ministry of Health, co-organized a workshop in 2006 where the implementation of the recent legislation was discussed. Policy was also developed for the training of physicians in prescribing opioid analgesics. Furthermore, the government established treatment facilities for opioid dependence in each province and in three prisons. Romania had laid the foundations for adequate access to essential controlled medicines.

Thanks to the IPCI and HBMA’s support for budget monitoring activities, in April 2010 the Romanian Ministry of Health decided to finance palliative care and also to contribute to paying the costs of home-based care. Prior to this project, there was no government coverage of palliative care treatment. This project not only enabled access to funding for palliative care treatment, but also, unexpectedly, helped sharpen the national definition of palliative care.

Future increases in the need for palliative care will place demands upon knowledge transfer across the whole workforce of those people who are involved. This section will review definitions of education and scholarship, and consider the extent to which early calls for integration between palliative care practice and education have been achieved (Sheldon and Smith, 1996). We draw upon the work of a number of task forces (time-limited expert working groups) convened by the EAPC, who, over the last decade, have made proposals for core educational curricula in medicine, nursing, and psychology. This leads on to discussion of the international growth of specialist palliative medicine as a discipline, highlighting potential advantages and disadvantages of this growth. Finally, we review the opportunities that innovations in communication and information technologies offer in terms of education and knowledge transfer.

Separating education and training as distinct elements of learning might be helpful at the outset. According to Wee and Hughes (2007, p. 2), ‘Education is the process through which learning occurs. Training, on the other hand, is about the acquisition of knowledge or skills to deal with particular types of event’. Arguably education is a life-long endeavour, in which new knowledge is gained, embedded in the context of appropriate attitudes and values, which are used to inform high-quality practice. Palliative care draws upon pedagogical theories that are common to other health and social disciplines, which may be influenced by fashions, trends, and new developments. It is important to recognize that the content of education programmes—the curriculum—has three aspects: the formal curriculum as defined by educators, and often directed by statutory or disciplinary requirements; the informal curriculum which arises out of the interaction between learners and teachers; and the hidden curriculum which refers to the cultural learning environment (Wee and Hughes, 2007). Congruence between all three elements enhances the educational experience.

Multidisciplinary palliative care educational developments have progressed greatly in the United States (Weissman et al., 2007), including those in specific clinical contexts such as cancer care (Coyne et al., 2007) and intensive care (Ferrell et al., 2007). In Europe, the EAPC has coordinated a number of task forces focused on core professional disciplines within palliative care including nurse education (De Vlieger et al., 2004), undergraduate medical education within medicine (EAPC, 2007), postgraduate education for physicians (EAPC, 2009), and postgraduate education for psychologists (Junger and Payne, 2011). Further work is currently underway to identify a core educational curriculum for social workers and in the specialist area of paediatric palliative care. Ten core competences in interdisciplinary palliative care have been drawn together following a rigorous review and consensus process, to provide a framework for practitioners who work within the field (Gamondi et al.,2013a, 2013b). These core competences in palliative care, for all disciplines, provide a benchmark against which educational programme content and assessment can be matched, across institutions and internationally.

There is anecdotal evidence of considerable growth in the provision of post-qualification education in palliative care, but in the absence of collective databases of provision or any assessment of their level and quality, it is remarkably difficult to make accurate estimates of the number of programmes, the level of provision, and the quality of education offered. Moreover, programmes are currently offered by many organizations including hospices, hospitals, higher education and universities, with course lengths varying from a few hours to years. To address this gap in knowledge, a project undertaken by the IOELC has mapped educational provision at post-qualification level. We are aware of increasing numbers of certificated higher education awards being offered by universities; for example, in Asia, Masters in Palliative Care are available in Japan, and doctorate programmes are available for physicians, nurses, and allied health professionals in Singapore, Japan, and Korea (Payne et al., 2012). In Europe, there are exciting innovations with blended-learning programmes leading to a PhD in Palliative Care now being offered in the United Kingdom and Norway, and a large European Commission funded project designed to offer training to 12 PhD students and four post-doctoral fellows (End-of-Life Care 2011). The European Palliative Care Academy, funded by the Bosch Foundation, launched an international programme to enhance palliative care education and leadership training for clinicians across Europe in 2013.

An important drive to improve palliative care for all patients is the implementation of basic education in undergraduate curricula throughout all medical, nursing, and health professional courses globally, with an introduction to the principles of palliative care practice, including symptom control and communication skills. This should be supplemented by supervised clinical placements in palliative care so that students can engage in experiential learning. This is likely to raise awareness of what palliative care services can offer and means more appropriate and timely referrals of those with complex problems, and empowers professionals to manage better those with less need for specialist input.

Palliative medicine has been recognized as a specialty within the United Kingdom since 1987 and doctors wishing to achieve specialist registration must undergo post-registration specialist clinical training (Centeno et al., 2007b). The number of countries with specialist physician status for palliative medicine continues to grow including Ireland, Israel, and Germany. There remains some debate as to whether subspecialty status, for example, with registration in internal medicine or oncology, offers a better way to encourage high-quality physicians to enter this field and to prevent palliative medicine from becoming marginalized. Within nursing, similar development of specialist training and practice are evident, particularly in resource-rich regions, where clinical nurse specialists in palliative care have been shown to be effective (Larkin, 2008).

To sum up, given that this chapter has covered both a rapid overview of the development of palliative care and has highlighted key developments in palliative care education, it seems safe to conclude that, in some parts of the world, palliative care can be regarded as a success. There is evidence of increasing integration, with mainstream health-care provision, the inclusion of palliative care into national health-care planning process, and in a few places specific Palliative Care Strategic Plans have been adopted. This bodes well, even in times of financial constraint and uncertainty. However, countries with this level of development are very few, and even within these countries there may be inequity for particular patients, such as the very old, those with dementia, and who do not fit comfortably into mainstream society (Oliviere et al., 2011). In our view, one of the major challenges for the future is to improve equity of access to good quality care during the final phase of life, however long that may last. It is likely that advances in medicine and health technologies will mean that greater numbers of people will survive for longer with complex health and social care needs. This will mean a different type of workforce is required to provide basic palliative care wherever the patient and family are located and opportunities for advice, support, and referral to specialist palliative care providers. This will challenge specialist professionals to facilitate and coordinate care, rather than provide ‘hands-on’ care, which means that developing knowledge and skills in consultancy, advocacy, education, and leadership will form essential components alongside well-recognized knowledge in pain and symptom management, and psychosocial and existential support. A key component of specialist palliative care, however, must be the continued provision of care, otherwise the workforce deskills itself and loses credibility. In economically disadvantaged countries, it is essential that appropriate, sustainable models are developed.