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Palliative care in Europe 

Palliative care in Europe
Chapter:
Palliative care in Europe
Author(s):

Marianne Jensen Hjermstad

and Stein Kaasa

DOI:
10.1093/med/9780199332342.003.0075
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Key points

  • The diversity in economy, culture, and health policy in today’s Europe represent a challenge for the development of palliative care (PC), and does not permit the implementation of one particular PC model everywhere.

  • The need for palliative care will rise because of the increasing cancer incidence and an elderly population, and accentuates the need for professional education and sufficient core competencies for delivery of high quality care at basic, intermediate, and specialist levels.

  • Many cancer patients with incurable disease live much longer than before thanks to novel therapeutic agents, and often experience acute or chronic side effects which call for an early introduction of PC to provide adequate and systematic symptom management and follow-up care.

Palliative care begins from the understanding that every patient has his or her own story, relationship, and culture and is worthy of respect as an individual. This implies that palliative care should be patient oriented, guided by the needs of the patient and taking into account his or her values and preferences, and that ethical issues are considered with cultural variation in needs and values.

Both the former and most recent definition of palliative care from the World Health Organization (WHO) stated that palliative care is “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, psycho-social, and spiritual.”1,2 Recommendations on the organization of palliative care to meet these aspects were also emphasized in a document on palliative care from the Council of Europe in 2003.

Palliative care should be offered at all levels in the healthcare system and should be regarded as an integral part of all medical services; it is multidimensional and interdisciplinary. The WHO definition also emphasizes that “palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.”2

There has been a remarkable development of palliative care in Europe during the last decade in particular, which is a result of the systematic and continuous work from the European Association of Palliative Care (EAPC) in close collaboration with important stakeholders from a variety of healthcare disciplines.3 The vision is to achieve professional excellence in palliative care that meets the needs of patients and caregivers. The work toward consensus-based treatment guidelines and standardized outcome measurements represent two of several steps in this direction.4,5,6,7,8

Typical components of palliative care in parts of Europe today include proactive, multidimensional and quantitative symptom-assessment, communication interventions emphasizing both preparation for the dying process and maintaining hope, alongside tumor-directed and symptomatic treatment.9 Quite often specialist palliative care is delivered by specialized palliative care interdisciplinary teams in designated units and is therefore not available to all who may need this level of professional care.10,11,12,13 This has led to international discussions on how to achieve a professional integration of oncology and specialist palliative care, with an ongoing EAPC project focusing on care delivery models in general oncology centers as a start.14

Based on the above, it is obvious that palliative care has its own special characteristics that are not entirely covered by the competence, organization, and structure as of today’s mainstream healthcare system. Thus, there has been a considerable development in recognizing palliative care as a medical and nursing specialty, and palliative medicine and nursing have increasingly being acknowledged in many countries as a medical specialty beyond the basic level.15,16 In many European countries palliative medicine is now a mandatory subject in the medical schools, as in Germany since 2013. In the Nordic countries, a 2-year specialist training program for physicians working in palliative medicine was started in 2003, and attracted huge interest.17 The course is offered every other year, lasts 21 months, and is composed of six 1-week slots of teaching with working assignments in the intervals. All participants conduct a small research project, and many write a paper for publication, preferably for international journals. More than 150 participants had completed the course in the spring of 2013.

Cancer causes 20% of deaths in the European Region. With more than 2.4 million new cases and 1.3 million deaths each year, cancer is the most important cause of death and morbidity in Europe after cardiovascular diseases, accounting for 26% of all deaths in 2008.18

The cancer incidence rate is steadily increasing every year in most European countries.19 The cancer mortality rates have shown a gradual decrease in many western European countries, and in Norway a demonstrated improved survival is seen in all the major cancers: breast, prostate, lung, and colorectal.19 Nevertheless, the steadily aging population and improved treatment mean that more patients are living longer with metastatic disease. The most recent EUROCARE 4 analyses20 showed slight increases in survival and decreases in geographic differences over time compared with the figures from the previous EUROCARE study for all cancer studied. This was interpreted as a result of improvements in healthcare services in countries with poor survival and taken as an indication of better cancer care.

Because palliative care goes far beyond opioid availability and pain treatment and encompasses all the key elements of the holistic nursing approach—the care needs, the suffering, and the dignity and the quality of life of patients and relatives toward the last stages of life—it seems inappropriate to draw artificial lines between disease-modifying therapy and palliative care. This becomes even more evident when we know that many cancer patients are not cured from their disease but will live much longer even when diagnosed with incurable malignancies thanks to novel therapeutic agents. This has led to remarkable changes in oncology practice,11 and once again emphasizes the need to introduce palliative care early in the stage of disease to provide the necessary support and important elements of this care to all patients. Thus, the development and improvement of palliative care is an important, growing, and large public health issue across nations and cultures regardless of diagnoses.

The purpose of this chapter is to present some of the European experiences with respect to the development, organization, and delivery of palliative care, educational issues, and research.

The situation in Europe

Because of the increasing life expectancy and declining birth rates, the age distribution in many European nations is skewed toward a larger proportion of older people. It is well known that the overall cancer incidence rises with advanced age, and statistics show that three out of four new cancers arise in people above the age of 60 in some European countries.19 Because this proportion is likely to increase due to an increasing cancer incidence, an aging population, and maybe also lifestyle changes, more people with cancer are expected in the near future. Predictions for causes of death in Europe over a 20-year period from 1990 to 2020 show a changing pattern (Table 74.1), with more people living with and dying from chronic diseases.1,21

Table 74.1 Predicted causes of death in Europe for 2020 compared with the 1990 figures

Disorder

Predicted ranking 2020

Previous ranking 1990

Ischemic heart disease

1

1

Cerebrovascular disease (including stroke)

2

2

Chronic obstructive pulmonary disease

3

6

Lower respiratory infections

4

3

Lung, trachea, and bronchial cancer

5

10

Sources: Davies and Higginson (2004), reference 1; Murray and Lopez (1997), reference 21.

Palliative care is often associated with cancer, but the principles and definitions of palliative care are universal for several diseases.2 Although different diseases present with various symptoms along the illness trajectory, epidemiological studies show that many symptoms and problems in the last year of life are similar.22 Most often this represents a challenge to the healthcare systems in the delivery of effective and adequate end-of-life care to an increasing number of people. However, in many, if not most, specialized palliative care units (PCUs) more than 90% of the patients suffer from advanced cancer,6 and early provision of professional palliative care improves quality of life and may also increase survival.23 Reports show that such evidence from quality palliative care is not yet available for dementia.24 This diagnosis now represents a huge health challenge with more than 35.6 million people living with this disease, a number that is expected to double by 2013.25 To extend and promote palliative care beyond the field of oncology, EAPC has launched several initiatives focusing on palliative care to other groups, for example the elderly, patients with neurological diseases, and children,26 and for people on the African continent.27

Europe has gone through great political changes in the last 20 years and particularly so during the last decade, economically and culturally. From 2004, 12 new countries have become members of the European Union (EU), counting 28 membership states by July 2013. The new states are primarily former eastern European states, with Bulgaria and Romania as new members in 2007 and Croatia as the most recent in July 2013, with another five candidates on the list. Despite an economic growth in Europe in general, there is still great diversity related to industrial, economic, cultural, and health policy aspects, as well as significant differences in population size, from 5 million in Norway to more than 83 million people in Germany and 105 million people in Russia. These diversities represent a challenge for the development of palliative care across Europe, which is shown in the recently launched EAPC Atlas of Palliative Care in Europe 201328 suggesting a relationship between the establishment of palliative care programs and the Human Development Index (HDI) or other indicators related to national expenditure on health. Specific initiatives have been launched that focus on the development of palliative care in eastern Europe, with respect to education and clinical training, establishing of services, and improved access to opioids.3,28 Also, the Open Society Institute (OSI), now known as the Open Society Foundations (OSF)29 has played a major role in the development of palliative care in eastern European countries. The OSF is a grant-making operation founded in 1993 aimed to shape public policy to promote democratic governance, human rights, and economic, legal, and social reform. Locally, OSF implements a range of initiatives to support the rule of law, education, public health, and independent media to raise the awareness of basic human rights, such as healthcare. This has resulted in an improved availability of palliative care in eastern Europe in general over the last 5 years despite the relatively poor living standards in that part of the continent, although huge differences still remain.

The continuously increasing medical and scientific collaboration across borders has led to the development of various models for palliative care. Some European centers are influenced by the Canadian model in Edmonton, Alberta,30 the Beth Israel Medical Center program in New York City, New York,31 or by the WHO project on palliative care implementation that influenced the development of palliative medicine throughout Spain.32 However, directly adopting a model from another nation with a different healthcare system is not always feasible. An example of this is the integration of the departments of pain service and palliative medicine into one, as has been successfully done at Beth Israel in New York. The pain programs in Europe are most often closely linked to anesthesiology, and, as such, not only are caring for palliative care patients but also taking care of patients with postoperative pain, chronic nonmalignant pain, chronic back pain, acute pain conditions, and so forth. Although pain treatment is an essential part of palliative care, the linkage between departments in Europe is more often based on cooperation and consultation services and, to some extent, translational research. Several services in Europe have begun either from pain/anesthesiology and/or oncology teams. It seems that the most successful programs have been able to combine the skills and knowledge across specialties and disciplines. This, together with today’s clear recommendation from the WHO, EAPC, and other organizations of an early introduction of palliative care in the disease trajectory, is a strong argument in the discussion of a stronger integration of oncology and specialized palliative care. This may also indicate that it is time is to merge small departments of palliative care with departments of pain management.

The EAPC Atlas28 “gives a comprehensive overview of the development of palliative care in Europe. The work is one of the outcomes of the EAPC Task Force on the Development of Palliative Care in Europe, initiated in 2003. The aims were “to provide an updated, reliable and comprehensive analysis on the development of palliative care within each European country, in order to generate and disseminate an ‘evidence base’ of clear and accessible research-based information concerning the current provision of the discipline across the WHO European region.”28

The work was based on (1) an expert survey in which 89 “key persons” from 49 countries of the WHO European region were identified to complete the quantitative Facts Questionnaire asking about factual data on palliative care provision in each country. The qualitative Eurobarometer Survey was also completed, which places the quantitative Facts data within a sociocultural context, a wider milieu of healthcare policy, and in relation to social, ethical, and cultural factors; (2) a peer-review process of the data; (3) an update of the literature review from the former Atlas from 2007; and (4) additional information from the EAPC Head Office on national activities, attendance to conferences, website hits, plus assistance from the cartography department.28 Data from 46 of the 53 countries in the WHO European region is included in the Atlas.

This gives information about the national palliative care activities with respect to implementation of palliative programs, finances and funding, and delivery of care through PCUs/hospices/home care, as well as education, specialist training, and research. There has been a gradual growth in this medical field during the last 3 decades, with significant innovations in the last 10 years. The first national PCUs were opened in Great Britain in 1967, in Cyprus in 1974, and in Norway in 1993. Germany, France, Poland, and Finland followed before 1999. After this, Romania, the Netherlands, Belgium, Hungary, Portugal, Austria, Switzerland, Slovakia, Denmark, and Luxembourg all established their units before the change of the millennium. However, as can be seen in Figure 74.1, there are huge differences across countries with respect to the number of PC beds and PCU services per million inhabitants across countries. Ireland, Iceland, and Belgium have the highest concentration of PCUs, with almost 18–20 units per million inhabitants, with the United Kingdom, Sweden, Netherlands, Poland, and Austria in the second category with 12-16 units per million. We can find the United Kingdom, Sweden, the Netherlands, Poland, and Austria in a second group of countries with 12–16 units per million. A total of 23 services were identified in Czech Republic, where the density of services is still low.28 An EAPC position paper on standards and norms for hospice and palliative care in Europe claims that the original estimate of 50 palliative care beds per million inhabitants should be upgraded to 80–100 beds per million inhabitants.33,34 It should be remembered however, that the differences displayed in the numbers presented here in part represent a real difference but are also in part due to a report bias in that there are differences in definitions of what constitutes a palliative care bed and a PCU across Europe.


Figure 74.1 Palliative care beds and units.

Figure 74.1 Palliative care beds and units.

Source: Adapted with permission, EAPC Atlas of Palliative Care in Europe 2013, reference 28.

To place palliative care on the health policy agenda, strategic interventions based on evidence-based knowledge and consensus among international experts in the field are mandatory to gain the necessary influence. This can be achieved through the establishment of professional organizations, such as the EAPC (www.eapcnet.eu),3 development of pan-European research networks such as the INTERDEM (Early detection and INTervention in DEMentia)35 and the European Palliative Care Research Centre (PRC)36 in Trondheim, Norway, and formal collaborations between related associations and networks within clinical work and research.

The EAPC was established in 1988 with 42 members, on the initiative of Professor Ventafridda and the Floriani Foundation in Italy. The aim of the EAPC is to promote palliative care in Europe at the scientific, clinical, and social levels. In 1998, the EAPC was awarded the status of nongovernmental organization (NGO) of the Council of Europe and was transformed to “Onlus” (nonprofit organization with social utility). By 2013, the EAPC had individual members from 47 nations across the world, and collective members from 54 national associations in 32 European countries (Figure 74.2), representing not only professionals but also volunteers contributing to palliative care.3


Figure 74.2 Development of collective member associations in the EAPC, 1989 to 2013.

Figure 74.2 Development of collective member associations in the EAPC, 1989 to 2013.

The activities of the EAPC have grown exponentially since its foundation 25 years ago, in order to develop and promote palliative care in Europe through information, education, and research using multiprofessional collaboration, while engaging with stakeholders at all levels. The work is mainly focused on six areas: policy, organization, education, ethics, clinical and care, and research, supplemented by a special section on specific target groups (children, people with intellectual disabilities, neurological diseases, family carers, etc.).3

The activities generally involve either task forces—time-limited international working groups often involving leading experts in the field and focusing on specific objectives—or white papers, which are specific remits that are agreed to by the board. A variety of task forces have been established (Figure 74.3), primarily within the areas of policy, education, and clinical and care and for the specific target groups.3 Results from this work have been disseminated as several important position papers or statements, clinical guidelines, recommendations on educational curricula or consensus, and are regarded as important for informing policy, practice and education in Europe and beyond.


Figure 74.3 Policy, education, clinical, and care task forces for core groups.

Figure 74.3 Policy, education, clinical, and care task forces for core groups.

The EAPC first participated in two Expressions of Interest presented to the European community for the sixth and seventh Framework Research Programs within the EU. As a result of this work, research programs related to palliative care and advanced cancer have been brought to the forefront of the agenda for advanced research and have led to the initiation of several subsequent palliative care projects that have also received funding from the Framework Research Programs of the EU.37 This has improved the scientific level in palliative care research, has substantially increased the European collaboration in the field, and has also led to more multidisciplinary research.

The European Palliative Care Research Collaborative (EPCRC; 2006–2010)38 was the first major palliative care project within the Framework Programs of the EU.39 The project engaged 60 coworkers at 11 centers in 6 European countries and collaborators from Canada and Australia. The EPCRC had close links to the EAPC and the EAPC Research Network (EAPC RN). Workshops run by the EPCRC were arranged at all EAPC congresses, 2007–2010.38

The EPCRC addressed three main areas in three main symptoms: genetics, assessment and classification, and guidelines in pain, depression, and cachexia. The major objectives were to develop novel genetic methods for the prediction of opioid responses and individual variation in cachexia, in addition to developing consensus and evidence-based methodology for assessment and classification of pain, cachexia, and depression. Examples of important results from the work of the EPCRC include the update and publication of European evidence-based guidelines for opioid analgesics for cancer pain in close collaboration with the EAPC RN.3 Also, a new, European Clinical Guideline5 on the Management of Depression in Palliative Care was developed under the EPCRC umbrella.38 The guideline development is based on a comprehensive process involving expert and public consultations and literature reviews, also including a Cochrane review40 for the depression guidelines on the use of antidepressants for depression in physically ill people.

The EPCRC cachexia work team has produced new European, clinical guidelines on the management of cancer cachexia in advanced cancer patients, with a focus on refractory cachexia.38 This has been a comprehensive process involving expert and public consultations and literature reviews. For all of these guidelines, patient-friendly summaries (leaflets) in five European languages can be downloaded from the EPCRC website.38

The European Commission’s Executive Agency for the Public Health Program (PHEA) received funding for the development of mechanisms for reporting and analysis of health issues and producing public health reports, focusing on best practices and models in palliative care—that is, the provision of specialist versus basic palliative care as dependent and integrated approaches.3 Subsequent to the funding of the EPCRC project, two other initiatives, the PRISMA41 (reflecting the positive diversities of European priorities for research and measurement in end-of-life care) and a European collaboration to optimize research for the care of cancer patients in the last days of life (OPCARE9)42 were also recently funded by the European Union.37 More recently the ATOME project (Access to Opioid Medication in Europe),43 the IMPACT44 and the EUROIMPACT45 projects received funding from the seventh Framework Program for Research of the European Union,39 focusing on opioid availability, improving dementia and cancer palliative care, and developing a multidisciplinary and intersectorial educational research framework in Europe aimed at monitoring and improving palliative care respectively. Another newly financed project, the Integrated Palliative Care—InSup-c46 focuses on the best way to deliver care to people who have advanced cancer, heart failure, or lung disease toward the end of life.

An ultimate goal is to ensure that palliative care research is represented at national and international palliative care congresses. For Europe as a whole, the promotion and financing of palliative care research within the EU framework represents a major step forward.

Criteria for excellence

At present, there is no uniform European consensus regarding the minimum set of indicators that constitutes a center of excellence in palliative care. Although this is a universal problem that also exists outside Europe, a major challenge is related to the agreement on a definition of these criteria. Furthermore, the conceptual definitions of home care and hospice differ across countries and cultures. The latter has negative connotations in southern European cultures,16 and it is obvious that the definition of hospice care meets with much less consensus than the definition of palliative care. There seem to be fundamental differences in the understanding of hospice care, which probably reflect the different ways that hospices are used in western Europe.33

The national models for delivery of palliative care are not identical, and they are not equally prioritized in each country, either economically or politically. In Norway, the health authorities launched a national palliative care program with clinical guidelines in 2008, which was recently updated (2012).47 Also, the Norwegian Directorate of Health has started a development project of formalizing palliative medicine as an accredited medical specialty. The intention is to stimulate recruitment and secure a more universal national palliative care service.

Because of the relatively large economic, political, and cultural diversities across Europe, it might not be feasible to aim for the implementation of one particular model of excellence everywhere. In 2003, the European Society for Medical Oncology (ESMO) initiated an accreditation program, the ESMO Designated Centres of Integrated Oncology and Palliative Care, in which cancer centers can receive special recognition for achieving a high standard of integration of medical oncology and palliative care.48 This means that the centers must provide comprehensive services in supportive and palliative care as part of their routine care, but other criteria also apply, such as expert medical and nursing care in the evaluation and relief of pain and other physical symptoms, continuity of care, expert care in relief of psychological and existential distress, emergency care of inadequately relieved symptoms, clinical education, and participation in basic or clinical research.48 Although many centers do not fulfill all of these criteria due to various reasons, there are nevertheless certain key criteria that can be used in all models of palliative care to ensure the sufficient comprehensive provision and quality of care. These criteria include the following:

Delivery and Content of Care

  • Inpatient professional palliative care services in PCUs or hospices

  • Outpatient palliative care services or home care, organized by the PCU or through the established healthcare services

  • Size of the unit and patient case mix

  • Multidisciplinary approach

  • Consultation services

  • A systematic approach to symptom assessment and classification, and common indicators for the quality of care

Education and Advanced Training

  • Basic levels, medical/nursing schools

  • Continuing medical/nursing education

  • Palliative medicine specialists, palliative care nurse specialists

  • University chairs of palliative medicine

  • Systematic training of clinicians and clinical scientists in palliative care research

  • Opportunities for part-time work assignments, 50/50 clinical work and research

Research

  • Continuous evaluation of the quality of palliative care services (structure, process, delivery)

  • Consensus of indicators for the classification and assessment of subjective patient-reported outcomes

  • Evidence-based knowledge to provide guidelines for treatment

  • National and international multicenter studies, and the development of formal research collaboratives

  • Translational research to close the gap between basic sciences and clinical practice

  • National and international networking, such as the EAPC RN and other formal structures

Integration of Palliative Medicine and Care in Public Healthcare

  • Policy, advocacy, lobbying

  • Earmarked funding to palliative care research on a national level, possibly similar to the British or Canadian models, preferably with incentives for national and international collaboration

At the University Hospital in Trondheim, Norway, a fully integrated model has been developed during the last decade (Figure 74.4). The program started with the development of a 12-bed inpatient unit (acute palliative care) and an outpatient program, including a consultation service at the various wards and departments at the University Hospital. The staff composition is interdisciplinary with highly trained nurses and doctors. A close collaboration with the municipality of Trondheim has been organized as an integrated part of the palliative care program. This has resulted in establishment of designated PCUs or beds in several nursing homes, combined with specialist palliative care service in patients’ homes in collaboration with the general practitioners (GPs) and home-care nursing services in the community. The outpatient clinics, both for cancer patients and for chronic nonmalignant pain, and the palliative medicine unit have succeeded in joining forces regarding their clinical, educational, and research-related activities.


Figure 74.4 The Trondheim organizational model for palliative care.

Figure 74.4 The Trondheim organizational model for palliative care.

The European Association of Palliative Care activities: an example of international networking

European Association of Palliative Care initiatives

The EAPC serves as a catalyst for international collaboration and networking with respect to distribution and delivery of care, clinical collaborative work, and research. As previously mentioned, there is a steadily growing number of activities, task forces (Figure 74.3), and individual and collective members (Figure 74.2).

An important priority of the EAPC during the last decade has been the development of high-quality palliative care in Eastern Europe. The EAPC coordination center at Stockholm’s Sjukhem Foundation in Stockholm, Sweden, was established in 2002,49 supported by the Open Society Institute.29 The major aims of the EAPC East project, which was established as a task force in 2001, were to support and improve the development of palliative care and to coordinate the activities and initiatives in eastern Europe. In most of these countries, the care is unevenly distributed and poorly developed, and drugs such as opioids are not readily accessible everywhere.50,51 For example, a recent report covering 21 eastern European and 20 western European countries shows that many patients do not receive adequate relief of pain because of excessive regulatory restrictions on the availability and accessibility of opioids,52 previously demonstrated by huge variation of access to medication depending on geographical area in Albania53 and a lack of certain formulas in Romania.54 Some national laws and regulations prohibit the prescription of opioids for use outside of the hospitals55 and only allow treatment for a limited period.5052,53,54,55,56 Through international networks and collaboration with people and organizations interested in and working with palliative care in eastern Europe, palliative care is put on the health policy agenda, a prerequisite for funding and change of practice. The first peak in this work was in the fall of 2004. Media campaigns, seminars, and discussions occurred in order to disseminate the recommendations from the Council of Europe documents, that “legislation should make opioids and other drugs accessible in a range of formulations and dosages for medical use,” as well as the recommendations from EAPC and national organizations.

Unlike the United States, the EU is not a federation, but an assembly of countries (“member states”) that remain independent sovereign nations. However, some of their decision-making power is delegated to shared institutions they have created, so that decisions on specific matters of joint interest can be made democratically at European level, for example, the European Council.57 This makes consensus-based policy statements and collaborative efforts from professional organizations important assets in order to influence the policymaking. One example is the Budapest Commitments,58 an initiative launched in 2007 in which the EAPC joined forces with the International Association for Hospice and Palliative Care (IAHPC)59 and the Worldwide Palliative Care Alliance (WPCA)60 to initiate a framework for palliative care development. The goal was to use a framework to help individuals and national palliative care organizations to identify and establish development goals in five major areas—drug availability, policy, education, quality, and research—by choosing commitments from a list of proposals or drafting their own among these five areas.61

More recently, another initiative was launched in collaboration with the IAHPC59 and the Human Rights Watch (HRW)62: the Lisbon challenge,63 emphasizing the access to adequate palliative care as a human right. The four main objectives challenge the national governments to check how well they perform in relation to (1) ensuring access to essential medicines, including opioid medications, to all who need them; (2) developing health policies that address the needs of patients with life-limiting or terminal illnesses; (3) ensuring that healthcare workers receive adequate training on palliative care and pain management at undergraduate levels; and (4) ensuring, through the development of structures and processes, the implementation of palliative care. Partner support is provided from leading international organizations, such as the Council of Europe, the World Health Association, the World Medical Association, and the International Council of Nurses, an important strategy for promoting palliative care throughout countries and regions in Europe.

The Prague Charter (palliative care as a human right)64 represents a step related to the Lisbon challenge. This declaration urges governments to relieve suffering and recognize palliative care as a human right, with the intention of improving access to palliative care worldwide. The petition can be signed directly on the Internet,65 thereby supporting the initiative.

Today, information is disseminated through a variety of channels. The official EAPC website, www.eapcnet.eu,3 is an important communication tool for members and nonmembers, providing continuously updated information on activities, conferences, publications, and reports. Also, social media like Twitter and Facebook are gaining increasing importance in spreading news and promoting engagement palliative care worldwide. The two journals of the EAPC, the European Journal of Palliative Care and the peer-reviewed Palliative Medicine, with a steadily increasing impact factor (2.6 in 2012), have gained wide attention among a variety of researchers, clinicians, and other health professionals working in palliative care.

The EAPC RN is a daughter organization of the EAPC.66 The EAPC RN was founded in 1996, aiming to conduct pan-European prospective studies, based on the fact that collaborative research is a key issue for palliative care. A cross-sectional survey of palliative care in Europe was organized by the EAPC RN, covering 143 centers in 21 countries.67 An important result from this study, besides the clinical data, was the great potential for establishing palliative care research networks across different countries and cultures. The first two large research projects that were initiated—the European Pharmacogenetic study (EPOS)68 and PAT-C,69 the precursor of the EPCRC project38—were also important in order to consolidate the fruitful environment within European palliative care research.

The EAPC RN has organized several expert working groups on topical issues in palliative care for which common European positions or recommendations are needed, for example, symptom assessment and management,69,70,71,72,73,74,75,76,77,78 prognostication,79 consensus-based guidelines,4,5 and so forth.

The EAPC RN extends an open invitation to all healthcare professionals to take part in developing a platform for this palliative care research within the EAPC RN. The network offers an established structure for collaborative research as well as an infrastructure for taking care of data handling, organization of studies, and so forth.66

Recently, the Junior International Forum (JIF)80,81 was established adjacent to the EAPC RN, with the intention of fostering international collaboration and providing a meeting place for PhD and postdoctoral students and other young scientists in the field of palliative care. The first meeting was held during the fifth EAPC Research Forum in Norway, 2008.

Two major activities by the EAPC are the EAPC Forum on Research in Palliative Care and the EAPC congresses. These are each held every other year and hosted by different European countries. The 7th Research Forum was organized in Trondheim, Norway, in 2012. There were 1172 participants from 49 countries compared with 342 participants representing 35 nations in the first Forum in Berlin in 2000. The last EAPC congress in Prague, Czech Republic, in 2013 attracted 2295 participants from 87 countries, and the 1092 submitted abstracts represented 72 different countries, showing a steady increase of participating nations.

European Association of Palliative Care projects, taskforces, and white papers

As previously mentioned, and depicted in Figure 74.3, the EAPC has initiated several task forces, which have a limited time scope and are constituted with specific missions. Some of these also function as expert groups or advising bodies to the EAPC board of directors. The EAPC task force on palliative care and euthanasia is one example and represents the official EAPC position on these issues.82 The European perspective includes quite different laws on euthanasia and patient assisted suicide, and most states uphold a ban. The major aim of this task force was to revise the EAPC’s statement and judgment of palliative care and euthanasia. The work was started in 2001 and ended in 2005, created much debate, and resulted in a position paper published in 200977 and guidelines in several European languages.

More people are expected to be in need of palliative care; for example, in high-income countries, 69%–82% of those who die need palliative care.83 This means that in the years to come, provision of adequate palliative care will increasingly be provided also outside the hospital settings and to a larger extent in primary care. This represents a major challenge in relation to education and training. Although some aspects of education and training are discipline specific, there are clearly elements of palliative care training and core competencies for practice that are relevant to all professional groups involved in palliative care. The recent EAPC white paper on core competencies presents expert opinion on global core competencies for professional practice, irrespective of discipline, and is intended as a resource for practitioners and educators alike.84,85

One of the reasons for the increased demand for palliative care is the changing practice represented by an extension of palliative care to more noncancer conditions.83 Dementia is one of these conditions, and the EAPC white paper on palliative care in dementia6 provides a model of dementia progression, suggests prioritizing of care goals, and defines optimal palliative care grouped in domains with a total of 57 recommendations for practice, policy, and research.

Patient-reported outcome measurement plays an increasingly important role in palliative care, being used to assess patients, evaluate the effectiveness of interventions, or audit existing services.1 Several instruments exist for a variety of outcome measures in palliative care. In order to improve outcome measurement in palliative care, a taskforce on patient-reported outcome measurements in palliative care was initiated in 2011.86

Delivery of palliative care models

As pointed out earlier in this chapter, the organization and delivery of palliative care services in Europe is diverse and unevenly distributed. A German survey from the beginning of the decade, for example, showed not only that the quality and availability of palliative care beds had developed rapidly but also that only a minority of the units surveyed had a ratio of nursing staff to inpatient beds of 1.4:1 or more, as recommended by the German Association for Palliative Medicine.87 A Spanish survey conducted about the same time from region of Catalonia, showed that this region had about 46% of the nation’s palliative care programs but only 15% of the entire Spanish population.88 Since then, a positive development has taken place, as shown in Figure 74.1 and depicted in the EAPC Atlas of Palliative Care,28 although there are still differences across and within countries.

Palliative care is delivered through various channels, and the degree to which it is integrated, coexisting, or separated from the formal healthcare system varies considerably. In many countries, health professionals, as well as volunteers and private, charitable, and religious organizations, in primary care and through general hospitals, carry out much palliative care. In Spain, for example, private organizations are providing home-based palliative care to a substantial number of people, and care is likewise provided through volunteers in countries such as Hungary, Italy, and France. However, there is little tradition for volunteer work as a separate workforce in the Nordic countries. With the increasing knowledge and recognition of the complexity in the symptomatology of incurable diseases, a common model of providing care in Europe has been to concentrate expertise in multiprofessional teams. These teams work in hospitals, inpatient units, hospices, or in the community in direct patient care or acting as consultants. To fully integrate palliative care into the general healthcare system, political guidelines from the healthcare authorities are necessary. In 2001, the Italian National Health Service passed a law saying that palliative care programs should be provided free to patients and families. This built on a previous law on hospice development that was followed by a budget allocation to the regional administrations. Several other European countries, for example, the United Kingdom, France, Norway, and Spain, also have health policy directives on palliative care implementations and delivery of services.

An all-inclusive and comprehensive overview of all European centers is difficult to present. Because the statistical and reporting guidelines vary so much within each country, it is difficult to obtain sufficient documentation for valid comparisons across countries. Also, the basis for making statistical predictions for care needs varies,83 as does the availability of updated uniform and nationwide registries on diagnoses, services, and care delivery. In addition, the field is rapidly developing, which may be taken as a quality criterion in itself! The EAPC Atlas of Palliative Care,28 however, presents a very good overview of the palliative care services on a country-by-country basis, with several maps quantifying, for example, types of PCUs across the European continent (Figure 74.5) and the distribution and existence of home care teams (Figure 74.6).


Figure 74.5 Types of palliative care units.

Figure 74.5 Types of palliative care units.

Source: Adapted with permission, EAPC Atlas of Palliative Care in Europe 2013, reference 28.


Figure 74.6 Professors and curricula in palliative care.

Figure 74.6 Professors and curricula in palliative care.

Source: Adapted with permission, EAPC Atlas of Palliative Care in Europe 2013, reference 28.

Nevertheless, the individual centers within or across nations may adhere to the previously mentioned criteria of excellence in varying degrees. Table 74.2 presents the activities of 18 centers in Europe according to the previously mentioned criteria, based on an e-mail survey conducted by one of the authors of this chapter.

Table 74.2 Description of some European palliative care (PC) centers in relation to certain quality criteria

Country

Name

Palliative care unit (PCU), size, team compositiona

Outpatient unit

Home careb

Patients

Education/training consultation services

Research

Specific activities

Denmark, Copenhagen

Department of Palliative Medicine Bispebjerg Hospital

Acute PCU, 12 beds. Multidisciplinary team: doctors, nurses, social worker, physical and occupational therapists, psychologists, chaplains

Yes

Yes

All cancer patients

  • Collaborating with the medical and nursing schools and the university. Postgraduate/specialist training for nurses and doctors.

  • Consultants in other units and home care

Clinical intervention research and psychosocial research. Multidisciplinary, PhD students

  • Continuous quality monitoring.

  • In charge of establishing a national palliative care quality and research database

Germany, Bonn

Hospital of Bonn and Centre of Palliative Medicine, Malteser Hospital Bonn/ Rhein-Sieg

Acute PCU, 8 beds (in Malteser hospital). Multidisci-plinary team: doctors, nurses, psychologist, physical therapist, social worker, chaplain from hospital

Yes, integrated in Centre of Integrated Oncology (CIO)

Specialist home care team with doctors and nurses (in Malteser hospital)

95% cancer patients

  • Collaborating with the medical and nursing schools and universities. Undergraduate education with lectures and seminars, (20 hours are mandatory), post-graduate 40 hours course, advanced PC course.Involved in development of PC curriculum in Germany.

  • Consultation services for other units and home care, other professionals.

  • Undergraduate education with lectures and seminars, (28 hours are mandatory), post-graduate 40 hours course, advanced PC course. Leadership and train-the-trainer courses

Clinical drug trials, epidemiological studies, qualitative research, case reports, research on outcome and quality assurance and on guideline development. Research on pain assessment. Multidisciplinary

Active in political activities to advance PC, through, for example, media to inform patients, relatives, and medical staff

Germany, Munich,

Department of Palliative Medicine, Munich University Hospital

Acute PCU, 10 beds, multiprofessional team: doctors (oncologists, neurologists, anesthesiologists), nurses, social worker, chaplain, psychologist, physiotherapist, breathing therapist

No, but planned

Yes (specialist palliative home care team)

80% cancer, 20% noncancer (predominantly MND, Parkinson’s, multisystem atrophy

Undergraduate training with lectures and mainly small group seminars (15 students). Postgraduate education center with palliative care courses on different levels for doctors, nurses, pharmacists, social workers, etc.

Research on breathlessness, outcome measurement and complexity, neurological disease, spirituality, pharmacy consultation

National guideline development; palliative care pharmacy consult service; involvement in national and international policy development

Hungary, Budapest

Budapest Hospice House

Acute PCU (Sept. 2004), 10 beds. Multidisciplinary team: doctors, nurses, physical therapist, social worker, psychologist, psychiatrist, bereavement counselor

Yes, pain clinic and psychooncology and bereavement services

Yes

Primarily cancer patients

Continuous PC training of staff, and several courses for other professionals and the public. Accredited 1-week training for nurses. Organizing international courses with other former Eastern European states

New psychooncology research program (2003), focusing on anxiety/depression and distress, first Hungarian protocol on these issues

Italy, Milan

Cure Palliative, Terapia del dolore e Riabilitazione. Fondazione IRCCS Istituto Nazionale dei Tumori

Hospice (10 beds), PC day-hospital (4 beds). Multidisciplinary team: doctors, nurses, social worker, physical therapists, volunteers

Yes

Yes

All cancer patients

Collaborating with postgraduate education for doctors (master’s courses, specialty schools). Pain and PC consulting service for other units

Assessment and treatment strategies for difficult cancer pain: neuropathic, chronic iatrogenic, breakthrough, bone pain, management of end-of-life care. Multidisciplinary, PhD students

EAPC coordinating office located here

Netherlands, Amsterdam

VUmc

Acute PCU (Sept. 2004), 4 beds in close collaboration with hospice, 10 beds for terminally ill. Multidisciplinary

Yes. Multidisciplinary Anesthesiology/pain clinic and palliative oncology clinic

PC team serves as consultants in close collaboration with home care

90% cancer patients

Consultation services and regional courses for professionals

Government-funded research program in PC, public health and extramural medicine, symptom management. PhD students

Partner in Network Palliative Care Amsterdam. Organized a regional Helpdesk with PC help team for professionals

Netherlands, Groningen

UMC Groningen

Acute PCU, 2 beds in Dept. of Internal Medicine. Multidisciplinary team: physicians (medical oncologist, pulmonary oncologist, anesthesiologist, psychiatrist, gastroenterologist, internal medicine), nurse specialists, social worker, home care technology expert, dietitians, chaplain

Yes, integrated in pain clinic and in the department of oncology.

Yes

Majority cancer patients

  • Collaborating with the medical and nursing schools and the university. Postgraduate/specialist training for nurses and physicians.

  • Consultants in other units and home care.

  • Symptom management, transition of care.

  • Multidisciplinary, PhD students.

Partner in Network Palliative Care Groningen Central. Participant in a regional Helpdesk with PC help team for professionals.

Netherlands, Maastricht

MUMC+

  • Acute PCU, two beds in the Oncology unit.

  • Multidisciplinary team: doctors, nurses, social worker, chaplain

Yes,

PC team serves as consultants in close collaboration with home care

85% Cancer patients, 15% noncancer patients

  • Continuous PC education/training for oncologists, nurses and general practitioners.

  • Participation in postgraduate courses for physicians, oncology nurses, others.

Clinical and translational research in neuropathic pain and dyspnea

  • Partner in Network Palliative Care Limburg.

  • “The Palliative Care Formulary”

Netherlands, Nijmegen

UMC St Radboud

PCU in Dept. of Oncology, 5 beds. Multidisciplinary team: doctors, nurses, supported by specialist nurses, psychologist

Yes. Multidisciplinary through the PC team

PC team serves as consultants in close collaboration with home care

Majority cancer patients

Continuous PC education/courses for staff. Consultation services for other units and home care, other professionals

Symptom management, improvement of PC, ethics. Multidisciplinary. PhD students

Netherlands, Rotterdam

Erasmus MC

Acute PCU, 13 beds. Multidisciplinary team: doctors (medical oncologist, neurooncologist, anesthesiologist, psychiatrist), nurse-specialists, social worker, home care technology expert, dieticians, chaplain

No

Program for home care technology in close collaboration with home care institutes

All cancer patients

Continuous PC education/training for oncologists, nurses and general practitioners. Participation in postgraduate courses for physicians, oncology nurses, others. Specific focus on development and implementation of intervention programs

Clinical and epidemiological research: symptom prevalence, development of clinical interventions, end-of-life care and end-of-life decision-making, organizational aspects of PC. Multidisciplinary, PhD students

Partner in Network Palliative Care Rotterdam. A multidisciplinary regional PC team is coordinated for phone consultations

Netherlands, Leiden

Leiden University Medical Centre

  • Multidisciplinary team: doctors (internal medicine/radiation oncology/anesthesiology and GP/geriatric specialist), nurses and nurse specialists, social worker, chaplains

  • Close collaboration with hospice

Yes

No

90% cancer, 10% noncancer

Continuous PC education/courses for staff, oncologists, nurses, and general practitioners. Consultation services for other units and home care, other professionals. Specialist training for residents and nurses

Clinical research: symptom prevalence, development of clinical interventions. Initiation of randomized radiotherapy trials on pain management. Multidisciplinary, PhD students

Active partner in meetings of several national palliative care developments

Norway, Oslo

Avdeling lindrende behandling

Acute PCU, 12 beds, outpatient clinic, ambulant team within the hospital and the local catchment area. Multidisciplinary team: doctors, nurses, social worker, physical therapists, chaplain, dieticians, psychologist

Yes

No

99% cancer patients

Continuous PC education and training for medical students, physicians and nurses in collaboration with the University. Consultants in other units

Link to the University through the Regional Center for Excellence in Palliative Medicine, which holds a chair in palliative medicine. PhD/master’s students

Norway, Trondheim

Seksjon lindrende behandling (SLB)

Acute PCU, 16 beds + up to 16 in a designated nursing home. Multidisciplinary team: doctors, nurses, social workers, physical therapists, dieticians, chaplains

Yes

Yes, as a project from 2013

95% cancer patients

Continuous PC education and training for medical students, physicians, and nurses in collaboration with the University. Regular internal education, courses and training on basic/specialist levels. Consultants in other units, home care and the nursing homes

Close link to the University, chair in palliative medicine. Specific research seminars, high degree of translational research, substantial number of scientific publications on PC every year. Multidisciplinary, several several postdoc/phD and master’s students

Scotland, Edinburgh

Edinburgh Cancer Centre. Edinburgh Cancer Research Centre

No PCU, but access to oncology beds. Multidisciplinary team of consultants, nurses, social worker, with access to physiotherapy, occupational therapy, and chaplaincy

Yes. General, research and complex pain clinics

No. Provided by local hospices

90% cancer and 10% nonmalignant patients

Formal program of education for palliative medicine. Postgraduate MSc in Palliative Care

University Chair of Palliative Medicine. Coordinator of National Research Program, including multicenter RCTs. Several MD and PhD students.

Local links with oncology and hospices. National links through NCRI. EU links through EAPC.

Spain, Barcelona

Institut Català d’Oncologia

Acute PCU, 16 beds. Multidisciplinary team: doctors, nurses, social workers, psychologist, psychiatrist, physical therapist, nutritionist

  • Yes. Difficult cancer pain clinic

  • Collaborative Multiple Myeloma Clinic

  • Collaborative Radiation Oncology Clinic

Yes

All cancer patients

University hospital support team to serve other units. Individually based continuous education and training for staff. Master in PC located on site, doctors/nurses. Pre- and postgraduate training for physicians and nurses in collaboration with the university

Active research department, center-based and multicenter studies. Multidisciplinary research. Two university chairs. Master in PC, and several PhD students

CATPAL (Catalan multicenter cooperative group), 1998, design of studies and trials Grupo de Cuidados Paliativos en el seno de la Red Temática de Investigación Cooperativa en Cáncer (RTICC) OMS Collaborative Centre

Sweden, Stockholm

Palliativt Sentrum, Stockholms Sjukhem (SSH)

Acute PCU, 36 beds (20 + 16). Multidisciplinary team: specialist doctors in oncology, geriatrics, pain, neurology, internal medicine, hematology nurses, social workers, physical therapists, occupational therapists, chaplains

No

Yes

90% cancer patients

Continuous PC education and training for medical students, physicians, and nurses in collaboration with the Karolinska Intitutet, University Hospital. Several medical training positions. Educational unit. Continuous education and courses for team members at the unit and other healthcare professionals. Consultation services for other units and acute hospitals

Collaborating with the University, chair in palliative medicine and nursing. Specific research seminars. Substantial no. of scientific publications on PC every year. Multidisciplinary research, several PhD students. Translational research and development projects. International collaboration. A Web-based multicenter research network including the research tool PANIS. Starting clinical drug trials. Research based on the national quality registry in palliative care

  • The Swedish Palliative Network (SPN), a Web-based information service developed and based here

  • Executive office for the Swedish National Swedish National Council for Palliative Care, NRPV

UK Lancaster,

St Johns Hospice and Lancaster University

Hospital and community teams, full multidisciplinary membership

Yes

Yes

Majority cancer patients (85%), but increasing number of other diagnoses

Regular undergraduate teaching and postgraduate training for specialist doctors, regional teaching program for clinical nurse specialists and general practitioners

Clinical studies on pain, end-of-life care decisions. Lead unit for regional network of research active hospices

UK, Leeds

Academic Unit of Palliative Care, University of Leeds

Hospital and community teams, full multidisciplinary membership

Yes

Yes

Majority cancer patients (85%), but increasing number of other diagnoses

Regular undergraduate teaching and postgraduate training for specialist doctors, regional teaching program for clinical nurse specialists and general practitioners

Clinical studies on pain, end-of-life care decisions. Lead unit for regional network of research active hospices

Delivery and content of care

Comprehensive care

Most studies on delivery of care uncover the importance that patients and families place on receiving a well-organized package of care.86 Quite often these professional teams take care of the most advanced patients with complex symptomatology and rapidly changing needs. Despite this, there is evidence that such specialized teams are effective in relieving distressing symptoms and can improve the quality of life of the patients and families toward the end of life.89,90 Research studies concerning patient preferences in relation to end-of-life care show that the majority of respondents (43%–84%) would prefer to die at home.91,92,93 However, preferences may change as the disease progresses.92 Scandinavian trials on different ways of coordinating palliative care services across the different settings of hospital, home, and community have found that a higher proportion of people can be helped to remain and to die at home as they wish to, and to spend less time in nursing homes.94

Palliative care models encompass the provision of comprehensive care, and most centers presented in Table 74.2 also have outpatient/daycare facilities and home care services. However, there is no universal way of delivering palliative care, because the national health services are organized and reimbursed for this work in different ways. In many PCUs, the hospital palliative care teams provide direct patient care after discharge (see Table 74.2). In certain parts of Spain, private organizations have a car service to take palliative experts from the hospital to the patients’ homes. In Norway, there was no tradition for physicians to leave the hospital to take care of the patients at home. The financial system was prohibitive of such activities, with no reimbursement for extramural activities. Through intense and evidence-based lobbying, however, local politicians were convinced that the hospitals, not the individual physicians, should be reimbursed for this work. Thus, the Trondheim model was implemented in one region, enabling more people to stay in their homes.94 In the Netherlands, on the other hand, the home care services are generally well functioning, and the hospital palliative care teams basically serve as a facilitator and consultant to ease the transition between the PCU and the home. A Dutch evaluation showed that the team served the needs of the professional caregivers in a variety of settings and that most consultations concerned physical and pharmacological problems.95

Some of the PCUs shown in Table 74.2 are closely collaborating with nursing homes, for example, in the Netherlands and Norway, as recommended by Norwegian governmental committees.96 Extending intensive services to sites of more traditional care represents a challenge on the political, personal, organizational, economical, and educational arenas. Hospitals and nursing homes often have different budgets,4 and cost containment might be difficult when expensive drugs, fluids, and transfusions become part of daily care. This also increases the workload for the PCU care teams with respect to direct out-of-hospital patient care, extended consultation services, and specifically designed educational programs at basic and advanced levels.

Multidisciplinary approach and consultation services

The increasing complexity of the tasks involved in palliative care makes it clear that multidisciplinary teams are necessary for the identification and interventions needed to meet the rapidly changing needs of patients and families. Professionals in specialist palliative care settings may form relatively permanent teams, as is the case in most of the European centers presented in Table 74.2. Physicians, nurses, physical therapists, and social workers are included in most teams, supplemented by psychologists, psychiatrists, dietitians, bereavement counselors, chaplains, and others. Depending on the context of care, the individual team professionals also may serve as expert consultants for palliative patients in other hospital units, the home-care service, and nursing homes. The situation may also be the opposite, with palliative care teams seeking specialist services in disciplines such as neurology, anesthesiology, and pharmacology. Continuity of care across the PCU/hospice/home-care interface is more easily achieved through a multidisciplinary team composition if the responsibilities and strategies for the care plan are agreed on. Again, the earlier the patients are seen with this holistic multiprofessional approach, the more adequately their needs might be met. Another major advantage of the multidisciplinary teamwork is the aspect of bereavement care of staff in cases with bereavement overload, an area traditionally better managed by professions other than physicians. The increasing number of professions involved in palliative care is directly reflected in the membership of palliative care organizations. The German Association for Palliative Medicine was founded by 17 physicians in 1994. There were 50% physicians and 40% nurses among the 1100 members in 2003. At the EAPC 2013 Congress in Prague, Czech Republic, around 50% of the 1092 submitted abstracts were from physicians and about 10% from nurses. Altogether, the abstract submitters represented more than 25 professions in contrast to almost 100% of the abstracts coming from physicians at the first Research Forum in 2000.3

As previously mentioned in this chapter, we think that palliative care should become more integrated in the main healthcare system in the future, and that basic and intermediate levels of palliative care should be delivered by all healthcare providers in different sectors. An important implication however, is the need to increase the general and specific competence, among all professions, with specific emphasis on doctors and nurses. There may also be a need to reorganize the work and responsibilities of today’s specialized multidisciplinary teams, in order to disseminate the advanced knowledge.

Education and advanced training

Rapid progress in the growth of professionals interested in palliative care began from 1995/96 and onward. This is evidenced by the steadily increasing number of members in the EAPC, from around 8300 in 1996 to more than 50,000 in 2008, the increasing number of collective member associations (Figure 74.2), and the fact that there are now 38 national palliative care associations in Europe.28

As previously mentioned, the increased need for palliative care and the many channels of delivery represent a major challenge in relation to professional education and the core competencies that are necessary to deliver high quality care. The EAPC white paper on palliative care education84,85 suggests a three-tier framework to prepare practitioners academically, consisting of education on the principles and practices of palliative care related to the healthcare professionals’ initial training: (1) the palliative care approach, toward an integration of palliative care methods in general care settings; (2) general palliative care that is intended for professionals frequently involved with palliative care patients; and (3) specialist palliative care. The paper is a strong argument for education, institutional collaboration, shared learning, and curricula design in line with Frenk et al.97

However, the link between academics and palliative care has only progressed slowly by establishing palliative medicine as a formal part of the medical programs at a university level.15 A review from 2006 showed that academic positions in this field were found in 10 European countries (Belgium, United Kingdom, Germany, Finland, Greece, Norway, Poland, Sweden, Netherlands, Italy).16 This review also showed that teaching in palliative medicine was on the curricula for medical students in the following 10 countries: Germany, Norway, Sweden, Finland, France, Greece, United Kingdom, Poland, Spain, and Hungary.16 Some new programs incorporating palliative care have been developed at various undergraduate or graduate curricula in Croatia, Romania, Turkey, Lithuania, and Switzerland. University affiliations also vary throughout Europe, as shown in Figure 74.6, showing the distributions of professors in palliative care.

The review reported that formal training as palliative medicine specialists was less common and only existed in United Kingdom, Romania, Poland, Germany, Norway, Sweden, Denmark, Iceland, and Finland,16 with specialized palliative textbooks in indigenous languages in 12 countries. Fortunately, the situation has improved somewhat since this review, and according to the EAPC Atlas, 13 countries have specialist programs in palliative medicine, while eight have a certification in process.28

The situation is basically the same for the nursing curricula, with few countries having palliative care as formal parts of the graduate or postgraduate levels or as an accredited specialization. The United Kingdom has been in the forefront regarding palliative care nursing; all basic nurse education (advanced diploma level) includes teaching about core palliative care knowledge and skills. At a post-basic qualification level, there are approximately 10 university-based courses offering master’s-level courses in palliative care and psychosocial palliative care. These courses are usually taught in a multidisciplinary context. According to Larkin,98the United Kingdom remains a beacon of palliative care learning, offering not only theoretical but clinical learning. These opportunities are less readily available in many European countries and are essential to the translation of theory to practice.

The recent extension of the EU has led to a more flexible employment market, with less restriction on crossing borders for work. A priority of the EU to facilitate this flexibility is the process toward more universal educational programs. Revising the different medical school curricula and the postgraduate specialist education programs to make them more standardized is an example of this.

Palliative care research

Palliative care had its origin in the hospice movement emerging in the United Kingdom in the late 1960s. For quite some time, it was erroneously believed that research had no priority in this context. The development of palliative care in most countries in the 1960s and 1970s took place outside of the mainstream healthcare system and outside academic institutions. It was primarily directed toward developing different clinical programs in hospitals, hospices, and consultant team activities.37 However, many of the European stakeholders in palliative care at the time, Vittorio Ventafridda (Italy), Cicely Saunders, Geoffrey Hanks, and Robert Twycross (UK), as well as Kathey Fowley in the United States were conducting high-quality palliative care research. This research makes it clear that palliative care ideology is based not “only on compassion but equally on skills preferably founded on scientific evidence.”99,100

The need for research

Research is indispensable for the further development and improvement of palliative medicine and nursing and is necessary to increase the evidence base for practice.15,101,102 We have witnessed an increased interest and development in interdisciplinary palliative care research during the last decade. For example, within the United Kingdom there is recognition of the importance of palliative care nursing research and involvement of nurses in multidisciplinary research teams. In addition, there is evidence of the growth in scholarship and publication of research from a bibliometric analysis103 although there remain concerns about the number of small-scale studies in many palliative care research studies, for example, on symptom assessment.104,105 Although nursing in general makes a very small contribution to UK National Health Service (NHS) research in comparison to the number of nurses involved in delivering care, palliative care represents one area of research that nurses have readily engaged with.105 The steadily increasing number of international collaborative efforts in clinical and translational research in palliative care and advanced cancer are promising, yet there are many challenges ahead.106,107

Research is poorly embedded in the clinical work with patients in advanced stages of disease. This may partly result from the traditional focus on compassion and the perceptions of the healthcare providers that patients should not be bothered with interventions or self-report questionnaires for assessment of symptoms, the so-called “gate-keeping.” Despite reports that the lack of standardized symptom assessment prohibits optimal symptom management,107,108,109,110 that cancer patients do not receive adequate symptom management or palliative care during the course of their illness,74,70,108,109,110,111,112,113 and that collection of patient-reported outcomes positively influences the doctor-patient communication and is endorsed by patients,114,115,116,117 systematic, standardized assessment of symptoms as a step toward better pain and symptom management has continued to have low priority in routine clinical activity.15,98 Furthermore, a significant proportion of the palliative care research, maybe in relation to nursing in particular, has focused on examining the prevalence of frequent symptoms in cancer patients with advanced disease. It is well known that patients with advanced cancer experience multiple symptoms at the time67,109 with studies reporting a median of 7.1 symptoms (range 0–12) for outpatients, 7.9 (range 1–13) for inpatients, or even higher.111,118,119,120,121 However, prevalence data differs greatly across studies, which is due to a number of factors. Three of the most important are listed here:

  1. 1. There is no common understanding of how to describe and characterize a palliative care population, including which variables to use on a detailed level.122,123,124

  2. 2. It is generally agreed that the information needs to be elicited directly from the patient whenever possible,70,104,107,125 but this is not systematically adhered to. The use of subjective assessments, however, accentuates the importance of using a standardized assessment system to validly describe, quantify, monitor, and compare symptoms at a given point or over time,107,126 a work that has gained wide attention within the palliative care research community over the past few years resulting in papers with specific recommendations.5,8,78,107,126,127

  3. 3. Use of different research methods has contributed to the diverging results across studies. Most prevalence studies based on self-report of symptoms are cross-sectional studies in palliative care or advanced cancer patients with relatively small samples similar to other clinical studies in palliative care.128,129

Although there are many obstacles to the prioritization of research in palliative care—methodological, clinical, attitudinal, and ethical—these problems can be overcome. Based on experience, most patients are willing to participate in various types of palliative care research, including randomized trials on, for example, the impact of palliative care services,130,131 evaluation of pain programs,132 palliative radiotherapy,133 and randomized intervention studies on physical training.134,135 However, a recent study by Stone et al.136 demonstrated that in a carefully planned, noninterventional study with rather simple assessments less than one-tenth of the patients admitted to the relevant units were included, due to many different reasons. The main implications from this are that the study results may reflect the situation for a minor group of the patients only, that it raises concerns about the generalizability of findings and concern that little is known about the patients who did not participate, once again a reminder of the need to characterize the study sample in a standardized manner.

Funding still remains a major obstacle for research. Despite the fact that about 50% of cancer patients eventually die from their disease, less than 0.05% of funding goes to research in palliative care. In the best-case scenario, only 0.18% of the oncology research budget is invested in palliative care, relative to 0.9% in the United States.137 Nevertheless, Canadian and British national programs have funded the establishment of long-lasting, multidisciplinary groups covering a broad spectrum of palliative care research138 (Table 74.3). Because a sound body of scientific research increases the chances of receiving funding for research projects, it is important that national and international research collaboratives be able to rely on predictable and sustainable funding over time.

Table 74.3 Examples of basic and clinical research topics for multidisciplinary research

Areas

Content—some examples

Biomedical—Basic

Pain, cachexia, anorexia, fatigue

Biomedical—Basic and clinical

  • Mechanisms of drug actions: Interindividual variability—adverse effects

  • Pharmacokinetics—the elderly

Biomedical—Clinical

  • Controlled clinical trials

  • Symptom control/medical interventions

Psychological—Clinical

  • Classification and assessment of pain

  • Prognostication of pain relief

  • Classification and assessment of cachexia

  • Classification and assessment of anxiety/depression

  • Cognitive function (in palliative care)

Sociological

  • Family

  • Bereavement

  • Areas for delivery of care

Healthcare provision

  • Standards for palliative care

  • Consensus on a minimum set of indicators present in a center of excellence in palliative care

  • Quality assurance

Philosophical

Euthanasia/patient assisted suicide

Despite the difficulties involved in palliative care research, there is general consensus that the benefits of conducting research outweigh the many clinical and ethical challenges. The future looks bright, however, as evidenced in a recent EAPC European survey, displaying great enthusiasm for research in the palliative care community across Europe.28

Evidence-based medicine and palliative care

A definition of evidence-based medicine (EBM) states that it is the conscientious, explicit, judicial use of the best available evidence in order to offer the patient the most optimal individual care.139 Thus, retrieving and applying the best available evidence is important to every clinician in the diagnostic workup and treatment of patients.140 There are no contradictions between the philosophy of palliative care and EBM, although this debate has been going on for decades.

Many of the decisions made in palliative care are based on inferior quality studies, clinical experience, or extrapolation from studies performed in other populations, as seen, for example, in pain management. The need for EBM in palliative care is evident. Treatment of patients with a complex pathophysiology depends on research that focuses on the specific patient population and their problems.

There are at present two major areas in palliative care research that deserve particular attention. The first is to work toward achieving consensus on how to assess and classify the most prevalent symptoms experienced by patients in advanced stages of cancer.37,107 Recent reviews have shown that more than 80 different assessment tools were used to measure pain,126 and that the development of new tools is a continuously ongoing process without a defined rationale for doing so.104,127 Furthermore, agreed on definitions are of the utmost importance for making comparisons across studies, providing a valid basis for drawing conclusions about selection of medication or other treatment options. As already pointed out, it is a major problem in clinical palliative care trials that study populations vary considerably in several characteristics associated with the symptom being studied; this is also the case in randomized controlled trials.124,141 Stringent definitions of patient characteristics and observations are required to identify to which class or subclass the patient belongs. Agreement on a minimum set of characteristics for a palliative care population is necessary to increase the evidence base of research.142 Currently an International Delphi Process has been conducted to achieve consensus on a set of basic medical and sociodemographic variables for use in clinical trials in palliative care—The EAPC Basic Dataset with a multicenter study being underway to pilot the dataset.143 Other areas that need more in-depth studies are related to cancer and noncancer pain and symptoms, barriers to accessing care, and differences in the social, psychological, cultural, and spiritual aspects of palliative care from the point of patients, relatives, and caregivers (Table 74.3). One example is related to the fact that most patients in palliative care are elderly. This is in contrast to most studies in mainstream oncology, internal medicine, and even in pain treatment, where the upper age limit often is 70 to 75 years. The validity of extrapolating data from these age groups into older populations is questionable, and the need for appropriate research programs in the elderly is warranted,144 as acknowledged by the IMPACT project44 among others.

Research collaboration

In palliative care research, national or international multicenter collaborative studies are usually prerequisites for obtaining sufficiently large samples, which in turn makes it necessary to consolidate collaboratives in clinical research.106,107 The way of doing this within the EAPC RN has been successful, and has led to several ongoing projects in the area of clinical palliative care, and as already mentioned, funding from the European Community; these are important steps in the right direction to foster international collaboration.

To succeed in achieving consensus with respect to assessment and classification of symptoms and on how to define a palliative care population, a systematic, stepwise approach in a multiprofessional and international collaborative composed of clinicians, researchers, and basic scientists is necessary. An example of this is the stepwise systematic work of the EPCRC38 toward a better method for symptom assessment, as shown in Box 74.1.107 In relation to pain, the overall goal of the ECPCR was to develop a computer-based symptom assessment tool that is both for and by the patient and the clinician, with a software content that is based on international consensus and is applicable for clinical work and research with a high degree of user friendliness.

Source: Adapted from Kaasa et al. (2008), reference 107.

Computers used interactively have the potential to process, report, and communicate results reliably, efficiently, and cost-effectively between people. The use of electronic devices for symptom assessment offers several benefits compared with the traditional paper and pencil method. These include advantages with respect to data collection and storage, instant calculation and immediate presentation of scores, data quality, and tracking of symptoms over time. Rapid transfer of results may also facilitate follow-up of patients outside hospitals. Moreover, computerized assessment may be targeted to the individual if programmed to automatically select or skip questions based on the patient’s previous answers, thereby reducing the respondent burden. Such processes may also allow tailor information to be provided to patients and their caregivers. Computerized versions of frequently used assessment tools for patient-reported outcomes such as the SF-36145 have been developed for use with different digital devices and platforms, among others by the QualityMetric group,146 and the PROMIS system147 and for the EORTC QLQ-C30.148,149 To develop the appropriate and user-friendly software, the EPCRC placed great emphasis on design, input, and review by patients and clinicians during the development process meetings, steps 1 and 5 (Box 74.1), and during the data collection process, steps 2 and 7.

As part of the EPCRC project, a clinical study testing a computerized symptom assessment tool; the EPCRC-CSA (European Palliative Care Research Collaborative—Computerized Symptom Assessment study) was conducted in 17 centers in eight countries between 2007 and 2009.38 All patient- and clinician-reported data were directly entered on touch-screen laptop computers, providing 1017 records from patients with incurable metastatic or locally advanced cancer for analyses.150 The entire assessment was completed by 95% of the patients, but lower performance status reduced compliance and increased need for assistance. More than 50% preferred computerized assessment to the paper and pencil version, regardless of prior experience with computers. The promising results from this study have led to new projects related to computerized symptom assessment—one that is primarily focusing on a computerized pain body map151 and another that combines preconsultation systematic symptom assessment on iPads with a support system for clinical decision-making.

The European way to promote research

To further develop and improve the assessment and classification of cancer pain in general, the initiatives taken within the European and international palliative care community should be continued. Many of the European centers presented in Table 74.2 were engaged in research activities on various levels. To successfully integrate multidisciplinary research in a palliative care program, certain criteria have to be accomplished:

  • Professional leadership

  • Agreement on and promotion of a clear strategy and research agenda

  • Parallel development of clinic and research

  • An infrastructure that ensures interaction with scientists not working in the palliative field

  • Translational research

  • Multicenter national and international cooperation

  • Research programs at all levels: undergraduate, PhD students, postdoctoral, and researchers

  • Continuous application for funding at all levels

  • Dissemination of results

  • Leading journals

  • Conferences

  • Involvement of the public

The former pain and palliation research group in Trondheim, Norway,101 is an example of a multiprofessional group that was active in international collaborative research from the start. The main research areas—pharmacogenetics, genetic variability related to pain control, pain management, subjective symptom assessment, development and use of computer technology for symptom reporting, physical function, ethical issues, communication, and symptom palliation—were subsequently carried forward into the European Palliative Care Research Centre (PRC)36 based at the Faculty of Medicine and Trondheim University Hospital in Norway. The PRC was established in 2009 with recommendations and support from the EAPC,3 the Norwegian Cancer Society, and other international bodies such as the Open Society Foundations in the United States and the Floriani Foundation in Italy. The PRC coordinates groups and individual researchers across Europe along with researchers in North America and Australia, and consists of 13 core collaborating centers. The PRC coordinates and participates in a variety of studies, both national and international. An important aim of the work within the PRC is to organize large international multicenter studies, and from 2012 and onward the recruitment of patients has started or is in the pipeline for several studies.36 Some of these studies are prospective trials following the disease trajectory, symptom development, and treatment effects and side effects for a long period of time. On example is the European Palliative Care Cancer Symptom study (EPCCS) that is being conducted in 30 centers in 12 countries. Other studies employ a randomized controlled study design and have a close collaboration with basic scientists focusing on different biomarkes related to the primary study outcomes. These studies primarily focus on specific symptoms such as metastatic bone pain, the Palliative Radiotherapy of Bone Metastases Study; cachexia, the MENAC study (Multimodal Exercise/Nutrition/Anti-inflammatory treatment for Cachexia); and different approaches to pain relief: patient-controlled nasal fentanyl versus oral morphine and the TVT-study examining a two-step versus three-step approach to cancer pain relief.152

The PRC aims to improve the knowledge about palliative care among all health professionals. To increase the scientific competence, a biomedical-focused international PhD program in palliative care has been established by the PRC. The program is formally established at Norwegian University of Science and Technology, but all core collaborating institutions contribute to the program153 Several PhD students from many of the EU-funded research programs such as the IMPACT44 and EUROIMPACT45 are currently pursuing their degrees, with parts of their study being an exchange between Norway and other international institutions, such as the Cancer Institute in Milan, the Dutch university hospitals, and King’s College in the UK.

The challenges

Although palliative care in Europe has undergone a remarkable development from its start in the 1960s and into the second decade of a new millennium, there are still challenges ahead. As we have demonstrated in this chapter, there are still major differences within Europe, on the social, political, financial, and developmental levels, all of which impact on the distribution, delivery, and access to palliative care. One problem relevant to the collection of survey data on palliative care is that there is no clear definition of the minimum number or set of indicators characterizing a palliative care program, a hospice, or a PCU in a nursing home. To be able to describe and compare programs across countries, it is urgent to agree on minimum criteria for developing a palliative care program at various levels of the healthcare system.

Nevertheless, the challenges appear to be universal. The first is related to the total integration of palliative care into the general healthcare system both in the inpatient and outpatient sector and the policy implications of such integration. This would include education and specialist training at basic and advanced levels through universities and medical associations and a multidisciplinary approach. In addition, special national and EU research programs in palliative care have started on the road of evidence-based palliative medicine. Striving for these goals is evidence-based practice with compassion—the cornerstone in the professional encounter with patients.

Acknowledgments

The following persons have contributed specific information for this chapter:

  • RG Helgås, Trondheim, Norway

  • S Lindström, Stockholm, Sweden

  • J Porta-Sales, Barcelona, Spain

  • M Groenvold, Copenhagen, Denmark

  • K vd Rijt, Amsterdam, Netherlands

  • A Pigni, Milan, Italy

  • L Radbruch, Bonn, Germany

  • C Bausewein, Munich, Germany

  • MI Bennett, Leeds, UK

  • A Giordano, Milan, Italy

  • S Payne, Lancaster UK

  • B Laird, Edinburgh, UK

  • K Pardon, Belgium

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