Improving the organization of palliative care: identification of barriers and facilitators in five European countries

Palliative care aims to preserve the best possible quality of life of the patient whose disease is not responsive to curative treatment [1]. Improvements in palliative care usually focus on pain and symptom control, use of standardized assessment tools, care in the last days of life and the quality of dying [2],[3]. To date, improving specific organizational aspects of palliative care has received less attention [3].

Interventions to improve the organization of palliative care encounter challenges beyond the usual problems of implementation of change in health care. Patients in need of palliative care often move between services, have changing (and often increasing) needs for treatment and support, have multiple problems and symptoms [4] and receive care from a variety of professionals [5]. This requires optimal collaboration between patients, informal carers and a range of professionals and health-care organizations [1],[6]. In order to overcome these challenges and improve the organization of palliative care, systematic implementation to translate the results of clinical research into everyday clinical routines is necessary [7]. A first step in a systematic implementation process is the identification of barriers and facilitators [7]. Recent studies have provided some insights in possible barriers and facilitators related to changing the organization of other fields in health care, for example, in the handover of care [8], case management [9] and the introduction of nursing guidelines [10]. However, studies on improving the organization of palliative care are still lacking.

For this reason, the objective of this study was to identify barriers to and facilitators of improvements in the organization of palliative care in Europe. The results from this study will be used in the European Seventh Framework IMPACT project (IMplementation of quality indicators for PAlliative Care sTudy) to develop and tailor national and setting-specific strategies to improve the organization of palliative care in England, Germany, Italy, Norway and the Netherlands [11].

A qualitative design, with semi-structured individual and focus group interviews, was used. Individual interviews were conducted in order to gain professionals' understanding of barriers and facilitators to improve the organization of palliative care [12]. Focus group interviews were used to reflect the social and cultural contexts of barriers and facilitators to improve the organization of palliative care [13].

In total, 40 professionals were interviewed and another 59 participated in 10 focus group interviews (Table 1). They were spread evenly in all major services providing palliative care, including hospitals, hospices, nursing homes and primary care facilities.

Barriers and facilitators were inductively categorized into 16 categories and organized into themes, using the adapted model for understanding change at different levels of health care [16]. Table 2 provides an overview of the framework with categories, barriers and facilitators, and associated quotes in each theme. Table 3 provides an overview of the categorized barriers and facilitators per country. The themes and categories are summarized below.

This study identified barriers and facilitators to improve the organization of palliative care. They could be arranged in five themes as described by Grol, being the innovation itself, the individual professional level, group dynamics, the organizational context and the local political-economic context [16]. All themes appeared to be related to structures and processes of care, as described in the Donabedian Model [17]. Although the barriers and facilitators differ in scope, context, strength and provenance, most of them were shared by professionals from different European countries. However, when comparing barriers and facilitators cross-nationally, differences in the provision of palliative care should be considered. For example, the national health-care system and organization of palliative care differs in the five participating countries. As shown elsewhere, all five countries have legislation about palliative care [18],[19]. Despite broadly similar legal frameworks, access to palliative care services differs between countries [20]. There are, for example, cultural barriers in Italian society that refrain patients from receiving adequate and timely palliative care [18],[21]. Although such barriers were not reported by professionals in the other countries, some of them experienced a lack of awareness, but then primarily caused by a lack of knowledge about palliative care of their superiors. Furthermore, the availability of palliative care services also differed between countries. However, even though hospices are not available in Norway and Italy does not have palliative care units in hospitals [18], patients receive palliative care in other types of services, whereby most services provide palliative care in agreement with the World Health Organization's definition of palliative care [18],[22].

Differences were found not only between countries but also within countries, such as regional or setting-specific regulations. Sometimes, the same aspect appeared to be a facilitator in one service and a barrier in another. In the Netherlands, for example, networking was considered a facilitator in one service as it resulted in knowing other professionals, but a barrier in another service, as economic regulation caused competition between services.

Despite these national differences, it appeared that similar barriers and facilitators regarding the organization of palliative care existed in different countries. For example, team climate was mentioned as an influential factor by professionals in all countries but England, and organizational processes were mentioned by professionals in Germany as well as in the Netherlands. Financial resources and a positive attitude to change were mentioned by professionals in all countries, suggesting that, for example, sufficient funding and the motivation of staff are a prerequisite to change. Facilitators that were mentioned as a barrier when absent (e.g. attractiveness of improvement strategies) could also be considered as an essential requirement to change.

Several facilitators identified in this study are comparable to those found in other studies in health care, like flexibility of timing educational sessions [23], enthusiastic and active initiators [24] and intrinsic motivation of the team members [25]. Comparable barriers are lack of awareness [25], lack of training and guidance [26], fear of change [26], time constraints [21], staff shortages [21],[27], lack of funding [21],[27] and lack of adherence to guidelines [28]. The factors identified in our study are therefore not unique to palliative care, but it appears that there are similarities between the organization of care in different services and countries. Even though the factors may not be unique, the combination of them is relevant because of the complexity of palliative care [21]. Patients in need of palliative care, for example, have multiple problems and symptoms resulting in changing (and often increasing) needs for treatment and support [4]. Consequently, they receive care from a variety of professionals in different types of services [1],[6]. This requires multidisciplinary teamwork and a good division of tasks and responsibilities [1],[6]. However, the multidisciplinary approach in palliative care is also what makes it more difficult to change the organization of palliative care [5]. In our study, a Norwegian interviewee, for example, pointed out that because staff were trained so traditionally, physicians led the team meetings, while the other staff present did not participate. West et al. described 'participation safety' as defined by the extent to which a team participates in making decisions and whether team members feel psychologically safe in proposing new ideas, as a factor that can influence teamwork [29]. In this case, 'participation safety' was not possible because of the attitude of the nurses and the social pressure of the physicians. Together with self-efficacy, attitude and social influence are the main determinants of the ASE Model (Attitude, Social-influence and self-Efficacy) [30], which in itself is derived from the theory of planned behaviour [31]. Knowing these determinants can facilitate adaptation of improvement strategies in order to achieve the planned behaviour of the nurses. However, only few implementation models translating the results of research into clinical routines recommend to perform a detailed analysis of barriers and facilitators before starting the intervention [7],[32]. For example, the widely used framework for the development and evaluation of complex interventions to improve health of the UK Medical Research Council does not consider such uncertainties until the pilot testing of the intervention [33]. The PDSA cycle (Plan-Do-Study-Act) does not even explicitly mention a barrier and facilitator analysis [34]. Although most implementation studies refer to one of these models, only few studies actually perform a barrier and facilitator analysis before starting to implement an intervention [35]. The barriers and facilitators identified in this study will be used in the IMPACT project to tailor country and setting-specific intervention strategies to improve the organization of palliative care in 40 services across Europe.

This study identified barriers and facilitators to organizational change in palliative care. Some of these barriers and facilitators were experienced by professionals in almost all countries and are therefore prerequisites to change. In order to promote successful implementation of change, it is important to tailor an organizational improvement to the needs of individuals and organizations. Understanding the barriers to and facilitators of change is essential for such tailoring.