Background
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. The World Health Organization has defined palliative care as an ‘approach to improve the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement’ [
1‐
3]. Although a growing number of new insights and best practices in palliative care are being published, knowledge translation into daily practice is lacking [
4]. Study results in both the USA and the Netherlands suggest that up to 40 % of patients in need of palliative care do not receive evidence-based care [
5]. Apparently, there is a wide ‘gap’ between the available scientific evidence and its use in daily practice [
5].
The implementation of new evidence into daily practice is particularly challenging when complex changes are needed, cooperation between disciplines is required, or behaviour needs to be changed [
6]. The use of traditional implementation strategies to convince professional care providers to use new evidence (such as identifying, synthesizing and disseminating evidence in journals, guidelines, continuing medical education and conferences) is apparently not sufficient to engineer changes in the complex systems of palliative care [
5].
Yet, many studies that aim to improve palliative care have been performed. Often, these studies require much time investment and money from both the professional workforce as well as patients, which raises cost-effectiveness questions. It is therefore of utmost importance to synthesise and disseminate state-of-the-art scientific knowledge [
7,
5]. The aim of this integrative review is to provide an overview of effective implementation strategies that have been used to improve the organisation of palliative care. As such, results of this review have been used in the EU-funded Seventh Framework IMPACT project (
IMplementation of quality indicators for
PAlliative
Care s
Tudy) which aims to develop and tailor national and setting-specific strategies to improve the organisation of palliative care in Europe [
8].
Discussion
We made a comprehensive overview of the available literature in relation to strategies used to improve the organisation of palliative care. In total, 68 studies, representing an experimental or quasi-experimental study design, were discussed. These studies included educational strategies, process mapping, feedback, multidisciplinary meetings as well as mixed interventions.
For this review, all reported outcome measures in the identified studies were extracted. These measures included several patient outcome data items (e.g. assessment of the percentage of patients in pain following an educational session about pain treatment) as well as data concerning the process of care (e.g. the frequency of patient referral to specialist care following the introduction of a new referral form), making comparisons of outcomes impossible. However, the aim of all included studies was to improve the organisation of palliative care. We therefore generalized the outcomes to the degree in which they aimed to improve the organisation of palliative care.
Fifty-three studies, covering all strategies identified, reported that their study resulted in improving the organisation of palliative care. Eleven studies showed improvements for some of the characteristics targeted (four multi-educational and seven multi-faceted strategies), and four studies reported limited or no improvements (one using interactive education, one using computer-facilitated education and two multi-faceted strategies). The studies with a mixed or limited result on improving the organisation of palliative care were primarily conducted in one setting (hospital) and directed at one professional group. This stipulates the challenges that are encountered when implementing new evidence in complex environments such as a hospital as well as the importance of the multidisciplinary and interdisciplinary character of palliative care.
The different strategies identified in this review have been described in other fields in health care. In a review by Grol and Grimshaw, for example, large conferences and courses showed mixed effects, small group interactive education showed positive effects, educational outreach showed positive effects, feedback showed mixed effects and the used of mixed interventions often resulted in better results compared to single intervention studies [
5]. Reviews that focused on one strategy type, for example, on audit and feedback [
87], printed educational materials [
88] or educational outreach visits [
89], all had similar findings. One reason for the primarily positive findings of the studies identified in this review might be the fact that participants in a quality improvement project perform better as a result of knowing they are a study object (Hawthorne effect) [
90]. Another reason might be that effects were often measured immediately after the intervention, so we do not know if the effects were sustained. Finally, only a few studies (
n = 12) used a randomised controlled design, which is often considered to be the gold standard in research [
91], compared to other designs. RCTs require significant time and funding and expert research guidance, and particularly, in palliative care populations, they are scarce because of recruitment restrictions, high attrition, (selection) bias, lack of blinding, confounding and small sample sizes [
92,
91]. Many of these aspects, however, are also relevant in studies with a quasi-experimental, non-experimental or case-study design. The studies that were included in this review might, therefore, not represent the strongest designs to test improvement strategies.
The included studies were conducted in a variety of settings (e.g. hospitals, nursing homes, hospices and primary care facilities). The provision of palliative care within these settings may vary depending on the patient group. Patients with cancer, for example, have a different disease trajectory, and other symptoms and needs than persons with dementia [
93,
94]. Despite these differences, there are many similarities regarding the organisation and multidisciplinary character of palliative care. For all chronic, life-threatening conditions, palliative care entails a patient-centred approach in which multidimensional interventions related to actual and future problems, needs and preferences are made.
The WHO definition of palliative care is therefore applicable for all patient groups [
3]. The European Association of Palliative Care illustrates this by recommending a common approach for palliative care across settings [
95,
96]. In addition, 40 international experts agreed that there is no need to formulate disease-specific quality criteria for the organisation of palliative care [
97]. However, this does not mean that there is ample evidence regarding effective strategies to improve (the organisation of) palliative care in the different settings. Hall et al., for example, described that there is limited evidence for palliative care service delivery for residents of care homes for older people [
98]. This illustrates the necessity to further improve the field of implementation science, in particular, in underdeveloped areas such as palliative care for persons with dementia.
Quality improvement projects often require investments of time and money from both the professional workforce and patients. It is important that the evidence of effective strategies is used to improve daily clinical practice. However, researchers and professionals often have different cultures, values, timelines, goals and rewards [
99]. Even when the intervention is well-designed, real-world contextual factors may prevent the intervention from being realized. Implementation of evidence-based and best practices should therefore always be guided by a step-by-step model in order to identify the problem, barriers and facilitators and tailored strategies to solve the problem [
100]. Integrated knowledge translation can then be used as a bridge in closing the gap between what we know and what we do [
101].
The results of this review were used in the EU-funded Seventh Framework IMPACT project. An intervention study investigating improvement projects with pre- and post-test evaluations was performed in 40 services providing palliative care across Europe (including hospitals, nursing homes, hospices and primary care facilities). In this study, quality indicators were used to identify potential areas to improve the organisation of palliative care. Subsequently, Grol’s implementation of change model [
100] was used to guide the services in their quality improvements. The strategies described in this review were used as an example and if possible also as actual strategies regarding how to change the organisation of palliative care.
Strengths and limitations
This is one of the first reviews that provides an overview of implementation strategies used to improve the organisation of palliative care. The results of this review can be used as a starting point for further research. However, some limitations should be taken into account. Firstly, this review used the integrative review methodology. Although this approach allows for the combination of diverse methodologies (including non-experimental research), only studies with an experimental and quasi-experimental design were included because of the unexpected high number of publications on the highest evidence level. Since a variety of methods was used in these studies, a quantitative comparison of effect size was considered impossible. Secondly, because it was the aim of this review to provide an overview of strategies used to improve the organisation of palliative care rather than the effectiveness, we did not assess each individual study for risk of bias or effect estimates. The effects of the strategies presented in this paper should therefore be interpreted with caution. Thirdly, we have limited the search strategy to English literature only. Although publications have been included from non-English speaking countries such as Japan and Italy, it is likely that we have missed potentially interesting publications from countries that often publish in their own language. Fourthly, there is no generic set of search terms to identify literature about improvement strategies, despite the fact that improvements are now being recognized as a science [
102,
103]. Although we have captured a broad selection of literature with our search strategy, it is possible that it did not identify all available publications on this topic.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
YE and MVD are responsible for the design of the study. JvRP and RS equally contributed in the development of the search strategy, selection procedure and analysis of included studies. JvRP drafted the first manuscript. YE, MVD, KV, WM, MH, WL and RS provided extensive feedback to different versions of the manuscript. All authors approved the final manuscript.