The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.

Background The implementation of early palliative care within a primary care setting is a recent academic topic. Recruiting General Practitioners (GPs) to participate in a palliative care study can be challenging. The pro-Spinoza project implemented a Care Pathway for Primary Palliative Care in 5 areas in Belgium. During this project, the feasibility of the recruitment of GPs and palliative care patients was evaluated. Methods The recruitment process was recorded in detail via an electronic logbook combining quantitative and qualitative data. Quantitative recordings included the contact types and the number of contacts with eligible GPs and were analysed descriptively. Qualitative recordings included field notes with feedback from the GPs and other stakeholders and were thematically analysed starting from the Grol and Wensing framework for professional behaviour change. Results Of 4065 eligible GPs working in 5 areas under research, 787 GPs (19%) were contacted individually, 398 GPs (9,8%) were contacted face-to-face and most of these 398 GPs showed high interest in the topic. 112 GPs (2,8%) signed the collaboration agreement, but finally only 65 GPs (1,6%) delivered at least a completed baseline-questionnaire. Despite the initial interest in participating, the unpredictable and busy daily workloads of the GPs, as well as inexperience with research protocols, impeded the ability of the GPs to fully engage in the study. This resulted in the high dropout rate. Participating GPs reported that they had underestimated the effort required to effectively participate in the project. Conclusions Recruitment of GPs to palliative care research is challenging. Primary care is a vital service to engage in palliative care research however the practical limitations reduce the ability of the service to effectively engage in the research. More research is needed to determine how GPs might be better supported in research. Trial registration ClinicalTrials.gov, NCT02266069 , Registered 16th October 2014, retrospectively registered.

BackgroundStarting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate.The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention.Methods/DesignA quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary outcome is reduced hospital death rate per GPs’ patient population. Secondary outcomes are increased death at home and health care consumption patterns suggesting high quality palliative care.Per research cluster, GPs will be recruited via convenience sampling. These GPs -volunteering to be involved will recruit people with reduced life expectancy and their informal care givers. Health care consumption data in the last year of life, available for all deceased people having lived in the research clusters in the study period, will be used for comparison between patient populations of participating GPs and patient populations of non-participating GPs. Description of baseline characteristics of participating GPs and patients and monitoring of the level of involvement by GPs, patients and informal care givers will happen through regular, privacy-secured web-surveys.Web-survey data and health consumption data are linked in a secure way, respecting Belgian privacy laws.DiscussionTo evaluate this complex intervention, a quasi-experimental stepped wedge cluster design has been set up. Context characteristics and involvement level of participants are important parameters in evaluating complex interventions. It is possible to securely link survey data with health consumption data. By appealing to IT solutions we hope to be able to partly reduce respondent burden, a known problem in palliative care research.Trial registrationClinicalTrials.gov Identifier: NCT02266069.

Background The Surprise Question (SQ) “would I be surprised if this patient were to die in the next 12 months?” has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question (“Would I be surprised if the patient were still alive after 12 months?”) alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions. Methods An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance – 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A “surprise threshold” for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance. Discussion This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice. Trial registration Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered. Electronic supplementary material The online version of this article (10.1186/s12904-019-0413-x) contains supplementary material, which is available to authorized users.

Background To deliver optimal palliative care, a Care Pathway for Primary Palliative Care (CPPPC) was developed. This CPPPC was implemented by general practitioners (GPs) in territories of five Belgian palliative care networks (2014–2016). Belgian doctors have much therapeutic freedom, and do not commonly follow guidelines. Objectives To assess how palliative care was provided by GPs before the CPPPC and its implementation project were presented publicly. Methods Between 2013 and 2015, seven focus groups with GPs were conducted. Participants included 15 GPs in three French-speaking focus groups and 26 GPs in four Dutch-speaking focus groups, with diversity for age, gender, palliative care experience and practice context. Some GPs implemented the CPPPC later. Results GPs considered each palliative care case unique and disliked strict protocols. However, they expressed a need for peer review and reflective frameworks. GPs felt it is important to identify palliative care patients ‘timely’, but found this difficult. Screening methods help, but are not widely used. GPs struggled most with identifying palliative care needs in non-oncological patients. Bad news breaking was considered difficult. Continuity of care was considered very important. However, advance care planning seemed more widely practised by Dutch-speaking GPs than by French-speaking GPs. The taboo of palliative care provoked emotional discussions. Conclusion Palliative care frameworks which help GPs to deliver ‘tailor-made’ care have more chance to be adopted than strict protocols. GPs should be given education for bad news breaking. Palliative care and advance care planning practices differ locally: guideline dissemination plans should respect these local differences.