Integrating Palliative Care by Virtue of Diplomacy; A Cross-sectional Group Interview Study of the Roles and Attitudes of Palliative Care Professionals to Further Integrate Palliative Care in Europe.

BACKGROUND: Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Europe choose different structures to integrate care, they face similar challenges when it comes to creating trust and aligning visions, cultures and professional values. This paper sets out to answer the following research question: what roles and attitudes do palliative care professionals need to adopt to further integrate palliative care in Europe? METHODS: As part of the European Union (EU)-funded research project InSup-C (Integrated Supportive and Palliative Care). (2012-2016), 19 semi-structured group interviews with 136 (palliative) care professionals in 5 European countries (Germany, the United Kingdom, Belgium, the Netherlands, Hungary) were conducted. A thematic analysis was conducted. RESULTS: Integration of palliative care calls for diplomatic professionals that can bring a cultural shift: to get palliative care, with its particular focus on the four dimensions (physical, psychological, social, spiritual), integrated into historically established medical procedures and guidelines. This requires (a) to find an entrance (for telling a normative story), and (b) to maintain and deepen relationships (in order to build trust). It means using the appropriate words and sending a univocal team message to patients and being grateful, modest, and aiming for a quiet revolution with curation oriented healthcare professionals. CONCLUSION: Diplomacy appears to be essential to palliative care providers for realizing trust and what can be defined as normative integration between palliative and curative and/or chronic medicine. It requires a practical wisdom about the culture and goals of regular care, as well as keeping a middle road between assimilating with values in regular medicine and standing up for the basic values central to palliative care.

How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries.

BACKGROUND: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences. AIM: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries. DESIGN: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach. SETTING/PARTICIPANTS: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female). RESULTS: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care. CONCLUSION: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.

The Palliative Care Challenge: Analysis of Barriers and Opportunities to Integrate Palliative Care in Europe in the View of National Associations.

BACKGROUND: Palliative care (PC) development is diverse and lacks an effective integration into European healthcare systems. This article investigates levels of integrated PC in European countries. METHODS: A qualitative survey was undertaken for the 2013 EAPC Atlas of PC in Europe with boards of national associations, eliciting opinions on opportunities for, and barriers to, PC development. ANALYSIS: Barriers and opportunities directly related to PC integration were identified and analyzed thematically according (1) to the dimensions of the World Health Organization (WHO) public health model and (2) by the degree of service provision in each country. A frequency analysis of dimensions and level of provision was also conducted. RESULTS: In total, 48/53 (91%) European countries responded to the survey. A total of 43 barriers and 65 opportunities were identified as being related to PC integration. Main barriers were (1) lack of basic PC training, with a particular emphasis on the absence of teaching at the undergraduate level; (2) lack of official certification for professionals; (3) lack of coordination and continuity of care for users and providers; (4) lack of PC integration for noncancer patients; (5) absence of PC from countries' regulatory frameworks; and (6) unequal laws or regulations pertaining to PC within countries. Innovations in education and new regulatory frameworks were identified as main opportunities in some European countries, in addition to opportunities around the implementation of PC in home care, nursing home settings, and the earlier integration of PC into patients' continuum of care. With increasing provision of services, more challenges for the integration are detected (p < 0.005). CONCLUSION: A set of barriers and opportunities to PC integration has been identified across Europe, by national associations, offering a barometer against which to check the challenge of integration across countries.

Towards accessible integrated palliative care: Perspectives of leaders from seven European countries on facilitators, barriers and recommendations for improvement.

PURPOSE: Literature suggests that integrated palliative care (IPC) increases the quality of care for palliative patients at lower costs. However, knowledge on models encompassing all integration levels for successfully implementing IPC is scarce. The purpose of this paper is to describe the experiences of IPC leaders in seven European countries regarding core elements, facilitators and barriers of IPC implementation and provides recommendations for future policy and practice. DESIGN/METHODOLOGY/APPROACH: A qualitative interview study was conducted between December 2013 and May 2014. In total, 34 IPC leaders in primary and secondary palliative care or public health in Belgium, Germany, Hungary, Ireland, the Netherlands, Spain and the UK were interviewed. Transcripts were analysed using thematic data analysis. FINDINGS: IPC implementation efforts involved a multidisciplinary team approach and cross-sectional coordination. Informal professional relationships, basic medical education and general awareness were regarded as facilitators of IPC. Identified barriers included lack of knowledge about when to start palliative care, lack of collaboration and financial structures. Recommendations for improvement included access, patient-centeredness, coordination and cooperation, financing and ICT systems. ORIGINALITY/VALUE: Although IPC is becoming more common, action has been uneven at different levels. IPC implementation largely remains provisional and informal due to the lack of standardised treatment pathways, legal frameworks and financial incentives to support multilevel integration. In order to make IPC more accessible, palliative care education as well as legal and financial support within national healthcare systems needs to be enhanced.