Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe:protocol for an international, multicenter, prospective, mixed method study

Background The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Methods Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3?months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. Discussion This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe

Implementation of palliative care consult Service in Hungary

__Background:__ The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300-400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ("Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE"), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. __Methods:__ PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. __Results:__ The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. __Conclusions:__ The service integration of palliative car

Funding models in palliative care: lessons from international experience

Background:Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them.Aim:To assess national models and methods for financing and reimbursing palliative care.Design:Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms.Results:Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following:Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision.Funding is frequently characterised as a mixed system of charitable, public and private payers.The basis on which providers are paid for services rarely reflects individual care input or patient needs.Conclusion:Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest

Interplay of Structural Disorder and Short Binding Elements in the Cellular Chaperone Function of Plant Dehydrin ERD14.

Details of the functional mechanisms of intrinsically disordered proteins (IDPs) in living cells is an area not frequently investigated. Here, we dissect the molecular mechanism of action of an IDP in cells by detailed structural analyses based on an in-cell nuclear magnetic resonance experiment. We show that the ID stress protein (IDSP) A. thaliana Early Response to Dehydration (ERD14) is capable of protecting E. coli cells under heat stress. The overexpression of ERD14 increases the viability of E. coli cells from 38.9% to 73.9% following heat stress (50 °C × 15 min). We also provide evidence that the protection is mainly achieved by protecting the proteome of the cells. In-cell NMR experiments performed in E. coli cells show that the protective activity is associated with a largely disordered structural state with conserved, short sequence motifs (K- and H-segments), which transiently sample helical conformations in vitro and engage in partner binding in vivo. Other regions of the protein, such as its S segment and its regions linking and flanking the binding motifs, remain unbound and disordered in the cell. Our data suggest that the cellular function of ERD14 is compatible with its residual structural disorder in vivo

Funding models in palliative care: Lessons from international experience

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest

Integrated palliative care in the Spanish context: a systematic review of the literature

Abstract Background: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. Methods: Systematic review of the literature about IPC published in Spain between 1995 and 2013. Sources searched included PubMed, Cochrane Library, Cinahl, the national palliative care Journal (Medicina Paliativa), and Google. Evidence on IPC in care models, pathways, guidelines and other relevant documents were searched. Additionally, data were included from expert sources. Elements of IPC were considered based on the definition of IPC and the Emmanuel´s IPC tool. The main inclusion criterion was a comprehensive description of PC integration. Results: Out of a total of 2,416 titles screened, 49 were included. We found two models describing IPC interventions achieving continuity and appropriateness of care as a result, 12 guidelines or pathways (most of them with a general approach including cancer and non-cancer and showing a theoretical IPC inclusion as measured by Emmanuel’s tool) and 35 other significant documents as for their context relevance (17 health strategy documents, 14 analytical studies and 4 descriptive documents). These last documents comprised respectively: regional and national plans with an IPC inclusion evidence, studies focused on IPC into primary care and resource utilisation; and descriptions of fruitful collaboration programmes between PC teams and oncology departments. Conclusions: The results show that explications of IPC in the Spanish literature exist, but that there is insufficient evidence of its impact in clinical practice. This review may be of interest for Spanish-speaking countries and for others seeking to know the status of IPC in the literature in their home nations

Review of European guidelines on palliative sedation: a foundation for the updating of the European Association for Palliative Care framework

in 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to improve the quality of their content and the applicability of their recommendations

What are the fears and support needs of those living alone in the last year of life and who responds?

Background There is a general assumption that family caregivers will be available and willing to provide support to those living with terminal illness in the last year of life; but what of those who live alone at this time? Others (1) have highlighted the need for patients in this situation to develop trusting relationships with their professional caregiving network and with key professionals in particular. This can enable sensitive discussion and planning about future care wishes – a clear necessity as disease progresses. Design and methods Patients with advanced cancer, COPD and chronic heart failure (CHF), with a prognosis of less than 12 months, were recruited at clinical services sites in five European nations: Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data were collected using semi-structured interviews at baseline and at three months follow-up. Quantitative data were collected using POS, CANHELP Lite tools at monthly intervals and in weekly self-completed patient ‘diaries’. Interviews focused on how integrated palliative care services responded to patients’ needs and problems. A transnational comparative analysis was conducted using a qualitative thematic approach. Results Of 157 patient participants, 48 (30%) lived alone (range by country: 13%-41%). Of this sub-sample, the mean age was 73 years and 58% were women. Diagnoses were: cancer (n=27), COPD (n=13), CHF (n=7), not recorded (n=1). Many patients reported being fearful about the future; feeling lonely and isolated; feeling a burden on others; and problems with ‘the little things’. Conversely, many were able to give examples of where individual professionals and services responded to their needs quickly and with sensitivity. Informal sources of support from neighbours and friends were apparent and included practical help, emotional assistance and social engagement. Conclusion Commonalities across the participating nations in the fears and concerns of patients living alone in the last year of life were apparent. However, there was variability in how services responded to needs and in the extent to which these responses were integrated and coordinated. Lone patients are a potentially unrecognised sub-group with a particular set of needs in relation to professional engagement. Integrated palliative care services need to acknowledge this and respond accordingly. Further research into how palliative care service provision towards the end of life dovetails with informal support networks is required. 1. Hanratty et al. (2013). What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Family Practice. 14:22. http://www.biomedcentral.com/1471-2296/14/22 On behalf of InSupC: EU FP7 funded project (Ref: 305555) on integrated palliative care in Europ

Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease

Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe. Methods: Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used. Results: 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. Conclusion: Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training

To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review

Palliative Care (PC) aims to improve the quality of life for patients with cancer and their families and its benefits have been demonstrated by several studies. The objective of this systematic review is to assess the integration of PC in the content of guidelines/pathways of adult cancer patients in Europe. Methods We included studies of adult patients with cancer published from 01/01/1995 and 31/12/2013 in Europe in six languages. We searched nine electronic databases, hand-searched six journals and also performed citation tracking. Studies were ranked using Emanuel's Integrated Palliative Care (IPC) criteria, a tool containing 11 domains to assess PC content in guidelines. Two reviewers screened the results and narrative synthesis has been employed. Results We identified a total of 28,277 potentially relevant articles from which 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways. Eighty percent (80 %) of the guidelines/pathways emphasize a holistic approach and 66 % focus on PC interventions aimed at reducing suffering. Fifty seven percent (57 %) did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. Conclusion Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC. The studies that were found to fulfil at least 10/11 Emanuel's IPC criteria could serve as benchmarks of IPC