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

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

Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease:a systematic literature review of European guidelines and pathways

Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. Methods Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed. Results The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients’ goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment. Conclusion The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated

Challenges in living alone near the end of life:an international comparison from the InSup-C project

Background Policy in end of life care assumes that family caregivers will be available and willing to support those living with terminal illness in the last year of life. But what are the challenges for those who live alone with varying degrees of support from family or other non-professional caregivers? 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 UK. Data were collected using semi-structured interviews at baseline and at three months follow-up. 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 and interpretation Of 157 patient participants, 48 (30%) lived alone (range by country: 13%-41%). Of this sub-sample, the mean age was 74, 65% were women and diagnoses were: cancer 58%; COPD 27%; CHF 15%. Loneliness and/or reduced social contact were apparent in the data from all countries. In Germany, patients were concerned with meaning making and existential questions: ‘Why am I still alive?’ In the UK, positive experiences included maintaining independence and control over daily life but for some, a reliance on variable home care services was evident and replicated data from the Netherlands. In Hungary and Belgium, dealing with symptoms like pain and fatigue were main concerns of this group. Conclusion Commonalities across the participating nations in the concerns of patients living alone in the last year of life were apparent. Whilst loneliness might be a self-evident challenge, increasing social isolation had a detrimental effect for some. Further analysis comparing these experiences with those cohabiting with others is anticipated. On behalf of InSupC: EU FP7 funded project on integrated palliative care in Europ

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