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Background: Heart failure is a chronic, life-threatening illness with multiple acute events. Palliative care alongside standard treatment is recommended for these patients. There is a lack of knowledge and research literature on how to integrate palliative care interventions for heart failure patients in a general hospital setting. Aim: The aim of this study was to produce new insight for developing and integrating general palliative care into heart failure treatment. Methods: Guided by action research, we conducted an interdisciplinary workshop inspired by Tsoukas dialogue theory, where tension between perspectives is used as a facilitator of dialogue and the generation of new insights. Perspectives were incorporated through selected patient narratives and professionals’ experiences. Data from the workshop were analysed using a thematic analysis. The findings are interpreted with Kleinman's theory on illness and disease and discussed using Tsoukas theory and additional research. Results: General palliative care must be initiated from the patient's perspective and wishes. Doing so requires understanding and uniting the different perspectives and objectives of heart failure treatment and palliative care. One way of doing this is through a narrative approach with interdisciplinary teams. However, this requires organisational efforts and adaptation to the specific cardiac setting. Conclusion: Integrating palliative care principles into cardiology is a complex issue. Developing palliative care for heart failure patients requires more than simply designing a set of guidelines. Rather, a wider outlook involving perspectives, competences and organisation is necessary. Acknowledging such considerations, we designed an intervention centred on three elements: standard heart failure treatment, integrated sessions applying a narrative approach and monthly interdisciplinary conferences. Relevance: This article adds to the current research literature on changing palliative care practice for heart failure patients and the value of integrating different perspectives.

ObjectivesTo assess the effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on symptom burden, to explore intervention mechanisms through patient and intervention provider characteristics and to assess long-term survival and place of death.MeasuresThe effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on patient symptom burden was studied in the Domus randomised clinical trial. Participants had incurable cancer and limited treatment options. The intervention was provided by specialised palliative home teams (SPT) based in hospice or hospital and was enriched with a psychological intervention for patient and caregiver dyad. Symptom burden was measured with Edmonton Symptom Assessment System (ESAS-r) at baseline, 8 weeks and 6 months follow-up and analysed with mixed models. Survival and place of death was analysed with Kaplan-Meier and Fisher’s exact tests.ResultsThe study included 322 patients. Tiredness was significantly improved for the Domus intervention group at 6 months while the other nine symptom outcomes were not significantly different from the control group. Exploring the efficacy of intervention provider demonstrated significant differences in favour of the hospice SPT on four symptoms and total symptom score. Patients with children responded more favourably to the intervention. The long-term follow-up demonstrated no differences between the intervention and the control groups regarding survival or home deaths.ConclusionsThe Domus intervention may reduce tiredness. Moreover, the intervention provider and having children might play a role concerning intervention efficacy. The intervention did not affect survival or home deaths.Trial registration numberNCT01885637

This project has two aims: (a) What do relatives to brought in dead (BID) describe as helpful and supportive care when they arrive at the emergency department to see and say goodbye to a deceased? (b) What do nurses describe as good nursing practice for BID persons and their relatives and what may hinder or facilitate this practice in an emergency setting?A qualitative study in the methodology interpretive description.Data will be collected through three data sources: Individual interviews with relatives to BID persons, participant observations of relatives to BID persons during their presence in the emergency department and focus group interviews with emergency nurses.Brought in dead persons and their relatives are received and cared for in emergency departments by emergency nurses. Knowledge of how to render care for the relatives to BID persons in an acute setting including what skills and competences this require of the nurses is warranted. We need to explore, describe, and comprehend the experiences of both the relatives and the nurses to point out potential areas of improvement.This study is a protocol of an Interpretive Description study offering insight into considerations and reflections in designing the study.目的: 该项目有两个目的:(a)当亲属到达急诊室与送来的死者告别时,如何描述对于死者的护理起到帮助性和支持性的作用?(b)护士如何描述送来的死者及其亲属的良好护理实践,以及在紧急情况下这一做法的可能助力和阻力因素? 设计: 对方法论解释性描述的定性研究 方法: 通过三种数据来源收集数据:对送来的死者亲属的个人访谈、送来的死者亲属在急诊间的参观察和对急诊护士的焦点小组访谈。 讨论: 急诊间由急诊护士接送送来的死者及其亲属。了解如何在紧急情况下向亲属提出为送来的死者进行护理的方法,包括护士需要具备的技能和能力。我们需要探索、描述和理解亲属和护士双方在这一方面的经历,指出潜在的改进领域。 影响: 本研究采取解释性描述研究方案,提供设计研究时的考虑和思考。.

The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants’ access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.

Rehabilitation and palliative care are health care fields with separate histories but some recent convergences. Both have been identified as components within universal health coverage and each is the subject of a supportive World Health Assembly Resolution. We draw on the historiography of the two specialties, a recent systematic review of their engagement with each other as described in 62 studies, and critical policy perspectives to examine how rehabilitation and palliative care have been framed as potential partners in care. We examine the changing patient groups served by each field and the organizational forms that combined rehabilitation and palliative care (CRPC) may take. We explore the implications of such collaboration for the underlying goals and values of the two specialties, where each is the subject of changing definitions with differing responsibilities for regulating access to services as well as assuring and documenting quality. We conclude that to be effective CRPC must adapt to the highly segmented and specialized systems in which it is required to operate, recognizing that rehabilitation and palliative care are themselves co-constructors of such segmentation and specialization, but also potential agents for change.

This article examines how hospice philosophy works in contemporary Danish hospice practice. The still sparse literature on Danish hospices indicates that hospice philosophy is influencing professional practice. In international palliative care literature, hospice philosophy is challenged for being overly normative in its ideal of the good death or on the other hand as threatened by the medical model. Drawing on the idea of hospice philosophy as providing meaning for everyday practice, this article explores how it is incorporated within the institutional order of contemporary Danish hospices. An ethnographic study was informed by participant observation and 49 interviews with professionals, patients, and families at three hospices in Denmark. The findings contribute to further understanding of the complexity of maintaining hospice philosophy in contemporary practice. Hospice practice works in an interpretive way with hospice philosophy to offer a “lived” philosophy and a means to an authentic death.

Background: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital. Aim: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices. Design: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202). Data sources: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme. Results: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility. Conclusion: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.

ObjectiveSouth Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.MethodsA systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.ResultsA total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.Significance of resultsInvolvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

Background: There is extensive need for palliative care worldwide, but access to care remains inadequate, especially for non-cancer patients. Video consultations are a promising tool in the provision of home-based palliative care, but an overview of evidence solely on video consultations in palliative care is lacking. Aim: To review and synthesize current evidence regarding the use of video consultations in general and specialized palliative care to various patient groups. Design: A systematic integrative review with a narrative synthesis was undertaken in accordance with PRISMA (2009) guidelines. PROSPERO #: CRD42018095383 Data sources: PubMed, Embase, CINAHL, and PsychINFO were searched for primary research articles published between 2005 and 2018. In addition, reference lists of included articles were hand searched. Results: The search resulted in 813 articles; 39 articles were included in the review, consisting of mixed methods ( n = 14), qualitative ( n = 10), quantitative ( n = 10), and case studies ( n = 5). The studies mainly focused on specialized palliative care to adult patients with cancer in high income countries. Through data analysis, six themes addressing advantages/disadvantages and facilitators/barriers were identified: (1) Redesign of care, (2) Communication, (3) User perceptions, (4) Technology, (5) Privacy issues, and (6) Economic implications. Conclusion: Using video technology in palliative care has both advantages and disadvantages. However, evidence beyond the focus on specialized palliative care and patients with cancer is limited. Future research should focus on how and when video consultations might replace in-person specialized palliative care and video consultations in general palliative care, in low and middle income countries; and involve patients with a non-cancer diagnosis.

Medicalisation of hospice care has been discussed simultaneously with the development of palliative care into a medical speciality. However empirical knowledge of the role of medicalisation in hospice practice is underexplored. This paper considers hospice managers’ perspectives on hospice care in the complex between values related to hospice philosophy and a specialised medical approach to hospice care. Focus groups and small group interviews were conducted with hospice managers from 16 out of the 19 Danish hospices. Drawing on hope as a theoretical framework, the study contributes to further understanding of the complexity of navigating hospice care in the impasse between an existential hope focused on meaning at the end of life and a medical hope for control of the dying body. Hospice care appeared as pulled between these dimensions of hope. The hospice managers took a pragmatic approach to medicalisation but their emphasis on dying as an existential event also points to a role for hospices as a critical voice against over-medicalisation of dying.

Background While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. Methods A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial (Clinicaltrials.gov: NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. Results In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. Conclusion This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. Trial registration The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637.

Background End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting. Aim The purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease. Methods This study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents’ thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting. Results This study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients’ everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries. Conclusion The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.

Background: Telephone consultation for patients and their relatives is a new aspect in the area of palliative care (PC). The centre for palliative care (CPC) in Dhaka, Bangladesh has been delivering a 24/7 telephone service since 2009. Aim: The aim of the study is to describe this 24/7 PC telephone consultation service (TCS); the development and the use of the service and the challenges experienced by the physicians delivering the consultations. Methods: A descriptive mixed method study. Data on telephone consultations were collected from (CPC) from 2009 to 2016. Descriptive statistics were used to identify characteristics of patients, callers’ relationship to patients, reasons for calling, and suggestions/advice provided. A group interview with the consulting physicians was conducted and analysed to describe the development of the service and the challenges experienced. Results: From December 2009 until August 2016, a total of 4195 calls were registered from palliative patients and their carers. The service was utilized most frequently by informal caregivers of patients (80%), pain was the most commonly recorded symptom (24%), and suggestions were mainly provided about general medicine (31%). The service providers are facing many challenges but they are motivated by the positive feedback from patients and carers and by the ability to at least do something. Conclusion: The TCS developed at CPC is a convenient way of delivering advice to palliative patients and their families in rural areas of Bangladesh, where the PC service is not available.

CONTEXT: Avoidable hospital admissions are important negative indicators of quality of end-of-life care. Specialized palliative care (SPC) may support patients remaining at home.OBJECTIVES: Therefore, the purpose of this study was to investigate if SPC at home could prevent hospital admissions in patients with incurable cancer.METHODS: These are secondary results of Domus: a randomized controlled trial of accelerated transition to SPC with psychological intervention at home (Clinicaltrials.gov: NCT01885637). Participants were patients with incurable cancer and limited antineoplastic treatment options and their caregivers. They were included from the Department of Oncology, Rigshospitalet, Denmark, between 2013 and 2016. The control group received usual care. Outcomes were hospital admissions, causes thereof, and patient and caregiver perceptions of place of care (home, hospital, etc.) at baseline, four weeks, eight weeks, and six months.RESULTS: During the study, 340 patients were randomized and 322 were included in modified intention-to-treat analyses. Overall, there were no significant differences in hospital admissions between the groups. The intervention group had more admissions triggered by worsened general health (22% vs. 16%, P = 0.0436) or unmanageable home situation (8% vs. 4%, P = 0.0119). After diagnostics, admissions were more often caused by clinical symptoms of cancer without progression in the intervention group (11% vs. 7%, P = 0.0493). The two groups did not differ significantly in overall potentially avoidable admissions. Both groups felt mostly safe about their place of care.CONCLUSION: The intervention did not prevent hospital admissions. Likely, any intervention effects were outweighed by increased identification of problems in the intervention group leading to hospital admissions. Overall, patients and caregivers felt safe in their current place of care.

Purpose The aims were to describe symptoms and health-related quality of life (HRQoL) in Greenlandic patients with advanced cancer and to assess the applicability and internal consistency of the Greenlandic version of the EORTC-QLQ-C30 core version 3.0. Methods A Greenlandic version of the EORTC QLQ-C30 v.3.0 was developed. The translation process included independent forward translation, reconciliation and independent back translation by native Greenlandic-speaking translators who were fluent in English. After pilot testing, a population-based cross-sectional study of patients with advanced cancer receiving palliative treatment was conducted. Internal consistency was examined by calculating Cronbach's alpha coefficients for five function scales and three symptom scales. Results Of the 58 patients who participated in the study, 47% had reduced social functioning, 36% had reduced physical and role functioning and 19% had reduced emotional and cognitive functioning. Furthermore, 48% reported fatigue, and 33% reported financial problems. The Greenlandic version of the EORTC had good applicability in the assessment of symptoms and quality of life. Acceptable Cronbach's alpha coefficients (above 0.70) were observed for the physical, role and social functioning scales, the fatigue scale and the global health status scale. Conclusions Patients with undergoing palliative treatment in Greenland for advanced cancer reported high levels of social and financial problems and reduced physical functioning. This indicates a potential for improving palliative care service and increasing the focus on symptom management. The Greenlandic version of the EORTC-QLQ-C30 represents an applicable and reliable tool to describe symptoms and health-related quality of life among Greenlandic patients with advanced cancer.

BACKGROUND: End-of-life (EOL) conversations in hospital should serve to give patients the opportunity to consider future treatment options and help them clarify their values and wishes before it becomes relevant to make decisions about treatment. However, it is known that EOL conversations are not performed systematically in hospital. This may mean that patients and their relatives do not address EOL issues. There is a lack of knowledge about who is responsible for conducting these conversations, and when and under what circumstances they are conducted. The aim of this study was to explore the existing practices regarding EOL conversations in an acute care hospital setting.METHODS: The design was Interpretive Description and the methods for the data collection included: 1. Participatory observational studies in a pulmonary medical and surgical ward (a total of 66 h); 2. Four focus group interviews with healthcare professionals (n = 14) from the wards. The analysis followed Spradley's ethnosemantic analysis.RESULTS: The results revealed three cultural categories related to: 1. The physical and organizational setting; 2. The timing of EOL conversations and competencies and roles in addressing EOL issues and 3. Topics addressed in EOL conversations. The EOL conversations were part of daily clinical practice, but there was a lack of competencies, roles were unclear and the physical and organizational environment was not conducive to the conversations. The topics of the EOL conversations revolved around a "here-and-now" status of the patient's disease progression and decisions about the level of treatment. To a lesser extent, the conversations included the patient's and relatives' thoughts and wishes concerning EOL, which allowed long-term care planning.CONCLUSION: This study demonstrates that there are several barriers to talking about EOL in an acute care hospital setting, and future strategies must address an overall approach. In order to provide patients and their relatives with better opportunities to express their EOL wishes, there is a need for clearer roles and guidelines in an interdisciplinary approach to EOL conversations, alongside improved staff competencies and changes to the organizational and physical environment.

OBJECTIVE: Specialized palliative care (SPC) interventions increasingly include patient-caregiver dyads, but their effects on dyadic coping are unknown. We investigated whether an SPC and dyadic psychological intervention increased aspects of dyadic coping in patients with advanced cancer and their caregivers, whether dyad characteristics moderated effects and whether aspects of dyadic coping mediated significant intervention effects on caregivers' anxiety and depression.METHODS: We randomized 258 patients with incurable cancer and their caregivers to care as usual or accelerated transition from oncological treatment to home-based SPC and dyadic psychological support. In secondary outcome analyses, using mixed-effects models, we estimated intervention effects and 95% confidence intervals (CIs) for communication of stress and common coping, and moderation by dyad type and demographics. In path analyses, we investigated whether stress communication and common coping mediated intervention effects on caregivers' symptoms of anxiety and depression. (Clinicaltrials.gov NCT01885637).RESULTS: The intervention significantly increased common coping in patients and caregivers in couples (estimated difference, 0.68; 95% CI, 0.11 to 1.24) and stress communication by partner caregivers (0.97; 0.24 to 1.24). We found some support for different intervention effects for spouses and other dyads, but no evidence of mediation.CONCLUSIONS: Specialized palliative care and dyadic psychological intervention may affect aspects of dyadic coping. Common coping and stress communication did not mediate the previously found significant intervention effects on caregiver anxiety and depression, indicating that other mechanisms may have been central in the intervention.

ObjectiveIn the field of palliative care (PC) as it is integrated into heart failure (HF) treatment, it is essential to explore the patient experience and build on this knowledge for the further development of PC practice and policy. Based on an intervention study, this paper explores what patients with HF find significant in integrated sessions using a narrative S’ approach.DesignWe conducted a semistructured interview study with a qualitative analysis focused on meaning making. The study follows the guidelines of Consolidated Criteria for Reporting Qualitative Research.Participants and settingThe inclusion criteria for the PC intervention were (1) a new diagnosis of HF, (2) follow-up treatment at this local Danish HF clinic and (3) informed consent to participate in the integrated PC intervention. The only exclusion criterion was if the patient was already engaged in a PC programme. 20 patients agreed to participate in the intervention, and 12 of these completed the S’ approach sessions and participated in this interview study.ResultsOverall, the analysis showed that the integrated S’ approach sessions were successful in joining an embodied patient perspective with a medical perspective. The thematic analysis resulted in three themes supporting the overall findings: sessions bring comfort, telling your story provides a sense of meaningfulness, and integrating perspectives of HF into everyday life.ConclusionThe method using the S’ approach in integrated PC and HF sessions was significant in various ways. First, patients experienced a calm and safe atmosphere and perceived that the nurse was truly interested in them. Second, the integrated sessions based on the S’ approach were able to bring comfort to lived physical, psychosocial and existential issues. Last, it allowed patients to combine their embodied understanding of HF with a medical perspective, thereby finding meaning in the sense of how everything is connected.

BACKGROUND: Specialised palliative care trials often fail to address intervention effects on caregiver anxiety and depression, particularly in bereavement. We evaluate effects of specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression in a randomised controlled trial (RCT).METHODS: Patients with incurable cancer and limited antineoplastic treatment options and their caregivers, recruited from a university hospital oncology department, were randomised (1:1) to care as usual or accelerated transition from oncological treatment to home-based specialised palliative care. We assessed caregivers' symptoms of anxiety and depression with the Symptom Checklist-92 up to six months after randomisation and 19 months into bereavement, and estimated intervention effects in mixed effects models.RESULTS: The 'Domus' trial enrolled 258 caregivers. The intervention significantly attenuated increases in caregivers' symptoms of anxiety overall (estimated difference, -0.12; 95% confidence interval, -0.22 to -0.01, p = 0.0266), and symptoms of depression at eight weeks (-0.17; -0.33 to -0.02; p = 0.0314), six months (-0.27; -0.49 to -0.05; p = 0.0165), and in bereavement at two weeks (-0.28; -0.52 to -0.03; p = 0.0295) and two months (-0.24; -0.48 to -0.01; p = 0.0448).CONCLUSIONS: This first RCT evaluating specialised palliative care with dyadic psychological support significantly attenuated caregiver anxiety and depression before and during bereavement. (Clinicaltrials.gov: NCT01885637).

Background: The focus of specialized palliative care is to improve quality of life for patients with incurable cancer and their relatives including an increased opportunity to make their own choice of place of care and death. Aim: To investigate whether a systematic fast-track transition from oncological treatment to specialized palliative care at home for patients with incurable cancer reinforced with a psychological dyadic intervention could result in more time spent at home and death at home. Secondary aims were to investigate effects on quality of life, symptomatology and survival. Design: A prospective, single-centre, randomized controlled trial ( Clinicaltrials.gov : NCT01885637). Setting/participants: In all, 340 patients with incurable cancer and no or limited antineoplastic treatment options. Results: No statistically significant difference was found regarding number of deaths (4%, p = 0.460) and time spent at home (3%, p = 0.491). The secondary outcomes indicated that the intervention resulted in improved quality of life (−11.6 ± 25.5, p = 0.005, effect size = −0.44, 95% confidence interval = −0.77; −0.11), social functioning (−15.8 ± 31.4, p = 0.001, effect size = −0.50, 95% confidence interval = −0.84; −0.17) and emotional functioning (−9.1 ± 21.2, p = 0.039, effect size = −0.43, 95% confidence interval = −0.76; −0.10) after 6 months. A linear mixed-effect regression model confirmed a possible effect on emotional and social functioning at 6 months. Regarding survival, no differences were found between groups ( p = 0.605). No adverse effects were seen as consequence of the intervention. Conclusions: The main findings indicated that the intervention had no effect on time spent at home or place of death. However, the intervention resulted in a weak improvement of quality of life, social functioning and emotional functioning after 6 months.

A prospective national cohort study assessed the development of health-related quality of life (HRQoL) and symptoms in adult patients undergoing treatment and care for advanced cancer in Greenland. HRQol was examined by EORTC QLQ-C30 version 3.0 questionnaire monthly for 4 months. Changes over time and between-group comparisons were examined. Of 58 patients included in the study, 47% completed the questionnaire four times. Functioning was generally high, and improved social functioning was observed after 1 and 2 months. The highest symptom score was for fatigue followed by pain and nausea/vomiting. A high score for financial problems remained unchanged during the entire period. Patients with higher income had reduced pain intensity (p = .03) and diarrhoea (p = .05) than patients with income below the poverty line. After 1 month, reduction in pain intensity was observed for Nuuk citizens compared with non-Nuuk citizens (p = .05). After 2 months, non-Nuuk citizens reported improved social functioning compared with Nuuk citizens (p = .05). After 3 months, Global Health in Nuuk citizens was improved compared with non-Nuuk citizens (p = .05). An important clinical finding was that patients' needs for support are related to social status, and geographical factors should be taken into account when planning palliative care.

Objective:Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility.Method:The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions.Results:Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members.Significance of Results:Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC.

Purpose: The purposes of the present study were to classify the palliative care population (PCP) in a comprehensive cancer centre by using information on antineoplastic treatment options and to analyse associations between socio-demographic factors, cancer diagnoses, treatment characteristics and receiving specialist palliative care (SPC). Methods: This is a cross-sectional screening study of patients with cancer in the Department of Oncology, Rigshospitalet, Copenhagen University Hospital for 6 months. Patients were assessed to be included in the DOMUS study: a randomised controlled trial of accelerated transition to SPC at home (NCT01885637). The PCP was classified as patients with incurable cancer and limited or no antineoplastic treatment options. Patients with performance status 2–4 were further classified as the essential palliative care population (EPCP). Results: During the study period, 3717 patients with cancer were assessed. The PCP comprised 513 patients yielding a prevalence of 14 %. The EPCP comprised 256 patients (7 %). The EPCP was older, more likely inpatients, had a higher comorbidity burden and 38 % received SPC. Women, patients without caregivers and patients with breast cancer were more likely to receive SPC. Conclusions: By using objective criteria from clinical data and systematic screening, the observed prevalence of the PCP of 14 % may be generalisable to comprehensive cancer centres with similar composition of cancer diagnoses.

Background: Palliative care for patients with chronic obstructive pulmonary disease (COPD) in home care settings is a neglected area and needs professional attention. Aim: To present experiences gained from an action research project about palliative care for patients with COPD in a Danish municipality with 97,000 citizens. Methods: An educational programme was developed for improving the ability of professional caregivers to identify palliative care needs of patients with COPD and initiate palliative care interventions. Home care leaders, professional caregivers and researchers collaborated on identifying problems related to palliative care and on developing solutions. The educational programme was implemented in home care in 2015 and 164 professional caregivers attended five educational sessions. Participant outcomes were evaluated through self-administered questionnaires and nine focus group interviews. Data were analysed using descriptive statistics and qualitative descriptive analysis as described by Sandelowski. Results: The educational programme contributed to: a growing awareness of palliative care needs of patients with COPD; increased ability to respond to palliative care needs; and organizational changes in home care. The professional caregivers learned about COPD, palliative care, symptom management and the patient perspective. Conclusion: The action research method was suitable for initiating development and gaining new knowledge in the home care sector as it involved the professional caregivers in both problem identification, development of the educational programme, and implementation of new practices and evaluation.

AIMS AND OBJECTIVES: To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting.BACKGROUND: Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms.DESIGN: Qualitative explorative study.METHODS: In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis.RESULTS: The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care.CONCLUSION: The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care.RELEVANCE TO CLINICAL PRACTICE: The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to identify palliative care needs and initiate and evaluate palliative interventions.

Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid’s Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives’ level of satisfaction with care and treatment and their current main concerns. The aim was to investigate relatives’ level of satisfaction with advanced cancer care and bring to light their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative’s current main concerns and analyzed with a phenomenological hermeneutical approach. Greenlandic patients with advanced cancer who were previously participating in a prospective study were asked if their closest adult relative would participate in the study. Telephone interviews were conducted and relatives responded to the questionnaire. A total of thirty-two relatives were contacted by telephone and 30 (94%) completed the FAMCARE-20 questionnaire and answered open-ended questions. The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. We strongly recommend a focus on psychosocial care, more access to information and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives’ needs is essential to develop an adequate palliative care in a range of settings.

Background. Studies indicate problems between different professional groups working with palliative care and the organisation of palliative home care at nursing homes. The purpose of this study is to examine international experiences and cooperative development initiatives regarding the organisation of community palliative care services.Method. The study has been carried out as a literature study based on bibliographic searches in international databases with selected key words.Results and Conclusion. The study of the literature identified 19 studies described in 20 articles that relate to development efforts and interventions regarding the organisation of palliative care in communities. Nearly, all of the studies were based on health care professionals' assessments of users (the relatives). However, it is unknown whether or how patients and relatives experience a positive effect of the interventions. The literature study shows that it is a great methodological challenge to complete and evaluate studies concerning organisation and cooperation using methods that make the results useful for others.

Background There is a general lack of research regarding the palliative care of nursing home residents and professional education in palliation in Denmark. Qualification requirements need to be established, best practices must be spread, and a systematic approach to providing competent palliative care in nursing homes must be found. Purpose The purpose of this study was to evaluate an attempt to develop—through three pedagogical methods—the palliative care competencies of the personnel and make organizational improvements at three Danish nursing homes. Method A process-based, user-oriented evaluation method was used. Twenty-two nursing home employees and five teachers participated in five focus group interviews. Results Both the nursing home employees and the teachers felt that the project as a whole, and the three methods used, contributed to an improvement in the staff's palliative care competencies and the organization. Conclusion The study exposes the barriers to improving Danish palliative care provision and factors required for development to succeed. It highlights the need for recognition by colleagues, active involvement of nursing home managers, and a certain understanding of the methods, including the importance of prioritizing practice-based competence training.

Background: Patients with COPD receive less palliative care in the primary sector than patients with other diseases with comparable symptoms and prognoses. Aims: To examine health professionals9 reflections, experiences and considerations on palliative care for people with COPD in primary healthcare. Methods: In 2014, 66 health professionals (nurses, assistants and helpers) participated in a 120-minute group interview. Ten group interviews with 3-8 participants were completed. Professionals were invited from eleven homecare districts in Denmark and the interviews were analyzed descriptively. During the interviews five major questions were discussed: what is palliation and who needs palliative care; what are the challenges in working with COPD sufferers; how do you identify palliative care needs; do you initiate discussions with patientsabout the future; and are you able to respond to patient9s palliative care needs? Results: Health professionals expressedvague definitions of palliative careservices to patients suffering from COPD; revealed urgent need for knowledge; and thought it was difficult to find the right time for serious conversations about future life concerns related to COPD. The participants considered good relations and clear agreements to be important for the patients9 confidence but felt unable to help and support the patients during crisis of breathlessness and anxiety. Conclusion: Palliative care for people with COPD in primary health care isa neglected area. Primary health professionals are eager to learn about COPD and how to manage palliation, relieve symptom and communicate.

Objective:According to the World Health Organization (WHO), palliative care (PC) should be available to everyone suffering from life-threatening diseases and should be started early on in the illness trajectory. However, PC is often initiated much later and is restricted to cancer patients. There is a need for more knowledge about how early PC can be implemented in clinical practice. The purpose of our study was to document the best evidence on methods for early identification (EI) of palliative trajectories in cancer, chronic heart failure (CHF), and chronic obstructive pulmonary disease (COPD) populations, and to identify preconditions for early integration of general PC in hospitals and outcomes for patients and relatives.Method:A comprehensive systematic review of methods, preconditions, and outcomes was conducted via an electronic literature search of publications between 2002 and September 2012. A final sample of 44 papers was reviewed in detail.Results:Our study identified disease-specific and general methods for EI of patients who might benefit from PC. Prognostication of end-stage disease based on (holistic) clinical judgment, prognostic factors, and/or care needs are the most frequently recommended methods. A number of interacting disease-, staff-, user-, and organization-specific barriers need to be overcome in order to implement early integration of PC in clinical practice. Early integration of PC may lead to better symptom management, prolonged survival, and better quality of life.Significance of Results:No methods can be recommended for routine clinical practice without further validation. There is an urgent need to develop and evaluate methods based on the holistic assessment of symptoms or needs. The barriers to early integration of PC are most extensive with regard to CHF and COPD. Professional training and education are recommended to facilitate early implementation of PC. The evidence about outcome is sparse and mostly relates to cancer populations receiving specialized PC.

BACKGROUND: The focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death. The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention.METHODS/DESIGN: DOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options.DISCUSSION: Programs that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients' quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient's preferred place of care and attempt to clarify challenges.TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT01885637.

Background Studies establish that many incurably ill people would prefer to die at home, whether their final home is their own home or a nursing home. Experience shows that the professionals in palliative care at the basis level need to increase their competences. The purpose of this literature review is to examine experiences with interventions regarding the development of competencies within community palliative care services – in other words, at the individual work places. Method The study has been carried out as a literature review of international databases (PubMed/Medline, CHINAL, PsycInfo) with selected key words. Results The review of the literature identified 15 publications which dealt with interventions regarding education and competence building. The publications represent individual studies, only two of which were controlled. All conclude that competence building has a positive effect according to the professionals. It is unknown whether or how patients and relatives feel a positive effect from the interventions just as it is unknown how the development of competencies has actually led to a more developed practice. The effect of local competence building in palliative care in the primary sector is lacking. Methods are needed to further examinations of how a competency has actually led to a more developed practice.

The formulated goal of mapping palliative care is the development and dissemination of palliative care nationally and internationally. A process of identification and ranking of the development of ...