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Objective To explore district nurses’ experiences in providing terminal care to patients and their families until death in a private home setting.Design, setting and subjects Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands.Results Four themes were identified: ‘Challenges in providing terminal care’, ‘The importance of supporting families’, ‘Collaborative challenges in terminal care’ and ‘Differences between rural districts and urban districts’. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock.Conclusion Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient’s wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts.

The concept of total pain endeavors to encompass central aspects of suffering in relation to severe disease, death and dying. Dame Cicely Saunders introduced the concept in the early 1960s in relation to care for the terminally ill and dying patients with cancer. An examination of Danish palliative care, particularly Danish hospice care, indicates that total pain continues to be a relevant concept today. To further explore the current relevance of total pain the study examines its underlying ontology, epistemology and methodology. The study also addresses how the understanding and practice of total pain theory has developed throughout its history, in addition to how the understanding of concepts and practices is constantly being negotiated, shaped and transformed in relation to changes in society and by individuals, groups and organizations. The first of 21 hospices in Denmark opened in 1992 and they represent a case in point for exploring the transformation of total pain and total care since then. The empirical data, which are based on materials relevant to the history of the hospice movement and practice in Denmark, include national policy documents, local yearbooks, mapping, research, documentation of practice, interviews and on-going dialogue with management and staff at Danish hospices over the last 25 years. The study, which takes an abductive analytical approach, draws on my own experiences and empirical data, in addition to the empirical and theoretical research of others but also gains inspiration from a theoretical institutional logic perspective. Research shows that there are three main co-existing and interrelated institutional logics in the history of Danish hospices: care, medicine and governance. Based on inspiration from sociological and philosophical palliative care research and data on the development of Danish hospices, this study demonstrates how the concepts and practices of total pain and total care have been transformed in the compromises made due to the co-existence of these competing logics.

Abstract Background People with advanced cancer need to balance their resources and energy in order to experience enjoyment and quality of life in the time they have left. A resource-oriented intervention is developed targeting these aspects. The present protocol presents a feasibility study of this resource-oriented intervention in people with advanced cancer. Methods A feasibility study with a repeated-measurement design without a control group will be conducted at the research clinic of REHPA, the Danish Knowledge Center for Rehabilitation and Palliative Care. Data will be gathered at baseline, during and after a 5-day residential stay, after 6 weeks, during a 2-day follow-up stay and after 12 weeks. In total, 20–25 home-living adults (≥ 18 years) with advanced cancer reporting needs in everyday life will be recruited. The intervention consists of workshops and engagement in physical and creative everyday activities provided by a multidisciplinary team. Outcome measures are quality of life, physical function and fatigue, which will be assessed using the European Organisation for Research and Treatment of Cancer Quality-of-Life Questionnaire Core-30. Balance in everyday activities will be assessed using the Occupational Balance Questionnaire. Feasibility data will also be collected regarding (1) fidelity, (2) adherence, (3) dose and (4) reach and mechanisms of impact. For exploration of mechanism of impact, participant observations and focus group interviews will be used. Discussion This study presents a new approach in rehabilitation and palliative care aimed at supporting people with advanced cancer; instead of identification of problems, the present resource-oriented palliative rehabilitation intervention will target people’s resources, enhancing balance in everyday activities and underpinning enjoyment and quality of life. The results from the feasibility study can inform ways in which to support the everyday life of people with advanced cancer and thus have potential to improve their quality of life. The long-term perspectives are to evaluate the intervention in terms of effect, process and cost-effectiveness. This will provide evidence to adjust the content of rehabilitation and palliative care for this group of people. Trial registration NCT04772690 Name of the registry: Balance, Activity and Quality of Life (BAL) Date of registry: February 26, 2021

Abstract 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.

Abstract 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

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.

OBJECTIVES: The aim of this study was to explore Danish cancer survivors perspectives on the process of returning to work. METHODS: Six focus-group interviews (N=32) were held with cancer survivors attending a five-day rehabilitation stay. Data were analyzed by applying meaning condensation then organized into themes. RESULTS: Most cancer survivors do not imagine themselves resuming work in the same way as before they had cancer. Many cancer survivors are missing support when navigating the bureaucracy involved with the process of returning to work and do not know how to become, or when they will be, ready for work. CONCLUSIONS: Practice guidelines that support Danish cancer survivors in returning to work are currently based on knowledge from international reviews but should be supplemented with elements addressing how and when to become ready for work.

Background: General practice recognizes the existential dimension as an integral part of multidimensional patient care alongside the physical, psychological and social dimensions. However, general practitioners (GPs) report substantial barriers related to communication with patients about existential concerns. Objectives: To describe the development of the EMAP tool facilitating communication about existential problems and resources between GPs and patients with cancer. Methods: A mixed-methods design was chosen comprising a literature search, focus group interviews with GPs and patients (n = 55) and a two-round Delphi procedure initiated by an expert meeting with 14 experts from Denmark and Norway. Results: The development procedure resulted in a semi-structured tool containing suggestions for 10 main questions and 13 sub-questions grouped into four themes covering the existential dimension. The tool utilized the acronym and mnemonic EMAP (existential communication in general practice) indicating the intention of the tool: to provide a map of possible existential problems and resources that the GP and the patient can discuss to find points of reorientation in the patient’s situation. Conclusion: This study resulted in a question tool that can serve as inspiration and help GPs when communicating with cancer patients about existential problems and resources. This tool may qualify GPs’ assessment of existential distress, increase the patient’s existential well-being and help deepen the GP–patient relationship.

Objective: The objective of this study is to identify points of agreement and disagreements among general practitioners (GPs) in Denmark concerning how the existential dimension is understood, and when and how it is integrated in the GP–patient encounter. Design: A qualitative methodology with semi-structured focus group interviews was employed. Setting: General practice setting in Denmark. Subjects: Thirty-one GPs from two Danish regions between 38 and 68 years of age participated in seven focus group interviews. Results: Although understood to involve broad life conditions such as present and future being and identity, connectedness to a society and to other people, the existential dimension was primarily reported integrated in connection with life-threatening diseases and death. Furthermore, integration of the existential dimension was characterized as unsystematic and intuitive. Communication about religious or spiritual questions was mostly avoided by GPs due to shyness and perceived lack of expertise. GPs also reported infrequent referrals of patients to chaplains. Conclusion: GPs integrate issues related to the existential dimension in implicit and non-standardized ways and are hindered by cultural barriers. As a way to enhance a practice culture in which GPs pay more explicit attention to the patients’ multidimensional concerns, opportunities for professional development could be offered (courses or seminars) that focus on mutual sharing of existential reflections, ideas and communication competencies. Key points Although integration of the existential dimension is recommended for patient care in general practice, little is known about GPs’ understanding and integration of this dimension in the GP–patient encounter. The existential dimension is understood to involve broad and universal life conditions having no explicit reference to spiritual or religious aspects. The integration of the existential dimension is delimited to patient cases where life-threatening diseases, life crises and unexplainable patient symptoms occur. Integration of the existential dimension happens in unsystematic and intuitive ways. Cultural barriers such as shyness and lack of existential self-awareness seem to hinder GPs in communicating about issues related to the existential dimension. Educational initiatives might be needed in order to lessen barriers and enhance a more natural integration of communication about existential issues.

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.