Hope pictured in drawings by patients newly diagnosed with advanced cancer.

BACKGROUND: Hope is an integral part of a dying person's needs and an important phenomenon that has not been satisfactorily explored. The tension between hope for a cure and the reality of being terminally ill is a paradox, which in the context of palliative cancer care, nurses and health care professionals must take into consideration. OBJECTIVE: The purpose of this study was to elucidate the phenomenon of hope and to investigate the lived experiences of hope among newly diagnosed patients with advanced cancer. METHOD: The study used a phenomenological-visual method where drawings and post-drawing interviews were used. The participants were six patients who recently had been offered specialised palliative care treatment. They were five women and one man with different cancer diagnoses and between 30 and 82 years of age (median 65 years). The data consisted of six drawings and individual post-drawing interviews with the participants. The study was reported using the COREQ checklist. RESULTS: The study revealed one main concern 'Being in hope' and hope appeared in four different dimensions; internal, external, relational and transcendental. Hopelessness was present at all times. CONCLUSION: Hope pictured in drawings was expressed through colour, shape, lines, symbols and metaphors, and hope incorporated internal, external, relational and transcendental aspects. Hope was constantly fighting against hopelessness and hope integrated with past, present and future. RELEVANCE TO CLINICAL PRACTICE: Drawings, as well as other visual representations, are suitable tools when trying to understand an ineffable phenomenon such as hope experienced by people newly diagnosed with cancer.

Supportive and palliative care indicators tool (SPICT™) in a Danish healthcare context: translation, cross-cultural adaptation, and content validation.

BACKGROUND: Early identification of patients who require palliative and supportive care at the general palliative care level is challenging. The Supportive & Palliative Care Indicators Tool (SPICT™) might provide a helpful framework for this process. AIM: To translate, culturally adapt and content validate SPICT™-DK in hospital, primary care, and general practice and within the broader Danish health care context. METHODS: SPICT™-DK was translated and cross-culturally validated by using the TRAPD-model (Translation, Review, adjudication, pretesting, and documentation) as well as the EORTC- translation guide (European Organisation for Research and Treatment of Cancer). In the pre-(pilot) testing phase, six focus group interviews and five individual interviews were conducted involving n = 29 health care professionals from general practice, primary care, and hospital. The qualitative data were analyzed through thematic analysis and the SPICT™-DK was then revised and published. RESULTS: The interviews revealed that SPICT™-DK can be used to identify people with palliative care needs. Three themes were derived from the analysis and showed SPICT™-DK provides a linguistic framework but must be used as an interdisciplinary tool as that SPICT™-DK requires competencies and collaboration. CONCLUSION: SPICT™-DK is now translated and culturally validated in a Danish healthcare setting. The tool is useful to identify people with palliative care needs but must be implemented as an interdisciplinary collaborative intervention. SPICT™ -DK cannot be used by all healthcare professionals as it requires disease-specific competencies. However, it provides a common language for early palliative care interventions which can form the basis for interdisciplinary planning of future treatment and care.

Talking about death and dying in a hospital setting - a qualitative study of the wishes for end-of-life conversations from the perspective of patients and spouses.

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.

The use of personal narratives in hospital-based palliative care interventions: An integrative literature review.

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.

Talking about end of life in general palliative care - what's going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark.

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.

Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care.

BACKGROUND: Incurable oesophageal cancer patients are often affected by existential distress and deterioration of quality of life. Knowledge about the life situation of this patient group is important to provide relevant palliative care and support. The purpose of this study is to illuminate the ways in which incurable oesophageal cancer disrupts the patients' lives and how the patients experience and adapt to life with the disease. METHODS: Seventeen patients receiving palliative care for oesophageal cancer were interviewed 1-23 months after diagnosis. The epistemological approach was inspired by phenomenology and hermeneutics, and the method of data collection, analysis and interpretation consisted of individual qualitative interviews and meaning condensation, inspired by Kvale and Brinkmann. RESULTS: The study reveals how patients with incurable oesophageal cancer experience metaphorically to end up at a "table in the corner". The patients experience loss of dignity, identity and community. The study illuminated how illness and symptoms impact and control daily life and social relations, described under these subheadings: "sense of isolation"; "being in a zombie-like state"; "one day at a time"; and "at sea". Patients feel alone with the threat to their lives and everyday existence; they feel isolated due to the inhibiting symptoms of their illness, anxiety, worry and daily losses and challenges. CONCLUSIONS: The patients' lives are turned upside down, and they experience loss of health, function and familiar, daily habits. The prominent issues for the patients are loneliness and lack of continuity. As far as their normal everyday lives, social networks and the health system are concerned, patients feel they have been banished to a "table in the corner". These patients have a particular need for healthcare professionals who are dedicated to identifying what can be done to support the patients in their everyday lives, preserve dignity and provide additional palliative care.

Generalist palliative care in hospital - Cultural and organisational interactions. Results of a mixed-methods study.

BACKGROUND: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-oriented treatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactions that occur is sparse. AIM: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, if possible, to suggest workable solutions for the provision of generalist palliative care. DESIGN: A convergent parallel mixed-methods design was chosen using two independent studies: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. SETTING/PARTICIPANTS: A Danish regional hospital with 29 department managements and one hospital management. RESULTS: Two overall themes emerged: (1) 'generalist palliative care as a priority at the hospital', suggesting contrasting issues regarding prioritisation of palliative care at different organisational levels, and (2) 'knowledge and use of generalist palliative care clinical guideline', suggesting that the guideline had not reached all levels of the organisation. CONCLUSION: Contrasting issues in the hospital's provision of generalist palliative care at different organisational levels seem to hamper the interactions between organisation and culture - interactions that appear to be necessary for the provision of integrated palliative care in the hospital. The implementation of palliative care is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels.

Organization and evaluation of generalist palliative care in a Danish hospital.

BACKGROUND: Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. METHODS: Results from three different data sets, all aiming to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation of palliative care in order to identify concordances and/or discrepancies. RESULTS: The triangulation indicated poor validity of the results from existing methods used to evaluate palliative care in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organization and the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections in the fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized locally--if at all--within the various departments and with no overall structure or policy. CONCLUSIONS: This study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision of palliative care in the hospital. More research is needed to focus on the organization of palliative care and to establish indicators for high quality palliative care provided by the hospital. The lack of valid indicators, both for the hospital's and the departments' provision of palliative care, calls for more qualitative insight in the clinical staff's daily work including their culture and acceptance of the provision of palliative care.

The culture of general palliative nursing care in medical departments: an ethnographic study.

BACKGROUND: In many countries, approximately half of the population dies in hospital, making general palliative nursing care (GPNC) a core nursing task. GPNC in the hospital setting is described as challenging, however little is known about its actual practice. AIM: To explore the GPNC culture in medical departments. METHODS: An ethnographic study, using Spradley's 12-step method, with observational field studies and interviews with nurses from three medical departments in a Danish regional hospital. FINDINGS: Three cultural themes emerged from the analysis, focusing on the setting, the practice and the nurses' reflections on GPNC: (1) GPNC provided in a treatment setting, (2) transition to loving care and the licence to perform palliative care (PC) and (3) potential for team improvement. CONCLUSIONS: GPNC as a culture in medical departments seemed to be embedded in a setting not suited for dying patients. Palliative care was still practised according to the transition model of care, sharply dividing curative from palliative care, and was inappropriately conducted in a fragmented and individual-based way. The term 'loving care' was used as a 'gate-opener' to provide palliative care for the dying; however, the content of this term was not defined or expressed among the health professionals. Practical and professional nursing skills are not sufficient to improve GPNC in the hospital department. Leaders on all levels need also to address the culture in which palliative care is embedded.

Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome.

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.

Combined rehabilitation and palliative care interventions for patients with life-threatening diseases - PREGOAL. A scoping review of intervention programme goals.

PURPOSE: WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. METHODS: A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. RESULTS: Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. CONCLUSION: This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions.

There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work.When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions.Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care.

Thoughts and experiences on leg amputation among patients with diabetic foot ulcers.

BACKGROUND: Although leg amputation is common among patients with diabetic foot ulcers, only few studies have examined the thoughts regarding leg amputation from the perspective of patients. AIM: This study aims to explore the thoughts of patients with diabetic foot ulcers regarding leg amputation. METHOD: A qualitative design using semi-structured interviews were used and analysed using Interpretative Phenomenological Analysis (IPA). In all five patients participated and the interview questions were focused on thoughts in relation to a possible leg amputation. FINDINGS: Four significant themes were revealed: 1) "Considered-not spoken"-reflections on being alone with one's thoughts, 2) "What people think about me"-concerns about consequences on social relations, 3) "The tough ones and the ones who whine"-considerations about expected self-efficacy and 4) "Limitations and opportunities"-thoughts about physical consequences. CONCLUSION: Even if an amputation is not yet planned, having a diabetic foot ulcer can result in divergent thoughts regarding leg amputation. The findings indicate that amputation is considered a taboo which makes it difficult for the patient to talk about it within either the health care context or with relatives. Health care professionals should therefore be aware of how they communicate regarding leg amputation.

Understanding Existential Anxiety and the Soothing Nature of Nostalgia in Life With Incurable Esophageal Cancer: A Phenomenological Hermeneutical Investigation of Patient Narratives.

BACKGROUND: Research has identified how people living with incurable esophageal cancer experience existential concerns. OBJECTIVE: The aim of this study was to examine the phenomenon of existential anxiety when living with esophageal cancer in the context of receiving general palliative care in a hospital setting. METHODS: This qualitative study is inspired by phenomenological and hermeneutical aspects of the philosophies of Ricoeur and Heidegger. Applying Heidegger's theory of existential anxiety and nostalgia, we interpreted the narratives of 18 patients receiving palliative care due to incurable esophageal cancer. RESULTS: The patients experienced existential anxiety at the loss of a future and homeliness when receiving palliative care. Their existence was reduced to the present, with a break in temporal continuity. An anxious mood permeated their entire being-in-the-world in an unhomelike way. Despite this, patients initiated a restoration of home and meaning expressed as a soothing sense of nostalgia that served as an atmospheric, safe space allowing them to inhabit the borderline between past, present, and future. CONCLUSIONS: The study suggests an empirical interpretation of the existential anxiety patients experience when receiving palliation for incurable esophageal cancer. It sheds light on how these patients would benefit from healthcare professionals inviting them to narrate significant aspects of their life stories in which the soothing presence of nostalgia can be supported. IMPLICATION FOR PRACTICE: Providing care conditions for a life heading toward death, where the patient can live alongside anxiety, involves focusing on "being with" the patient and on incorporating a nostalgic dimension to facilitate soothing restoration of home for patients.

The Understanding of Dignity Among In-Hospital Patients Living With Incurable Esophageal Cancer.

BACKGROUND: Dignity is an inherent value in palliative care, but understanding dignity among people living with and hospitalized for incurable esophageal cancer has not been explored. OBJECTIVE: The aim of this study was to empirically explore the meaning of dignity in people hospitalized with incurable esophageal cancer. METHODS: A qualitative hermeneutic approach, inspired by Gadamer, guided the research process and interpretation of the transcribed interviews. Eighteen patients participated in the study. RESULTS: The meaning of dignity was revealed as reverential response in care relationships and eating as an undignifying activity. A balance of the healthcare system's framework with the lifeworld of the patient was significant in preserving dignity and gave patients a sense of reverent response. Patients were unable to eat ordinary daily meals, which affected their perception of own body and identity, including interactions with others. The resulting bodily changes and social consequences were of crucial importance to the perceived dignity. CONCLUSIONS: A dialogical and understanding approach is significant in making the patient feel worthy, consequently helping to uphold a sense of dignity. The changing and decaying body due to eating difficulties bears witness to illness, altering the individual's sense of self, in turn threatening the dignity of identity. IMPLICATION FOR PRACTICE: The care should be based on a reverential response based on the patients' lifeworld. In doing so, storytelling might be a way. Palliative care for these people needs to stress that patients share other aspects of life that is not totally dominated by their illness, inability to eat, and unrecognizable body.

Professional consciousness and pride facilitate evidence-based practice-The meaning of participating in a journal club based on clinical practice reflection.

Aim: An evidence-based approach should permeate clinical nursing practice, but many nurses lack confidence in applying relevant research evidence to clinical practice. Journal club participation can increase evidence-based practice knowledge and skills while facilitating positive attitudes among participants. Thus, the aim was to describe the experience of nurses in participating in a journal club based on a curriculum derived from their practice narratives. Design: The study employed a phenomenological hermeneutical approach. Qualitative data from six focus groups with 19 nurses were interpreted in a three-step process influenced by the French philosopher Paul Ricoeur. Methods: Influenced by narrative pedagogy and critical reflection through problem-based learning, a journal club named Reflexivity was facilitated in three 2-hourly workshops over eight weeks and evaluated together with nurses across three clinical departments. Results: Three themes are identified: (a) professional reflections are an oppressed aspect of daily nursing; (b) revealing nursing from the hidden; and (c) emerging consciousness in nursing. The study concludes that Reflexivity has the potential to integrate evidence-based knowledge and increase professional consciousness by reflection on clinical questions in an evidence-based context. Fundamental issues of nursing care are raised, and feelings of essential pride in nursing are facilitated. Thus, evidence-based nursing practice is embarked through a journal club based on the participant's narratives.