First steps to integrate general palliative care into a cardiac hospital setting - using dialogue-based workshops.

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.

Use of narrative methods in rehabilitation and palliative care in Scandinavian countries: A scoping review.

BACKGROUND: Although narratives-including an ill person's life story, life situation and future perspectives-seem to lie at the core of rehabilitation and palliative care in Scandinavian countries, we lack a scope of how, when and where narrative methods are used. Such a scope could provide knowledge and inspiration on a practical as well as a policy level. The objective of this study is to explore the literature on the use of systematic, narrative methods in rehabilitative and palliative care for people with life-threatening illness in Scandinavian countries. METHOD: We conducted a scoping review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) where applicable. We performed a systematic search in CINAHL, Medline, PsychInfo, SOCIndex and SveMed+using the search terms 'life threatening illness', 'narratives', 'rehabilitation', 'palliative care' and 'Scandinavia', followed by a search for grey literature. We found 42 records to be eligible for this scope and extracted the data via piloted extraction tables. RESULTS: We identified 17 narrative methods and present findings concerning four themes: (1) a record of the narrative methods used; (2) an objective and theoretical framework for the narrative methods; (3) the content and form of the narrative methods; and (4) the significance of the narrative methods used. CONCLUSION: Narrative methods are used in systematic ways in rehabilitation and palliative care in Scandinavian countries and cover a wide variety of objectives, theoretical frames, forms and outcomes. Further development may benefit from more elaboration on definitions and the relationships between objectives, theoretical frameworks and outcomes.

The First Steps Taken to Implement Palliative Care in Advanced Heart Disease: A Position Statement from Denmark.

According to the World Health Organization, palliative care must be available for everyone with life-threatening diseases. However, in daily practice the primary focus worldwide is on cancer patients. The aim of the article was to generate a national position statement as the first step in implementing palliative care in severe heart disease with focus on advanced heart failure, including tools to identify the need for and timing of palliative care and how palliative care could be organized in Denmark. A task force was formed in the Danish Society of Cardiology Heart Failure Working Group, and the position statement was prepared in collaboration with members from a broad group of specialties, including palliative medicine. Because of major gaps in evidence, the position statement was based on small and low-quality studies and clinical practice statements. This position statement was aligned with the European Society of Cardiology recommendation, focusing on relieving suffering from the early disease stages parallel to standard care and supplementing life-prolonging treatment. The statement delivers practical guidance on clinical aspects and managing symptoms during the three stages of advanced heart disease. Furthermore, the statement describes the importance of communication and topics to be broached, including deactivating implantable cardioverter defibrillators. The statement recommends a targeted effort on organizational strategies using high-quality assessment tools and emphasizes multidisciplinary and intersectoral collaboration. Danish cardiologists supported by allied professionals acknowledge the importance of palliative care in advanced heart disease. This national position statement intended to inform and influence policy and practice and can hopefully inspire other countries to take action toward implementing palliative care in advanced heart disease.

Qualitative study to explore what patients with heart failure find significant during integrated palliative care sessions in a Danish clinic.

OBJECTIVE: In 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. DESIGN: We 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 SETTING: The 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. RESULTS: Overall, 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. CONCLUSION: The 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.

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.