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      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

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          Abstract

          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.

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          Most cited references35

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          The Analytic Challenge in Interpretive Description

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            End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis.

            Current models of end-of-life care (EOLC) have been largely developed for cancer and may not meet the needs of heart failure patients. To review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to the prevalence of conversations; patients' and practitioners' preferences for their timing and content; and the facilitators and blockers to conversations. Systematic literature review and narrative synthesis. Searches of Medline, PsycINFO and CINAHL databases from January 1987 to April 2010 were conducted, with citation and journal hand searches. Studies of adult patients with heart failure and/or their health professionals concerning discussions of EOLC were included: discussion and opinion pieces were excluded. Extracted data were analysed using NVivo, with a narrative synthesis of emergent themes. Conversations focus largely on disease management; EOLC is rarely discussed. Some patients would welcome such conversations, but many do not realise the seriousness of their condition or do not wish to discuss end-of-life issues. Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death; fearing causing premature alarm and destroying hope, they wait for cues from patients before raising EOLC issues. Consequently, the conversations rarely take place. Prognostic uncertainty and high risk of sudden death lead to EOLC conversations being commonly avoided. The implications for policy and practice are discussed: such conversations can be supportive if expressed as 'hoping for the best but preparing for the worst'.
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              Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

              Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.
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                Author and article information

                Contributors
                hbz@regionsjaelland.dk
                helle.ussing.timm@rsyd.dk
                malene.missel@regionh.dk
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                25 July 2019
                25 July 2019
                2019
                : 18
                : 62
                Affiliations
                [1 ]ISNI 0000 0004 0646 8763, GRID grid.414289.2, Holbaek Hospital, ; Smedelundsgade 60, 4300 Holbæk, Region Zealand Denmark
                [2 ]ISNI 0000 0001 0728 0170, GRID grid.10825.3e, REHPA, Knowledge Centre for Rehabilitation and Palliative Care, National Institute of Public Health, , University of Southern Denmark, ; Vestergade 17, 5800 Nyborg, Denmark
                [3 ]GRID grid.475435.4, Rigshospitalet, ; Blegdamsvej 9, 2000 Copenhagen, Denmark
                Author information
                http://orcid.org/0000-0002-5409-0019
                Article
                448
                10.1186/s12904-019-0448-z
                6657144
                31345196
                6af0245e-e55f-42de-b7d4-7039fd257653
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 17 March 2019
                : 18 July 2019
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100009708, Novo Nordisk Fonden;
                Award ID: NNF17OC0029010
                Funded by: FundRef http://dx.doi.org/10.13039/501100009457, Region Sjælland;
                Award ID: RSSF2017000644
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Anesthesiology & Pain management
                palliative care,generalist palliative care,hospital,end-of-life,conversation,interpretive description,ethnography

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