109 results on '"Eychmüller, Steffen"'
Search Results
2. How to talk about dying? The development of an evidence-based model for communication with patients in their last days of life and their family caregivers
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Felber, Sibylle J., Zambrano, Sofia C., Guffi, Tommaso, Schmitz, Felix M., Brem, Beate G., Schnabel, Kai P., Guttormsen, Sissel, and Eychmüller, Steffen
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- 2024
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3. Palliative care and COVID-19: a bibliometric analysis.
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Bernardis, Alessandra, Gonzalez-Jaramillo, Valentina, Ebneter, Andreas S., and Eychmüller, Steffen
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- 2024
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4. Early palliative care integration trial: consultation content and interaction dynamics.
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Kleiner, Nadine, Zambrano, Sofia C., Eychmüller, Steffen, and Zwahlen, Susanne
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- 2024
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5. Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.
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Yildiz, Berivan, van der Heide, Agnes, Bakan, Misa, Iversen, Grethe Skorpen, Haugen, Dagny Faksvåg, McGlinchey, Tamsin, Smeding, Ruthmarijke, Ellershaw, John, Fischer, Claudia, Simon, Judit, Vibora-Martin, Eva, Ruiz-Torreras, Inmaculada, Goossensen, Anne, Allan, Simon, Barnestein-Fonseca, Pilar, Boughey, Mark, Christen, Andri, Lüthi, Nora, Egloff, Martina, and Eychmüller, Steffen
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HEALTH services accessibility ,VOLUNTEER service ,PALLIATIVE treatment ,HUMAN services programs ,FOCUS groups ,RESEARCH funding ,INTERVIEWING ,HOSPITALS ,DESCRIPTIVE statistics ,CONCEPTUAL structures ,MATHEMATICAL models ,THEORY - Abstract
Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020. [ABSTRACT FROM AUTHOR]
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- 2024
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6. The 'Surprise question' in heart failure: a prospective cohort study.
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Gonzalez-Jaramillo, Valentina, Arenas Ochoa, Luisa Fernanda, Saldarriaga, Clara, Krikorian, Alicia, Vargas, John Jairo, Gonzalez-Jaramillo, Nathalia, Eychmüller, Steffen, and Maessen, Maud
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- 2024
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7. Prevalence and characteristics of patients with heart failure needing palliative care
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Arenas Ochoa, Luisa Fernanda, González-Jaramillo, Valentina, Saldarriaga, Clara, Lemos, Mariantonia, Krikorian, Alicia, Vargas, John Jairo, Gómez-Batiste, Xavier, Gonzalez-Jaramillo, Nathalia, and Eychmüller, Steffen
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- 2021
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8. Validation of the German version of the needs assessment tool: progressive disease-heart failure
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Gonzalez-Jaramillo, Valentina, Guyer, Jelena, Luethi, Nora, Sobanski, Piotr, Zbinden, Rut, Rodriguez, Eveline, Hunziker, Lukas, Eychmüller, Steffen, and Maessen, Maud
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- 2021
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9. Which Cost Components Influence the Cost of Palliative Care in the Last Hospitalization? A Retrospective Analysis of Palliative Care Versus Usual Care at a Swiss University Hospital
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Hagemann, Monika, Zambrano, Sofia C., Bütikofer, Lukas, Bergmann, Antje, Voigt, Karen, and Eychmüller, Steffen
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- 2020
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10. Correction to: An online international comparison of thresholds for triggering a negative response to the “Surprise Question”: a study protocol
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White, Nicola, Oostendorp, Linda, Vickerstaff, Victoria, Gerlach, Christina, Engels, Yvonne, Maessen, Maud, Tomlinson, Christopher, Wens, Johan, Leysen, Bert, Biasco, Guido, Zambrano, Sofia, Eychmüller, Steffen, Avgerinou, Christina, Chattat, Rabih, Ottoboni, Giovanni, Veldhoven, Carel, and Stone, Patrick
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- 2020
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11. An online international comparison of thresholds for triggering a negative response to the “Surprise Question”: a study protocol
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White, Nicola, Oostendorp, Linda, Vickerstaff, Victoria, Gerlach, Christina, Engels, Yvonne, Maessen, Maud, Tomlinson, Christopher, Wens, Johan, Leysen, Bert, Biasco, Guido, Zambrano, Sofia, Eychmüller, Steffen, Avgerinou, Christina, Chattat, Rabih, Ottoboni, Giovanni, Veldhoven, Carel, and Stone, Patrick
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- 2019
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12. Die anderen und ich: Ansprüche an die interprofessionelle Zusammenarbeit
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Fliedner, Monica C. and Eychmüller, Steffen
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- 2016
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13. Compassionate communities: How to assess their benefit? A protocol of a collaborative study between different countries.
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González-Jaramillo, Valentina, Krikorian, Alicia, Tripodoro, Vilma, Jorge, Margarita, Zambrano, Sofia C., López, Francy, Vélez, Maria Clara, Noguera, Tatiana, Orellana, Sebastián, Montilla, Silvina, Christen-Cevallos Rosero, Andri, and Eychmüller, Steffen
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INTERNATIONAL relations ,COMMUNITIES ,HEALTH outcome assessment ,PUBLIC health ,COMPASSION ,GOVERNMENT programs ,INTERPROFESSIONAL relations ,PALLIATIVE treatment - Abstract
Background: Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question. Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs. Design: Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland). Methods and analysis: To identifying the set of core outcomes, which is the first step in developing the CC evaluation model, five phases will follow: online meetings, literature review, fieldwork, Delphi survey, and social transfer. We will involve members of the local communities of Bern, Buenos Aires, and Medellin at three different levels: (1) citizens (e.g. patients, caregivers, and family members), (2) organizations and institutions involved in the program implementation (e.g. health care organizations, churches, non-governmental organizations, and schools), and (3) political and governmental sectors. Ethics: The study will be conducted following existing international regulations and guidance such as the Declaration of Helsinki. The ethics committee of Pallium Latin America and the ethics committee of the canton of Bern considered our application exempt from the need for approval. Ethics approval in Bern and Buenos Aires is in the process of being obtained. The ethics committee of the Pontifical Bolivarian University approved this protocol. Discussion: We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development. [ABSTRACT FROM AUTHOR]
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- 2023
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14. Applications of Machine Learning in Palliative Care: A Systematic Review.
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Vu, Erwin, Steinmann, Nina, Schröder, Christina, Förster, Robert, Aebersold, Daniel M., Eychmüller, Steffen, Cihoric, Nikola, Hertler, Caroline, Windisch, Paul, and Zwahlen, Daniel R.
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DEEP learning ,DATA curation ,SYSTEMATIC reviews ,NATURAL language processing ,MACHINE learning ,ARTIFICIAL intelligence ,RESEARCH funding ,MEDLINE ,ARTIFICIAL neural networks ,PALLIATIVE treatment - Abstract
Simple Summary: To investigate the adoption of machine learning in palliative care research and clinical practice, we systematically searched for published research papers on the topic. We found several publications that used different kinds of machine learning in palliative care for different use cases. However, on average, there needs to be more rigorous testing of the models to ensure that they work well in different settings. Objective: To summarize the available literature on using machine learning (ML) for palliative care practice as well as research and to assess the adherence of the published studies to the most important ML best practices. Methods: The MEDLINE database was searched for the use of ML in palliative care practice or research, and the records were screened according to PRISMA guidelines. Results: In total, 22 publications using machine learning for mortality prediction (n = 15), data annotation (n = 5), predicting morbidity under palliative therapy (n = 1), and predicting response to palliative therapy (n = 1) were included. Publications used a variety of supervised or unsupervised models, but mostly tree-based classifiers and neural networks. Two publications had code uploaded to a public repository, and one publication uploaded the dataset. Conclusions: Machine learning in palliative care is mainly used to predict mortality. Similarly to other applications of ML, external test sets and prospective validations are the exception. [ABSTRACT FROM AUTHOR]
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- 2023
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15. Quality of care as an individual concept: Proposition of a three-level concept for clinical practice
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Ebneter, Andreas Samuel, Vonlanthen, Ronald, and Eychmueller, Steffen
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- 2022
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16. International palliative care experts’ view on phenomena indicating the last hours and days of life
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Domeisen Benedetti, Franzisca, Ostgathe, Christoph, Clark, Jean, Costantini, Massimo, Daud, Maria Laura, Grossenbacher-Gschwend, Barbara, Latten, Richard, Lindqvist, Olav, Peternelj, Andreja, Schuler, Stefanie, Tal, Kali, van der Heide, Agnes, Eychmüller, Steffen, and on behalf of OPCARE9
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- 2013
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17. O.5.4 - Identifying the essentials of communicating about imminent death from key stakeholders’ perspectives: Presenter(s): Sibylle J. Felber, University Centre for Palliative Care, Inselspital, University Hospital Bern, Switzerland
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Guffi, Tommaso, Brem, Beate G., Schmitz, Felix M., Schnabel, Kai P., Schär, Sissel Guttormsen, Eychmüller, Steffen, and Zambrano, Sofia C.
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- 2023
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18. An online international comparison of palliative care identification in primary care using the Surprise Question.
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White, Nicola, Oostendorp, Linda JM, Vickerstaff, Victoria, Gerlach, Christina, Engels, Yvonne, Maessen, Maud, Tomlinson, Christopher, Wens, Johan, Leysen, Bert, Biasco, Guido, Zambrano, Sofia, Eychmüller, Steffen, Avgerinou, Christina, Chattat, Rabih, Ottoboni, Giovanni, Veldhoven, Carel, and Stone, Patrick
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SURVIVAL ,STATISTICS ,LIFE expectancy ,CROSS-sectional method ,MULTIVARIATE analysis ,PHYSICIANS' attitudes ,REGRESSION analysis ,PRIMARY health care ,COMPARATIVE studies ,CASE studies ,PALLIATIVE treatment - Abstract
Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]
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- 2022
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19. Kommunikation von Prognose und Erwartungen bei fortgeschrittenen Erkrankungen – eine Gratwanderung in der Praxis.
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Eychmüller, Steffen, Ramseier, Friederike, and Zürcher, Claudia
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PALLIATIVE treatment , *PROGNOSIS - Abstract
To prepare the end of life, to plan important things, to spend the remaining time of life not only with medical treatments, but to live – these are frequently expressed wishes of people with progressive diseases. Prognostic statements are feared by professionals. At the same time, when talking about what lies ahead for those affected, professionals very often make over-optimistic promises. A broader definition of the term prognosis as well as a careful handling of expectations can help to define realistic goals together. [ABSTRACT FROM AUTHOR]
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- 2021
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20. Telemedizin in der Palliative Care: Digitale Kommunikation in einem beziehungsbasierten Fachgebiet – ist das sinnvoll?
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Ebneter, Andreas Samuel, Fliedner, Monica, Trapp, Daniela, Ramseier, Friederike, Sauter, Thomas C., and Eychmüller, Steffen
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DIGITAL health ,TELEMEDICINE ,PALLIATIVE treatment - Abstract
Copyright of Praxis (16618157) is the property of Aerzteverlag medinfo AG and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2021
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21. Compassionate Cities: Stärkung der sozialen Ressourcen in den Gemeinden für ein gemeinsam getragenes Lebensende.
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Michel, Claudia, Felber, Sibylle J., Affolter, Barbara, Greusing, Marie-Hélène, and Eychmüller, Steffen
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ADVANCE directives (Medical care) ,CAREGIVERS ,PALLIATIVE treatment ,URBAN community development - Abstract
Copyright of Praxis (16618157) is the property of Aerzteverlag medinfo AG and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2021
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22. Impact of home-based palliative care on health care costs and hospital use: A systematic review.
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Gonzalez-Jaramillo, Valentina, Fuhrer, Valérie, Gonzalez-Jaramillo, Nathalia, Kopp-Heim, Doris, Eychmüller, Steffen, and Maessen, Maud
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HOSPITALS ,RESEARCH ,NURSING specialties ,HOME care services ,RESEARCH methodology ,SYSTEMATIC reviews ,MEDICAL care costs ,MEDICAL cooperation ,EVALUATION research ,COMPARATIVE studies ,HOSPICE nurses ,PALLIATIVE treatment - Abstract
Objective: To assess the effectiveness of home-based palliative care (HBPC) on reducing hospital visits and whether HBPC lowered health care cost.Method: We searched six bibliographic databases (Embase (Ovid); Cochrane Central Register of Controlled Trials; Medline (Ovid); PubMed; Web of Science Core Collection; and, CINAHL) until February 2019 and performed a narrative synthesis of our findings.Results: Of the 1,426 identified references, 21 articles based on 19 unique studies met our inclusion criteria, which involved 92,000 participants. In both oncological and non-oncological patients, HBPC consistently reduced the number of hospital visits and their length, as well as hospitalization costs and overall health care costs. Even though home-treated patients consumed more outpatient resources, a higher saving in the hospital costs counterbalanced this. The reduction in overall health care costs was most noticeable for study periods closer to death, with greater reductions in the last 2 months, last month, and last two weeks of life.Significance Of Results: Stakeholders should recognize HBPC as an intervention that decreases patient care costs at end of life and therefore health care providers should assess the preferences of patients nearing the end-of-life to identify those who will benefit most from HBPC. [ABSTRACT FROM AUTHOR]- Published
- 2021
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23. Single early palliative care intervention added to usual oncology care for patients with advanced cancer: A randomized controlled trial (SENS Trial).
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Eychmüller, Steffen, Zwahlen, Susanne, Fliedner, Monica C, Jüni, Peter, Aebersold, Daniel M, Aujesky, Drahomir, Fey, Martin F, Maessen, Maud, and Trelle, Sven
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TUMOR treatment , *PREVENTION of psychological stress , *RESEARCH , *MEDICAL cooperation , *TUMOR classification , *RANDOMIZED controlled trials , *COMPARATIVE studies , *QUALITY of life , *HEALTH care teams , *QUESTIONNAIRES , *PALLIATIVE treatment , *CANCER patient medical care , *EARLY medical intervention , *MEDICAL needs assessment - Abstract
Background: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. Aims: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. Design: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. Setting/participants: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy–General Questionnaire. Results: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. Conclusion: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early. [ABSTRACT FROM AUTHOR]
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- 2021
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24. Clinically significant bleeding in incurable cancer patients: effectiveness of hemostatic radiotherapy
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Cihoric Nikola, Crowe Susanne, Eychmüller Steffen, Aebersold Daniel M, and Ghadjar Pirus
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Cancer ,Bleeding ,Hemostatic ,Palliative ,Radiotherapy ,Medical physics. Medical radiology. Nuclear medicine ,R895-920 ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,RC254-282 - Abstract
Abstract Background This study was performed to evaluate the outcome after hemostatic radiotherapy (RT) of significant bleeding in incurable cancer patients. Methods Patients treated by hemostatic RT between November 2006 and February 2010 were retrospectively analyzed. Bleeding was assessed according to the World Health Organization (WHO) scale (grade 0 = no bleeding, 1 = petechial bleeding, 2 = clinically significant bleeding, 3 = bleeding requiring transfusion, 4 = bleeding associated with fatality). The primary endpoint was bleeding at the end of RT. Key secondary endpoints included overall survival (OS) and acute toxicity. The bleeding score before and after RT were compared using the Wilcoxon signed rank test. Time to event endpoints were estimated using the Kaplan Meier method. Results Overall 62 patients were analyzed including 1 patient whose benign cause of bleeding was pseudomyxoma peritonei. Median age was 66 (range, 37–93) years. Before RT, bleeding was graded as 2 and 3 in 24 (39%) and 38 (61%) patients, respectively. A median dose of 20 (range, 5–45) Gy of hemostatic RT was applied to the bleeding site. At the end of RT, there was a statistically significant difference in bleeding (p n = 39), 1 ( n = 12), 2 ( n = 6), 3 ( n = 4) and 4 (n = 1). With a median follow-up of 19.3 (range, 0.3-19.3) months, the 6-month OS rate was 43%. Forty patients died (65%); 5 due to bleeding. No grade 3 or above acute toxicity was observed. Conclusions Hemostatic RT seems to be a safe and effective treatment for clinically and statistically significantly reducing bleeding in incurable cancer patients.
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- 2012
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25. Does Time for (in)Direct Nursing Care Activities at the End of Life for Patients With or Without Specialized Palliative Care in a University Hospital Differ? A Retrospective Analysis.
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Fliedner, Monica C., Hagemann, Monika, Eychmüller, Steffen, King, Cynthia, Lohrmann, Christa, Halfens, Ruud J. G., and Schols, Jos M. G. A.
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Background: Nurses' end of life (EoL) care focuses on direct (eg, physical) and indirect (e,g, coordination) care. Little is known about how much time nurses actually devote to these activities and if activities change due to support by specialized palliative care (SPC) in hospitalized patients. Aims: (1) Comparing care time for EoL patients receiving SPC to usual palliative care (UPC);(2) Comparing time spent for direct/indirect care in the SPC group before and after SPC. Methods: Retrospective observational study; nursing care time for EoL patients based on tacs® data using nonparametric and parametric tests. The Swiss data method tacs measures (in)direct nursing care time for monitoring and cost analyses. Results: Analysis of tacs® data (UPC, n = 642; SPC, n = 104) during hospitalization before death in 2015. Overall, SPC patients had higher tacs® than UPC patients by 40 direct (95% confidence interval [CI]: 5.7-75, P =.023) and 14 indirect tacs® (95% CI: 6.0-23, P <.001). No difference for tacs® by day, as SPC patients were treated for a longer time (mean number of days 7.2 vs 16, P <.001).Subanalysis for SPC patients showed increased direct care time on the day of and after SPC (P <.001), whereas indirect care time increased only on the day of SPC. Conclusions: This study gives insight into nurses' time for (in)direct care activities with/without SPC before death. The higher (in)direct nursing care time in SPC patients compared to UPC may reflect higher complexity. Consensus-based measurements to monitor nurses' care activities may be helpful for benchmarking or reimbursement analysis. [ABSTRACT FROM AUTHOR]
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- 2020
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26. Unmet device reprogramming needs at the end of life among patients with implantable cardioverter defibrillator: A systematic review and meta-analysis.
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Gonzalez-Jaramillo, Valentina, Sobanski, Piotr, Calvache, Jose A, Arenas-Ochoa, Luisa F, Franco, Oscar H, Hunziker, Lukas, Eychmüller, Steffen, and Maessen, Maud
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PREVENTION of psychological stress ,CARDIAC pacing ,CARDIOGENIC shock ,CINAHL database ,CONFIDENCE intervals ,HEART failure ,IMPLANTABLE cardioverter-defibrillators ,INFORMATION storage & retrieval systems ,MEDICAL databases ,MEDICAL information storage & retrieval systems ,PSYCHOLOGY information storage & retrieval systems ,MEDICAL needs assessment ,MEDICAL protocols ,MEDLINE ,META-analysis ,TERMINAL care ,TERMINALLY ill ,SYSTEMATIC reviews ,DECISION making in clinical medicine ,ADVANCE directives (Medical care) ,MULTIPLE regression analysis ,DESCRIPTIVE statistics - Abstract
Background: Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function. Aim: To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population. Design: Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis. Data sources: We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019. Results: Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%–36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%–3%). Conclusions: The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive. [ABSTRACT FROM AUTHOR]
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- 2020
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27. Using the Term "Palliative Care": International Survey of How Palliative Care Researchers and Academics Perceive the Term "Palliative Care".
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Zambrano, Sofia C., Centeno, Carlos, Larkin, Philip J., and Eychmüller, Steffen
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AGE distribution ,ATTITUDE (Psychology) ,CONTENT analysis ,MEDICAL personnel ,NONPARAMETRIC statistics ,PALLIATIVE treatment ,PHYSICIANS ,QUESTIONNAIRES ,TERMS & phrases ,CROSS-sectional method ,COLLEGE teacher attitudes ,DESCRIPTIVE statistics - Abstract
Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored. Objective: To explore how PC researchers/academics perceive the term is the objective of this study. Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis. Participants: Academics and researchers in PC were the participants in this study. Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve. Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name. [ABSTRACT FROM AUTHOR]
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- 2020
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28. Compassion training: Towards a better understanding of patients through self‐exposure.
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Felber, Sibylle Jeanine, Lerch, Seraina Petra, Bauer, Daniel, Liaudet, Florence, Eychmüller, Steffen, and Lörwald, Andrea
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MINDFULNESS ,SELF-perception ,MOTIVATIONAL interviewing ,MEDICAL students ,PHYSICIAN-patient relations ,SIMULATION methods in education ,COMMUNICATION ,MEDICAL education - Abstract
The article provides information on an elective blended course designed and piloted by an interdisciplinary team at the University of Bern with one day of classroom training to improve sixth-year medical students' compassion in patient-physician communication. Topics discussed include the learning goals of the pilot, preparatory reading made, and lessons learned from the course.
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- 2023
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29. An early palliative care intervention can be confronting but reassuring: A qualitative study on the experiences of patients with advanced cancer.
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Fliedner, Monica, Zambrano, Sofia, Schols, Jos MGA, Bakitas, Marie, Lohrmann, Christa, Halfens, Ruud JG, and Eychmüller, Steffen
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TUMOR diagnosis ,TUMOR treatment ,CANCER patient psychology ,COGNITION ,CONTENT analysis ,CONVERSATION ,DECISION making ,EMOTIONS ,INTERVIEWING ,RESEARCH methodology ,PATIENT-family relations ,HEALTH outcome assessment ,PALLIATIVE treatment ,SOCIAL networks ,PSYCHOLOGICAL stress ,TUMOR classification ,ADVANCE directives (Medical care) ,QUALITATIVE research ,SOCIAL support ,EARLY medical intervention - Abstract
Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients' perspectives. However, little is known about how patients' experience such interventions. Aim: To explore advanced cancer patients' experiences with a structured early palliative care intervention, its acceptability and impact on the patients' life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of "Symptoms, End-of-life decisions, Network, Support," a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel "confronting" but with the right timing it can be confirming and facilitate family conversations. Patients' personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like "Symptoms, End-of-life decisions, Network, Support" may provoke emotions and feel "confrontational" often because this is the first time when issues about one's end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care. [ABSTRACT FROM AUTHOR]
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- 2019
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30. Vorausplanung am Lebensende - eine kritische Reflexion für die Praxis.
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Eychmüller, Steffen and Felber, Sibylie
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- 2018
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31. The impact of early palliative care on the quality of care during the last days of life: what does the evidence say?
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Zambrano, Sofia C., Fliedner, Monica C., and Eychmüller, Steffen
- Abstract
Purpose of review The aim of this review is to critically appraise the existing evidence on ‘early palliative care’ (EPC), discuss its relationship with advance care planning, and to reflect on the impact of EPC on the quality of care provided during the last days of life. Recent findings There are indicators that EPC may help to avoid aggressive treatment, shorten hospital stay, improve overall quality of life, and to see more frequently dying and death at the preferred place of care. Summary The evidence from randomized controlled trials supports the integration of palliative care early in the disease trajectory. However, in terms of outcomes and quality indicators for care in the last days of life, evidence is still lacking. Predominantly, when it comes to the outcomes which may be more difficult to assess, such as spiritual aspects, or the social network, for which more comprehensive information is needed. These outcomes should not be neglected in palliative care studies, particularly when they can provide meaningful information about patient and family adjustment, and focus on psychosocial aspects rather than physical symptom control. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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32. Das breite Spektrum der Palliative Care.
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Blum, David and Eychmüller, Steffen
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- 2021
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33. Endstation Notfallstation: Perzeption und Rezeption des Begriffs «palliativer Patient» sowie Ansätze zur Verbesserung der interdisziplinären Zusammenarbeit - ein Survey unter notfallmedizinischem Personal auf einer Schweizer Notfallstation
- Author
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Klenk, Laurence, lucolano, Nicoletta M., Braun, Christian Tasso, Exadaktylos, Aristomenis K., and Eychmüller, Steffen
- Abstract
Copyright of Praxis (16618157) is the property of Aerzteverlag medinfo AG and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2015
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34. SENS macht Sinn -- Der Weg zu einer neuen Assessment-Struktur in der Palliative Care.
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Eychmüller, Steffen
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- 2012
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35. Palliative Care.
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Eychmüller, Steffen
- Published
- 2018
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36. Zeitschrift für Palliativmedizin.
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Eychmüller, Steffen
- Published
- 2013
37. Palliative Care.
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Eychmüller, Steffen
- Published
- 2012
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38. [Can we learn to die?]
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Seiler A, Hertler C, Evstigneev SR, Schettle M, Eychmüller S, Gärtner J, Eckstein S, Camartin C, Müller B, Buschor-Bichsel M, Fusi-Schmidhauser T, Hauswirth Siegenthaler C, Boothe B, Peng-Keller S, and Blum D
- Subjects
- Humans, Terminal Care psychology, Communication, Switzerland, Fear, Attitude to Death, Physician-Patient Relations
- Abstract
Introduction: The topic of death and the dying is a crucial aspect of patient care, especially for individuals with terminal illnesses. However, discussions about death and dying are often avoided during patient interactions. In this article, our aim is to explore the reasons behind our fear of death and dying and to assess the importance of addressing these issues in shaping and cultivating relationships with our patients and in our personal lives. We argue that being open to impermanence is a valuable tool in our work with patients and their families and should be integrated into conversations with them. Furthermore, discussions about death and dying should play a central role in medical and nursing education as well as professional development., Competing Interests: Die Autorinnen und Autoren haben keine Interessenkonflikte im Zusammenhang mit diesem Artikel deklariert, (© 2024 Aerzteverlag medinfo AG.)
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- 2024
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39. Outcomes of care during the last month of life: a systematic review to inform the development of a core outcome set.
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González-Jaramillo V, Luethi N, Egloff M, Roa-Díaz ZM, González-Jaramillo N, Díaz-Ríos C, Christen-Cevallos Rosero A, Dodd S, Eychmüller S, and Zambrano SC
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- Humans, Palliative Care, Terminal Care standards, Outcome Assessment, Health Care
- Abstract
Background: To date, there is a lack of standardization and consensus on which outcomes are central to assess the care provided to patients in the last month of life. Therefore, we aimed to conduct a systematic review to identify relevant outcomes to inform the development of a core outcome set for the best care for the dying person., Methods: We conducted a systematic review of outcomes reported in the scientific literature about the care for the dying person in the last month of life. We searched for peer-reviewed studies published before February 2022 in four electronic databases. To categorise the outcomes, we employed the taxonomy developed by the "Core Outcome Measures in Effectiveness Trials" collaboration., Results: Out of the 2,933 articles retrieved, 619 were included for analyses. The majority of studies (71%) were retrospective and with data extracted from chart reviews (71%). We extracted 1,951 outcomes in total, from which, after deletion of repeated outcomes, we identified 256 unique ones. The most frequently assessed outcomes were those related to medication or therapeutic interventions and those to hospital/healthcare use. Outcomes related to psychosocial wellbeing were rarely assessed. The closer to death, the less frequently the outcomes were studied., Conclusions: Most outcomes were related to medical interventions or to hospital use. Only a few studies focused on other components of integrated care such as psychosocial aspects. It remains to be defined which of these outcomes are fundamental to achieve the best care for the dying.
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- 2024
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40. An economic evaluation of an early palliative care intervention among patients with advanced cancer.
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Maessen M, Fliedner MC, Gahl B, Maier M, Aebersold DM, Zwahlen S, and Eychmüller S
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- Humans, Cost-Benefit Analysis, Quality of Life, Behavior Therapy, Palliative Care, Neoplasms therapy
- Abstract
Background: Early integration of palliative care into oncology care has shown positive effects on patient symptoms and quality of life. It may also reduce health care costs. However given the heterogeneity of settings and interventions and the lack of information on the minimally effective dose for influencing care utilisation and costs, it remains uncertain whether early palliative care reduces costs., Objectives: We sought to determine whether an early palliative care intervention integrated in usual oncology care in a Swiss hospital setting reduced utilisation and costs of health care in the last month of life when compared with usual oncology care alone., Methods: We performed a cost-consequences analysis alongside a multicentre trial. We extracted costs from administrative health insurance data and health care utilisation from family caregiver surveys to compare two study arms: usual oncology care and usual oncology care plus the palliative care intervention. The intervention consisted of a single-structured, multiprofessional conversation with the patient about symptoms, end-of-life decisions, network building and support for carers (SENS). The early palliative care intervention was performed within 16 weeks of the diagnosis of a tumour stage not amenable or responsive to curative treatment., Results: We included 58 participants with advanced cancer in our economic evaluation study. Median overall health care costs in the last month of life were 7892 Swiss Francs (CHF) (interquartile range: CHF 5637-13,489) in the intervention arm and CHF 8492 [CHF 5411-12,012] in the control arm. The average total intervention treatment cost CHF 380 per patient. Integrating an early palliative care intervention into usual oncology care showed no significant difference in health care utilisation or overall health care costs between intervention and control arms (p = 0.98)., Conclusion: Although early palliative care is often presented as a cost-reducing care service, we could not show a significant effect of the SENS intervention on health care utilisation and costs in the last month of life. However, it may be that the intervention was not intensive enough, the timeframe too short or the study population too small for measurable effects. Patients appreciated the intervention. Single-structured early palliative care interventions are easy to implement in clinical practice and present low treatment costs. Further research about the economic impact of early palliative care should focus on extracting large, detailed cost databases showing potential shifts in cost and cost-effectiveness., Clinical Trials: gov Identifier: NCT01983956.
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- 2024
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41. Palliative sedation - revised recommendations.
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Beauverd M, Mazzoli M, Pralong J, Tomczyk M, Eychmüller S, and Gaertner J
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- Humans, Palliative Care methods, Uncertainty, Health Personnel, Communication, Hypnotics and Sedatives therapeutic use, Physicians, Deep Sedation methods, Terminal Care methods
- Abstract
Palliative sedation is defined as the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) to relieve the burden of otherwise intractable suffering in a manner ethically acceptable to the patient, their family, and healthcare providers. In Switzerland, the prevalence of continuous deep sedation until death increased from 4.7% in 2001 to 17.5% of all deceased in 2013, depending on the research method used and on regional variations. Yet, these numbers may be overestimated due to a lack of understanding of the term "continuous deep sedation" by for example respondents of the questionnaire-based study. Inadequately trained and inexperienced healthcare professionals may incorrectly or inappropriately perform palliative sedation due to uncertainties regarding its definitions and practice. Therefore, the expert members of the Bigorio group and the authors of this manuscript believe that national recommendations should be published and made available to healthcare professionals to provide practical, terminological, and ethical guidance. The Bigorio group is the working group of the Swiss Palliative Care Society whose task is to publish clinical recommendations at a national level in Switzerland. These recommendations aim to provide guidance on the most critical questions and issues related to palliative sedation. The Swiss Society of Palliative Care (palliative.ch) mandated a writing board comprising four clinical experts (three physicians and one ethicist) and two national academic experts to revise the 2005 Bigorio guidelines. A first draft was created based on a narrative literature review, which was internally reviewed by five academic institutions (Lausanne, Geneva, Bern, Zürich, and Basel) and the heads of all working groups of the Swiss Society of Palliative Care before finalising the guidelines. The following themes are discussed regarding palliative sedation: (a) definitions and clinical aspects, (b) the decision-making process, (c) communication with patients and families, (d) patient monitoring, (e) pharmacological approaches, and (f) ethical and controversial issues. Palliative sedation must be practised with clinical and ethical accuracy and competence to avoid harm and ethically questionable use. Specialist palliative care teams should be consulted before initiating palliative sedation to avoid overlooking other potential treatment options for the patient's symptoms and suffering.
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- 2024
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42. Talking about dying and death: Essentials of communicating about approaching death from the perspective of major stakeholders.
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Felber SJ, Guffi T, Brem BG, Schmitz FM, Schnabel KP, Guttormsen Schär S, Eychmüller S, and Zambrano SC
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Objectives: Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders., Methods: Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups ( n = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically., Results: Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others., Significance of Results: Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.
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- 2023
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43. Palliative care and COVID-19: a bibliometric analysis.
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Bernardis A, Gonzalez-Jaramillo V, Ebneter AS, and Eychmüller S
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Objective: To assess the impact of COVID-19 on the palliative care (PC) publication trend in the last 10 years and the collaboration between countries and main topics that were discussed in the papers., Methods: We used Scopus to identify publications on PC between 2012 and 2021 and publications about PC and COVID-19 between 2020 and 2021. We used VOSviewer to assess the main topics using the keywords from the papers and to assess country collaboration., Results: 1937 publications resulted. An increase in publications about PC was observed during the pandemic, only partially explained by OVID-19-related publications. Cancer-related PC publications were the ones with the most marked increase. We identified six clusters in the distribution of the keywords: bioethics, cancer, nursing home/telemedicine, public health, caring and PC following the WHO definition. The countries with higher number of publications were the United States and England., Conclusion: We showed an increase in the number of PC publications in the last 2 years that was only partially explained by COVID-19-related publications. Most of the publications increase was due to cancer-related publications, since, during the time of the pandemic, publications on cancer and PC increased markedly, while those on heart failure, lung disease and dementia, remained constant., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2023
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44. Unmet Needs in Patients With Heart Failure: The Importance of Palliative Care in a Heart Failure Clinic.
- Author
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Gonzalez-Jaramillo V, Maessen M, Luethi N, Guyer J, Hunziker L, Eychmüller S, and Zambrano SC
- Abstract
Background: There are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic., Methods: Secondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24-48 min)., Results: Participants ( n = 31) had a median age of 64 years (IQR 56-77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) "feeling well-informed but missing essential discussions", (II) "although feeling mostly satisfied with the care, remaining with unmet care needs", and (III) "fearing a referral to palliative care but acknowledging its importance"., Conclusion: Although patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Gonzalez-Jaramillo, Maessen, Luethi, Guyer, Hunziker, Eychmüller and Zambrano.)
- Published
- 2022
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45. [The Broad Spectrum of Palliative Care].
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Blum D and Eychmüller S
- Subjects
- Humans, Palliative Care
- Published
- 2021
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46. [Telemedicine in Palliative Care: Digital Communication in a Relationship-Based Speciality - Does It Make Sense?]
- Author
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Ebneter AS, Fliedner M, Trapp D, Ramseier F, Sauter TC, and Eychmüller S
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- Communication, Humans, Quality of Life, Referral and Consultation, Palliative Care, Telemedicine
- Abstract
Telemedicine in Palliative Care: Digital Communication in a Relationship-Based Speciality - Does It Make Sense? Abstract. Telemedicine in palliative care is established especially in countries with large geographical distances. Digital forms of communication (virtual consultations) are most frequently used and well-accepted by patients and caregivers. The main benefit lies in the reduction of the access barrier in the outpatient setting. Advantages are stress reduction for patients (travel, accessibility) and reduction in the care burden for relatives. Additional benefits compared to the physical visit for symptom-control, quality of life and costs are unclear. Risks are influenced by the lack of physical interaction and data security. To what extent telepalliative care makes sense in a high-density health system is difficult to predict. It is therefore important to use these new tools in a carefully adapted and scientifically verified way.
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- 2021
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47. [Compassionate Cities: Strengthening Social Resources in Communities for Mutual Support at the End of Life].
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Michel C, Felber SJ, Affolter B, Greusing MH, and Eychmüller S
- Subjects
- Aged, Cities, Death, Humans, Palliative Care, Social Support, Switzerland, Advance Care Planning, Terminal Care
- Abstract
Compassionate Cities: Strengthening Social Resources in Communities for Mutual Support at the End of Life Abstract. People at the end of life often wish to remain at home for as long as possible. To make this possible to a greater extent, not only health professionals who accompany those affected and their relatives are needed, but also educational programmes to strengthen health literacy at the end of life. Within the framework of the project "Compassionate City Lab of the Bernese People", experiences in dealing with the end of life were collected and published, and a course on advance care planning for elderly people was developed. The project is funded by Health Promotion Switzerland and supported by a partnership between Bernese institutions of higher education, specialised palliative care and primary care, the community, and volunteers in the city of Bern and the Bernese Oberland.
- Published
- 2021
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48. [Communicating Prognosis and Expectations in Advanced Disease - A Balancing Act in Practice].
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Eychmüller S, Ramseier F, and Zürcher C
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- Humans, Prognosis, Motivation, Palliative Care
- Abstract
Communicating Prognosis and Expectations in Advanced Disease - A Balancing Act in Practice Abstract. To prepare the end of life, to plan important things, to spend the remaining time of life not only with medical treatments, but to live - these are frequently expressed wishes of people with progressive diseases. Prognostic statements are feared by professionals. At the same time, when talking about what lies ahead for those affected, professionals very often make over-optimistic promises. A broader definition of the term prognosis as well as a careful handling of expectations can help to define realistic goals together.
- Published
- 2021
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49. Early palliative care integration trial: consultation content and interaction dynamics.
- Author
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Kleiner N, Zambrano SC, Eychmüller S, and Zwahlen S
- Abstract
Objectives: Evidence for the positive impact of the early integration of palliative care (EPC) continues to grow. Less is known about how EPC improves patient and family outcomes, including the content of EPC consultations. Therefore, we aimed to better understand the content of EPC consultations including areas addressed, percentage covered per area and interaction style., Methods: As part of a trial in which EPC in addition to oncology care was compared with oncology care alone, we audio recorded 10 interventions. The palliative care team led the interventions using SENS, a conversation structure, which stands for: Symptoms, End-of-life decision-making, Network and Support. We employed two approaches to analysis: the Roter interaction analysis system (RIAS) to analyse interaction dynamics and SENS as a framework for content analysis., Results: Physician-patient communication covered 91% of the interaction. According to RIAS, the consultations were evenly dominated between physicians and patients (ratio=1.04) and highly patient-centred (ratio=1.26). Content wise, rapport was the largest category covering 27% of the consultation, followed by decision-making (21%) and by symptom assessment/management (17%) including 8.1% for physical symptoms and 5.4% for psychosocial aspects. Network discussions covered 17%, and lastly, support for the family 7%., Conclusions: EPC consultations cover a variety of end-of-life topics while putting a high value in establishing rapport, developing a relationship with patients, and on providing reassurance and positive emotional talk. EPC consultations using predefined structures may guarantee that a minimum of important aspects are addressed in a way in which the relationship with the patient remains at the centre., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2021
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50. Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.
- Author
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Zambrano SC, Haugen DF, van der Heide A, Tripodoro VA, Ellershaw J, Fürst CJ, Voltz R, Mason S, Daud ML, De Simone G, Kremeike K, Halfdanardottir SI, Sigurdardottir V, Johnson J, Allan S, Hafeez H, Simões C, Sigurdardottir KR, Rasmussen BH, Williamson P, and Eychmüller S
- Subjects
- Delphi Technique, Humans, Palliative Care methods, Qualitative Research, Systematic Reviews as Topic, Treatment Outcome, Clinical Protocols, Outcome Assessment, Health Care methods, Palliative Care standards
- Abstract
Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person., Methods: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set., Discussion: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.
- Published
- 2020
- Full Text
- View/download PDF
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