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6. Palliative Sedierung

Author

Surges, Séverine Marie, primary, Brunsch, Holger, additional, Jaspers, Birgit, additional, and Radbruch, Lukas, additional

Published
2023
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8. Palliativversorgung

Author

Ateş, Gülay, Jaspers, Birgit, Peuten, Sarah, Schneider, Werner, Radbruch, Lukas, Klauber, Jürgen, editor, Wasem, Jürgen, editor, Beivers, Andreas, editor, and Mostert, Carina, editor

Published
2021
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11. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation : An international Delphi study

Author

Surges, Séverine M, Brunsch, Holger, Jaspers, Birgit, Apostolidis, Kathi, Cardone, Antonella, Centeno, Carlos, Cherny, Nathan, Csikós, Àgnes, Fainsinger, Robin, Garralda, Eduardo, Ling, Julie, Menten, Johan, Mercadante, Sebastiano, Mosoiu, Daniela, Payne, Sheila, Preston, Nancy, Van den Block, Lieve, Hasselaar, Jeroen, Radbruch, Lukas, Surges, Séverine M, Brunsch, Holger, Jaspers, Birgit, Apostolidis, Kathi, Cardone, Antonella, Centeno, Carlos, Cherny, Nathan, Csikós, Àgnes, Fainsinger, Robin, Garralda, Eduardo, Ling, Julie, Menten, Johan, Mercadante, Sebastiano, Mosoiu, Daniela, Payne, Sheila, Preston, Nancy, Van den Block, Lieve, Hasselaar, Jeroen, and Radbruch, Lukas

Abstract

Background: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. Aim: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. Design: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. Setting: European. Participants: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. Results: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. Conclusions: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

Published
2024

12. 'Not a panacea' - Expert perspectives on the concept of resilience and its potential for palliative care

Author

Maus, Katja, Peusquens, Frank, Kriegsmann-Rabe, Milena, Matthias, Julia-Katharina, Ateş, Gülay, Jaspers, Birgit, Geiser, Franziska, Radbruch, Lukas, Maus, Katja, Peusquens, Frank, Kriegsmann-Rabe, Milena, Matthias, Julia-Katharina, Ateş, Gülay, Jaspers, Birgit, Geiser, Franziska, and Radbruch, Lukas

Abstract

BACKGROUND Resilience is an increasingly used term in medicine and subject to various definitions, often not easy to grasp. There are established core concepts for patients receiving palliative care, for example, meaning in life, that have already been researched a lot. Resilience, relative to these concepts, is a new object of research in palliative care, where it has so far been used predominantly with regard to the well-being of teams. AIM To explore how experts in palliative care define the concept of resilience and its suitability for patients, significant others, and professionals. DESIGN Qualitative study using summarizing content analysis according to Mayring. SETTING/PARTICIPANTS Twenty-one health and social care professionals with expertise caring for persons with life-threatening/limiting illnesses and their relatives were interviewed in three individual interviews and four focus groups. All conversations were recorded, transcribed, coded via MAXQDA, and validated by another researcher. RESULTS Resilience has been described as something procedural, dynamic, individual, and flexible. In connection with well-known concepts such as posttraumatic growth or terms from the field of mindfulness, social environment or personal factors have also been linked to resilience. Resources such as spirituality can contribute to resilience, and resilience itself can function as a resource, for example, by contributing to quality of life. An active use of the term in practical work with patients or relatives is rare, but it is used in education or team measures. Limited lifespan can pose a challenge to an active use of the concept of resilience. CONCLUSION Resilience as a very individual approach provides added value to other core concepts of palliative care. Within the palliative context, the normative dimension of resilience must be well reflected. A broader definition of resilience is recommended, leaving room for everyone to find their own form of resilience. The concep

Published
2024

13. Quality of Life

Author

Radbruch, Lukas, Jaspers, Birgit, MacLeod, Roderick Duncan, editor, and Van den Block, Lieve, editor

Published
2019
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14. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study

Author

Surges, Séverine M, primary, Brunsch, Holger, additional, Jaspers, Birgit, additional, Apostolidis, Kathi, additional, Cardone, Antonella, additional, Centeno, Carlos, additional, Cherny, Nathan, additional, Csikós, Àgnes, additional, Fainsinger, Robin, additional, Garralda, Eduardo, additional, Ling, Julie, additional, Menten, Johan, additional, Mercadante, Sebastiano, additional, Mosoiu, Daniela, additional, Payne, Sheila, additional, Preston, Nancy, additional, Van den Block, Lieve, additional, Hasselaar, Jeroen, additional, and Radbruch, Lukas, additional

Published
2024
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17. Palliative Sedierung

Author

Surges, Séverine Marie, additional, Brunsch, Holger, additional, Jaspers, Birgit, additional, and Radbruch, Lukas, additional

Published
2023
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21. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study

Author

Surges, Severine Marie, primary, Brunsch, Holger, primary, Jaspers, Birgit, primary, Apostolidis, Kathi, primary, Cardone, Antonella, primary, Centeno, Carlos, primary, Cherny, Nathan, primary, Csikos, Agnes, primary, Fainsinger, Robin, primary, Garralda, Eduardo, primary, Ling, Julie, primary, Menten, Johan, primary, Mercadante, Sebastiano, primary, Mosoiu, Daniela, primary, Payne, Sheila, primary, Preston, Nancy, primary, Van den Block, Lieve, primary, Hasselaar, Jeroen, primary, and Radbruch, Lukas, primary

Published
2023
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26. Review of European Guidelines on Palliative Sedation: A Foundation for the Updating of the European Association for Palliative Care Framework

Author

Surges, Séverine M., primary, Garralda, Eduardo, additional, Jaspers, Birgit, additional, Brunsch, Holger, additional, Rijpstra, Maaike, additional, Hasselaar, Jeroen, additional, Van der Elst, Michaël, additional, Menten, Johan, additional, Csikós, Ágnes, additional, Mercadante, Sebastiano, additional, Mosoiu, Daniela, additional, Payne, Sheila, additional, Centeno, Carlos, additional, and Radbruch, Lukas, additional

Published
2022
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28. List of Contributors

Author

Abdel-Galil, Khalild, primary, Ahmed, Abdul, additional, Ahmed, Nabeela, additional, Aldridge, Thomas, additional, Andi, Kavin, additional, Al-Nawas, Bilal, additional, Arnaud, Eric, additional, Avery, Christopher M.E., additional, Bainbridge, Mark, additional, Beale, Victoria, additional, Bell, William H., additional, Berridge, Natasha Louise, additional, Blancher, Adam, additional, Block, Michael S., additional, Blythe, John N St. J, additional, Bodem, Jens, additional, Boffano, Paolo, additional, Borumandi, Farzad, additional, Bos, Rudolf Robert Maria, additional, Breeze, Major John, additional, Brennan, Peter A., additional, Brown, James, additional, Buntic, Rudolf F., additional, Bürger, Heinz, additional, Burton, Brady, additional, Carlson, Eric R., additional, Cascarini, Luke, additional, Cassidy, Siwan, additional, Chalmers, Alison, additional, Chapireau, David, additional, Cobb, Alistair R.M., additional, Colbert, Serryth, additional, Coyle, Margaret Jean, additional, Cuzalina, Angelo, additional, Dashow, Jason E., additional, Dhanda, Jag, additional, Drake, David, additional, Ehrlich, Alex D., additional, Ellis, Simon, additional, Evans, T. William, additional, Extence, Helen, additional, Farook, Shahme Ahamed, additional, Farrier, Jerry N., additional, Fasanmade, Adekunmi, additional, Fernandes, Rui P., additional, Forouzanfar, Tim, additional, Fretwurst, Tobias, additional, Frost, David E., additional, Johann Gaggl Sr., Alexander, additional, Gandhi, Rishi Kumar, additional, Gellrich, Nils-Claudius Bernhard, additional, George, Katherine, additional, Ghali, G.E., additional, Gilhooly, Michael, additional, Godden, Daryl R., additional, Gonzalez, Marianela, additional, Gottlieb, Jonathan B., additional, Alan Gremillion, Henry A., additional, Green, Ben C., additional, Gruber, Elizabeth Anne, additional, Guerrero, Cesar A., additional, Gupta, Rishi Jay, additional, Harrington, Kevin J., additional, Harris, Christopher, additional, Hebert, Andrea M., additional, Helman, Joseph, additional, Hoffmann, Jürgen, additional, Hoffmeister, Bodo, additional, Holmes, Simon, additional, Horn, Dominik, additional, Jaspers, Birgit, additional, Jundt, Gernot, additional, Kabala, Julian Eamon, additional, Kaban, Leonard B., additional, Kaleem, Arshad, additional, Kanatas, Anastasios, additional, Kelly, Charles Gerald, additional, Klasser, Gary D., additional, Kim, Beomjune B., additional, Koppel, David A., additional, Kübler, Norbert R., additional, Likhterov, Ilya, additional, Lloyd, Timothy William, additional, Loukota, Richard A., additional, Lubek, Joshua E., additional, Lyons, Andrew, additional, Mackenzie, Col. Neil, additional, Madani, Gitta, additional, Markiewicz, Michael R., additional, Matthews, Nigel Shaun, additional, McQuillan, Joe, additional, McGurk, Mark, additional, Mehrotra, Divya, additional, Mercer, Nigel Stuart George, additional, Mercuri, Louis Gerard, additional, Messiha, Ashraf, additional, Monje, Florencio, additional, Mujica, Elena V., additional, Mumford, Rachel Anne, additional, Murakami, Kenlchiro, additional, Nauck, Friedemann, additional, Naujokat, Hendrik, additional, Neukam, Friedrich-Wilhelm, additional, Obagi, Suzan, additional, Ord, Robert A., additional, Ort, Yirae, additional, Pabla, Ravinder, additional, Padwa, Bonnie L., additional, Patel, Stavan, additional, Penfold, Chris Neil, additional, Perenack, Jon D., additional, Powers, Michael P., additional, Puelacher, Wolfgang, additional, Quereshy, Faisal A., additional, Raguse, Jan D., additional, Rajapakse, Sujeev, additional, Ramchandani, Parkash L., additional, Resnick, Cory M., additional, Risk, Janet Mary, additional, Robinson, Stephen N., additional, Rodriguez, Eduardo D., additional, Rogers, Simon N., additional, Roodenburg, J.L.N., additional, Saeed, Nadeem, additional, Schache, Andrew Graeme, additional, Schendel, Stephen A., additional, Schliephake, Henning, additional, Schmelzeisen, Rainer, additional, Schmidt-Westhausen, Andrea Maria, additional, Seppänen-Kaijansinkko, Riitta, additional, Shaw, Richard J., additional, Sidebottom, Andrew J., additional, Singh, Mark K., additional, Singh, Rabindra P., additional, Sinn, Douglas P., additional, Smeele, Ludi E., additional, Smith, C. Blake, additional, Sommerlad, Brian, additional, Strietzel, Frank Peter, additional, Sugar, Adrian, additional, Takwale, Anita, additional, Taylor, Clark O., additional, Townley, William Arthur, additional, Turvey, Timothy A., additional, Urken, Mark L., additional, Van Eeden, Simon, additional, Wagner, Wilfried, additional, Whitfield, Peter C., additional, Will, Michael J., additional, Williams, Jonathan, additional, Wiltfang, Jörg, additional, Witherow, Helen, additional, Woerner, Jennifer E., additional, Wolf, Jeffrey S., additional, Wolford, Larry M., additional, Wong, Wai Lup, additional, Woods, Martin, additional, Yu, Peirong, additional, and Zimmerer, Rüdiger M., additional

Published
2017
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31. Autorenverzeichnis

Author

Nessizius, Stefan, primary, Rottensteiner, Cornelia, additional, Nydahl, Peter, additional, Beer, Ronny, additional, Beham, Susanne, additional, Bojic, Andja, additional, Brückner, Uta, additional, Brunner, Bianka, additional, Filipovic, Silke, additional, Graf, Thomas, additional, Hamader, Erich, additional, Herceg, Malvina, additional, Jäger, Manuel, additional, Jaspers, Birgit, additional, Klarmann, Silke, additional, Ladner, Armin, additional, Mayrhofer, Susanne, additional, Nauck, Friedemann, additional, Novak, Erich, additional, Pachernigg, Ulrike, additional, Panuschka, Judith, additional, Pieber, Karin, additional, Saczek, Boguslaw, additional, Sakka, Samir G., additional, Schlager, Barbara, additional, Stang, Peter, additional, and Schönherr, Gudrun Sylvest, additional

Published
2017
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33. Review of European Guidelines on Palliative Sedation: A Foundation for the Updating of the European Association for Palliative Care Framework

Author

Surges, Séverine M., Garralda, Eduardo, Jaspers, Birgit, Brunsch, Holger, Rijpstra, Maaike, Hasselaar, Jeroen, Van der Elst, Michaël, Menten, Johan, Csikós, Ágnes, Mercadante, Sebastiano, Mosoiu, Daniela, Payne, Sheila, Centeno, Carlos, Radbruch, Lukas, Surges, Séverine M., Garralda, Eduardo, Jaspers, Birgit, Brunsch, Holger, Rijpstra, Maaike, Hasselaar, Jeroen, Van der Elst, Michaël, Menten, Johan, Csikós, Ágnes, Mercadante, Sebastiano, Mosoiu, Daniela, Payne, Sheila, Centeno, Carlos, and Radbruch, Lukas

Abstract

In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to i

Published
2022

41. Effect of early palliative care for patients with glioblastoma (EPCOG): a randomised phase III clinical trial protocol

Author

Golla, Heidrun, Nettekoven, Charlotte, Clusmann, Hans, Herrlinger, Ulrich, Radbruch, Lukas, Vatter, Hartmut, Güresir, Erdem, Stock, Stephanie, Müller, Dirk, Civello, Daniele, Papachristou, Irini, Hellmich, Martin, Bausewein, Claudia, Hamacher, Stefanie, Voltz, Raymond, Goldbrunner, Roland, EPCOG study group, Bronger, Imke, Dederichs, Kerstin, Cavelius, Hildegard, Hiddemann, Sonja, Krumm, Norbert, Thamm, Christina, Tonn, Jörg-Christian, Delev, Daniel, Kumschlies, Marita, Langheimer, Manuela, Na, Chuh-Hyoun, Landwehr, Christiane, Schäfer, Niklas, Schaub, Christina, Stratmann, Claudia, Hüning, Kirsten, Jaspers, Birgit, Thon, Niklas, Hesse, Michaela, Franke, Isabel, Joshi, Melanie, Matte, Simone, Dreher, Lena, Fürtjes, Gina, Kochs, Sophia, Lenschow, Moritz, Melich, Patrick, Schröter, Catharina, Feddersen, Berend, Blaß, Bianca-Ioana, Cipriani, Debora, Heiland, Dieter Henrik, Heiland, Pamela, Jarc, Nadja, Koch, Nicole, Machein, Marcia Regina, Neidert, Nicolas, Nunez, Mateo Farina, Daniuk, Jolanda, Schnell, Oliver, Lauble, Bianca, Meer, Tina, Opitz, Saskia, Haberland, Birgit, Lehmann, Eva, Steinberger, Karla, Streitwieser, Sabine, Barth, Christoph, Lietke, Stefanie, Zimmerer, Christiane, Böhlke, Christopher, Becker, Gerhild, and Rolke, Roman

Subjects
medicine.medical_specialty, Palliative care, Anxiety, Time-to-Treatment, law.invention, early integration of palliative care, Randomized controlled trial, Quality of life, law, medicine, Humans, Cognitive Dysfunction, caregiver burden, Brain Neoplasms, business.industry, Palliative Care, glioblastoma, General Medicine, Caregiver burden, Survival Analysis, Aggression, Clinical trial, Affect, Mood, quality of life, Physical therapy, medicine.symptom, business, RCT, Declaration of Helsinki
Abstract

​IntroductionRandomised controlled trials (RCTs) have shown a positive effect of early integration of palliative care (EIPC) in various advanced cancer entities regarding patients’ quality of life (QoL), survival, mood, caregiver burden and reduction of aggressiveness of treatment near the end of life. However, RCTs investigating the positive effect of EIPC for patients suffering from glioblastoma multiforme (GBM) are lacking. After modelling work identifying the specific needs of GBM patients and their caregivers, the aim of this study is to investigate the impact of EIPC in this particular patient group.​Methods and analysisThe recruitment period of this multicenter RCT started in May 2019. GBM patients (n=214) and their caregivers will be randomly assigned to either the intervention group (receiving proactive EIPC on a monthly basis) or the control group (receiving treatment according to international standards and additional, regular assessment of QoL (‘optimised’ standard care)).The primary outcome is QoL assessed by subscales of the Functional Assessment of Cancer Therapy for brain tumour (FACT-Br) from baseline to 6 months of treatment. Secondary outcomes are changes in QoL after 12 (end of intervention), 18 and 24 months (end of follow-up), the full FACT-Br scale, patients’ palliative care needs, depression/anxiety, cognitive impairment, caregiver burden, healthcare use, cost-effectiveness and overall survival.​Ethics and disseminationThe study will be conducted in accordance with the Declaration of Helsinki and has been approved by the local ethics committees of the University Clinics of Cologne, Aachen, Bonn, Freiburg and Munich (LMU). Results of the trial will be submitted for publication in a peer-reviewed, open access journal and disseminated through presentations at conferences.Trial registration numberGerman Register for Clinical Studies (DRKS) (DRKS00016066); Pre-results.

Published
2020

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