Brunsch, H. (Holger)

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    Review of European guidelines on palliative sedation: a foundation for the updating of the European Association for Palliative Care framework
    (Mary Ann Liebert, 2022) Menten, J. (Johan); Mosoiu, D. (Daniela); Payne, S. (Sheila); Rijpstra, M. (Maaike); Jaspers, B. (Birgit); Garralda, E. (Eduardo); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Csikos, A. (Agnes); Mercadante, S. (Sebastiano); Surges, S. M. (Séverine M.); Vanderelst, M. (Michael); Radbruch, L. (Lukas); Brunsch, H. (Holger)
    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 improve the quality of their content and the applicability of their recommendations.
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    Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study
    (SAGE, 2024) Menten, J. (Johan); Mosoiu, D. (Daniela); Payne, S. (Sheila); Cardone, A. (Antonella); Cherny, N. (Nathan); Jaspers, B. (Birgit); Garralda, E. (Eduardo); Hasselaar, J. (Jeroen); Fainsinger, R. (Robin); Centeno, C. (Carlos); Csikos, A. (Agnes); Mercadante, S. (Sebastiano); Surges, S. M. (Séverine M.); Radbruch, L. (Lukas); Preston, N. (Nancy); Brunsch, H. (Holger); Apostolidis, K. (K.); Van-den-Block, L. (Lieve); Ling, J. (Julie)
    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.
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    An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study
    (2022) Van-der-Elst, M. (M.); Payne, S. (Sheila); Arantzamendi-Solabarrieta, M. (María); Preston, N. (Nancy); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Belar, A. (Alazne); Jaspers, B. (Birgit); Brunsch, H. (Holger); Surges, S. M. (Séverine M.); Adile, C. (Claudio); Menten, J. (Johan)
    Background: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries. Methods: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in fve European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The frst full case will be analyzed by all researchers after being translated into English using a preprepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis. Discussion: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within diferent settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 diferent researchers in 5 countries, some diferences may occur which possibly makes it difcult to compare cases, but using a rigorous methodology will minimize this risk.
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    Decision-making about palliative sedation for patients with cancer: a qualitative study in fve European countries linked to the Palliative sedation project
    (Springer Nature, 2024) Van-der-Elst, M. (Michael); Payne, S. (Sheila); Arantzamendi-Solabarrieta, M. (María); Preston, N. (Nancy); Koper, I. (Ian); Belar, A. (Alazne); Brunsch, H. (Holger); Surges, S. M. (Séverine M.); Adile, C. (Claudio); Grassi, Y. (Yasmine); Cockshott, Z. (Zoe); Hasselaar, J. (Jeroen); Menten, J. (Johan)
    Background: Palliative sedation refers to the proportional use of titrated medication which reduces consciousness with the aim of relieving refractory suffering related to physical and psychological symptoms and/or existential distress near the end of life. Palliative sedation is intended to be an end of life option that enables healthcare professionals to provide good patient care but there remains controversy on how it is used. Little is known about decision-making processes regarding this procedure. The aim of this study was to explore decision-making processes in palliative sedation based on the experiences and perceptions of relatives and healthcare professionals. Methods: We conducted a qualitative interview study with dyads (a bereaved relative and a healthcare professional) linked to 33 deceased patient with cancer who had palliative sedation, in seven in-patient palliative care settings in five countries (Belgium, Germany, Italy, the Netherlands, and Spain). A framework analysis approach was used to analyse the data. Results: Two main themes are defined: 1) Decision-making about palliative sedation is a complex iterative process, 2) Decision-making is a shared process between the patient, healthcare professionals, and relatives. Decision-making about palliative sedation appears to follow an iterative process of shared information, deliberation, and decision-making. The patient and healthcare professionals are the main stakeholders, but relatives are involved and may advocate for, or delay, the decision-making process. Starting palliative sedation is reported to be an emotionally difficult decision for all parties. Conclusions: As decision-making about palliative sedation is a complex and iterative process, patients, relatives and healthcare professionals need time for regular discussions. This requires a high level of engagement by healthcare professionals, that takes into account patients' wishes and needs, and helps to facilitate decision-making.