Review of European guidelines on palliative sedation: a foundation for the updating of the European Association for Palliative Care framework

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

Contextualizing Violence Prevention – How Contextual Aspects Influence the Implementation of a Violence Prevention Initiative in Prisons and Psychiatry

The aim of this study was to investigate which contextual aspects and mechanisms are decisive in the implementation of an integrated, tailored intervention to prevent violence and threats of violence from patients or inmates towards employees in psychiatric units and in prisons and detention centers. Based on a standardized implementation degree assessment of fidelity, reach and dose delivered, we selected two workplace cases from each sector, one with a high and one with a low implementation degree. Using a realist evaluation framework, we conducted a thematic analysis of the four selected workplace cases to identify prevalent contextual aspects and mechanisms underlying the implementation degree. We found that prioritization, synergy with parallel change processes, and intervention fit, were decisive mechanisms for the successful implementation of the intervention. We also found that lack of resources (staff instability, insufficient time, poor mental resources) and resource-demanding parallel change processes, were contextual aspects that “blocked” all mechanisms. That is, when resources were not available, none of the mechanisms for implementing the intervention was activated. Our findings point to the importance of investigating the role of contextual aspects when assessing the effectiveness of organizational interventions

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Contains fulltext : 187811.pdf (publisher's version ) (Open Access

To what extent are the wishes of a signatory reflected in their advance directive: a qualitative analysis

Background: Advance directives (ADs) are assumed to reflect the patients' preferences, even if these are not clearly expressed. Research into whether this assumption is correct has been lacking. This study explores to what extent ADs reflect the true wishes of the signatories. Methods: Semi-structured interviews (INT), pretest. Transcribed INT and the contents of ADs were inductively categorised (Mayring) and triangulated. Software: MAXQDA 2007. Participants: Patients receiving palliative care (PPC), healthy (H) and chronically ill (CI) individuals with an AD completed >= 3 months prior to recruitment. Results: Between 08/2008 and 07/2009, 53 individuals (20 H, 17 CI, 16 PPC) were interviewed (mean age 63.2 years (55-70 years)), 34% male). Most important (in) consistencies between preferences as expressed in INT compared to ADs included preconditions for termination/rejection of life-sustaining measures, refusal of/demand for medical interventions and the nomination of proxies. Standardized AD forms were rarely tailored to the individual. We found a high tendency to use set phrases, such as want to die with dignity or do not want to suffer/vegetate. Likely events in the course of an existing progressive disease were not covered, even in ADs of PPC close to death. Conclusions: Only some of the incongruities between verbally expressed preferences and the contents of the AD can be put down to use of standardized forms or lack of medical knowledge. Nevertheless, the non-involvement of a doctor in the process of making an AD must be seen as potentially problematic and seeking medical advice should be promoted by politics and physicians. Standardised forms should encourage amendments and present space for free text entries for all aspects covered. Set phrases need to be defined by the individual to enable them to be translated into a specific course of action