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

Marco de Competencias Básicas de Investigación para Clínicos de Cuidados Paliativos RESPACC

El proyecto financiado por RESPACC ERASMUS+ identificará las competencias de investigación básicas para clínicos de cuidados paliativos. La noción de competencia se refiere a la capacidad de aplicar conocimientos, destrezas y habilidades para realizar con éxito una actividad en el trabajo. Nos enfocamos en mejorar las competencias de investigación básicas en clínicos de equipos multidisciplinarios de cuidados paliativos, tanto a nivel de equipo como individual. Algunas competencias podrían considerarse imprescindibles para realizar una investigación en equipo, pero puede que no sean imprescindibles para todos los miembros del equipo, porque podría ser suficiente que sólo alguien del equipo cuente con dichas competencias para que se lleve a cabo la investigación. OBJETIVO: Identificar un conjunto de competencias de investigación básicas, necesarias para que el equipo paliativo multidisciplinario pueda llevar a cabo un estudio clínico exitoso

Documento de posición oficial sobre la promoción global de Cuidados Paliativos: recomendaciones del Grupo Internacional Asesor PAL-LIFE de la Academia Pontificia de la Vida, Ciudad del Vaticano

Contexto: La Academia Pontificia de la Vida (PAV) es una institución académica de la Santa Sede (Vaticano) cuyo objetivo es promover una visión católica de la ética biomédica. La PAV invitó a una serie de expertos en Cuidados Paliativos (CP) de todo el mundo, de todas las creencias, a desarrollar recomendaciones estratégicas para el desarrollo global de CP (“Grupo PAL-LIFE”). Diseño: Trece expertos internacionales reconocidos por su actividad promotora global de CP participaron en un estudio Delphi on-line. En un proceso de cuatro rondas, se pidió a los participantes que identificasen los grupos de interés o instituciones claves para la promoción de CP y que propusieran, para cada uno de ellos, recomendaciones estratégicas para el desarrollo de CP. Cada ronda incorporaba los comentarios de las rondas previas hasta lograr el consenso en las recomendaciones más importantes. En una última fase, al grupo de expertos se le solicitó la jerarquización por importancia de los grupos clave en una escala de 1 a 13. También se solicitaron sugerencias concretas para la implementación de las recomendaciones. Mediante análisis clúster se ordenaron los grupos de interés en dos niveles de importancia para el desarrollo de CP. Resultados: Trece recomendaciones fueron seleccionadas como las más importantes (una por cada grupo clave). Las recomendaciones para los grupos mejor puntuados fueron: (1) Responsables Políticos: garantizar el acceso universal a los CP; (2) Academia: ofrecer cursos obligatorios de CP en el pregrado; (3) Profesionales sanitarios: promover una certificación adecuada; (4) Hospitales e Instituciones sanitarias: asegurar el acceso a medicamentos de CP; y (5) Asociaciones de CP: ser promotoras eficaces y trabajar con los gobiernos en la implementación de las recomendaciones internacionales sobre CP. También se presentan recomendaciones para los ocho grupos clave restantes. Discusión: Este documento representa la posición oficial de la PAV en lo que respecta a estrategias de promoción para el desarrollo de los CP en el mundo

White paper for global Palliative Care advocacy: recommendations from a PAL-LIFE expert advisory Group of the Pontifical Academy for Life, Vatican City

Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC (“PAL-LIFE group”). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world

Undertaking Research Using Online Nominal Group Technique:Lessons from an International Study (RESPACC)

Background: Nominal group technique (NGT) is a well-established research method for establishing consensus. Owing to the COVID-19 pandemic, research methods need to be adapted to engage with participants online. Objective: To determine the feasibility and acceptability of adapting NGT to an online format. Setting: Palliative care clinicians (n = 31) in Greece, Romania, and Spain. Methods: NGT discussions were used to elicit palliative care clinicians' opinions, and to rank priorities regarding their understanding and needs about clinical research. Preliminary online training of country-based facilitators was followed by content analysis of debriefing reports to capture learning related to the online NGT format. Results/Implementation: Three NGT sessions used online platforms (Zoom/MS Office/Mentimeter) for the meetings. Analysis of the facilitator reports generated three themes: preparation/facilitation/timing; optimizing technology; and interactions. Conclusions: Conducting NGT meetings online is viable and may be advantageous when compared with traditional face-To-face meetings, but requires careful preparation for participants to contribute effectively

A cost-utility analysis of a rehabilitation service for people living with and beyond cancer.

BACKGROUND: We conducted a wait-list control randomised trial of an outpatient rehabilitation service for people living with and beyond cancer, delivered in a hospice day care unit. We report the results of an economic evaluation undertaken using the trial data. METHODS: Forty-one participants were recruited into the study. A within-trial stochastic cost-utility analysis was undertaken using Monte-Carlo simulation. The outcome measure for the economic evaluation was quality adjusted life years (QALYs). Costs were measured from the perspective of the NHS and personal social services. Uncertainty in the observed data was captured through probabilistic sensitivity analysis. Scenario analysis was conducted to explore the effects of changing the way QALYs were estimated and adjusting for baseline difference in the population. We also explore assumptions about the length of treatment benefit being maintained. RESULTS: The incremental cost-effectiveness ratio (ICER) for the base-case analysis was £14,231 per QALY. When QALYs were assumed to change linearly over time, this increased to £20,514 per QALY at three months. Adjusting the estimate of QALYs to account for differences in the population at baseline increased the ICER to £94,748 per QALY at three months. Increasing the assumed length of treatment benefit led to reduced ICERs in all scenarios. CONCLUSIONS: Although the intervention is likely to be cost-effective in some circumstances, there is considerable uncertainty surrounding the decision to implement the service. Further research, informed by a formal value of information analysis, would reduce this uncertainty