Yong, J. (J.)

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    Redefining palliative care-a new consensus-based definition
    (Elsevier, 2020) Goh, C. (Cynthia); Wee, B. (Bee); Connor, S. (Stephen); Leng, M. (Mhoira); Pettus, K. (K.); Moine, S. (Sébastien); Gómez-García, W. (Wendy); Buitrago, R. (Rosa); Harding, R. (Richard); Marston, J. (Joan); Yong, J. (J.); Centeno, C. (Carlos); Davaasuren, O. (Odontuya); Spruijt, O. (Odette); Knaul, F. (Felicia); Larkin, P. (Phillippe); Cege-Munyoro, E. (Esther); Ali, Z. (Zipporah); Lima, L. (Liliana) de; Radbruch, L. (Lukas); Woodruff, R. (Roger); Venkateswaran, C. (Chitra); Burla, C. (Claudia); Wenk, R. (Roberto); Cleary, J. (Jim); Blanchard, C. (Charmaine); Callaway, M. (Mary); Puchalski, C. (C.); Spence, D. (Dingle); Bhatnaghar, S. (Sushma); Pastrana, T. (Tania); Foley, K. (K.); Bruera, E. (Eduardo); Downing, J. (Julia); Rajagopal, M.R. (M. R.); Osman, H. (Hibah); Khan, Q.T. (Quach T.); Luyirika, E. (Emmanuel)
    Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.
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    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
    (Mary Ann Liebert, 2018) Mosoiu, D. (Daniela); Pettus, K. (K.); Yong, J. (J.); Garralda, E. (Eduardo); Sitte, T. (T.); Centeno, C. (Carlos); Bruera, E. (E.); Callaway, M. (M.); Lima, L. (Liliana) de; Puchalski, C. (C.); Comoretto, N. (Nunciata); Rhee, J.Y. (John Y.); Foley, K. (K.); Alsirafy, S. (S.); Rajagopal, M.R. (M. R.); Luyirika, E. (Emmanuel)
    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.
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    White paper for global Palliative Care advocacy: recommendations from a PAL-LIFE expert advisory Group of the Pontifical Academy for Life, Vatican City
    (Mary Ann Liebert, 2018) Mosoiu, D. (Daniela); Pettus, K. (K.); Yong, J. (J.); Garralda, E. (Eduardo); Sitte, T. (T.); Centeno, C. (Carlos); Bruera, E. (E.); Callaway, M. (M.); Lima, L. (Liliana) de; Puchalski, C. (C.); Comoretto, N. (Nunciata); Rhee, J.Y. (John Y.); Foley, K. (K.); Alsirafy, S. (S.); Rajagopal, M.R. (M. R.); Luyirika, E. (Emmanuel)
    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.