L'action du Collectif revêt deux formes. La première est un réseau d'accompagnement qui, alerté par les services funéraires municipaux dès qu'ils ont connaissance des funérailles d'une personne isolée, se mobilise selon les disponibilités de chacun pour être présent. L'objectif étant que nul ne soit inhumé sans une présence citoyenne et fraternelle. La deuxième consiste en l'organisation d'une cérémonie annuelle sous la présidence du maire. Il s'agit de rendre hommage à toutes les personnes accompagnées l'année précédente.
The need for comprehensive palliative care is inevitable with the aging population. Incorporating home-based palliative care is a new frontier within healthcare. The purpose of this study was to embed home-based palliative care services within the visiting nursing association (VNA) at a health system in Pennsylvania, examining effect on quality of life and symptom control, and average number of hospital admission days. A convenience sample of patients with one or more chronic conditions was selected from the existing VNA census (n = 22). A series of topics were outlined for discussion at each weekly visit for the pilot length of up to 6 months, scripted by evidence-based guidelines from the ENABLE II: Charting Your Course booklet (). A pretest/posttest survey method was conducted by utilizing results of the Edmonton Symptom Assessment System (ESAS) and the National Comprehensive Cancer Network Distress Thermometer. The effectiveness of the program was assessed using Spearman correlation to compare the difference in scores to the number of weeks in the program. The average number of hospital admission days during the pilot period was compared with admission days 6 months before enrollment in the pilot using the Wilcoxon signed-rank test. A significant relationship was found between the number of weeks in the program and reduction in the total ESAS symptom scores (rho = -0.484, p = .022), indicating that a reduction in symptoms was significantly more likely the longer a patient was in the program. Percentage of patients hospitalized decreased from 86% during preintervention period to 32% while enrolled. There was a noted reduction in the average number of days patients spent in the hospital while enrolled in the pilot (z = -2.24, p = 0.025).
COVID-19 continues to impact older adults disproportionately, from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these needs have focused attention on how resources are ultimately allocated and used. Some strategies misguidedly use age as an arbitrary criterion, which inappropriately disfavors older adults. This statement represents the official policy position of the American Geriatrics Society (AGS). It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations to consider when developing strategies for allocating scarce resources during an emergency involving older adults. Members of the AGS Ethics Committee collaborated with interprofessional experts in ethics, law, nursing, and medicine (including geriatrics, palliative care, emergency medicine, and pulmonology/critical care) to conduct a structured literature review and examine relevant reports. The resulting recommendations defend a particular view of distributive justice that maximizes relevant clinical factors and de-emphasizes or eliminates factors placing arbitrary, disproportionate weight on advanced age. The AGS positions include: (1) avoiding age per se as a means for excluding anyone from care; (2) assessing comorbidities and considering the disparate impact of social determinants of health; (3) encouraging decision makers to focus primarily on potential short-term (not long-term) outcomes; (4) avoiding ancillary criteria such as "life-years saved" and "long-term predicted life expectancy" that might disadvantage older people; (5) forming and staffing triage committees tasked with allocating scarce resources; (6) developing institutional resource allocation strategies that are transparent and applied uniformly; and (7) facilitating appropriate advance care planning. The statement includes recommendations that should be immediately implemented to address resource allocation strategies during COVID-19, aligning with AGS positions. The statement also includes recommendations for post-pandemic review. Such review would support revised strategies to ensure that governments and institutions have equitable emergency resource allocation strategies, avoid future discriminatory language and practice, and have appropriate guidance to develop national frameworks for emergent resource allocation decisions.
COVID-19 continues to impact older adults disproportionately with respect to serious consequences ranging from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these issues have focused attention on how these resources are ultimately allocated and used. Some strategies, for example, misguidedly use age as an arbitrary criterion, which disfavors older adults in resource allocation decisions. This is a companion manuscript to the American Geriatrics Society (AGS) position statement, "Resource Allocation Strategies and Age-Related Considerations in the COVID-19 Era and Beyond." It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations that should be considered when developing strategies for allocation of scarce resources during an emergency involving older adults. This review presents the legal and ethical background for the position statement and discusses the following issues that informed the development of the AGS positions: (1) age as a determining factor; (2) age as a tiebreaker; (3) criteria with a differential impact on older adults; (4) individual choices and advance directives; (5) racial/ethnic disparities and resource allocation; and (6) scoring systems and their impact on older adults. It also considers the role of advance directives as expressions of individual preferences in pandemics.
Lucie a quatre ans de moins que Camille, sa soeur chérie. Elles ont perdu leur père et elles s'adorent. Camille a un cancer du pancréas, rare, fulgurant, elle meurt. C'est une conversation d'amour déchirant les souvenirs heureux, le cauchemar, puis la chute. Lucie sera sauvée par la bienveillance d'une association d'aide au deuil pour les jeunes, une résurrection.
Evidence-based advocacy within the United Nations system for integration of palliative care into primary health care is essential to inspire and nurture the political will necessary to support the development and funding of national palliative care policy. National policy is, in turn, essential to underwrite clinical delivery that leaves no patient behind. Although International Association for Hospice and Palliative Care (IAHPC) has engaged in advocacy since its inception, the board decision to prioritize advocacy as part of the organization's strategic plan has taken it to a more formal level. This piece summarizes the content of the basic advocacy course released for IAHPC members, defines palliative care and advocacy, distinguishes advocacy from lobbying, discusses how an international organization such as the IAHPC advocates for palliative care at the global level, and clarifies the vital feedback loop between advocacy and clinical practice.
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 the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-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 (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care 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. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
L'attention au temps des commencements comme à celui de la fin est un enjeu pour notre société. Ces temps sont des moments où la fragilité est un paramètre premier qui requiert l'attention de tous. Nommer un être qui naît est essentiel, nommer un être qui meurt est bien souvent oublié. Dans ce domaine au-delà des soins palliatifs, notre association tente de promouvoir la culture palliative. Elle veut produire des messages d'alerte et de témoignage.
Le nombre de morts inattendues du nourrisson (MIN) a beaucoup diminué au cours des années 1990, mais les chiffres stagnent actuellement, alors que de nombreux décès seraient encore évitables. L’association Naître et vivre participe activement depuis plus de trente ans à sa prévention et œuvre, en collaboration avec les centres de référence de la MIN, à la création et à la diffusion d’outils de prévention multiples qui ont évolué au cours du temps.
Building on the strong work of previous research agendas (2009-2012, 2012-2015, 2015-2018), the Hospice and Palliative Nurses Association Research Advisory Council developed the 2019-2022 Research Agenda in consultation with Hospice and Palliative Nurses Association (HPNA) membership and assessment of major trends in palliative nursing. The HPNA Research Advisory Council identified 5 priority areas and asked subject experts in each area to summarize the state of the science, identify critical gaps, and provide recommendations for future research. This document expands the executive summary published on the HPNA website (www.advancingexpertcare.org/hpna/) and provides supporting evidence for the 2019-2022 recommendations. The 5 priority areas are as follows: (1) pediatric hospice and palliative nursing research; (2) family caregiving; (3) interprofessional education and collaborative practice; (4) big data science, precision health, and nursing informatics; and (5) implementation science.
A consensus document on early palliative care was produced by a committed Working Group of the Italian Society of Medical Oncology and the Italian Society of Palliative Care to improve the early integration of palliative care in medical oncology and to stimulate and guide the choices of those who daily face the problems of advanced stage cancer patients. The simultaneous administration of antineoplastic treatments and early palliative care was shown to be beneficial in metastatic cancer pathway outcomes. Patients who could benefit from early palliative care are those with an advanced cancer at presentation, a compromised PS for cancer, and/or morbidities, and who are too frail to receive treatment. According to the Bruera practice models, in which the combination of cancer management with early palliative care can be offered, three groups of patients needing simultaneous care were identified and three different models of the delivery of palliative care were proposed. In patients with good prognosis and low need of simultaneous care, the solo practice model and the request for consultations were suggested, while in patients with poor prognosis disease with high need of simultaneous care and in conditions with high need of simultaneous care, regardless of cancer prognosis, the integrated care approach should be offered. Palliative care consultation services are seldom accessible in the majority of Italian hospitals; thus the application of various practice models depends on available resources, and a shared care model with the structures of palliative care operating in the area is often required.
Liliana de Lima, Executive Director of the International Association for Hospice & Palliative Care (IAHPC), begins by telling me about all the other people I should be interviewing. Her passion for her work and admiration for her colleagues run throughout our conversation, and it soon becomes apparent that the “emotional reasons and rational reasons”, as she calls them, have defined her career.
As the Royal College of Physicians polls its members in the UK this February, Sandy Buchman, the Canadian Medical Association's president elect, explains how accepting terminally ill patients’ autonomy led him to provide medical assistance in dying.
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Palliative care is patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Improving quality of life of patients and their families should remain critically important for any serious diagnosis. The goals of palliative care are demonstrated by the nine domains outlined by the American Association of Hospice and Palliative Medicine.
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Le bien-être du bénévole dans l'accompagnement comme la persistance de son engagement dépendent d'échanges entre lui et son association. Il est intéressant de mettre en lumière la nature de ces liens et les raisons de son utilité. La réflexion suit une sorte de chronologie qui démarre à la formation initiale, puis aborde les premiers accompagnements, pour explorer enfin les années d'accompagnement.
L'association a le devoir de considérer le bénévole comme l'ambassadeur d'une éthique, d'une bienveillance et d'une conscience ouverte à l'altérité. La démarche et l'exposition personnelle du bénévole doivent, en retour, trouver dans son association une reconnaissance légitimée par les différentes structures mises en place : coordinateur d'équipe, équipe de bénévoles, groupe de parole.
Les parents frappés par un deuil périnatal sont bien souvent confrontés à l’incompréhension et à la maladresse de leur entourage. Or, ils ont besoin de parler, d’être écoutés et respectés dans leur chagrin dès l’annonce du décès. L’accompagnement par l’association Agapa leur permet de parler de leur enfant, de rompre l’isolement dans lequel ils se trouvent, et ainsi d’avancer sur le chemin du deuil et de la reconstruction.
The aim of the study was to describe nursing students' reflections on caring for end-of-life patients in a youth volunteer service. A purposive sample of 11 nursing students in one province in China were interviewed and diaries were collected. The data were analysed using qualitative content analysis. The students described the service as "an empowering care that makes a difference - but not without challenges on different levels". The service was said to provide devoted caring adjusted to the person's need, condition and wishes. According to the students, the service had an impact on them; the internal and/or external support was stimulating and rewarding, whereas deficient support was frustrating and made them feel helpless. They emphasized the need for improvements at different levels. In conclusions, the youth volunteer service empowers both patients and students and can be seen as person-centred care. The students' professional knowledge, skills and ability improved, while these aspects were still perceived as deficient. Appropriate curriculum and training for nursing students are necessary and should be tailored to improving students' caring ability and confidence. Expanding the service was emphasized and suggestions for improvements were identified.
A long-running dispute over euthanasia between the Canadian Medical Association (CMA) and the World Medical Association (WMA) may have contributed to the CMA’s decision to resign from the global medical body, according to some Canadian doctors.
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Naître et Vivre est une association nationale créée en 1978 et reconnue d’utilité publique depuis 1991. Apolitique et non confessionnelle, elle accompagne les personnes en deuil de tout-petits. Elle œuvre notamment pour la prévention de la mort inattendue du nourrisson et soutient la recherche dans ce domaine. Le groupe de parole est l’une des formes d’accompagnement proposées par l’association aux familles endeuillées. L’écoute partagée dans cet espace aide à traverser ce temps de souffrance. Elle participe au processus de deuil qui favorise la reconstruction.