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OBJECTIVE: With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a "tsunami of suffering." Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation. METHOD: We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame. RESULTS: Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies. SIGNIFICANCE OF RESULTS: The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers' capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.
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COVID-19 , Pandemias , Pessoal de Saúde , Humanos , Cuidados Paliativos , SARS-CoV-2RESUMO
OBJECTIVES: The COVID-19 pandemic and the measures taken to mitigate spread have affected countries in different ways. Healthcare workers, in particular, have been impacted by the pandemic and by these measures. This study aims to explore how COVID-19 has impacted on palliative care (PC) workers around the world. MATERIALS AND METHODS: Online survey to members of the International Association for Hospice and PC during the initial months of the COVID-19 pandemic. Convenience sampling was used. Statistical descriptive and contingency analyses and Chi-square tests with P < 0.05 were conducted. RESULTS: Seventy-nine participants (RR = 16%) from 41 countries responded. Over 93% of those who provide direct patient care reported feeling very or somewhat competent in PC provision for patients with COVID-19. Eighty-four felt unsafe or somewhat safe when caring for patients with COVID-19. Level of safety was associated with competence (P ≤ 0.000). Over 80% reported being highly or somewhat affected in their ability to continue working in their PC job, providing care to non-COVID patients and in staff availability in their workplace. About 37% reported that availability and access to essential medicines for PC were highly or somewhat affected, more so in low-income countries (P = 0.003). CONCLUSION: The results from this study highlight the impact of COVID-19 on the provision of PC. It is incumbent on government officials, academia, providers and affected populations, to develop and implement strategies to integrate PC in pandemic response, and preparedness for any similar future events, by providing appropriate and comprehensive education, uninterrupted access to essential medicines and personal protective equipment and ensure access to treatment and care, working together with all levels of society that is invested in care of individuals and populations at large. The long-term effects of the pandemic are still unknown and future research is needed to monitor and report on the appropriateness of measures.
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PURPOSE: This article describes the functioning of the international drug control system, its integration into national legislation and policy, and the collective impact on access to medicines. SOURCE: We conducted a review of the three international drug control conventions, peer-reviewed articles, and grey literature known to the authors that describes national and international drug control systems and their impact on access to controlled medicines. This review was supplemented with literature derived from a structured search of MEDLINE® for articles relating to medical uses of ketamine in low- and middle-income countries conducted to strengthen an advocacy campaign. We illustrate the impact of the drug control system on access to medicines through an analysis of current levels of availability of opioids in many countries as well as through a description of the ongoing advocacy work to ensure the availability of ketamine for medical care in low-income countries. PRINCIPAL FINDINGS: The complexity of the international drug control system, along with health providers' lack of knowledge regarding key provisions, presents a barrier to improving access to safe anesthesia care in low- and middle-income countries. Fifteen of the 46 essential medicines of potential relevance to perioperative care are listed under one or more of the schedules of the three international drug control conventions and, subsequently, are required to be under national controls, potentially decreasing their availability for medical use. CONCLUSION: Improving the capacity and quality of anesthesia care in low- and middle-income countries requires attention to improving access to controlled medicines. Anesthesiologists and others involved in global health work should collaborate with policymakers and others to improve national and international drug control legislation to ensure that attempts to thwart illicit drug trafficking and use do not compromise availability of controlled medicines.
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Anestesia , Controle de Medicamentos e Entorpecentes , Países em Desenvolvimento , Humanos , Assistência Perioperatória , Procedimentos Cirúrgicos OperatóriosRESUMO
This Review perspective analyzes the parallel 'opioid crises' - one of access, the other of excess - affecting different demographic groups in distinct regions of the world, in terms of a knowledge gap between the founding 20th-century regulatory frameworks around 'drugs', including opioids, and evolving 21st-century clinical developments in public health, palliative care, addiction medicine, and regulatory sciences. Identifying the parallel crises as such is a positive step that can enable governance and science to catch up to one another and realign. As it is now, the opioid crises are acting as brakes on development as defined by the United Nations (UN) 2030 Agenda for Sustainable Development (SDGs). Both crises affect UN member states' ability to reach the Goal 3 'Ensure healthy lives and promote well-being for all at all ages' of the Sustainable Development Goals (SDGs). Among the nine targets for Goal 3, the two opioid crises affect progress toward Target 3.5, on strengthening the prevention and treatment of substance abuse, including narcotic drug abuse, and Target 3.8, providing Universal Health Coverage (UHC), and adequate access to essential medicines. The parallel opioid crises, which both represent misalignment between anachronistic governance structures and epistemic developments, have several things in common beyond the opioid molecules themselves: regulatory and health system deficits that interact pathologically with baked in cultural stigma around psychoactive substances, stigma evident in the designation of these substances in international law as 'narcotic drugs'. Community regeneration, educational development, and governance reforms can now replace politicized rather than evidence-based and public health-promoting drug policies that block progress toward both SDG 3 targets in different countries for different reasons. Quantification of serious health-related suffering (SHS) pertaining to a range of health conditions and demographic groups now provides the epidemiological evidence to legitimate such a timely paradigm shift.
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The increasing incidence of oncological diseases creates a corresponding need for effective cancer pain management (CPM). The lack of access to and availability of opioid analgesics in most countries leads to avoidable suffering. This systematic review aims to identify barriers to accessing opioids, as described in literature that reflects the perspective of health-care workers. A systematic literature search was performed in May 2018 and updated in December 2022, using search terms related to "cancer pain," "opioid analgesics," "access," and "health-care personnel." Medline, Embase, and PsycInfo were searched. Forty-two studies met the inclusion criteria. Principal barriers that have hindered licit access to medical opioids include regulatory, systemic, educational, patient-related, and societal. These barriers are rooted in a lack of adequate education about the importance and significance of appropriate CPM. Barriers were often mutually reinforcing. A interdisciplinary approach is required to overcome them. This research contributes to the important global health issue of unduly limited access to opioid analgesics. It provides interdisciplinary solutions in terms of guidelines to ensure that governments respect, protect, and fulfill the right to the highest attainable standard of health, which includes the relief of severe pain.
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Dor do Câncer , Neoplasias , Humanos , Analgésicos Opioides/uso terapêutico , Manejo da Dor/métodos , Dor/tratamento farmacológico , Dor do Câncer/tratamento farmacológico , Neoplasias/complicaçõesAssuntos
Acessibilidade aos Serviços de Saúde , Cuidados Paliativos , Saúde , Política de Saúde , HumanosRESUMO
CONTEXT: Between 2000 and 2020 Open Society Foundations was one of very few funders that supported global palliative care development and advocacy. OBJECTIVES: To describe progress made in three priority areas-the integration of palliative care into public health systems, access to controlled medicines, and pediatric palliative care-during those 20 years. METHODS: Activities and developments between 2000 and 2020 on global integration of palliative care into health systems, access to and availability of controlled medicines, and pediatric palliative care are described and analyzed. RESULTS: Major progress has been made in each area. Whereas in 2000, integration of palliative care into public healthcare systems was on the agenda in just a few pioneering countries, by 2020 a global consensus had emerged that palliative care should be integral to all health systems including in universal health coverage and countries were increasingly taking steps to integrate it into national health systems. While limited availability of these medicines was barely recognized as a public health or drug control issue in 2000, it had become an important priority in global drug policy debates by 2020 and numerous countries had taken steps to improve access to these medicines. Pediatric palliative care, available mostly in a small number of wealthy countries in the 1990s, has seen rapid growth, especially in low- and middle-income countries, and now has a solid foothold in all world regions. CONCLUSION: Despite this progress, significant challenges remain as funding for palliative care advocacy is limited, the overdose crisis in the US has recently had a chilling effect on efforts to improve availability of opioid analgesics, and economic crises related to the COVID-19 pandemic create uncertainty over the future of universal health coverage.
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COVID-19 , Pediatria , Criança , Acessibilidade aos Serviços de Saúde , Humanos , Cuidados Paliativos , PandemiasRESUMO
Evidence-based advocacy underpins the sustainable delivery of quality, publicly guaranteed, and universally available palliative care. More than 60 million people in low- and middle-income countries (LMICs) have no or extremely limited access to either palliative care services or essential palliative care medicines (e.g., opioids) on the World Health Organization Model List. Indeed, only 12% of the global palliative care need is currently being met. Palliative care advocacy works to bring this global public health inequity to light. Despite their expertise, palliative care practitioners in LMICs are rarely invited to health policymaking tables - even in their own countries - and are underrepresented in the academic literature produced largely in the high-income world. In this paper, palliative care experts from Bangladesh, Colombia, Egypt, Sudan, Uganda, and Zambia affiliated with the International Association for Hospice & Palliative Care Advocacy Focal Point Program articulate the urgent need for evidence-based advocacy, focusing on significant barriers such as urban/rural divides, cancer-centeredness, service delivery gaps, opioid formulary limitations, public policy, and education deficits. Their advocacy is situated in the context of an emerging global health narrative that stipulates palliative care provision as an ethical obligation of all health systems. To support advocacy efforts, palliative care evaluation and indicator data should assess the extent to which LMIC practitioners lead and participate in global and regional advocacy. This goal entails investment in transnational advocacy initiatives, research investments in palliative care access and cost-effective models in LMICs, and capacity building for a global community of practice to capture the attention of policymakers at all levels of health system governance.
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Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Analgésicos Opioides , Humanos , Cuidados PaliativosRESUMO
The escalating global burden of serious health-related suffering makes the need for funded policies that integrate palliative care (PC) into the continuum of services more urgent than ever. Palliative specialists are uniquely positioned to merge their clinical expertise with empirical evidence to advocate for improved PC delivery. There is a vital feedback loop between advocacy and clinical practice that palliative specialists can leverage to influence key stakeholders and decision makers and bridge PC policy deficits. Sustained interdisciplinary partnerships are critical to evidence-based PC advocacy that addresses resource gaps, social injustice, and unmet and disparate needs. Although PC advocacy may appear optional or even frivolous at times, it is an essential skill for any practitioner working to improve care for seriously ill individuals and their families. This article highlights 10 pragmatic tips that palliative specialists can use to advocate for policy changes that enhance PC access and equity at institutional, local, national, and global levels.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Atenção à Saúde , HumanosRESUMO
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.
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Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidados PaliativosRESUMO
Section 2 of the 2019 World Health Organization Model List of Essential Medicines includes opioid analgesics formulations commonly used for the control of pain and respiratory distress, as well as sedative and anxiolytic substances such as midazolam and diazepam. These medicines, essential to palliative care, are regulated under the international drug control conventions overseen by United Nations specialized agencies and treaty bodies and under national drug control laws. Those national laws and regulations directly affect bedside availability of Internationally Controlled Essential Medicines (ICEMs). The complex interaction between national regulatory systems and global supply chains (now impacted by COVID-19 pandemic) directly affects bedside availability of ICEMs and patient care. Despite decades of global civil society advocacy in the United Nations system, ICEMs have remained chronically unavailable, inaccessible, and unaffordable in low- and-middle-income countries, and there are recent reports of shortages in high-income countries as well. The most prevalent symptoms in COVID-19 are breathlessness, cough, drowsiness, anxiety, agitation, and delirium. Frequently used medicines include opioids such as morphine or fentanyl and midazolam, all of them listed as ICEMs. This paper describes the issues related to the lack of availability and limited access to ICEMs during the COVID-19 pandemic in both intensive and palliative care patients in countries of all income levels and makes recommendations for improving access.
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Infecções por Coronavirus , Acessibilidade aos Serviços de Saúde , Pandemias , Pneumonia Viral , Analgésicos/uso terapêutico , COVID-19 , Infecções por Coronavirus/terapia , Cuidados Críticos/legislação & jurisprudência , Acessibilidade aos Serviços de Saúde/legislação & jurisprudência , Humanos , Internacionalidade , Legislação de Medicamentos , Cuidados Paliativos/legislação & jurisprudência , Pneumonia Viral/terapia , Nações UnidasRESUMO
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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Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Consenso , Humanos , Cuidados Paliativos , Qualidade de VidaRESUMO
We describe in this paper the story of the 'Buddy Groups' for bereaved people that were set up at Weston Hospicecare in 2008 and have endured ever since. The group have helped bereaved people to find meaning and value despite their grief. We observed that, through the strength of the relationships formed, people were able to recover well. Group members reported back to us the significant value they placed on being in a Buddy Group.
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The central principle of "balance" represents the dual obligation of governments to establish a system of control that ensures the adequate availability of controlled substances for medical and scientific purposes while simultaneously preventing their nonmedical use, diversion, and trafficking, two primary goals of the international control system. On the one hand, although strong opioids, including morphine, are absolutely necessary for the relief of severe pain, legitimate access to opioids for pain treatment and palliative care is lacking in the majority of the world's countries. On the other hand, in a few high-income countries with higher consumption of prescription opioids, diversion and nonmedical use are increasingly prevalent. This report presents examples of unbalanced systems and a joint statement from global and regional palliative care organizations to promote development of balanced systems for optimal public health outcomes. Although nonmedical use of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor to interfere in their legitimate medical use for patient care. As representatives of palliative care organizations, we urge heads of state to act and to take measures to ensure and restore balanced systems in their countries and call on public health leaders and regulators to work together.
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Analgésicos Opioides/administração & dosagem , Acessibilidade aos Serviços de Saúde , Dor/tratamento farmacológico , Cuidados Paliativos/métodos , Substâncias Controladas/administração & dosagem , Humanos , Morfina/administração & dosagem , Desvio de Medicamentos sob Prescrição/prevenção & controle , Transtornos Relacionados ao Uso de Substâncias/prevenção & controleRESUMO
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.
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Saúde Global , Cuidados Paliativos/organização & administração , Comitês Consultivos , Atitude do Pessoal de Saúde , Catolicismo , Certificação , Consenso , Técnica Delphi , Acessibilidade aos Serviços de Saúde , Humanos , Medicina Paliativa/educação , Cidade do VaticanoRESUMO
Resumen 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.